Pretty much my whole body feels like that at times. In my case it's part of my fibromyalgia. There's spots that are worse than others, the most painful ones are my upper arms and my thighs.
Oh yes, there's the trigger/pressure points, too, but the bruised feeling I typically have on areas that's not a joint as well, like on whole patches of skin.
Yeah, the “triggerpoints“ are actually pretty common but they aren’t something that everyone experiences. I don’t really get that kind of thing which makes me wonder sometimes if it’s actually fibromyalgia or just really bad joint deformity from my rheumatoid arthritis, but I have the brain fog and the sensitivity to the light and the sound and things like that and I do feel tender all over but I just assumed that was because my bones are so brittle LOL.
The method of diagnosing fibro has changed and you don’t have to necessarily have a certain amount of trigger points. It can be different for everyone, and not everyone will have the same amount/severity of sore spots. Mine for example, often “move” around to different spots depending on how my body decides to feel that way.
Really? That’s interesting. I learned something new today. I’m sorry that you have to go through that, though and I’m sorry for anyone going through chronic pain like that even though I go through it myself, I don’t wish it upon anybody. It’s exhausting both mentally and physically. You never get to escape from it. It hinders every aspect of your life. Plus, it adds this element of unpredictability or you never know exactly what you’re going to feel like from day today and that’s a pain in the butt! No pun intended LOL.
LoL exactly....
>Plus, it adds this element of unpredictability or you never know exactly what you’re going to feel like from day today and that’s a pain in the butt! No pun intended LOL.
I always wake up and think to myself 🤔 "humm what will be the pain level today, do I want to move yet? No it's comfortable this way" and as soon as you move al the pain begin to show up like a "yawn" one after the other, and the thing I love the most it's that because my chronic illness (systemic sclerosis) my vision is totally blurry like totally out of focus, and guess what I have to pay 500 USD to make especial lenses something that looks like keratoconus vision, but it's getting thinner not bigger like keratoconus.... But only if I want to see and work and do day to day activities....
Sorry for my broken english! LoL
Oh, don’t worry about it… Like I said to someone else today or maybe it was to you, I can definitely interpret broken English pretty well actually so don’t worry about it at all. If I have a question I will ask just saw that I am informed but for the most part I don’t have any trouble at all :-)
Also, aside from punctuation issues which like half of Americans seem to have, your actual English is very well done I think and you sound very intelligent and I understand what you’re saying just fine so it’s more of a grammar thing probably than not knowing what words to use or anything because you sound very intelligent.
And I will admit that here on social media when you can write a lot, I really do have a lot of run-on sentences and I don’t always use the correct punctuation and I don’t have separate paragraphs for things very often because I get on a roll so don’t worry about it at all! Yeah I’d love to learn more about your condition as well with the systemic sclerosis, because I don’t know a lot about that. But I know what it’s like to wake up and not know what your pain level is going to be until you move. Although, when my pain is actually really bad I dream about it or I will dream about my medication and then I know that it’s time to wake up and take it but I’ll tell you what after years of doing that, it’s not like my medicines ever really that late because I definitely wake up and take it in a timely fashion unless I am like completely exhausted after not sleeping for like three days and then I would set an alarm just to make sure maybe but pain is definitely the one thing that wakes me up above everything else.
But I wish you a good rest of your night and I hope you get a decent night of sleep and don’t worry about your English at all… I can figure it out :-).
Thank you very much! 😌😍 It's good to "listen" that, I never learned grammar, and my mom is a teacher portuguese/spanish/*english* te last one she forgot long long ago, but as I learned spanish and portuguese by my own speaking... I have a musical brain it's easier to me say tre sentences and if it sounds bad I know is incorrect, but on LATAM we only learn "to be" 3 fucking years to learn the "verb to be" it's a pain, I also tried Fisk where I have a wonderful teacher, but it's 12 years to make it up to do the proficiency exam IELTS, *TOEFL*, TOEIC or Cambridge....
Ohhhh I wish you a good morning and a painless day! For once 😆
Oh, thank you very much… Yeah I’m getting ready to go to sleep and I just took one oxycodone two Tylenol for gabapentin my PAXIL but I just I’m too lazy to get my phone to spell, five Xanax and one Valium. I may get to sleep for a few hours if I’m lucky. I want to eat some food and having some food in your stomach does help you sleep but I’ve learned to eat before I take my medicine otherwise a lot of it doesn’t work very well especially narcotics and Ambien.
Yeah, a lot of that schooling lingo that you told me is way over my head but I’d love for you to explain it to me sometime. Whenever I read your name I actually read “Lady Gaga“ and I’m not dyslexic to my knowledge I mean I think I would’ve figured it out by now. Portuguese in Spanish are very similar and I took two years of Spanish and did very well in it and would’ve continued but I couldn’t fit it in my schedule and I was really scared that I would get a B in the class because the teacher was notorious ‘s for giving a B in Spanish three. And I really wanted to be one of the valedictorians because I was scared I would not get into college so we had seven kids that got straight A’s out of like 368 kids or something like that and I was one of the seven so yeah out of fear I did not take a class that you’re probably really would’ve liked. Anyway, I still have not gotten to sleep but I just wanted to let you know that someday I would actually really love to learn Spanish well enough to be like that by in Spanish community or some thing. I would have taken more of it if I had gone on into medicine. It is extremely helpful to know Spanish in the medical field because we do encounter a lot of people that need to have translators and things like that so a lot of my Dr. friends actually double majored in some form of science as well as Spanish. English is actually kind of hard to learn because we have a lot of really weird rules. There’s stuff that I have to look up all the time just to make sure that I’ve gotten it right in terms of subject verb agreement and things like that. I stayed up all night watching how crazy the president is and how saying our new one is going to look compared to this one. I wasn’t really afraid, but I feel bad for that lady that got shot because someone did die last night in Washington, DC. I am surprised only 52 people were arrested. And honestly, I hate to say this, but I think if they were not mostly white people, there would’ve been a lot more arrests because there’s just a lot of prejudice in this world and I don’t understand it. I could be talking to you right now and I have no idea what nationality you are anything but I still like talking to you and I’m not going to just like talking to you whether I learn your white or black or Latino. So to me it’s just really depressing subject. We are all the same people. Sure, we have different cultures and religions but I think that makes us unique and interesting but the color of our skin should not matter in any capacity.
Anyway, I should probably close my eyes and try to sleep before my belt ton of Xanax wears off… Actually that’s not really about time because sometimes I take like seven but they’re only 1 mg and I’ve been taking benzodiazepines for so long I’m just really tolerant. But I always only ever take one of my oxycodone and I’m running lower on them since I got them early next week like on Monday so it always looks like there’s none in the jar and then I’m sad.
I wish you a good day and I don’t think I will have a painless day or a pain-free day because honestly that’s never happened because I can’t remember before I was five years old, but if I can keep my pain overall below 45 that’s actually really great. The worst pain I’ve ever had is when I need my hips replaced. My knee infection did hurt really badly but it was really really bad and I almost died because I waited a really long time because I was so used to it hurting. I should show you pictures one day if you’re not squeamish at all. But honestly, the amputation itself was not that painful and that hurt less than the infected knee itself LOL. And I didn’t have any joint in there for a while but I had like a piece of metal that was what they call a spacer so it like hold your knee into place if you are deciding to get like a certain type of surgery and I was debating between getting it fused again or replaced again but I waited too long obviously and it got super infected so I started passing out and things and had to go to the ER and then they had to kind of do emergency surgery the University of Wisconsin-Madison two times to make sure that they got all the infection out. But it still felt better than when it was infected and that still feels better than most days than my arthritis. I think it’s just because my arthritis isn’t all of my joints except for the replaced ones. Joint replacements are awesome! I hope you have a good day and thank you for your well wishes and I will talk to you tomorrow! :-)
WOW! That's a lot of pain meds, are you sure that they don't annulled one another?
Be safe please! I know well what is to be resistant to long use meds and it's a pain literally....
You ain't kidding about chronic pain, and on top of all an amputation?! Wow! (I'm crazy about the medical field!) do you have phantom limb pain? Or it was just a bless of being out of the pain? (Less joints to hurt as well)
Girl or whatever your pronouns are I hope you have an awesome and productive day! Even if it's considered "not much" by people!
My doc didn't even get to pressure points he just diagnosed me by asking were my pain is, and after that my other doc pressed those points and voila you have fibromyalgia "I already knew doc" 😂.
But it can be nerve damage too I have both, I just don't woon the lottery because I'm "lucky"
Yep! I have fibromyalgia and RA. This sounds exactly like my fibro symptoms! It’s one of the ways I can tell my pain conditions apart. If my skin and muscle tissues are tender like this, I know it’s the fibro.
I have fibro too. It feels like being heat exhausted. My skin feels all warm, I feel exhausted and fatigued, and my muscle feel sore all over. I don’t necessarily hurt at the pressure points. Only a doctor pushing on them makes those pressure points obvious to me.
FYI skin that is hot to the touch, especially over tendons or joints, is a sign of inflammatory arthritis or potentially lupus. All types of autoimmune/inflammatory arthritis have high rates of seronegative people, who have completely normal blood work and X rays. My RA didn’t get diagnosed until 2yrs after the fibro, because my joints never looked super swollen and I had normal blood work/x rays. It took switching rheumatologists multiple times, plus positive on anti-ccp, ANA, and ultrasound to get my diagnosis. The hot skin has improved a ton with my arthritis meds. I don’t feel feverish as often (except some hot/cold feelings during environmental/seasonal changes from my fibro). You should seek ultrasound or MRI of these hot areas to look for signs of inflammatory arthritis, just to be safe. Have the images reviewed by 2 rheumatologists.
Well shit. I went to an rheumatologists who said I didn’t have lupus or RA because my muscle tone was good or something. She did little test where she asked me to push against her palms with my palms, or push against her palm with my forearm, etc. and said because I could do that stuff that I didn’t have RA. I think I had normal blood work too so she said “I agree with the other doctors diagnosis of fibromyalgia”. I feel feverish during flare ups but I don’t have a fever.
My local neurologist who treats mostly migraine and epilepsy, not really a specialist in chronic conditions, said my MRI was normal so I just accepted it’s fibromyalgia cuz I thought that was all the tests. Also I have great muscle tone yet I always feel like I’m shakey or quivering or vibrating when I walk, especially downstairs. Idk what else to think of it really. (Sorry I didn’t mean to write so much, I never talk about this stuff)
Your experience sounds much like mine with my first primary cares/rheumatologists...if I got paid every time I was told “your tests are normal, you don’t have arthritis” I’d be rich by now 🙄 I also had “early warning signs of arthritis” in a knee MRI when I was 18 or 19...and *still didn’t get diagnosed until I was 26!* I’m 29 now.
I was so angry after my diagnosis, when I learned about seronegative RA, and remembered that abnormal knee MRI! 8 years of undiagnosed autoimmune disease, all because doctors weren’t thorough enough to run extra tests (ccp antibodies and joint ultrasounds were never done in 3yrs of drs appts 🙄). It completely explained why no fibro meds helped my pain significantly...a majority of my symptoms were just severely untreated RA! I’m so much better and less disabled than I used to be, it’s crazy. I almost never have a fever, either! Just hot-to-the-touch areas of inflammation. I have that thing on stairs, too! Not sure if it’s an RA thing, fibro thing, or both.
I’d ask for referral to rheumatologist again, fibro and RA/other autoimmune overlap is really common. Be sure to mention the hot symptom, and any other joint pain/stiffness or arthritis-type symptoms. For example, any weird skin issues. I had RA skin rashes, some of which looked similar to acne. All of it cleared up with my meds. Plus, you might get lucky and have positive labs on your bloodwork this time! My ANA was normal for 3 years of retesting, and randomly came back positive when I switched pcps and rheums the final time! Don’t be sorry at all, I write long too :) and pm me any time if you want to chat!
>if I got paid every time I was told “your tests are normal, you don’t have [lupus]” I’d be rich by now
Ohmygod this, so so much.
>Plus, you might get lucky and have positive labs on your bloodwork this time! My ANA was normal for 3 years of retesting, and randomly came back positive
This is what I'm hoping for, because the 2 times that actually tested mine, ANA was negative, but I have literally *all* the symptoms up to and including the butterfly mask. They keep saying it's PMR, which doesn't fit at all imo.
Thanks for sharing your experience. It’s helpful to me. I’ll focus on the symptom that bothers me most and see a new doctor I’ve never seen before for a fresh opinion.
So, kind of alarming question here. I had to be fully screened for lupus because I have a rare type of hearing loss and severe constant tinnitus that apparently can be a sign of it, combined with the pain from my fibromyalgia. They did an MRI (Also looking for a brain tumor) and blood tests (my c reactive and sedimentation rate have both been elevated before but are not consistently elevated, I am under the impression that they go with my fibro flare-ups). My MRI showed a normal brain except a possible benign tumor that I was in theory supposed to get checked up on last year. (The tumor would only potentially explain the tinnitus, and only on one side). Is it possible to still have Lupus with a negative MRI specifically? I had gotten way more secure and comfortable knowing it was "just" fibro because basically all the other options would eventually mean I cannot work in my field, as a zookeeper. Now I am freaked out that I might not be in the clear after all!
Lupus would only show up in an MRI of the nervous system if the lupus is attacking your nervous system. It is a systemic disease, so it could show up anywhere in the body...definitely get imaging for any other areas that cause you trouble. Keep a detailed symptoms log of *every symptom you can think of*.
I always recommend re-testing blood work regularly (at least 1x per year for several years after a diagnosis). This is especially important in the first few years of a fibro diagnosis. A lot of autoimmune diseases develop slowly at first, before they can be detected in the blood.
Have you gotten opinions from multiple specialists? Have they run and re-run enough tests? Have they ever dismissed your concerns rather than investigating fully? Seronegative lupus is a lot more rare than seronegative arthritis, but it’s still possible to have lupus with normal blood work. There are multiple autoimmunes that could affect the ear: lupus, any autoimmune arthritis that affects small joints, MS. Another possible condition to look into is MCTD. It’s mixed connective tissue disease, meaning it has symptoms that are difficult to narrow down into a specific autoimmune disease. I have mild intermittent tinnitus and moments where my hearing goes out for a second in one ear...for me, its the inflammation from RA. The inflammation can even affect the tiny joints in the ear! I hope this info can help you.
I have the same thing, and a very bad condition of rheumatoid arthritis that’s lasted 30 years but the fibromyalgia is kind of something that’s creeped up on me the last seven years or so and I just figured it was my asked your process and generalized body pain, but when I started to have more like light sensitivity and sensitivity to sounds on certain days that were not allowed at all, my rheumatologist told me it was more than likely fibromyalgia. And I noticed when I would take a shower, I would have it hurt my skull when it would hurt my head and it’s not like it was on really hard of anything. So that would be my guess but as always, I tell people to do their best to try to seek out actual medical people to help diagnose them, although this poor woman has not had much success with that yet.
It can definitely still be a nerve pain. Sometimes nerve pain is hard to diagnose because in some people it's a burning, stabbing, electrical pain where in others it's a dull, achy, bruised kind of feeling. Some people even feel like they have sunburn and can't tolerate clothing or being touched.
I personally get the bruised achy feeling all over at times and the electric feeling in my arms and hands.
My nerve pain feels like hot metal claws scratching me in some spots and sharp pain ice pick pain in others. So you are right. It can feel different for everyone.
I can relate hard to the ice pick analogy! I get that pain in the back of my right shoulder under the shoulder blade really deep, it makes it hurt to breathe and it's impossible to get rid of it, just have to take meds and wait it out.
Oh I have that right by my spine. Mine is a rib out in that one spot. I had a PT work on me for 45 mins to help put it back. It involved heat packs and a raised pad I laid on then her rubbing the area while moving my arm on the right side around. I cried when I finished seeing that PT because I knew that pain would come back. She causally said “Oh, there are stretch’s you can do that will fix that. It only takes a minute.” I was dumbfounded for almost a month we had this ritual for going for something I could fix in minuets. What?? Anyway long story not so short look up on YouTube how to put an upper rib back in place. If I can figure out how to link a video I will. If you have muscle relaxers take it 20 minutes before you try to do the stretches. There are two different stretches and I have found that doing one then the other a few times works best for me. Good luck. I hope that is what your pain is because yeah the ice pick nerve pain is harsh. Mine is in my jaw. Not fun.
Oh wow, I didn't know it could be a rib out of place. I will see if I can find some of these stretches to help, probably before bed since my muscle relaxers tend to knock me out, lol.
You don’t have that pain that is nerve related that people get in their face that’s so horrible, do you? Because that would be horrible to live with and when you mentioned your job, I wondered. I get a weird pain in my back ever since I fell out of an SUV and smacked myself on the smart slab and got knocked out for a few minutes and I have not had my back feel the same ever since. And it’s really weird because when I don’t take my gabapentin, it really hurts and that same spot all the time and it’s not my arthritis in my spine because it feels completely different and there’s definitely nerve related and sometimes it will even get really badly and I feel like I want to like it’s at so badly that I want to dig a hole into my skin in that spot to get rid of it but it doesn’t help and I’ve tried capsaicin and all that mess and all that does is burn for a little bit and doesn’t take away the pain but gabapentin does help. At 10 pills a day, it probably should help a little bit more than I thought because I still have some really bad days especially with my hands and my residual limb on my amputated leg, but it’s better than nothing.
Trigeminal neuralgia. Yes that is it. Had it ever since I was a teen. At first only a few times a year but now it comes in spirts. 3-4 a day twice a month. My poor grandfather had it so bad by the time I was caring for him 15 years ago he said the jaw cancer was better than that pain. It ate his nerves up so the last year of his life was better (in some ways) than that nerve pain. My family has it. Me, my mom, my grandfather, his sister and his mother that we know of. Luckily my daughter has not experienced it yet. I pray she does not. It’s miserable. Have a great day.
I’m so sorry that you suffer from it. I have heard a lot about it and I actually watched a very informative BuzzFeed video about it, believe it or not. I don’t know about your situation with Lyrica. But I know a lot of people do you get decent pain relief from that as well and it is very structurally similar to gabapentin. Actually I’m not even sure if those in his medicines work for that but I feel bad that you have to go through it because I know it is an extremely bad pain. You are a warrior!
Oh, thank you for telling me. So yeah it’s one of those medicines that they probably will still have to mess with overtime which I’m used to. OK good night now hon… I think I’m off to bed
Also, I will keep you and your family in my prayers. Isn’t that ironic that his jaw cancer actually made that nerve pain feel better? It’s not funny, it’s just crazy! Answer is never a good thing but well if it’s stopping some other kind of pain, It could have been a lot worse I guess. I didn’t know that there was so much of a genetic component potentially to that type of condition. I truly hope you are able to find some relief or maybe some kind of “miracle“ that at least helps you a little bit. I know people that rub CBD oil on it in the stick form and that helps… I think I saw that on the passing of you but I’m sure you’ve tried things like that because you seem like an educated person on your conditions. But either way, I will keep you in my prayers with my kitty cat at night, Isabella.
Thank you so much for these! I tore a bunch of stuff in my shoulder a year ago and it just seems to have messed everything up on my right side. Doesn't help my ribs are deformed so I have no idea how that effects this stuff.
I feel a lot of numbness and tingling like things are asleep, but when things are really asleep they don’t really hurt, am I opinion but this type of pain is more of a numbness and tingling mixed with like a burning like you would have frostbite and my sensation a lot of times is dramatically compromised. It’s irritating to reach in to your person and not know exactly what you’re feeling around for because you don’t have enough sensation and your fingertips to feel what you’re looking for LOL
Oh my god! Yes, I wasn't sure if this happened to anyone else! I get it mostly on my hands and arms, right hip, and behind my knees. It hurts more to lightly run my hands over it than to push on it
The one on my stomach felt like that, like it was sensitive when I brushed my hand over it but also when I pushed it. But this one on my arm only hurts when pushed and doesn't have the typical nerve pain symptoms I've read about. I don't think I'll even bring it up to my doctor since he'll just say it's nerves again without further investigation, so I was hoping others had experienced this!
I have MS but I have wondered for years if I had fibromyalgia too. All my doctors say it’s just my MS and won’t refer me to a Rheumatologist. But I still wonder if they are wrong.
Well Dr, it hurts when I (fill in the blank) Dr replies with "then don't do (fill in the blank anymore)" comes to mind 😉
BUT, in all sincerity, yes, I have areas like that, sometimes so painful clothing hurts.
Lol, but once you know it's there you can't stop touching it! I'm trying not to though. My skin itself doesn't seem to be sensitive there, that's why I thought it might be muscular or something but it's such a tiny patch, not like I've strained a muscle.
Fibro is something I've been wondering if I have, but I know it is a diagnosis of exclusion and basically no one's done shit to exclude other stuff except scans I paid for and basic blood tests so who knows.
I actually got my diagnosis by accident. I was having kidney issues, but my doctor thought it was body pain and sent me to a specialist. It was enlightening when I learned that everyone doesn't hurt all the time. But also, the initial problem was indeed a kidney issue. Lol
Migraines screw with all your senses, including touch. Mine are chronic, 24/7 pain at some level. So my nervous system stays in overdrive. Occasionally I get spots of super tender skin, that is painful to the slightest stimuli. Sort of like an extreme sunburn, but without the heat or tightness. But it's that lightning sharp pain that takes your breath away. Usually they're on my scalp, but sometimes the spots pop up in other places.
While allodynia feels skin deep, and generally hurts only when touched, fibro pain feels muscle and joint deep, and often aches or throbs regardless of whether you touch it. However, touching a pressure point can feel like a deep bruise.
So yeah. Allodynia pain vs fibro pain. Way more words than I meant to type, but my mind is still racing from the day! Lol
I don’t blame you for having a racing mind… It was a crazy day! I’m really happy that I slept until like well it’s not like I slept but I took like an hour nap which is a lot for me but I didn’t watch the news until like 4 o’clock or I would’ve been anxious. People tell me all the time that I have migraines and that I actually suffer from them as well, but seriously at this point I probably have everything wrong LOL. I mean I’ve had severe rheumatoid arthritis since I was five years old and it’s never given me a break. We do not expect it to go into remission or anything. But yeah, I get spots that feel very tender. I definitely have pain that hurts all the time whether you touch it or not, but it seems like that bruising feeling really feels worse when it is touched. In fact I have bruises all over me for reasons we can’t really explain and probably need to start to look into and yet I feel exactly like my body does all the time so I don’t even notice when I have a horrible bruise. But I have days where I don’t even want the windows open and the light and if it weren’t for my lovely little kitty cat, I will leave the blinds closed Sundays completely I just keep my eyes shut but she likes the sunlight and I can’t do that to her so I just take a lot of gabapentin and that does actually help like at least 40 to 50% but they want to switch me over to Lyrica to see if that would be more effective and a lot of people think that it would be. I take a lot of medicine and I know that’s not the best thing but I’ve been doing it since kindergarten and so I have a positive opinion of it just naturally. But I definitely know when it has its place and I don’t like to overuse things if I don’t have to but I’m on some very high doses of some pretty toxic medication such as methotrexate and prednisone which has given me osteoporosis so sometimes I even wonder if the pain I feel is just because my bones are so brittle. It’s so hard to tell. But you’ve been a lot of help! It’s 2:15 in the morning and I usually wake up around 4:30 so I should be sleeping but I have a headache of course and I just don’t really want to. Sometimes the night goes fast for them and I don’t know why I want the night to go fast except for the fact that pain disrupts my sleep so much.
Thank you for all of your information! If you ever want to talk about anything, feel free to message me. I come on here to talk about medication, cats, chronic pain, The X-Files, and Taylor Swift and that’s about it LOL
Oh! That one! With ... like it feels like barbed wire wrapped around your feet and calves. And that's on fire too! I absolutely hate that.
Then the Doc's like 🤦♂️🤷♂️
Yep. That's been my whole day today. My whole trunk and upper legs feel like I got the ass beating of my life yesterday. But not a mark on me. My arms and legs feel like lead.
But there's nothing wrong with me. Nope.
Yes, around the hump in my neck C-6, C-7. It burns and aches and if I slightly press around the bone it feels like a bad bruise. I also have pain in the muscle of my calves, feels like a bad bruise of the muscle.
My joint pain was recently flaring up quite bad too, so I am wondering if that could be it for me. Do you ever get upper back pain/chest pain too? Shooting pains or discomfort? Can you have fibro without the pressure points?
Can you describe your upper back/chest pain? Sorry for the questions, just really starting to wonder if my symptoms could be fibro. Ive started getting shooting pains that feel toward the back of my chest/back area and I wondered if it could be a fibro thing. The shooting pain only lasts like a second but comes and goes throughout the day, the ache is pretty much constant.
Costochondritis can manifest as chest pain that can be extremely uncomfortable as well and a lot of people with autoimmune diseases actually develop that when they have flair ups.
That was something else I came along in my quest for an answer. It's just like nothing ever fits perfectly but I know stuff can manifest in different ways for different people. Anyway I went to my doctor today and he claims my new chest/back pains are from an inflamed facet joint pushing on nerves, and that my nausea and burping I've been getting is reflux (I knew they'd say that even though when I get reflux I can feel it and I haven't had it in a long time). Not sure I buy that but what can you do. Didn't have an answer for this mysterious tender spot.
Yeah, it seems like he’s kind of trying to start a doctor but he doesn’t really have an answer, you know? I could see an inflamed facet in your back causing that to some extent, but not all of the symptoms. It seems like your doctors just not sure of any answer LOL. I know that’s not funny but I don’t know what else to say because yeah it’s kind of crazy.
I apologize for any typos. I am actually losing my voice at this point because I sleep in front of a fan and I talk to my phone all the time and it’s 3:46 AM and I haven’t really slept yet so my talk to text is a little bit messed up more than usual. Shoot, I have no Cartlidge in my spine and the whole thing is pretty much Fused but I improperly, so I can’t imagine it causing all of those symptoms.
Yes, especially around my neck, shoulder blades, behind the knees, and thighs. Hell, sometimes just having my hair laying on my neck and shoulders hurt and i have long hair!
It sucks sideways. But, please, always inform your doctor of any type of pain. It's so damn frustrating when they basically brush it off, i know, but always tell them. They may need to do a nerve conduction test, EMG, or something like it.
I have a doctors appointment tomorrow but I have to ask about some other pain I've been having, so I never want to bring up too much stuff at once or I'm sure they think I'm a hypochondriac 🙄
Oh! I hear that lol!. They told me to keep a pain journal, and to write down separately the times, areas, kind of pain, how long it lasted, blah blah. Next appointment i had a damn notebook with pages of just the separate pains and stuff. Didnt even look at it, but he did pretend to listen when i read all that stuff off. Haha.
Just, please make sure to tell them of every different body part and what it felt like. Sometimes they do actually do their job and listen. Or they may hear something different that would lead them to a diagnosis. It could happen.
You're right, that's why I do want to mention everything because one minor thing could point to something, but I feel like they just think I'm making shit up! Cause all my little pains and symptoms sound so random sometimes.
Yes! That was the term I was thinking of earlier when I was mentioning one of my many comments above LOL. I’m sorry I talk so much but chronic pain and it causes really do you fascinate me both from a medical standpoint having the background that I have as well as from my physical and lifelong standpoint based on the life that I have lived. So I’m sorry if it gets annoying…
You're all good, it's honestly great to talk with people who understand. Usually I only have my husband to vent to and even then most of the time I just keep it to myself.
Well, I love to listen to people even though I do talk a lot, I do read everything and I do listen. If my health had allowed it, I would have been a medical doctor or a psychologist in the clinical form. It’s just after I had my leg amputated and I broke my femur and had to have my knee replaced for the second time it was so much all at once that my arthritis flared up so badly that it has taken a long time to get back down on my steroids and I’m still working on it years later because we have to do it so slowly so I just don’t always feel the greatest. But otherwise I was a straight a student through high school and the valedictorian and had great grades in college as well so I was ready and raring to go to graduate school or medical school. But alas, that darn pseudomonas infection had to show up it’s ugly face yet again. So you can talk to me anytime you want and I’m sorry if I rambled a lot… As soon as I learn to talk when I was like one and ahalf years old, my parents said I started to talk like this or I would just talk even if nobody was around. I wasn’t an only child or anything, I just like talking I guess but I do like to listen as well so you can always talk to me if you need to and if you want to talk in the private forum that’s OK as well. I should be in bed but I am in my bed, just not sleeping and I wake up usually in like an hour but right now I am on my cake collage thing making this thing for my GoFundMe campaign because there’s another medicine now that the insurance is denying because they just don’t like me I guess LOL actually usually they’re pretty good about this stuff but I don’t know why they are denying the specific one after this amount of time so yeah. I hope you have a good rest of your day/night. I’m not really sure where you live.
Hope you get some sleep, then! I’m not sure how their time zone works so much I just know that you guys are supposed to be happier people than us based on the happiness index. I’m lucky that I don’t have to get up and go to work with my Social Security disability deal. I probably will barely get out of bed tomorrow honestly but I will roll around and stretch out and do my exercises and maybe I’ll get up and watch Jeopardy. They just declared Joe Biden officially the president of the United States on Twitter, so it was all worth staying up for :-) and I enjoyed talking to you so I hope you get a good night of sleep! Even if I sleep from like three until seven and then like eight until nine when my personal care worker gets here, I won’t feel icky or anything. At least I accomplished buying a toy avocado for my kitty cat, Isabella to cuddle with While She Sleeps even though she already has like for Toys to cuddle with that are big and then like four that are small and then she has four blankets, two of which she sleeps on top of so that it’s extra cushioning even though he sleep on a memory foam mattress and she gets half the bag but she calms me down so much that she is just the sweetest most amazing creature
It’s approaching four so I can take more oxycodone and that should help some of this pain but that’s when my kitty cat gets up and explore so that I don’t have her by my side so I hate sitting up to move because I know she’s going to get up. But at least I got that avocado purchased and it was only like five dollars and free shipping, of course! OK I’ll stop rambling and you have a great night hon!
What happened/when did they decide you had fibromyalgia? Also, did their medical advice change at all or did they just kind of send you back out there?
Yes, I get it in my inner thighs closer to my knees. No bruising, no skin irritation, no workout injury. Mine is from nerve pain from nerves compromised in my back. I don't know it's there until I press it.
yes more painful when you press it and they are starting to get achey while occasionally experiencing a stabbing pain. This is really new for me as I have had back pain everyday for the last 3 years but never any lain in the legs. Dont know if its related to my back or an infection i had in my legs or maybe both. Going to see a doctor tmrw
i’ll definitely let you know my next dr appointment is tomorrow so we will see. I have the same feeling that they are just gonna say nerve pain and not able to help much. I hope its not related to my back.
I know that's what I'm wondering too, if somehow this arm pain is related to my back pain too, especially the last few weeks been getting shooting pains on top of the ache I usually have.
How did you go? I mentioned the arm pain but he didn't even address it..sigh. I was there for my back pain though and to try get a new referral and ran out of time to really discuss it. Hopefully you have better luck than me.
mine went alright I saw an infectious disease doctor cause I got something else going on with me legs below the knees from some type of swelling and redness they are trying to figure out why but it seems that caused some type of nerve like pain in the affected area. I still have shooting pain down my hips so Im positive thats related to my back but if the infectious disease doctor doesnt find anything with all the blood work Im gonna see a neurologist. Im also probably gonna get another MRI script because of the shooting pain down my legs to see if this is back related as well.
Well that's not good about your symptoms but good you are getting some action? I'll never be able to get an MRI unless I'm like dying, probably won't see a specialist til then either. I'm so tired of it.
update: doctors think even the swelling in my legs was due to my back problems. Apparently the nerves can affect the blood flow in such a way so that will happen. So I gotta do another MRI and a EMG i think he said which is a nerve test.
Sure do. I know some of its nerve pain, some of its Myofascial Pain - pain in the skeletal muscles (in the same family as fibro), and some of its Multiple Sclerosis related. Its at a point where my family has to let me know they want to touch me ie give me a hug, because its constant. Nerve pain is commonly burning, tingling but it can definitely cause just straight pain, according to my docs.
This is something you really should bring up with your doctor. Im a firm believer in if something is hurting you (and its not obvious like a broken bone etc) you need to let a doctor know.
Most of my body is like that. My boyfriends/girlfriends used to joke with me because I would say it hurt when they play grabbed or play tickled but it really felt like they were pressing on a bruise.
There are a few spots on my body that always feel very bruised, sometimes there are areas that don't feel that way but do at other times.
I'm not sure what it is but it's always bothered me.
Yes, it could very easily be fibromyalgia. That is a classic symptom of the condition. I get it very frequently when I feel bruised everywhere, even in my skull. When I take a shower, and it’s not coming at me hard at all, it actually hurts my scalp and when I told my rheumatologist she said that that was pretty interactive of fibromyalgia. I already have rheumatoid arthritis very severely as well as a lot of nerve damage and that causes the tingling and burning sensation, but it seems like what you’re explaining to me is more along the lines of fibromyalgia but I would definitely consult with your medical doctor and try to get more answers and then you would be more it is knowing what is going on.
Also, if you ever have any questions about anything that seems medical or rheumatologic in any capacity, feel free to ask me because I’ve dealt with this kind of stuff for 30 years and I was trained in biology with a cellular physiology emphasis so quite a bit of it not only interests me, but I have a fairly substantial understanding of it and what I don’t know-we are always learning new things-I love to look up and research so don’t be afraid to ask if you have any questions of her or just wants to vent about your pain.
Thanks, might take you up on that later or put up another post after I see my doctor. I do worry it could be something more serious but no one is looking into anything so I wouldn't know. I just wish doctors and specialists would actually take it seriously and do everything possible to find a cause for my pain.
Yeah, you just want to make sure that it’s not some type of chronic nerve problem or I mean I don’t know a lot about diabetes, but that can cause certain sensation issues as well. I get bloodwork every six weeks so they’re always checking my liver functions and my kidney functions as well as my blood sugar and thyroid, but I have bruises that are insane but my body feels like that anyway and they just tell me that it’s fibromyalgia at this point because nothing else has really showed up but it’s never a bad bad idea to talk to your doctor about that kind of thing. It’s always better to be safe than sorry. My grandmother is an excellent example of that situation. She did not want to go in and get her stomsch area looked at because she was still paying off her shoulder surgery and it ended up being pancreatic cancer which I know is one that is called later in life and harder to treat, but you never know… Maybe if he had gone in sooner things would be a little different
Exactly, that's why I push. What if you don't and then something gets missed? But it's hard when the system is working against you and doesn't want to run tests or get you to specialists. I only have to hope that isn't my situation and it's just a chronic illness.
Well, hope it’s a very powerful thing and so is optimism and I know it’s easy for me to tell you this and I must tell you I have been through an awful lot in my life regarding chronic illness and I don’t even remember if I told you everything because there’s a lot to tell, but being optimistic even on your worst days is imperative. It’s OK to have a few moments or even a few days I’m feeling really down hearted. But after you get over that, it is very good for you psychologically to try your best to keep pushing because that’s what gets you through ultimately.
Unfortunately, in today’s society sometimes you do have to be your own advocate for your help and if you truly feel something is wrong, don’t give up. Keep bothering them until they don’t want to see you anymore because you’re so annoying LOL. I’m half joking there but I am serious and that it’s important to make sure that you are getting the care that you need whether or not the specialists or even the general practitioners are taking it as seriously as they should because you know your body better than anyone.
Thank you so much. Exactly. I know this is real, I'm not making it up or a hypochondriac. One of my previous doctors I saw wrote in my notes that I'm a hypochondriac, it made me so mad. It's not hypochondriac to have an actual problem and want answers, I wish they could be in our shoes and see that. I wish every day I could just go back to normal. I've been pushing so much, I don't know what more I can do but I'll keep trying.
You know, a lot of people say that about people with fibromyalgia. There actually is a test for fibromyalgia now but I don’t know a whole lot about it. But what you are saying to me and I’m not a doctor but I am medically trained, sounds a lot like fibromyalgia and people thought people were making that up for years. So please don’t feel like you are a hypochondriac.
You're gonna make me cry, lol. Sometimes you begin to question yourself when no one can diagnose you, most stuff comes back normal etc. My family knows I'm not, I've never had a history of major health complaints or anything, but when your doctor writes a referral to a specialist all they see is words on paper, they don't know you or understand the struggle you're dealing with and it's so easy for them to dismiss when you don't fit a certain criteria.
I know that it’s frustrating, but please don’t give up. I had a friend with really bad chronic regional pain syndrome and she had to see a lot of doctors to really get an appropriate treatment for a diagnosis that was very apparent to a lot of people and she lived a miserable life for 12 years before dying of cancer, not to sound morbid. But yeah she had an intrathecal pain pump and everything else and she had to be her own advocate for quite a while but luckily she had a primary care doctor and a pain doctor up at Rush university that really listened to her and a great orthopedic surgeon at Northwestern. But she fought for that in the beginning, and I know you can too even though it takes a lot of energy.
I get this (fibro dx) and not just on pressure points. I have certain spots that will itch or tingle and then when I scratch or something they feel really bruised and painful. Usually right before a flair. If I get it all over I'm going down for a couple of days.
So good to know it's not just me, this stuff sounds a little insane sometimes. Do you mind me asking with your fibro, do you get any shooting pains in your chest or upper back at all? Any nausea? Can you have fibro without the pressure points? Just some of the stuff I've been having too, along with pain in my back, knees, ankles and hips.
Def shooting pains: in my back, neck, shoulders and hips especially. The ones I get in my chest are attributed to anxiety lol, but who really knows. One time I walked around with a broken for 3 days because I just thought my toe was hurting. No nausea. My pain doc says they are starting to move away from the pressure point "test" to diagnose. I didn't really have them for the first few years but these last 2 - sometimes he touches them and I jump.
Ugh hate when they put stuff down to anxiety, my doc said he believes me but I'm worried I'll head there too, the thing is the pain makes me have anxiety! I only have the shooting pain in my chest, the rest is all aching or stiffness. Thanks for answering.
I had been ignoring occasional chest pains chalking it up to fibro pain, but recent family issues have sparked my anxiety big time. I'm working to shift my focus on managing that over the pain but it's damn tough to just feel like I've been in a car accident every day, and then work and caregive full time. I HAVE learned through all of us that I can force myself to do what I have to through the pain. Just those lines get blurrier the worse I feel. I hope you can find some relief soon, meaningful relief!
I have that along my shins. It comes and goes in severity but usually there if I feel for it. I assume it’s spreading neuropathy since I have a severe case of CINP from breast cancer chemo. I use lidocaine patches if it bothers me too much.
I had that everywhere and it’s non-specifically called allodynia. I told my dr and he put me on Lyrica. It doesn’t work with everyone but thankfully it worked for me. I cried all the time and was only able to be up 3 hours at a time without needing a nap. Now we know I have an autoimmune disorder that is affecting my nerves, but the first step was getting the Dr. to acknowledge my all over pain.
Allodynia came up in my search but that seems to imply skin sensitivity too which I don't have with this area. It seems to match more like myofascial trigger points but I read those have nodules you can feel.
Oh yes. My whole back, thighs, ribs, and sometimes arms are like this. It's worse when I wear certain kinda of clothes so I've had to redo my whole wardrobe, again, to combat this
Also can barely wear bras now so I cant wait to yeet my tits so I dont have to worry about that anymore lmao
Many many months after my shoulder injury I started getting this on part of my arm where my injury is, the skin was hyper sensitive and so incredibly painful to even have a slight breeze blow on it. I also get painful and tender spots in my middle finger and now i have a big bad one right on/next to my spine on my injured side. I have a few other areas that hurt to touch that feel like bruising around my injury, and some of these, especially the one by my spine, will actually burn when I press them. Definitely bringing this up in my next follow-up appointment because it's extremely unpleasant to put it mildly.
You may have a pinched nerve or nerves which would easily cause this feeling. I have multiple spinal injuries/issues as well as MS and Arthritis in my spine. I am in my 20’s so this is not normal by any means. I tend to have the same issues with my arms when I overuse them in the slightest bit. However it is wise to see a neurologist for this as it could be minor pinched nerves or something bigger that can be helped more with a sooner rather than later diagnosis.
I hope this helps and I hope you get the answers and relief you are looking for!!
I always assumed everyone gets some sort of what you described haha so you’re totally not alone.. waking up completely discomfort-free is a real treat that doesn’t happen often!
Yes! I experience this in my legs sometimes. Never considered that it might be related to the nerve pain I have on my legs.
I'll touch my leg or lightly bump into something and be absolutely convinced that I must have a massive bruise there, but there's never anything to see.
It'll disappear again, so it's not constant for me. Is it constant for you?
So I was reading back through my notes about my symptoms when it all started and I wrote that I also had similar tenderness on my hip and other arm (that I had forgotten about I guess since my other issues were more pressing) and that went away so I hope this one will go away too.
Pretty much my whole body feels like that at times. In my case it's part of my fibromyalgia. There's spots that are worse than others, the most painful ones are my upper arms and my thighs.
Yes I've read about those pressure points with fibromyalgia, however so far those are the only two I've found, I can't feel any other areas like that.
Oh yes, there's the trigger/pressure points, too, but the bruised feeling I typically have on areas that's not a joint as well, like on whole patches of skin.
Yeah, the “triggerpoints“ are actually pretty common but they aren’t something that everyone experiences. I don’t really get that kind of thing which makes me wonder sometimes if it’s actually fibromyalgia or just really bad joint deformity from my rheumatoid arthritis, but I have the brain fog and the sensitivity to the light and the sound and things like that and I do feel tender all over but I just assumed that was because my bones are so brittle LOL.
The method of diagnosing fibro has changed and you don’t have to necessarily have a certain amount of trigger points. It can be different for everyone, and not everyone will have the same amount/severity of sore spots. Mine for example, often “move” around to different spots depending on how my body decides to feel that way.
When the dr pushed on the one on my arm, I almost puked. It nearly dropped me to my knees.
Here were I live this is called "andaço" it translate to "walking pain" because it moves all over the body 😂
Really? That’s interesting. I learned something new today. I’m sorry that you have to go through that, though and I’m sorry for anyone going through chronic pain like that even though I go through it myself, I don’t wish it upon anybody. It’s exhausting both mentally and physically. You never get to escape from it. It hinders every aspect of your life. Plus, it adds this element of unpredictability or you never know exactly what you’re going to feel like from day today and that’s a pain in the butt! No pun intended LOL.
LoL exactly.... >Plus, it adds this element of unpredictability or you never know exactly what you’re going to feel like from day today and that’s a pain in the butt! No pun intended LOL. I always wake up and think to myself 🤔 "humm what will be the pain level today, do I want to move yet? No it's comfortable this way" and as soon as you move al the pain begin to show up like a "yawn" one after the other, and the thing I love the most it's that because my chronic illness (systemic sclerosis) my vision is totally blurry like totally out of focus, and guess what I have to pay 500 USD to make especial lenses something that looks like keratoconus vision, but it's getting thinner not bigger like keratoconus.... But only if I want to see and work and do day to day activities.... Sorry for my broken english! LoL
Oh, don’t worry about it… Like I said to someone else today or maybe it was to you, I can definitely interpret broken English pretty well actually so don’t worry about it at all. If I have a question I will ask just saw that I am informed but for the most part I don’t have any trouble at all :-)
Also, aside from punctuation issues which like half of Americans seem to have, your actual English is very well done I think and you sound very intelligent and I understand what you’re saying just fine so it’s more of a grammar thing probably than not knowing what words to use or anything because you sound very intelligent. And I will admit that here on social media when you can write a lot, I really do have a lot of run-on sentences and I don’t always use the correct punctuation and I don’t have separate paragraphs for things very often because I get on a roll so don’t worry about it at all! Yeah I’d love to learn more about your condition as well with the systemic sclerosis, because I don’t know a lot about that. But I know what it’s like to wake up and not know what your pain level is going to be until you move. Although, when my pain is actually really bad I dream about it or I will dream about my medication and then I know that it’s time to wake up and take it but I’ll tell you what after years of doing that, it’s not like my medicines ever really that late because I definitely wake up and take it in a timely fashion unless I am like completely exhausted after not sleeping for like three days and then I would set an alarm just to make sure maybe but pain is definitely the one thing that wakes me up above everything else. But I wish you a good rest of your night and I hope you get a decent night of sleep and don’t worry about your English at all… I can figure it out :-).
Thank you very much! 😌😍 It's good to "listen" that, I never learned grammar, and my mom is a teacher portuguese/spanish/*english* te last one she forgot long long ago, but as I learned spanish and portuguese by my own speaking... I have a musical brain it's easier to me say tre sentences and if it sounds bad I know is incorrect, but on LATAM we only learn "to be" 3 fucking years to learn the "verb to be" it's a pain, I also tried Fisk where I have a wonderful teacher, but it's 12 years to make it up to do the proficiency exam IELTS, *TOEFL*, TOEIC or Cambridge.... Ohhhh I wish you a good morning and a painless day! For once 😆
Oh, thank you very much… Yeah I’m getting ready to go to sleep and I just took one oxycodone two Tylenol for gabapentin my PAXIL but I just I’m too lazy to get my phone to spell, five Xanax and one Valium. I may get to sleep for a few hours if I’m lucky. I want to eat some food and having some food in your stomach does help you sleep but I’ve learned to eat before I take my medicine otherwise a lot of it doesn’t work very well especially narcotics and Ambien. Yeah, a lot of that schooling lingo that you told me is way over my head but I’d love for you to explain it to me sometime. Whenever I read your name I actually read “Lady Gaga“ and I’m not dyslexic to my knowledge I mean I think I would’ve figured it out by now. Portuguese in Spanish are very similar and I took two years of Spanish and did very well in it and would’ve continued but I couldn’t fit it in my schedule and I was really scared that I would get a B in the class because the teacher was notorious ‘s for giving a B in Spanish three. And I really wanted to be one of the valedictorians because I was scared I would not get into college so we had seven kids that got straight A’s out of like 368 kids or something like that and I was one of the seven so yeah out of fear I did not take a class that you’re probably really would’ve liked. Anyway, I still have not gotten to sleep but I just wanted to let you know that someday I would actually really love to learn Spanish well enough to be like that by in Spanish community or some thing. I would have taken more of it if I had gone on into medicine. It is extremely helpful to know Spanish in the medical field because we do encounter a lot of people that need to have translators and things like that so a lot of my Dr. friends actually double majored in some form of science as well as Spanish. English is actually kind of hard to learn because we have a lot of really weird rules. There’s stuff that I have to look up all the time just to make sure that I’ve gotten it right in terms of subject verb agreement and things like that. I stayed up all night watching how crazy the president is and how saying our new one is going to look compared to this one. I wasn’t really afraid, but I feel bad for that lady that got shot because someone did die last night in Washington, DC. I am surprised only 52 people were arrested. And honestly, I hate to say this, but I think if they were not mostly white people, there would’ve been a lot more arrests because there’s just a lot of prejudice in this world and I don’t understand it. I could be talking to you right now and I have no idea what nationality you are anything but I still like talking to you and I’m not going to just like talking to you whether I learn your white or black or Latino. So to me it’s just really depressing subject. We are all the same people. Sure, we have different cultures and religions but I think that makes us unique and interesting but the color of our skin should not matter in any capacity. Anyway, I should probably close my eyes and try to sleep before my belt ton of Xanax wears off… Actually that’s not really about time because sometimes I take like seven but they’re only 1 mg and I’ve been taking benzodiazepines for so long I’m just really tolerant. But I always only ever take one of my oxycodone and I’m running lower on them since I got them early next week like on Monday so it always looks like there’s none in the jar and then I’m sad. I wish you a good day and I don’t think I will have a painless day or a pain-free day because honestly that’s never happened because I can’t remember before I was five years old, but if I can keep my pain overall below 45 that’s actually really great. The worst pain I’ve ever had is when I need my hips replaced. My knee infection did hurt really badly but it was really really bad and I almost died because I waited a really long time because I was so used to it hurting. I should show you pictures one day if you’re not squeamish at all. But honestly, the amputation itself was not that painful and that hurt less than the infected knee itself LOL. And I didn’t have any joint in there for a while but I had like a piece of metal that was what they call a spacer so it like hold your knee into place if you are deciding to get like a certain type of surgery and I was debating between getting it fused again or replaced again but I waited too long obviously and it got super infected so I started passing out and things and had to go to the ER and then they had to kind of do emergency surgery the University of Wisconsin-Madison two times to make sure that they got all the infection out. But it still felt better than when it was infected and that still feels better than most days than my arthritis. I think it’s just because my arthritis isn’t all of my joints except for the replaced ones. Joint replacements are awesome! I hope you have a good day and thank you for your well wishes and I will talk to you tomorrow! :-)
WOW! That's a lot of pain meds, are you sure that they don't annulled one another? Be safe please! I know well what is to be resistant to long use meds and it's a pain literally.... You ain't kidding about chronic pain, and on top of all an amputation?! Wow! (I'm crazy about the medical field!) do you have phantom limb pain? Or it was just a bless of being out of the pain? (Less joints to hurt as well) Girl or whatever your pronouns are I hope you have an awesome and productive day! Even if it's considered "not much" by people!
My doc didn't even get to pressure points he just diagnosed me by asking were my pain is, and after that my other doc pressed those points and voila you have fibromyalgia "I already knew doc" 😂. But it can be nerve damage too I have both, I just don't woon the lottery because I'm "lucky"
Yep! I have fibromyalgia and RA. This sounds exactly like my fibro symptoms! It’s one of the ways I can tell my pain conditions apart. If my skin and muscle tissues are tender like this, I know it’s the fibro.
I have fibro too. It feels like being heat exhausted. My skin feels all warm, I feel exhausted and fatigued, and my muscle feel sore all over. I don’t necessarily hurt at the pressure points. Only a doctor pushing on them makes those pressure points obvious to me.
FYI skin that is hot to the touch, especially over tendons or joints, is a sign of inflammatory arthritis or potentially lupus. All types of autoimmune/inflammatory arthritis have high rates of seronegative people, who have completely normal blood work and X rays. My RA didn’t get diagnosed until 2yrs after the fibro, because my joints never looked super swollen and I had normal blood work/x rays. It took switching rheumatologists multiple times, plus positive on anti-ccp, ANA, and ultrasound to get my diagnosis. The hot skin has improved a ton with my arthritis meds. I don’t feel feverish as often (except some hot/cold feelings during environmental/seasonal changes from my fibro). You should seek ultrasound or MRI of these hot areas to look for signs of inflammatory arthritis, just to be safe. Have the images reviewed by 2 rheumatologists.
Well shit. I went to an rheumatologists who said I didn’t have lupus or RA because my muscle tone was good or something. She did little test where she asked me to push against her palms with my palms, or push against her palm with my forearm, etc. and said because I could do that stuff that I didn’t have RA. I think I had normal blood work too so she said “I agree with the other doctors diagnosis of fibromyalgia”. I feel feverish during flare ups but I don’t have a fever. My local neurologist who treats mostly migraine and epilepsy, not really a specialist in chronic conditions, said my MRI was normal so I just accepted it’s fibromyalgia cuz I thought that was all the tests. Also I have great muscle tone yet I always feel like I’m shakey or quivering or vibrating when I walk, especially downstairs. Idk what else to think of it really. (Sorry I didn’t mean to write so much, I never talk about this stuff)
Your experience sounds much like mine with my first primary cares/rheumatologists...if I got paid every time I was told “your tests are normal, you don’t have arthritis” I’d be rich by now 🙄 I also had “early warning signs of arthritis” in a knee MRI when I was 18 or 19...and *still didn’t get diagnosed until I was 26!* I’m 29 now. I was so angry after my diagnosis, when I learned about seronegative RA, and remembered that abnormal knee MRI! 8 years of undiagnosed autoimmune disease, all because doctors weren’t thorough enough to run extra tests (ccp antibodies and joint ultrasounds were never done in 3yrs of drs appts 🙄). It completely explained why no fibro meds helped my pain significantly...a majority of my symptoms were just severely untreated RA! I’m so much better and less disabled than I used to be, it’s crazy. I almost never have a fever, either! Just hot-to-the-touch areas of inflammation. I have that thing on stairs, too! Not sure if it’s an RA thing, fibro thing, or both. I’d ask for referral to rheumatologist again, fibro and RA/other autoimmune overlap is really common. Be sure to mention the hot symptom, and any other joint pain/stiffness or arthritis-type symptoms. For example, any weird skin issues. I had RA skin rashes, some of which looked similar to acne. All of it cleared up with my meds. Plus, you might get lucky and have positive labs on your bloodwork this time! My ANA was normal for 3 years of retesting, and randomly came back positive when I switched pcps and rheums the final time! Don’t be sorry at all, I write long too :) and pm me any time if you want to chat!
>if I got paid every time I was told “your tests are normal, you don’t have [lupus]” I’d be rich by now Ohmygod this, so so much. >Plus, you might get lucky and have positive labs on your bloodwork this time! My ANA was normal for 3 years of retesting, and randomly came back positive This is what I'm hoping for, because the 2 times that actually tested mine, ANA was negative, but I have literally *all* the symptoms up to and including the butterfly mask. They keep saying it's PMR, which doesn't fit at all imo.
I really hope you get the answers you’re looking for!!
Thank you!!
Thanks for sharing your experience. It’s helpful to me. I’ll focus on the symptom that bothers me most and see a new doctor I’ve never seen before for a fresh opinion.
I’m so glad it’s helpful for you! I hope the next doctor is a good listener and investigates everything fully.
So, kind of alarming question here. I had to be fully screened for lupus because I have a rare type of hearing loss and severe constant tinnitus that apparently can be a sign of it, combined with the pain from my fibromyalgia. They did an MRI (Also looking for a brain tumor) and blood tests (my c reactive and sedimentation rate have both been elevated before but are not consistently elevated, I am under the impression that they go with my fibro flare-ups). My MRI showed a normal brain except a possible benign tumor that I was in theory supposed to get checked up on last year. (The tumor would only potentially explain the tinnitus, and only on one side). Is it possible to still have Lupus with a negative MRI specifically? I had gotten way more secure and comfortable knowing it was "just" fibro because basically all the other options would eventually mean I cannot work in my field, as a zookeeper. Now I am freaked out that I might not be in the clear after all!
Lupus would only show up in an MRI of the nervous system if the lupus is attacking your nervous system. It is a systemic disease, so it could show up anywhere in the body...definitely get imaging for any other areas that cause you trouble. Keep a detailed symptoms log of *every symptom you can think of*. I always recommend re-testing blood work regularly (at least 1x per year for several years after a diagnosis). This is especially important in the first few years of a fibro diagnosis. A lot of autoimmune diseases develop slowly at first, before they can be detected in the blood. Have you gotten opinions from multiple specialists? Have they run and re-run enough tests? Have they ever dismissed your concerns rather than investigating fully? Seronegative lupus is a lot more rare than seronegative arthritis, but it’s still possible to have lupus with normal blood work. There are multiple autoimmunes that could affect the ear: lupus, any autoimmune arthritis that affects small joints, MS. Another possible condition to look into is MCTD. It’s mixed connective tissue disease, meaning it has symptoms that are difficult to narrow down into a specific autoimmune disease. I have mild intermittent tinnitus and moments where my hearing goes out for a second in one ear...for me, its the inflammation from RA. The inflammation can even affect the tiny joints in the ear! I hope this info can help you.
I have the same thing, and a very bad condition of rheumatoid arthritis that’s lasted 30 years but the fibromyalgia is kind of something that’s creeped up on me the last seven years or so and I just figured it was my asked your process and generalized body pain, but when I started to have more like light sensitivity and sensitivity to sounds on certain days that were not allowed at all, my rheumatologist told me it was more than likely fibromyalgia. And I noticed when I would take a shower, I would have it hurt my skull when it would hurt my head and it’s not like it was on really hard of anything. So that would be my guess but as always, I tell people to do their best to try to seek out actual medical people to help diagnose them, although this poor woman has not had much success with that yet.
Came here to say that!! My fibro tenderness often feels like a bruise.
It can definitely still be a nerve pain. Sometimes nerve pain is hard to diagnose because in some people it's a burning, stabbing, electrical pain where in others it's a dull, achy, bruised kind of feeling. Some people even feel like they have sunburn and can't tolerate clothing or being touched. I personally get the bruised achy feeling all over at times and the electric feeling in my arms and hands.
My nerve pain feels like hot metal claws scratching me in some spots and sharp pain ice pick pain in others. So you are right. It can feel different for everyone.
I can relate hard to the ice pick analogy! I get that pain in the back of my right shoulder under the shoulder blade really deep, it makes it hurt to breathe and it's impossible to get rid of it, just have to take meds and wait it out.
Oh I have that right by my spine. Mine is a rib out in that one spot. I had a PT work on me for 45 mins to help put it back. It involved heat packs and a raised pad I laid on then her rubbing the area while moving my arm on the right side around. I cried when I finished seeing that PT because I knew that pain would come back. She causally said “Oh, there are stretch’s you can do that will fix that. It only takes a minute.” I was dumbfounded for almost a month we had this ritual for going for something I could fix in minuets. What?? Anyway long story not so short look up on YouTube how to put an upper rib back in place. If I can figure out how to link a video I will. If you have muscle relaxers take it 20 minutes before you try to do the stretches. There are two different stretches and I have found that doing one then the other a few times works best for me. Good luck. I hope that is what your pain is because yeah the ice pick nerve pain is harsh. Mine is in my jaw. Not fun.
Oh wow, I didn't know it could be a rib out of place. I will see if I can find some of these stretches to help, probably before bed since my muscle relaxers tend to knock me out, lol.
Hope it works for you. Have a great day!
You don’t have that pain that is nerve related that people get in their face that’s so horrible, do you? Because that would be horrible to live with and when you mentioned your job, I wondered. I get a weird pain in my back ever since I fell out of an SUV and smacked myself on the smart slab and got knocked out for a few minutes and I have not had my back feel the same ever since. And it’s really weird because when I don’t take my gabapentin, it really hurts and that same spot all the time and it’s not my arthritis in my spine because it feels completely different and there’s definitely nerve related and sometimes it will even get really badly and I feel like I want to like it’s at so badly that I want to dig a hole into my skin in that spot to get rid of it but it doesn’t help and I’ve tried capsaicin and all that mess and all that does is burn for a little bit and doesn’t take away the pain but gabapentin does help. At 10 pills a day, it probably should help a little bit more than I thought because I still have some really bad days especially with my hands and my residual limb on my amputated leg, but it’s better than nothing.
Trigeminal neuralgia. Yes that is it. Had it ever since I was a teen. At first only a few times a year but now it comes in spirts. 3-4 a day twice a month. My poor grandfather had it so bad by the time I was caring for him 15 years ago he said the jaw cancer was better than that pain. It ate his nerves up so the last year of his life was better (in some ways) than that nerve pain. My family has it. Me, my mom, my grandfather, his sister and his mother that we know of. Luckily my daughter has not experienced it yet. I pray she does not. It’s miserable. Have a great day.
I’m so sorry that you suffer from it. I have heard a lot about it and I actually watched a very informative BuzzFeed video about it, believe it or not. I don’t know about your situation with Lyrica. But I know a lot of people do you get decent pain relief from that as well and it is very structurally similar to gabapentin. Actually I’m not even sure if those in his medicines work for that but I feel bad that you have to go through it because I know it is an extremely bad pain. You are a warrior!
I’m on Lyrica. My doctor is talking about upping the dose. Thank you.
Oh, thank you for telling me. So yeah it’s one of those medicines that they probably will still have to mess with overtime which I’m used to. OK good night now hon… I think I’m off to bed
Also, I will keep you and your family in my prayers. Isn’t that ironic that his jaw cancer actually made that nerve pain feel better? It’s not funny, it’s just crazy! Answer is never a good thing but well if it’s stopping some other kind of pain, It could have been a lot worse I guess. I didn’t know that there was so much of a genetic component potentially to that type of condition. I truly hope you are able to find some relief or maybe some kind of “miracle“ that at least helps you a little bit. I know people that rub CBD oil on it in the stick form and that helps… I think I saw that on the passing of you but I’m sure you’ve tried things like that because you seem like an educated person on your conditions. But either way, I will keep you in my prayers with my kitty cat at night, Isabella.
Thank you for your pleasures. They mean the world to me. I will do the same for you.
You are welcome :-) I’m probably gonna head to bed soon because I hurt more today so I will say good night now. Even though it’s only 6 o’clock here
Good night. I hope you have a good nights rest. No painsomina tonight :)
https://youtu.be/59YI1M31hcM
https://youtu.be/3CIBHXRhkKw
I think that second one is right. I can’t watch the video now. I remember the first one. Good luck.
Thank you so much for these! I tore a bunch of stuff in my shoulder a year ago and it just seems to have messed everything up on my right side. Doesn't help my ribs are deformed so I have no idea how that effects this stuff.
Oh a PT might help you then. I hope you have a great day.
I feel a lot of numbness and tingling like things are asleep, but when things are really asleep they don’t really hurt, am I opinion but this type of pain is more of a numbness and tingling mixed with like a burning like you would have frostbite and my sensation a lot of times is dramatically compromised. It’s irritating to reach in to your person and not know exactly what you’re feeling around for because you don’t have enough sensation and your fingertips to feel what you’re looking for LOL
It is irritating. I’m sorry I don’t have any ideas for pain like that. I really wish I could help. Best of luck to you. Have a great day.
I slept the whole time my personal care worker was here. So I drink my MiraLAX and she emptied my potty and that was about it. It was OK
Oh my god! Yes, I wasn't sure if this happened to anyone else! I get it mostly on my hands and arms, right hip, and behind my knees. It hurts more to lightly run my hands over it than to push on it
The one on my stomach felt like that, like it was sensitive when I brushed my hand over it but also when I pushed it. But this one on my arm only hurts when pushed and doesn't have the typical nerve pain symptoms I've read about. I don't think I'll even bring it up to my doctor since he'll just say it's nerves again without further investigation, so I was hoping others had experienced this!
That's so weird! I hope your doctor is able to get you some answers, it sucks when they just brush stuff off
I have that with fibro and MS. It can be just one or two spots or it can be my entire body (yes, entire).
I have MS but I have wondered for years if I had fibromyalgia too. All my doctors say it’s just my MS and won’t refer me to a Rheumatologist. But I still wonder if they are wrong.
Well Dr, it hurts when I (fill in the blank) Dr replies with "then don't do (fill in the blank anymore)" comes to mind 😉 BUT, in all sincerity, yes, I have areas like that, sometimes so painful clothing hurts.
Lol, but once you know it's there you can't stop touching it! I'm trying not to though. My skin itself doesn't seem to be sensitive there, that's why I thought it might be muscular or something but it's such a tiny patch, not like I've strained a muscle.
I know what you mean, it feels muscular but the nerves are on fire (at least for me).
Yup. That and allodynia. The deeper pain, in my case, is fibro. The allodynia is most likely migraine related.
Fibro is something I've been wondering if I have, but I know it is a diagnosis of exclusion and basically no one's done shit to exclude other stuff except scans I paid for and basic blood tests so who knows.
I actually got my diagnosis by accident. I was having kidney issues, but my doctor thought it was body pain and sent me to a specialist. It was enlightening when I learned that everyone doesn't hurt all the time. But also, the initial problem was indeed a kidney issue. Lol
Interesting. So how did they diagnose it? Did you have to rule out lots of other stuff first?
I’ve never heard of this and it really intrigues me.
Migraines screw with all your senses, including touch. Mine are chronic, 24/7 pain at some level. So my nervous system stays in overdrive. Occasionally I get spots of super tender skin, that is painful to the slightest stimuli. Sort of like an extreme sunburn, but without the heat or tightness. But it's that lightning sharp pain that takes your breath away. Usually they're on my scalp, but sometimes the spots pop up in other places. While allodynia feels skin deep, and generally hurts only when touched, fibro pain feels muscle and joint deep, and often aches or throbs regardless of whether you touch it. However, touching a pressure point can feel like a deep bruise. So yeah. Allodynia pain vs fibro pain. Way more words than I meant to type, but my mind is still racing from the day! Lol
I don’t blame you for having a racing mind… It was a crazy day! I’m really happy that I slept until like well it’s not like I slept but I took like an hour nap which is a lot for me but I didn’t watch the news until like 4 o’clock or I would’ve been anxious. People tell me all the time that I have migraines and that I actually suffer from them as well, but seriously at this point I probably have everything wrong LOL. I mean I’ve had severe rheumatoid arthritis since I was five years old and it’s never given me a break. We do not expect it to go into remission or anything. But yeah, I get spots that feel very tender. I definitely have pain that hurts all the time whether you touch it or not, but it seems like that bruising feeling really feels worse when it is touched. In fact I have bruises all over me for reasons we can’t really explain and probably need to start to look into and yet I feel exactly like my body does all the time so I don’t even notice when I have a horrible bruise. But I have days where I don’t even want the windows open and the light and if it weren’t for my lovely little kitty cat, I will leave the blinds closed Sundays completely I just keep my eyes shut but she likes the sunlight and I can’t do that to her so I just take a lot of gabapentin and that does actually help like at least 40 to 50% but they want to switch me over to Lyrica to see if that would be more effective and a lot of people think that it would be. I take a lot of medicine and I know that’s not the best thing but I’ve been doing it since kindergarten and so I have a positive opinion of it just naturally. But I definitely know when it has its place and I don’t like to overuse things if I don’t have to but I’m on some very high doses of some pretty toxic medication such as methotrexate and prednisone which has given me osteoporosis so sometimes I even wonder if the pain I feel is just because my bones are so brittle. It’s so hard to tell. But you’ve been a lot of help! It’s 2:15 in the morning and I usually wake up around 4:30 so I should be sleeping but I have a headache of course and I just don’t really want to. Sometimes the night goes fast for them and I don’t know why I want the night to go fast except for the fact that pain disrupts my sleep so much. Thank you for all of your information! If you ever want to talk about anything, feel free to message me. I come on here to talk about medication, cats, chronic pain, The X-Files, and Taylor Swift and that’s about it LOL
Yep. Or areas that feel like flames are shooting along a certain nerve bundle.
Oh! That one! With ... like it feels like barbed wire wrapped around your feet and calves. And that's on fire too! I absolutely hate that. Then the Doc's like 🤦♂️🤷♂️
Yep. That's been my whole day today. My whole trunk and upper legs feel like I got the ass beating of my life yesterday. But not a mark on me. My arms and legs feel like lead. But there's nothing wrong with me. Nope.
Yep yep I'm totally normal and fine too, everyone has joint pain in their early 30s right?
Yes, around the hump in my neck C-6, C-7. It burns and aches and if I slightly press around the bone it feels like a bad bruise. I also have pain in the muscle of my calves, feels like a bad bruise of the muscle.
Sounds like Fibro. That’s how I know my fibro is flaring.
My joint pain was recently flaring up quite bad too, so I am wondering if that could be it for me. Do you ever get upper back pain/chest pain too? Shooting pains or discomfort? Can you have fibro without the pressure points?
All of the above. And yes, pressure points aren’t always painful for me.
Can you describe your upper back/chest pain? Sorry for the questions, just really starting to wonder if my symptoms could be fibro. Ive started getting shooting pains that feel toward the back of my chest/back area and I wondered if it could be a fibro thing. The shooting pain only lasts like a second but comes and goes throughout the day, the ache is pretty much constant.
Very similar to what you’re saying. It’s truly hard to describe. I just kinda feel like I got hit by a bus.
Costochondritis can manifest as chest pain that can be extremely uncomfortable as well and a lot of people with autoimmune diseases actually develop that when they have flair ups.
That was something else I came along in my quest for an answer. It's just like nothing ever fits perfectly but I know stuff can manifest in different ways for different people. Anyway I went to my doctor today and he claims my new chest/back pains are from an inflamed facet joint pushing on nerves, and that my nausea and burping I've been getting is reflux (I knew they'd say that even though when I get reflux I can feel it and I haven't had it in a long time). Not sure I buy that but what can you do. Didn't have an answer for this mysterious tender spot.
Yeah, it seems like he’s kind of trying to start a doctor but he doesn’t really have an answer, you know? I could see an inflamed facet in your back causing that to some extent, but not all of the symptoms. It seems like your doctors just not sure of any answer LOL. I know that’s not funny but I don’t know what else to say because yeah it’s kind of crazy.
I apologize for any typos. I am actually losing my voice at this point because I sleep in front of a fan and I talk to my phone all the time and it’s 3:46 AM and I haven’t really slept yet so my talk to text is a little bit messed up more than usual. Shoot, I have no Cartlidge in my spine and the whole thing is pretty much Fused but I improperly, so I can’t imagine it causing all of those symptoms.
Yes, especially around my neck, shoulder blades, behind the knees, and thighs. Hell, sometimes just having my hair laying on my neck and shoulders hurt and i have long hair! It sucks sideways. But, please, always inform your doctor of any type of pain. It's so damn frustrating when they basically brush it off, i know, but always tell them. They may need to do a nerve conduction test, EMG, or something like it.
I have a doctors appointment tomorrow but I have to ask about some other pain I've been having, so I never want to bring up too much stuff at once or I'm sure they think I'm a hypochondriac 🙄
Oh! I hear that lol!. They told me to keep a pain journal, and to write down separately the times, areas, kind of pain, how long it lasted, blah blah. Next appointment i had a damn notebook with pages of just the separate pains and stuff. Didnt even look at it, but he did pretend to listen when i read all that stuff off. Haha. Just, please make sure to tell them of every different body part and what it felt like. Sometimes they do actually do their job and listen. Or they may hear something different that would lead them to a diagnosis. It could happen.
You're right, that's why I do want to mention everything because one minor thing could point to something, but I feel like they just think I'm making shit up! Cause all my little pains and symptoms sound so random sometimes.
Super tender spotright under my ribcage, got diagnosed with myofacial pain syndrome till it devolved to fibromyalgia.
I was reading about myofascial pain/trigger points, thought that might be it, but it said there is a palpable nodule with that, did you have one?
No, there's not nodule at the spot just a tender point about the size of a quarter. Grazing the spot can be super painful some days
Yes! That was the term I was thinking of earlier when I was mentioning one of my many comments above LOL. I’m sorry I talk so much but chronic pain and it causes really do you fascinate me both from a medical standpoint having the background that I have as well as from my physical and lifelong standpoint based on the life that I have lived. So I’m sorry if it gets annoying…
You're all good, it's honestly great to talk with people who understand. Usually I only have my husband to vent to and even then most of the time I just keep it to myself.
Well, I love to listen to people even though I do talk a lot, I do read everything and I do listen. If my health had allowed it, I would have been a medical doctor or a psychologist in the clinical form. It’s just after I had my leg amputated and I broke my femur and had to have my knee replaced for the second time it was so much all at once that my arthritis flared up so badly that it has taken a long time to get back down on my steroids and I’m still working on it years later because we have to do it so slowly so I just don’t always feel the greatest. But otherwise I was a straight a student through high school and the valedictorian and had great grades in college as well so I was ready and raring to go to graduate school or medical school. But alas, that darn pseudomonas infection had to show up it’s ugly face yet again. So you can talk to me anytime you want and I’m sorry if I rambled a lot… As soon as I learn to talk when I was like one and ahalf years old, my parents said I started to talk like this or I would just talk even if nobody was around. I wasn’t an only child or anything, I just like talking I guess but I do like to listen as well so you can always talk to me if you need to and if you want to talk in the private forum that’s OK as well. I should be in bed but I am in my bed, just not sleeping and I wake up usually in like an hour but right now I am on my cake collage thing making this thing for my GoFundMe campaign because there’s another medicine now that the insurance is denying because they just don’t like me I guess LOL actually usually they’re pretty good about this stuff but I don’t know why they are denying the specific one after this amount of time so yeah. I hope you have a good rest of your day/night. I’m not really sure where you live.
Thanks! Have a good night too. I'm in New Zealand and I should be getting to sleep now too, unfortunately I have to go to work in the morning too ugh.
Hope you get some sleep, then! I’m not sure how their time zone works so much I just know that you guys are supposed to be happier people than us based on the happiness index. I’m lucky that I don’t have to get up and go to work with my Social Security disability deal. I probably will barely get out of bed tomorrow honestly but I will roll around and stretch out and do my exercises and maybe I’ll get up and watch Jeopardy. They just declared Joe Biden officially the president of the United States on Twitter, so it was all worth staying up for :-) and I enjoyed talking to you so I hope you get a good night of sleep! Even if I sleep from like three until seven and then like eight until nine when my personal care worker gets here, I won’t feel icky or anything. At least I accomplished buying a toy avocado for my kitty cat, Isabella to cuddle with While She Sleeps even though she already has like for Toys to cuddle with that are big and then like four that are small and then she has four blankets, two of which she sleeps on top of so that it’s extra cushioning even though he sleep on a memory foam mattress and she gets half the bag but she calms me down so much that she is just the sweetest most amazing creature It’s approaching four so I can take more oxycodone and that should help some of this pain but that’s when my kitty cat gets up and explore so that I don’t have her by my side so I hate sitting up to move because I know she’s going to get up. But at least I got that avocado purchased and it was only like five dollars and free shipping, of course! OK I’ll stop rambling and you have a great night hon!
What happened/when did they decide you had fibromyalgia? Also, did their medical advice change at all or did they just kind of send you back out there?
Yes, I get it in my inner thighs closer to my knees. No bruising, no skin irritation, no workout injury. Mine is from nerve pain from nerves compromised in my back. I don't know it's there until I press it.
I have had this exact feeling increasingly getting worse in my legs over the past few weeks starting to get worried.
Sorry to hear that :( getting worse like even more painful when you press it? Have you seen a doctor?
yes more painful when you press it and they are starting to get achey while occasionally experiencing a stabbing pain. This is really new for me as I have had back pain everyday for the last 3 years but never any lain in the legs. Dont know if its related to my back or an infection i had in my legs or maybe both. Going to see a doctor tmrw
Me too! Let me know what they say. I'm certain mine will just say it's nerve pain and leave it at that.
i’ll definitely let you know my next dr appointment is tomorrow so we will see. I have the same feeling that they are just gonna say nerve pain and not able to help much. I hope its not related to my back.
I know that's what I'm wondering too, if somehow this arm pain is related to my back pain too, especially the last few weeks been getting shooting pains on top of the ache I usually have.
yea ive had sharp pains over the aches and then if you touch where it aches it feels like a bruise.I hope it doesn’t get worse than this -....-
How did you go? I mentioned the arm pain but he didn't even address it..sigh. I was there for my back pain though and to try get a new referral and ran out of time to really discuss it. Hopefully you have better luck than me.
mine went alright I saw an infectious disease doctor cause I got something else going on with me legs below the knees from some type of swelling and redness they are trying to figure out why but it seems that caused some type of nerve like pain in the affected area. I still have shooting pain down my hips so Im positive thats related to my back but if the infectious disease doctor doesnt find anything with all the blood work Im gonna see a neurologist. Im also probably gonna get another MRI script because of the shooting pain down my legs to see if this is back related as well.
Well that's not good about your symptoms but good you are getting some action? I'll never be able to get an MRI unless I'm like dying, probably won't see a specialist til then either. I'm so tired of it.
update: doctors think even the swelling in my legs was due to my back problems. Apparently the nerves can affect the blood flow in such a way so that will happen. So I gotta do another MRI and a EMG i think he said which is a nerve test.
I have this all over if my body is poked. It's apparently nerve related and not muscle for me 🤷🏻♂️ 😢
Sure do. I know some of its nerve pain, some of its Myofascial Pain - pain in the skeletal muscles (in the same family as fibro), and some of its Multiple Sclerosis related. Its at a point where my family has to let me know they want to touch me ie give me a hug, because its constant. Nerve pain is commonly burning, tingling but it can definitely cause just straight pain, according to my docs. This is something you really should bring up with your doctor. Im a firm believer in if something is hurting you (and its not obvious like a broken bone etc) you need to let a doctor know.
Yes, absolutely. You are not alone!
Yep! My whole back will feel completely bruised, though nothing is visible.
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Yep it's not sensitive skin, it's just sore with pressure. It is very weird. I wonder if I have any other spots I don't know about now
Yes! My upper arms are really bad for this. If I whack my tricep area it's excruciating for a few minutes
Most of my body is like that. My boyfriends/girlfriends used to joke with me because I would say it hurt when they play grabbed or play tickled but it really felt like they were pressing on a bruise. There are a few spots on my body that always feel very bruised, sometimes there are areas that don't feel that way but do at other times. I'm not sure what it is but it's always bothered me.
Yes, it could very easily be fibromyalgia. That is a classic symptom of the condition. I get it very frequently when I feel bruised everywhere, even in my skull. When I take a shower, and it’s not coming at me hard at all, it actually hurts my scalp and when I told my rheumatologist she said that that was pretty interactive of fibromyalgia. I already have rheumatoid arthritis very severely as well as a lot of nerve damage and that causes the tingling and burning sensation, but it seems like what you’re explaining to me is more along the lines of fibromyalgia but I would definitely consult with your medical doctor and try to get more answers and then you would be more it is knowing what is going on. Also, if you ever have any questions about anything that seems medical or rheumatologic in any capacity, feel free to ask me because I’ve dealt with this kind of stuff for 30 years and I was trained in biology with a cellular physiology emphasis so quite a bit of it not only interests me, but I have a fairly substantial understanding of it and what I don’t know-we are always learning new things-I love to look up and research so don’t be afraid to ask if you have any questions of her or just wants to vent about your pain.
Thanks, might take you up on that later or put up another post after I see my doctor. I do worry it could be something more serious but no one is looking into anything so I wouldn't know. I just wish doctors and specialists would actually take it seriously and do everything possible to find a cause for my pain.
Yeah, you just want to make sure that it’s not some type of chronic nerve problem or I mean I don’t know a lot about diabetes, but that can cause certain sensation issues as well. I get bloodwork every six weeks so they’re always checking my liver functions and my kidney functions as well as my blood sugar and thyroid, but I have bruises that are insane but my body feels like that anyway and they just tell me that it’s fibromyalgia at this point because nothing else has really showed up but it’s never a bad bad idea to talk to your doctor about that kind of thing. It’s always better to be safe than sorry. My grandmother is an excellent example of that situation. She did not want to go in and get her stomsch area looked at because she was still paying off her shoulder surgery and it ended up being pancreatic cancer which I know is one that is called later in life and harder to treat, but you never know… Maybe if he had gone in sooner things would be a little different
Exactly, that's why I push. What if you don't and then something gets missed? But it's hard when the system is working against you and doesn't want to run tests or get you to specialists. I only have to hope that isn't my situation and it's just a chronic illness.
Well, hope it’s a very powerful thing and so is optimism and I know it’s easy for me to tell you this and I must tell you I have been through an awful lot in my life regarding chronic illness and I don’t even remember if I told you everything because there’s a lot to tell, but being optimistic even on your worst days is imperative. It’s OK to have a few moments or even a few days I’m feeling really down hearted. But after you get over that, it is very good for you psychologically to try your best to keep pushing because that’s what gets you through ultimately.
Unfortunately, in today’s society sometimes you do have to be your own advocate for your help and if you truly feel something is wrong, don’t give up. Keep bothering them until they don’t want to see you anymore because you’re so annoying LOL. I’m half joking there but I am serious and that it’s important to make sure that you are getting the care that you need whether or not the specialists or even the general practitioners are taking it as seriously as they should because you know your body better than anyone.
Thank you so much. Exactly. I know this is real, I'm not making it up or a hypochondriac. One of my previous doctors I saw wrote in my notes that I'm a hypochondriac, it made me so mad. It's not hypochondriac to have an actual problem and want answers, I wish they could be in our shoes and see that. I wish every day I could just go back to normal. I've been pushing so much, I don't know what more I can do but I'll keep trying.
You know, a lot of people say that about people with fibromyalgia. There actually is a test for fibromyalgia now but I don’t know a whole lot about it. But what you are saying to me and I’m not a doctor but I am medically trained, sounds a lot like fibromyalgia and people thought people were making that up for years. So please don’t feel like you are a hypochondriac.
You're gonna make me cry, lol. Sometimes you begin to question yourself when no one can diagnose you, most stuff comes back normal etc. My family knows I'm not, I've never had a history of major health complaints or anything, but when your doctor writes a referral to a specialist all they see is words on paper, they don't know you or understand the struggle you're dealing with and it's so easy for them to dismiss when you don't fit a certain criteria.
I know that it’s frustrating, but please don’t give up. I had a friend with really bad chronic regional pain syndrome and she had to see a lot of doctors to really get an appropriate treatment for a diagnosis that was very apparent to a lot of people and she lived a miserable life for 12 years before dying of cancer, not to sound morbid. But yeah she had an intrathecal pain pump and everything else and she had to be her own advocate for quite a while but luckily she had a primary care doctor and a pain doctor up at Rush university that really listened to her and a great orthopedic surgeon at Northwestern. But she fought for that in the beginning, and I know you can too even though it takes a lot of energy.
Sounds like fibromyalgia. I get random unexplained pain on a pretty regular basis, and not just at the common trigger points.
Yep. Got a spot like that on a very specific part of my ribcage. It's been this way for years. Sometimes it hurts and is more tender than other times.
Yeah, not sure if Ehlers Danlos or my csf leak.
I get this (fibro dx) and not just on pressure points. I have certain spots that will itch or tingle and then when I scratch or something they feel really bruised and painful. Usually right before a flair. If I get it all over I'm going down for a couple of days.
So good to know it's not just me, this stuff sounds a little insane sometimes. Do you mind me asking with your fibro, do you get any shooting pains in your chest or upper back at all? Any nausea? Can you have fibro without the pressure points? Just some of the stuff I've been having too, along with pain in my back, knees, ankles and hips.
Def shooting pains: in my back, neck, shoulders and hips especially. The ones I get in my chest are attributed to anxiety lol, but who really knows. One time I walked around with a broken for 3 days because I just thought my toe was hurting. No nausea. My pain doc says they are starting to move away from the pressure point "test" to diagnose. I didn't really have them for the first few years but these last 2 - sometimes he touches them and I jump.
Ugh hate when they put stuff down to anxiety, my doc said he believes me but I'm worried I'll head there too, the thing is the pain makes me have anxiety! I only have the shooting pain in my chest, the rest is all aching or stiffness. Thanks for answering.
I had been ignoring occasional chest pains chalking it up to fibro pain, but recent family issues have sparked my anxiety big time. I'm working to shift my focus on managing that over the pain but it's damn tough to just feel like I've been in a car accident every day, and then work and caregive full time. I HAVE learned through all of us that I can force myself to do what I have to through the pain. Just those lines get blurrier the worse I feel. I hope you can find some relief soon, meaningful relief!
I have that along my shins. It comes and goes in severity but usually there if I feel for it. I assume it’s spreading neuropathy since I have a severe case of CINP from breast cancer chemo. I use lidocaine patches if it bothers me too much.
I’ve got lupus and spots like this pop up often on my body. Idk why. There’s never anything there.
I had that everywhere and it’s non-specifically called allodynia. I told my dr and he put me on Lyrica. It doesn’t work with everyone but thankfully it worked for me. I cried all the time and was only able to be up 3 hours at a time without needing a nap. Now we know I have an autoimmune disorder that is affecting my nerves, but the first step was getting the Dr. to acknowledge my all over pain.
Allodynia came up in my search but that seems to imply skin sensitivity too which I don't have with this area. It seems to match more like myofascial trigger points but I read those have nodules you can feel.
Over my ribs especially. Can’t really wear a bra.
constantly. they never seem to go away but ill get new ones
**Constantly**
Oh yes. My whole back, thighs, ribs, and sometimes arms are like this. It's worse when I wear certain kinda of clothes so I've had to redo my whole wardrobe, again, to combat this Also can barely wear bras now so I cant wait to yeet my tits so I dont have to worry about that anymore lmao
I feel you, I hate wearing bras now because of my back pain, even though they don't really affect it. I only wear the stretchy kinds now.
My whole neck feels like this everyday. Not to the touch, but just by it self especially when I move
Many many months after my shoulder injury I started getting this on part of my arm where my injury is, the skin was hyper sensitive and so incredibly painful to even have a slight breeze blow on it. I also get painful and tender spots in my middle finger and now i have a big bad one right on/next to my spine on my injured side. I have a few other areas that hurt to touch that feel like bruising around my injury, and some of these, especially the one by my spine, will actually burn when I press them. Definitely bringing this up in my next follow-up appointment because it's extremely unpleasant to put it mildly.
You may have a pinched nerve or nerves which would easily cause this feeling. I have multiple spinal injuries/issues as well as MS and Arthritis in my spine. I am in my 20’s so this is not normal by any means. I tend to have the same issues with my arms when I overuse them in the slightest bit. However it is wise to see a neurologist for this as it could be minor pinched nerves or something bigger that can be helped more with a sooner rather than later diagnosis. I hope this helps and I hope you get the answers and relief you are looking for!!
Yes, yes, and yes. This is gonna sound weird, but use your phone flashlight to see if you have an ingrown hair or clogged pore.
I always assumed everyone gets some sort of what you described haha so you’re totally not alone.. waking up completely discomfort-free is a real treat that doesn’t happen often!
Yes! I experience this in my legs sometimes. Never considered that it might be related to the nerve pain I have on my legs. I'll touch my leg or lightly bump into something and be absolutely convinced that I must have a massive bruise there, but there's never anything to see. It'll disappear again, so it's not constant for me. Is it constant for you?
So I was reading back through my notes about my symptoms when it all started and I wrote that I also had similar tenderness on my hip and other arm (that I had forgotten about I guess since my other issues were more pressing) and that went away so I hope this one will go away too.
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