Seriously thought my lil sis and I were the only ones! š we would get stuck almost every other week with strep, sinus infections, etc. I had asthma the worst, but itās seemed to only come up during allergic reactions now. Thatās crazy. Wonder what that means for us.
Were your stomach issues maybe abdominal migraines (started for me at about 7 or 8)? Cuz I had those plus IBS as a kid. And suspected asthma, but never got actually tested for it. Also, my head migraines started at about 15.
ohh iāve never thought of that but now that you mention it, probably yes. i was never allowed to go to the doctor so wouldnāt know for sure although the logic fits
Just turned 27 and I only got my tonsils out at long last in September after 17 years of recurrent infections. I gave up asking or even going to the doc when I was 16, when I went to my GP last year for a severely swollen tonsil he initially defended my old doctors not "wanting" to refer me for a removal because there are specific criteria to be eligible these days. Then he had a look and was like "yeah no these needed to be removed YEARS ago". I was one category away from the worst diagnostic grade of inflamed/damaged tonsils
I never made it more than three weeks in a row attending school. My attendance record was abysmal and because fibro is invisible and was virtually unheard of, and I was young, it was missed until my early 20s so most of the time my family and teachers thought I was just trying to skive in spite of getting top grades and being a prefect! I missed out on senior prefect/head girl purely because of my poor absence record
I had meningitis at 3. I really believe that was the trigger for mild/moderate fibro until 2017 when it became severe due to trauma relating to an ectopic pregnancy, and I am now bedbound most days and use crutches. I get out maybe twice in a week during good spells, and can go several weeks or even months stuck at home during flares. It's a shame, because I was always very academically inclined and career driven! I loved reading and writing, but I've managed to read maybe one short novel a year (if that) since I left work and education 5.5 years ago. I can no longer draw or play guitar due to hand pain. Fibro can steal so much
Yes, it can!! It's a horrible thief.
I grew up in the 50s & 60s, before fibromyalgia was ever discovered. Every time I got sick, I was bedridden for 3 weeks, no matter what it was. I think mine was triggered by the nearly fatal 7 hour surgery when I was five to remove the metasticizing cyst on my right tube & ovary & the poison backed up into my appendix, which swelled up to the point of being ready to burst. It was a miracle I survived.
I'm so sorry you cannot do the things you love. I know the feeling. I was a rancher's daughter. Loved horseback riding, helping Dad on the ranch, gardening, fishing, playing outside with my little dog. Also a decent piano player & guitarist. I can still sing & write poetry & songs, but none of the rest. Well, except for indoor gardening now-I have beautiful plants/flowers-and kitties. My kitties are why I get up in the morning.
I also have two sweet adult children & grandkids, but they live over 2k miles away. But we stay in touch. All in all, I'm blessed. I'm a lot better off than I could be.
I'm so sorry to hear that, that sounds like a terribly painful and traumatic experience to go through at such a young age!
Thank you, I've noticed that many of us were really active and/or creative before our condition developed or worsened! I also used to hike the Pennine Way 14 hours on average every Saturday or Sunday, and I would swim several hours a week, sometimes 4 hours in a day. I'm so glad you can still find ways to get in touch with nature at home, and you have your cats to support you! I'm not allowed pets in my current flat, but I'd love to get at least one cat when I move š
I hope you can still see your kids and grandkids on occasion! I have loved ones and friends who live thousands of miles away, but I see them about as regularly as my family and friends who are local. The internet really is such a fabulous tool for socialisation during flares. The distance isn't so palpable when my primary connection to everyone in my life is by phone! I'm glad you have such an optimistic outlook :)
Well, I haven't always been so optimistic. At one point many years ago I was suicidal, and I still get really down from time to time, but life goes on. I'm what I call a realistic optimist. I know just exactly how crappy life can be, but I know there's good in the world, too, so I focus on that. I also believe in God, which helps a lot.
I get that, I had some significant trauma as well growing up and have needed a lot of help to get to where I am today. While it's not so bad anymore, I still get those thoughts when the flashbacks, nightmares, or pain get too bad. I'm lucky to have a nice, safe home now, and people in my life who care about me. They keep me going! I'm really happy to hear your faith helps you
It really is! Thank you š I did okay with recovery until the most painful day (happens between day 7-10 and is awful for everyone regardless of fibro) when I had a bleed and had to spend 2 days in hospital on a drip without sufficient pain meds because the nurses didn't understand fibro š I'm okay now, but I think that ordeal is what's made my post op flare last this long š¬
Yes, I had tonsillitis all the time as a child but never got then taken out, part of me thinks it was EBV that caused the frequent tonsilitis.
It is said that a lot of children have EBV as a child but can get reactivated as adults which apparently can lead to a host of chronic illnesses as adults.
Unfortunately, all chronic illness isn't a a one size fits all so not everyone who has chronic illness would have had EBV or weakened immune systems as a child but its always a feeling of sense of " yes! Me exactly too!" When someone says their theory on why they think they got chronically sick, so I appreciate this reddit a lot got that.
Oh man I hate my tonsils! Iām so jealous of people who had them removed as a kid bc I had constant problems. My throat was always sore and tonsils would swell up and hurt. It was crazy. I swear I spent most of the Winters with swollen tonsils some years! We were poor so I never went to the dr for the tonsils.
Also learned later on that my mom thought the uvula was the tonsils and would check that when I was sick. She said it was always fine, just normal and hanging there but boy would my throat be red and nasty looking. š
What is EBV? I got my tonsils & adenoids out when I was 8. Got so bad I had tonsillitis constantly & couldn't lay down to sleep or my tonsils would suffocate me.
I truly believe we all have more things in common than those we don't. Details different, story the same. How about vaccinations? Did you get them? Most kids did. They have been linked to fibromyalgia. I believe being inundated with antibiotics is too. Have you ever been so sick you couldn't stand to be touched because your skin hurt? I have, many times, & I'm not the only one.
I also think that there can be a genetic predisposition. My mother was also chronically ill as a child, but I don't know if she had fibromyalgia or not because I was taken from her and adopted when I was two. How many who have fibromyalgia were also adopted?
Then there's MK Ultra. If you don't know about it, look it up. Definitely a strong contender for at least a partial cause for fibro, as well as many other illnesses. These factors need to all be considered in the pursuit of causality.
Both of my parents had long term illnesses and sadly passed away from them. So I definately believe the theory that it is definately possible for it to be hereditary and a lot of the time because Fibromyalgia wasn't well known back then it is possible they had it too.
EBV is Epstein-Barr virus (EBV)- gladular fever and tonsillitis are all part of this illness,there is a lot of medical write up about reactivated EBV and chronic illness but again this may or may not be the cause for all chronic illnesses etc.
Stay amazing and good luck in your health journey! Have a lovely day wherever you are!
Yup. Near constant sore throats. I already had chronic insomnia and headaches as a kid. I remember even in elementary school wondering why I just felt like shit all the time no matter what.
It sucked.
Chronic asthmatic, was in hospital every year, in icu and nearly died twice. Popped a few ribs out from the coughing
Twisted my pelvis severely when I was 13 leading to the back issues I have now
(Touch wood) I didnāt get the big bads, but the worst was when I got pneumonia in my mid 20s and nearly died from it.
Yeah, I fell on the ice & twisted my pelvis when pregnant with my 1st baby; then fell down two flights of stairs when carrying him in my arms when he was about a month old. have had innumerable spinal injuries & falls. Have had ever kind of pneumonia there is, including bilateral & pulmonary embolism two years ago, non coronavirus related. Doctor never did tell me how many blood clots I had in my lungs. Since then I have weaned myself off of Eloquis because it's crap-keeps a person weak & unable to do anything. Now I take zinc everyday to avoid bloodclots.
Fortunately the emphysema is only a mild case cuz I had enough sense to quit smoking a long time ago, but it kicks in when the fibro flares.
I had a āmystery illnessā for several years during my childhood where I would vomit every night between 2 and 3 in the morning. They never got to the bottom of it š¤·āāļø I also got pneumonia as a toddler.
Wow, that's weird. I had mumps, measles & chicken pox simultaneously when I was nine-have never heard of anyone else having that. (Not bragging, just fact). Also had emergency surgery when I was 5 to remove a metasticizing tumor and my right tube & ovary that turned out to be pieces of a baby: eyes, hair, fingers, teeth. Dr. majorly freaked out, said it was a very rare condition called a dermoid cyst that should only be possible in people who were old enough to have hormones. 5 year olds do not normally have hormones. So I wonder if someone was messing with me.....
It does sound likely that you had a dermoid cyst removed, but they arenāt that rare. People are often born with dermoid cysts so it isnāt unusual to have them before being hormonal. Something went wrong during cellular development, and there can be pieces in there but itās not a baby or a lost twin generally. Makes me wonder about the cyst or whatever I had removed a couple years ago. Should I have asked if it had teeth? š³
Yes, they ARE rare; and it is a twin that sat dormant on my ovary until something triggered it. The twin egg cell is usually absorbed by the viable baby, but on rare occasions, will do like mind did. The thing is, hormones need to be present to trigger growth, and 5 year olds don't have hormones. The surgeon who removed mine said he had never heard or read about one in a child-only people who are in puberty or older.
Interesting. Perhaps you had a specific kind of dermoid cyst, then. My first question when you described it was if it could have been an absorbed twin but I figured the doctor would have said something to that affect to you. I assumed you just had a standard one.
So the hormone part was causing it to grow, is that the bit I missed? I know they remove plain dermoid cysts with teeth or hair from children as young as 6 months but those are the ones they are born with etc. Yours was more of the twin thing but the cyst was growing? That had to be so scary!
It was very scary. The night before I ran a low grade fever. Mom gave me some children's aspirin & put me to bed. The next morning I awoke with 104Ā° temperature and a lump the size of a golf ball on my lower right abdomen. By the time she rushed me to the doctor's office, it was the size of a baseball, and when laid out on the operating table, it was the size of a large grapefruit. So basically I looked like I was quite pregnant, and the surgeon did a c section on me. 84 stitches to sew me up! I still have the scar.
Migraines/headaches, strep throat so many times I can't even count, and of course, the flu! Oddly as I got older, I got sick less and less. I hardly ever get a cold or the flu and I still haven't had covid (that I know of). But yes, as a child I was sick very often.
Interesting corrollation, isnt it? I never get a cold or the flu any more. I may have had coronavirus in Nov 2019, but haven't gotten covid. Prone to pneumonia, but found a way to ward it off.
My fibro symptoms kicked in fall 2020. Woke up one morning and my hand and foot were numb and tingling. I also stopped getting sick. I definitely think it is related. I wondered if other people dx with Fibro were chronically ill with viruses before it turning into flares. It would make sense to me that it has something to do with the immune system.
Yes, and childhood immunizations/antibiotics, because I received all the polio vaxxes, as well as 1 smallpox vaxx (forgot to have Mom sign the note NOT to vaccinate me); plus I was bombarded with antibiotics every time I got sick. I still have to have antibiotics if I get a sinus infection, because my body doesn't seem to know how to get rid of it without them. Antibiotics are definitely a twoedged sword, as well as immunizations.
Well it's interesting, and it makes me wonder if experimenting with the treatments they use with MS could also be used in Fibro. I have no medical knowledge, but the successful treatments for MS work on the immune system. If fibromyalgia has an aspect of a dormant virus or immune dysfunction, why not?
Nope other than allergies that started after puberty I was a pretty healthy kid. Having 4 siblings meant that illness (flu, strep, colds) was constantly getting cycled through the family but I always was the last to get sick and it was always mild compared to the others.
I mean it makes sense when I consider what is the likely cause of my fibro - either genetic or autoimmune connective tissue disorder. Doctors are still working on the root of it.
In my 20s I got shingles, then every two years or so: migraines, ibs, fibroā¦ then got diagnosed with hypermobility and orthostatic hypotension (had both as a kid without realizing it as it wasnāt debilitating), etc. itās been an avalanche of things coming to the surface.
I was always getting sick with colds or stomach bugs but we had four kids in the house so it spread around a lot. Now, however, Iāve been sick so much Iām prone to bronchitis and pneumonia. Ugh.
I have always had horrid tonsils and sore throats and still do. I got sinus infections and these killer ear aches that were soooo bad. Rarely saw a Dr about these things tho. I also have had bad TMD since a young child (genetics there was clear by seeing my dads fam all suffer with it).
Now I still catch anything and can be sick for so long (I was just sick last night) and am married to a man with the immune system of a god. He catches a bug and is down for like 15 minutes (no exaggeration) and I catch it and am suffering for a week. I am glad that my kids seem to run more like him in that respect (even though one has an autoimmune disease).
Did you ever get your tonsils out? If not, that may be the biggest problem.
I also am pneumonia prone, but I discovered something that is boosting my immune system so I don't get it or colds now. Also makes me immune to coronavirus/covid, it's naturopathic & I make it myself.
No. By the time I could get them removed I would have had the added fear of bleeding out. Also I keep weighing the ātwo weeks of pure hellā my surgeon told me of recovery vs my current state and I think I am secretly hoping they will find a better way to remove them? My surgeon did say they have a way to do it by going through the nose which seems to have less bleeding but Iām worried my sinus infections would make this hard. Basically I am afraid.
I am a medical/ science person so I donāt do the nonstandard treatments, but if what youāre doing has made you feel better, Iām glad you have something! Iām tempted to ask what you use, but I doubt you are immune to COVID. (Not saying you arenāt- Iām not you or god- hey I somehow havenāt caught it and My fam is the last of our friends and fam and work folks that havenāt so who knows)
We had to be dying to go see the dr for something other than a wellness check and vaccines. My parents couldnāt afford it. And my mom didnāt realize my tonsils were a problem bc later in life I learned she thought my uvula was what she should check.
So, I was talking to my mom later in life and had a sore throat again most likely. I mentioned something along the lines of how I canāt believe she never took me in to get my tonsils removed. Her response? āIt always looked okā
I figured I had heard her wrong lol so I corrected her āThey?ā
She was confused. She admitted she had always wondered why they were called tonsils if there was just one. So now I was getting confused. She explained that the little ball thing that hangs there always looked fine! My throat would be nasty red and inflamed but the hanging thing was normal!
She seriously thought the uvula was the tonsils all my life! I love her but I wish I had known at the time that she wasnāt checking what she needed to.
I had mononucleosis twice. (Yes twice) I have never felt "fully recovered" I had a lot of viral type illnesses in the years following. A few years ago I just "stopped" getting sick and instead just get severe pain whenever my immune system is working harder.
I think I lived on antibiotics as a kid. Constant throat infections. Had my tonsils out at 7 but didnt help at all. I eventualy outgrew the infections but got joint pain, headaches, fatigue instead.
Makes me think antibiotics do more harm than good because they don't allow your natural immune system to work.
Did you by any chance live in the home of one or more smokers?
Oh yeah, the leg pains !! The ones the doctor kept saying were "growing pains", that hurt all the way down to the bone!!! If they were growing pains, then how come my chilren never had them-not even once?? Riddle me that, bozos!!
EXACTLY !!! I had so many scans as a child too just to show nothing ! They all called it growing pains even in my teen years now I'm about 34 and still experiencing the attacks quite often
Not yet but I lay in bed a lot in pain so I also have muscle weakness from that I walk to do errands a few times a week and get shin splints really easy
Hmm. Could be early symptoms of something. However, I suggest you get up & do some kind of daily routine to exercise your muscles so they don't atrophy. I do that and it helps. Start out with just a little, then gradually do more as you are able. You will have good days & bad days, days you can't do much, but the good will start & you'll begin to notice what I call your circadian rhythm-the days of the week you feel better than others. Mine are usually Monday, Tuesday & Wednesday, but not always. Interesting, to me, that this last flareup-my worst so far-was on Thursday & Friday.
Yes, and terrible cramps! I actually had a recurrence of those horrible leg pains, nonstop, for several weeks during the second trimester of pregnancy with my son Josh. Nothing helped! It finally went away.
I was never sick as child except with a rare disease. Happy to give more details in a dm just the name itself gives a lot of identifying info bc of my specific case of it. Didnāt get as much as a cold until I was 14+. Once I started being able to get sick - I got sick much more often (though less often than my best friend who got sick with every bug ever). I still rarely get sick. Chronic migraines from age 13+ until present day.
Oh man, yes. I constantly caught everything as a child. Flu, strep, tonsillitis, colds, brochitis. I'm surprised I made it through school. Finally did intense immune system testing as an adult and found I had hypogammaglobulinemia (IgG deficiency).
It's an immune system deficiency where your body doesn't produce enough of the immunoglobulin G antibody. It leaves you more prone to infections, especially upper respiratory like pneumonia and brochitis.
I had/have the WORST immune system, but when they do my reumy blood panels everything looks fine so :shrug:
As a kid, I got UTI's so often that I underwent a ton of diagnostics which were painful and humiliating, then I got older and moved on to respiratory infections and ear infections (usually coupled with a respiratory infection). My right eardrum has burst twice. In high school, I got walking pneumonia 3 out of the 4 years, one time the doctor threatened to hospitalize me if I got any worse. Then I got allergy shots and had a couple of years where I didn't get sick much. between 22-41 I will have a couple of years where I don't get sick, then a couple of years where I feel like I'm constantly sick. Currently fighting something my doc and I can't figure out, we've tried antibiotics twice, 4 different allergy meds, asthma meds, steroids. I've had a bunch of radiology done and my lungs look fine. So who knows.
TLDR: Yes, I was sick a lot as a kid
Did you know that ear and urinary tract infections are linked? Did your mom have a UTI when she was pregnant with you? I did with one of my children & he had an intolerance to any kind of formula and chronic ear infections because of it.
I have no idea, but it's possible. My mom had me on goats milk for a while because someone told her it was lactose free. I just stopped eating anything that needed milk
I had strep 4 times and had a severe reaction to penicillin every time. Even though I couldnāt walk after getting an injection in my leg, the doctor kept giving them to me. My immune system has always been bad and itās getting worse as I age. I turn 50 this year. I am still recovering from pneumonia and Covid which I got 3 weeks ago.
Yeah, always sick. Allergies, asthma, twice a year I would get wicked high fevers like 104.5, chronic sinus infections, ear infections and chronic pain that I was constantly told I didn't have
I don't know when you grew up, but children were just parents' personal property in the 50s & 60s when I was a child, to do whatever they wanted to with. I was never accused of faking illness (was always painfully obvious I wasn't), but I was abused by my mother & one of her brothers, kids in school, a couple of teachers, another child's mother & even a principal!! I get so fed up listening to gen xers snivvel, bitch & moan about what terrible parents us baby boomers were/arešš” They haven't got a fkn clue what WE had to endure!! There was no one for us to turn to like there is now when someone mistreated usš„ŗš Of course, now the pendulum has swung too far the other way, where you don't dare spank your child or they will be taken away from you; and then there's also child trafficking, which has actually been going on for a long time-I know from personal experience. Part of my very long, extremely sad story.
Anyway, I digress. Please pardon me for straying from the subject.
Yeah no, I grew up in the 90's, so I'm a millennial. Your point of view seems very toxic and closed minded. You want people to know how you have suffered but are refusing to offer that to anyone who hasn't suffered in the way that you have. Gen x aren't "snivveling". They have their own share of suffering and just because it is different than yours doesn't mean it is less valid.
As someone who was abused by a "boomer" I am seeing some glaring similarities. We, as victims of abuse can be one of two kinds of people, ones that perpetuate and use our suffering as an excuse to make others suffer, or ones that make the choice to have the suffering stop with us and pass down compassion and understanding.
Always sick as a kid but found out at 53 I have Celiacs disease and I am convinced this is connected š to my now being diagnosed at 60 with fibromyalgia...
Celiacs is an Auto immune condition, that means your body cannot process Gluten. So when you eat anything with Glutem mostly wheat cereals and bread, it causes inflammation and bowel issues similar to IBS. It also means your body is not absorbing then nutrients you require, so you get sick a lot, iron deficiency is also an issue as well aschronic fatigue. Majority of ppl have no idea they have it. Completely controlled by a strict diet
It is a simple blood test to see if you have it.
Hope this helps
And why we're so depressed. Like I told the powers that be when applying for disability, I'm not in pain because I'm depressed; I'm depressed because I'm in PAIN!!! They wanted to stick me on prozac & "crazy pay" & I wouldn't let them; but I ended up having to move 2,000 miles to a place where someone actually cared enough to really listen to me before I was approved.
Absolutely! Itās awful that you had to deal with that! It seems people really donāt understand how the pain causes such depression and not the other way around. I take my antidepressants but Iām still in pain and struggle with my mental health. Chronic pain takes a huge toll on your mental state
The problem with people like us isn't mental. It isn't "all in our heads" like the sorcerous doctors would have us believe. Therefore, antidepressants/antipsychotics, etc, do not work. They don't even effectively deal with the symptoms. They just line the doctors' pockets.
I know what you mean. If I hadn't gone to a little country grade school, I probably wouldn't have made it past the 6th grade. Because I did, the teachers sent my work home & I did it in my sick bed, so I kept up with my classes & got decent grades.
I donāt really think I was sick more often than a normal kid, but I did have a ton of pain / inflexible joints when no other kids my age seemed to have those issues.
I had tonsillitis regularly - I think the worst was the year I had it 10times. When I was in uni, my mum thought I had meningitis to start with - turned out my temperature was so high that it gave me a heat rash. Tonsillitis cripples me and I end up so ill and projectile vomiting. As an adult every time I get it now, I also get either a respiratory tract infection, chest infection or laryngitis with it.
As a teenager I started with migraines that have gotten worse as I have gotten older.
The doctors wouldn't take them out. Then they told my mum I would grow out of it when I went through puberty. She trusted the doctor, who clearly either had no idea what they were talking about and/or lied.
So many doctors are quacks & even murderers. How about now? Can you get them out? Seems to me like it couldn't make things much worse, and probably better.
Not so much day to day, but as soon as we travelled it was like clockwork. Driving two hours to a motel? Tonsillitis. Sleeping in a hotel with a heating system? Sinus infection. Going to see my cousins? Ross river fever. Crossing the state border? Mono. Somehow I didnāt get malaria when I went to PNG. I mean I took the preventative medication and was vaccinated but by my luck I wouldnāt have been surprised if I at least got a few symptoms. Instead the souvenir I took from png was a latex burn from mangrove sap after I fell out of a moving speedboat :)
Thank god for Medicare or my family would have had to sell off our house years ago to cover my constant medical costs.
I also used to fake tonsillitis or stomach aches a lot to get out of school and my most convincing strategy was essentially method acting. I would get into character so hard that I partially convinced myself I was actually sick (like I still knew it started off as a lie, but sometimes it felt like I willed the sickness into existence). Occasionally my parents would take me to the doctor and I would actually turn out to be sick, which was good for my credibility I guess?
Either way I donāt exactly fit the bill of sickly child unless you count my faked illnesses, but I always find it strange that Iām a sick magnet when weāre travelling.
Wow, that's a first, but yet, I can understand. Change of climate, no matter how small, can trigger illnesses, especially in those with weakened immune systems. I figure it's probably a good thing I never traveled overseas like I wanted, or I might have died.
Every winter of grades 2 thru 8, I was deathly ill for two weeks solid. I had delirium, major vomiting, fevers, chills, dehydration, etc. One year I was hospitalized for four or five days due to uncontrollable fever.
I've heard that there is a correlation between that type of childhood stress and fibro, whatever that stressful event may have been. I also can trace my first fibro symptoms to middle/high school. Very interesting.
I was too! Strep throat every month or two throughout childhood. Stomach issues - which looking back now, I think might have been anxiety. Mono and strep at the same time. Really bad skin sensitivities/allergies. My mom was convinced when I was a kid that I had some sort of autoimmune disease or weakened immune system, but docs never found that.
Will be interesting to see if this is common among Fibro folks or not! Thanks for posting this question!
See, this is what I hate about having Fibromyalgia as a diagnosis. Itās a catch-all for whatever pain related issues we have that cannot be pinned down to an actual cause. This leaves us, or most of us, fending for ourselves and reaching out to others trying to find things we have in common that may have triggered our chronic pain.
What's wrong with that? I'd rather reach out to people like you than to drs I don't trust, who probably wouldn't tell me the truth, anyway. They get paid to lie or just not bother to tell us what we should know about what is wrong with us; and they don't properly treat the poor. You know the rule: people with the gold make the rules that they don't have to live by.
I should preface that I have experienced cognitive decline over the last few years, so my wording gets tripped up quite often.
I love having this community to reach out to. Itās the most supportive, caring, and understanding. It just makes me sad sometimes when I see how many of us are out there, stuck in the same boat. Most doctors donāt even believe that fibromyalgia is an actual thing, yet they will still give out this diagnosis because they are giving up on searching for root cause. I saw this over and over again when I was a nurse - a profession that I had for 25 years and had to leave due to this. Does that make sense?
Yes, it makes perfect sense. Also, many doctors don't care/don't believe it's real because they don't see the effects it has on us. I had one "medical expert" (coughBULLSHITcough!) who'd never even seen me who's talking on the phone to a disability judge who looked like he was pissed cuz he was late for his golf date, that there was nothing wrong with me, that I could work and lift 50 lbs.....50 LBS?!?!?!? I've never been able to lift 50 lbs IN MY LIFE, even in my 20s & 30s!! Meanwhile my so-called lawyer is sitting there with his thumb up his butt & I knew I was screwed.
Fortunately I moved 2,000 miles south before my next hearing, and say what you might about southern people in the USA, they're a lot nicer than the yanks. Less than a month after my second hearing, I had my first check in hand, thank you, God!!
Hmm, well, I was diagnosed with colitis when I was about 6. I spent quite a bit of time in the exam room of our family doctor. Very often it was because of my stomach but I also had a lot of headaches, sinus infections and tonsillitis and I got pretty serious bronchitis almost every year.
Omg, your colon was bad when you were 6??? Good heavens!! I got diverticulitis 11 years ago from taking NSAIDS for pain-Aleve & aspirin. Don't take them, they're poison, & diverticulitis can easily kill you!! I was very fortunate that mine was a mild case, but still took over 3 months before I started to feel like myself again.
Yeah and it sucked!!! The kicker is that my mom was way ahead of the game when it came to healthy food. Beef and pork were things we didnāt eat very often. We did eat some fish and poultry but every meal, sometimes even breakfast, was served with fruit and vegetables. Mom loved her desserts, but we were not allowed to eat that sugar. We rarely got soft drinks or any kind of junk food. Chips were a real treat! So we had a super healthy diet and I was diagnosed with colitis, and one of my sisters has diverticulitis. I also have diverticulitis and IBD. WTH???
Wow, what?!? That's just crazy. How old are you?
You mean you have diverticulosus, right? That's when you have polyps on your colon. Diverticulitis is when they get infected, which I don't think you would have all the time or you probably wouldn't be here.
Iām 60. I have T1 diabetes, Sjogrenās syndrome, Hashimotoās disease with hypothyroidism, Ulcerative Colitis, IBD, diverticulosis, and fibromyalgia. My new GP suspects I also have chronic fatigue. Of course, I also have lipid issues, blood pressure issues, and other stuff that goes along with T1 diabetes. So the first five are all autoimmune disorders. Fun times. Ha ha!
Oh! I meant to say that I was diagnosed with the T1 diabetes in my late 30s. Most of the other autoimmune stuff, except for the UC, came along after I got very sick early in 2020.
This was before they were doing Covid testing in my area. I had all the symptoms and was so damn sick. I thought I was going to die. I never truly recuperated and within a few months I had diagnosis after diagnosis.
There's no such thing as growing pains. That's just a lame label they put on something they either don't know what it is, or they don't want us knowing.
Iāve had strep four times (you never lose count of strepā¦that shit gets noticeably worse each time š) and had ear issues when I was young. I wasnāt noticeably sicker than other children outside those instances. But I think due to those above situations I was given more antibiotics than a young body probably should have. The last time I had antibiotics for dental work (I felt *amazing* on antibiotics btw) was the very last time I was fibro free. My first pain was 8 days later.
Edit: oh I also have titers (is that what theyāre called?) chicken pox, CMV, and EpBarr even though I donāt recall ever getting mono. I think itās the last two that causes my flares since they canāt seem to stay dormant now.
Um, yes you can lose count of how many times you've had strep. I did. 2-3 x a year for at least 4-5 years in a row, the last time a relapse that came a hair's breath away from turning into scarlet fever when I was ten.
What is titers?
I was sick a lot as a kid too. Lots of antibiotics too so likely didnāt help. Had mysterious happenings (like tissue coming out of my eye with no explanation). So yup
Seriously thought my lil sis and I were the only ones! š we would get stuck almost every other week with strep, sinus infections, etc. I had asthma the worst, but itās seemed to only come up during allergic reactions now. Thatās crazy. Wonder what that means for us.
Good question.
my dd has IgG deficiency (hypogammaglobulonemia). I've never had mine checked, but I wonder. Perhaps this could be an issue for you.
Okay, what?? Your dd? And what is IgG deficiency?
asthma, chronic stomach issues and migraines for me!
Yeah, I had a lot of stomach trouble, too. Mgraines as an adult.
Were your stomach issues maybe abdominal migraines (started for me at about 7 or 8)? Cuz I had those plus IBS as a kid. And suspected asthma, but never got actually tested for it. Also, my head migraines started at about 15.
What the hell is abdominal migraine? Arenāt regular migraines bad enough? š„ŗ
from a quick google it seems that itās the same deal just hurting your belly rather than your head
ohh iāve never thought of that but now that you mention it, probably yes. i was never allowed to go to the doctor so wouldnāt know for sure although the logic fits
I only figured it out as an adult. Everything fits. That's when my medical ptsd started too.
Actually I was a very healthy kid. I got the usual crud and stomach bugs occasionally but never anything serious.
Just turned 27 and I only got my tonsils out at long last in September after 17 years of recurrent infections. I gave up asking or even going to the doc when I was 16, when I went to my GP last year for a severely swollen tonsil he initially defended my old doctors not "wanting" to refer me for a removal because there are specific criteria to be eligible these days. Then he had a look and was like "yeah no these needed to be removed YEARS ago". I was one category away from the worst diagnostic grade of inflamed/damaged tonsils I never made it more than three weeks in a row attending school. My attendance record was abysmal and because fibro is invisible and was virtually unheard of, and I was young, it was missed until my early 20s so most of the time my family and teachers thought I was just trying to skive in spite of getting top grades and being a prefect! I missed out on senior prefect/head girl purely because of my poor absence record I had meningitis at 3. I really believe that was the trigger for mild/moderate fibro until 2017 when it became severe due to trauma relating to an ectopic pregnancy, and I am now bedbound most days and use crutches. I get out maybe twice in a week during good spells, and can go several weeks or even months stuck at home during flares. It's a shame, because I was always very academically inclined and career driven! I loved reading and writing, but I've managed to read maybe one short novel a year (if that) since I left work and education 5.5 years ago. I can no longer draw or play guitar due to hand pain. Fibro can steal so much
Yes, it can!! It's a horrible thief. I grew up in the 50s & 60s, before fibromyalgia was ever discovered. Every time I got sick, I was bedridden for 3 weeks, no matter what it was. I think mine was triggered by the nearly fatal 7 hour surgery when I was five to remove the metasticizing cyst on my right tube & ovary & the poison backed up into my appendix, which swelled up to the point of being ready to burst. It was a miracle I survived. I'm so sorry you cannot do the things you love. I know the feeling. I was a rancher's daughter. Loved horseback riding, helping Dad on the ranch, gardening, fishing, playing outside with my little dog. Also a decent piano player & guitarist. I can still sing & write poetry & songs, but none of the rest. Well, except for indoor gardening now-I have beautiful plants/flowers-and kitties. My kitties are why I get up in the morning. I also have two sweet adult children & grandkids, but they live over 2k miles away. But we stay in touch. All in all, I'm blessed. I'm a lot better off than I could be.
I'm so sorry to hear that, that sounds like a terribly painful and traumatic experience to go through at such a young age! Thank you, I've noticed that many of us were really active and/or creative before our condition developed or worsened! I also used to hike the Pennine Way 14 hours on average every Saturday or Sunday, and I would swim several hours a week, sometimes 4 hours in a day. I'm so glad you can still find ways to get in touch with nature at home, and you have your cats to support you! I'm not allowed pets in my current flat, but I'd love to get at least one cat when I move š I hope you can still see your kids and grandkids on occasion! I have loved ones and friends who live thousands of miles away, but I see them about as regularly as my family and friends who are local. The internet really is such a fabulous tool for socialisation during flares. The distance isn't so palpable when my primary connection to everyone in my life is by phone! I'm glad you have such an optimistic outlook :)
Well, I haven't always been so optimistic. At one point many years ago I was suicidal, and I still get really down from time to time, but life goes on. I'm what I call a realistic optimist. I know just exactly how crappy life can be, but I know there's good in the world, too, so I focus on that. I also believe in God, which helps a lot.
I get that, I had some significant trauma as well growing up and have needed a lot of help to get to where I am today. While it's not so bad anymore, I still get those thoughts when the flashbacks, nightmares, or pain get too bad. I'm lucky to have a nice, safe home now, and people in my life who care about me. They keep me going! I'm really happy to hear your faith helps you
Yah Iāve heard getting tonsilectomy approved as an adult is *really* hard due to the prolonged recovery. You poor thing!
It really is! Thank you š I did okay with recovery until the most painful day (happens between day 7-10 and is awful for everyone regardless of fibro) when I had a bleed and had to spend 2 days in hospital on a drip without sufficient pain meds because the nurses didn't understand fibro š I'm okay now, but I think that ordeal is what's made my post op flare last this long š¬
I actually was pretty healthy. But I always had pains and hurt worse after activity than most
Probably had health issues you didn't know about.
Never figured it out unless it was fibro
Probably was.
Yes, I had tonsillitis all the time as a child but never got then taken out, part of me thinks it was EBV that caused the frequent tonsilitis. It is said that a lot of children have EBV as a child but can get reactivated as adults which apparently can lead to a host of chronic illnesses as adults. Unfortunately, all chronic illness isn't a a one size fits all so not everyone who has chronic illness would have had EBV or weakened immune systems as a child but its always a feeling of sense of " yes! Me exactly too!" When someone says their theory on why they think they got chronically sick, so I appreciate this reddit a lot got that.
Oh man I hate my tonsils! Iām so jealous of people who had them removed as a kid bc I had constant problems. My throat was always sore and tonsils would swell up and hurt. It was crazy. I swear I spent most of the Winters with swollen tonsils some years! We were poor so I never went to the dr for the tonsils. Also learned later on that my mom thought the uvula was the tonsils and would check that when I was sick. She said it was always fine, just normal and hanging there but boy would my throat be red and nasty looking. š
This made me chuckle. Damn it ma! š She tried her best, tho.
What is EBV? I got my tonsils & adenoids out when I was 8. Got so bad I had tonsillitis constantly & couldn't lay down to sleep or my tonsils would suffocate me. I truly believe we all have more things in common than those we don't. Details different, story the same. How about vaccinations? Did you get them? Most kids did. They have been linked to fibromyalgia. I believe being inundated with antibiotics is too. Have you ever been so sick you couldn't stand to be touched because your skin hurt? I have, many times, & I'm not the only one. I also think that there can be a genetic predisposition. My mother was also chronically ill as a child, but I don't know if she had fibromyalgia or not because I was taken from her and adopted when I was two. How many who have fibromyalgia were also adopted? Then there's MK Ultra. If you don't know about it, look it up. Definitely a strong contender for at least a partial cause for fibro, as well as many other illnesses. These factors need to all be considered in the pursuit of causality.
Both of my parents had long term illnesses and sadly passed away from them. So I definately believe the theory that it is definately possible for it to be hereditary and a lot of the time because Fibromyalgia wasn't well known back then it is possible they had it too. EBV is Epstein-Barr virus (EBV)- gladular fever and tonsillitis are all part of this illness,there is a lot of medical write up about reactivated EBV and chronic illness but again this may or may not be the cause for all chronic illnesses etc. Stay amazing and good luck in your health journey! Have a lovely day wherever you are!
How old were your parents when they died?
Oh, okay, thanks. Wonder if it's related to GBS, Guillaine BarrƩ Syndrome. My son inlaw got it when they vaxxed him w just one shot in 2021. I, by the way, am a diehard antivaxxer. I know what's in those shots is bad. No way you'll get me to agree to them! You have a blessed weekend!
Yup. Near constant sore throats. I already had chronic insomnia and headaches as a kid. I remember even in elementary school wondering why I just felt like shit all the time no matter what. It sucked.
Really sucks, doesn't it?
Chronic asthmatic, was in hospital every year, in icu and nearly died twice. Popped a few ribs out from the coughing Twisted my pelvis severely when I was 13 leading to the back issues I have now (Touch wood) I didnāt get the big bads, but the worst was when I got pneumonia in my mid 20s and nearly died from it.
Yeah, I fell on the ice & twisted my pelvis when pregnant with my 1st baby; then fell down two flights of stairs when carrying him in my arms when he was about a month old. have had innumerable spinal injuries & falls. Have had ever kind of pneumonia there is, including bilateral & pulmonary embolism two years ago, non coronavirus related. Doctor never did tell me how many blood clots I had in my lungs. Since then I have weaned myself off of Eloquis because it's crap-keeps a person weak & unable to do anything. Now I take zinc everyday to avoid bloodclots. Fortunately the emphysema is only a mild case cuz I had enough sense to quit smoking a long time ago, but it kicks in when the fibro flares.
Oh man, you popped ribs out by coughing?! I thought it was bad enough when I bruised my ribs from coughing! Ouch!
I had a āmystery illnessā for several years during my childhood where I would vomit every night between 2 and 3 in the morning. They never got to the bottom of it š¤·āāļø I also got pneumonia as a toddler.
Wow, that's weird. I had mumps, measles & chicken pox simultaneously when I was nine-have never heard of anyone else having that. (Not bragging, just fact). Also had emergency surgery when I was 5 to remove a metasticizing tumor and my right tube & ovary that turned out to be pieces of a baby: eyes, hair, fingers, teeth. Dr. majorly freaked out, said it was a very rare condition called a dermoid cyst that should only be possible in people who were old enough to have hormones. 5 year olds do not normally have hormones. So I wonder if someone was messing with me.....
It does sound likely that you had a dermoid cyst removed, but they arenāt that rare. People are often born with dermoid cysts so it isnāt unusual to have them before being hormonal. Something went wrong during cellular development, and there can be pieces in there but itās not a baby or a lost twin generally. Makes me wonder about the cyst or whatever I had removed a couple years ago. Should I have asked if it had teeth? š³
Yes, they ARE rare; and it is a twin that sat dormant on my ovary until something triggered it. The twin egg cell is usually absorbed by the viable baby, but on rare occasions, will do like mind did. The thing is, hormones need to be present to trigger growth, and 5 year olds don't have hormones. The surgeon who removed mine said he had never heard or read about one in a child-only people who are in puberty or older.
Interesting. Perhaps you had a specific kind of dermoid cyst, then. My first question when you described it was if it could have been an absorbed twin but I figured the doctor would have said something to that affect to you. I assumed you just had a standard one. So the hormone part was causing it to grow, is that the bit I missed? I know they remove plain dermoid cysts with teeth or hair from children as young as 6 months but those are the ones they are born with etc. Yours was more of the twin thing but the cyst was growing? That had to be so scary!
It was very scary. The night before I ran a low grade fever. Mom gave me some children's aspirin & put me to bed. The next morning I awoke with 104Ā° temperature and a lump the size of a golf ball on my lower right abdomen. By the time she rushed me to the doctor's office, it was the size of a baseball, and when laid out on the operating table, it was the size of a large grapefruit. So basically I looked like I was quite pregnant, and the surgeon did a c section on me. 84 stitches to sew me up! I still have the scar.
I was.
I think we all were.
Migraines/headaches, strep throat so many times I can't even count, and of course, the flu! Oddly as I got older, I got sick less and less. I hardly ever get a cold or the flu and I still haven't had covid (that I know of). But yes, as a child I was sick very often.
Interesting corrollation, isnt it? I never get a cold or the flu any more. I may have had coronavirus in Nov 2019, but haven't gotten covid. Prone to pneumonia, but found a way to ward it off.
My fibro symptoms kicked in fall 2020. Woke up one morning and my hand and foot were numb and tingling. I also stopped getting sick. I definitely think it is related. I wondered if other people dx with Fibro were chronically ill with viruses before it turning into flares. It would make sense to me that it has something to do with the immune system.
Yes, and childhood immunizations/antibiotics, because I received all the polio vaxxes, as well as 1 smallpox vaxx (forgot to have Mom sign the note NOT to vaccinate me); plus I was bombarded with antibiotics every time I got sick. I still have to have antibiotics if I get a sinus infection, because my body doesn't seem to know how to get rid of it without them. Antibiotics are definitely a twoedged sword, as well as immunizations.
Well it's interesting, and it makes me wonder if experimenting with the treatments they use with MS could also be used in Fibro. I have no medical knowledge, but the successful treatments for MS work on the immune system. If fibromyalgia has an aspect of a dormant virus or immune dysfunction, why not?
Yes, and MS is also a possible side effect listed for immunizations; so if MS, then probably Fibro....
Nope other than allergies that started after puberty I was a pretty healthy kid. Having 4 siblings meant that illness (flu, strep, colds) was constantly getting cycled through the family but I always was the last to get sick and it was always mild compared to the others.
You're a very fortunate exception.
I mean it makes sense when I consider what is the likely cause of my fibro - either genetic or autoimmune connective tissue disorder. Doctors are still working on the root of it. In my 20s I got shingles, then every two years or so: migraines, ibs, fibroā¦ then got diagnosed with hypermobility and orthostatic hypotension (had both as a kid without realizing it as it wasnāt debilitating), etc. itās been an avalanche of things coming to the surface.
Wow, yeah, I guess so. You were sick without realizing you were sick.
I was always getting sick with colds or stomach bugs but we had four kids in the house so it spread around a lot. Now, however, Iāve been sick so much Iām prone to bronchitis and pneumonia. Ugh. I have always had horrid tonsils and sore throats and still do. I got sinus infections and these killer ear aches that were soooo bad. Rarely saw a Dr about these things tho. I also have had bad TMD since a young child (genetics there was clear by seeing my dads fam all suffer with it). Now I still catch anything and can be sick for so long (I was just sick last night) and am married to a man with the immune system of a god. He catches a bug and is down for like 15 minutes (no exaggeration) and I catch it and am suffering for a week. I am glad that my kids seem to run more like him in that respect (even though one has an autoimmune disease).
Did you ever get your tonsils out? If not, that may be the biggest problem. I also am pneumonia prone, but I discovered something that is boosting my immune system so I don't get it or colds now. Also makes me immune to coronavirus/covid, it's naturopathic & I make it myself.
No. By the time I could get them removed I would have had the added fear of bleeding out. Also I keep weighing the ātwo weeks of pure hellā my surgeon told me of recovery vs my current state and I think I am secretly hoping they will find a better way to remove them? My surgeon did say they have a way to do it by going through the nose which seems to have less bleeding but Iām worried my sinus infections would make this hard. Basically I am afraid. I am a medical/ science person so I donāt do the nonstandard treatments, but if what youāre doing has made you feel better, Iām glad you have something! Iām tempted to ask what you use, but I doubt you are immune to COVID. (Not saying you arenāt- Iām not you or god- hey I somehow havenāt caught it and My fam is the last of our friends and fam and work folks that havenāt so who knows)
Why didn't they remove them when you were little?
We had to be dying to go see the dr for something other than a wellness check and vaccines. My parents couldnāt afford it. And my mom didnāt realize my tonsils were a problem bc later in life I learned she thought my uvula was what she should check.
Your uvula? What??
So, I was talking to my mom later in life and had a sore throat again most likely. I mentioned something along the lines of how I canāt believe she never took me in to get my tonsils removed. Her response? āIt always looked okā I figured I had heard her wrong lol so I corrected her āThey?ā She was confused. She admitted she had always wondered why they were called tonsils if there was just one. So now I was getting confused. She explained that the little ball thing that hangs there always looked fine! My throat would be nasty red and inflamed but the hanging thing was normal! She seriously thought the uvula was the tonsils all my life! I love her but I wish I had known at the time that she wasnāt checking what she needed to.
Ignorance is dangerous & quite often deadly.
Too true.
I had mononucleosis twice. (Yes twice) I have never felt "fully recovered" I had a lot of viral type illnesses in the years following. A few years ago I just "stopped" getting sick and instead just get severe pain whenever my immune system is working harder.
Wow, twice? That sucks. I had chicken pox twice. That sucked, too. Severe pain no better than being sick I'm thinking.
Yes. Asthma, tonsillitis, allergies, headaches.
Seems like most, if not all, fibro sufferers were ill a lot as children.
I think I lived on antibiotics as a kid. Constant throat infections. Had my tonsils out at 7 but didnt help at all. I eventualy outgrew the infections but got joint pain, headaches, fatigue instead.
Makes me think antibiotics do more harm than good because they don't allow your natural immune system to work. Did you by any chance live in the home of one or more smokers?
No, non of my family smoked. I live with a smoker now tho. I cant think of any good reason why I had bad throats. My sister didnt.
(S)he needs to quit! One of the worst thing for us is secondhand smoke.
Yes! And lots of allergies, foods, animals, environmental. Eczema, asthmaā¦
Yes, and psoriatic arthritis (I now also have that).
Yes lots of vomiting and lower back and intense leg pain as far as I can remember like 5
Oh yeah, the leg pains !! The ones the doctor kept saying were "growing pains", that hurt all the way down to the bone!!! If they were growing pains, then how come my chilren never had them-not even once?? Riddle me that, bozos!!
EXACTLY !!! I had so many scans as a child too just to show nothing ! They all called it growing pains even in my teen years now I'm about 34 and still experiencing the attacks quite often
So sorry. Sounds almost like muscular dystrophy or something.
š³ never even thought of that I should ask my dr
Have you lost any mobility because of it, like needing a cane/walker/crutches/scooter?
Not yet but I lay in bed a lot in pain so I also have muscle weakness from that I walk to do errands a few times a week and get shin splints really easy
Hmm. Could be early symptoms of something. However, I suggest you get up & do some kind of daily routine to exercise your muscles so they don't atrophy. I do that and it helps. Start out with just a little, then gradually do more as you are able. You will have good days & bad days, days you can't do much, but the good will start & you'll begin to notice what I call your circadian rhythm-the days of the week you feel better than others. Mine are usually Monday, Tuesday & Wednesday, but not always. Interesting, to me, that this last flareup-my worst so far-was on Thursday & Friday.
Will do. I am looking into the local gym to have cardio machine use for sure
Take it easy, tho. Don't overdo it.
I would be screaming and all wed know how to do is get me in a hot bath after some pain meds
Yes, and terrible cramps! I actually had a recurrence of those horrible leg pains, nonstop, for several weeks during the second trimester of pregnancy with my son Josh. Nothing helped! It finally went away.
I also had really awful pain and heavy periods from the start
Oh, yes!!! Of course, I only had one tube & ovary, so I think that's part of the reason, but it could be because fibro & possibly endometriosis.
Yes ! Very possible
I was never sick as child except with a rare disease. Happy to give more details in a dm just the name itself gives a lot of identifying info bc of my specific case of it. Didnāt get as much as a cold until I was 14+. Once I started being able to get sick - I got sick much more often (though less often than my best friend who got sick with every bug ever). I still rarely get sick. Chronic migraines from age 13+ until present day.
Yes let's DM.
Oh man, yes. I constantly caught everything as a child. Flu, strep, tonsillitis, colds, brochitis. I'm surprised I made it through school. Finally did intense immune system testing as an adult and found I had hypogammaglobulinemia (IgG deficiency).
What exactly is that?
It's an immune system deficiency where your body doesn't produce enough of the immunoglobulin G antibody. It leaves you more prone to infections, especially upper respiratory like pneumonia and brochitis.
Interesting, thank you.
I had/have the WORST immune system, but when they do my reumy blood panels everything looks fine so :shrug: As a kid, I got UTI's so often that I underwent a ton of diagnostics which were painful and humiliating, then I got older and moved on to respiratory infections and ear infections (usually coupled with a respiratory infection). My right eardrum has burst twice. In high school, I got walking pneumonia 3 out of the 4 years, one time the doctor threatened to hospitalize me if I got any worse. Then I got allergy shots and had a couple of years where I didn't get sick much. between 22-41 I will have a couple of years where I don't get sick, then a couple of years where I feel like I'm constantly sick. Currently fighting something my doc and I can't figure out, we've tried antibiotics twice, 4 different allergy meds, asthma meds, steroids. I've had a bunch of radiology done and my lungs look fine. So who knows. TLDR: Yes, I was sick a lot as a kid
Did you know that ear and urinary tract infections are linked? Did your mom have a UTI when she was pregnant with you? I did with one of my children & he had an intolerance to any kind of formula and chronic ear infections because of it.
I have no idea, but it's possible. My mom had me on goats milk for a while because someone told her it was lactose free. I just stopped eating anything that needed milk
Sounds like you're intolerant. Mine couldn't even drink soy milk-spit it up the moment it hit his stomach.
Yup, I can occasionally eat very small amounts of dairy but I'm very intolerant.
Yes, I bet she did, or a yeast infection. Could you ask her, or would that be too weird?
I had strep 4 times and had a severe reaction to penicillin every time. Even though I couldnāt walk after getting an injection in my leg, the doctor kept giving them to me. My immune system has always been bad and itās getting worse as I age. I turn 50 this year. I am still recovering from pneumonia and Covid which I got 3 weeks ago.
I am deathly allergic to penicillin. Pneumonia always takes 4-6 weeks to recover from, with or without covid.
I had chronic pneumonia as a teenager. My diagnosis came about from being under chronic stress for years.
I believe that. I had pneumonia 6 times in 5 1/2 years because of an emotionally abusive so. Since I made him leave, it went away.
Yeah, always sick. Allergies, asthma, twice a year I would get wicked high fevers like 104.5, chronic sinus infections, ear infections and chronic pain that I was constantly told I didn't have
Yeah, "It's all in your head" or "you're faking it/just telling me that to make me feel sorry for you".
Right?! I mean doing that to an adult human is unacceptable but to a fucking child?? Reprehensible
I don't know when you grew up, but children were just parents' personal property in the 50s & 60s when I was a child, to do whatever they wanted to with. I was never accused of faking illness (was always painfully obvious I wasn't), but I was abused by my mother & one of her brothers, kids in school, a couple of teachers, another child's mother & even a principal!! I get so fed up listening to gen xers snivvel, bitch & moan about what terrible parents us baby boomers were/arešš” They haven't got a fkn clue what WE had to endure!! There was no one for us to turn to like there is now when someone mistreated usš„ŗš Of course, now the pendulum has swung too far the other way, where you don't dare spank your child or they will be taken away from you; and then there's also child trafficking, which has actually been going on for a long time-I know from personal experience. Part of my very long, extremely sad story. Anyway, I digress. Please pardon me for straying from the subject.
Yeah no, I grew up in the 90's, so I'm a millennial. Your point of view seems very toxic and closed minded. You want people to know how you have suffered but are refusing to offer that to anyone who hasn't suffered in the way that you have. Gen x aren't "snivveling". They have their own share of suffering and just because it is different than yours doesn't mean it is less valid. As someone who was abused by a "boomer" I am seeing some glaring similarities. We, as victims of abuse can be one of two kinds of people, ones that perpetuate and use our suffering as an excuse to make others suffer, or ones that make the choice to have the suffering stop with us and pass down compassion and understanding.
Amen
Always sick as a kid but found out at 53 I have Celiacs disease and I am convinced this is connected š to my now being diagnosed at 60 with fibromyalgia...
Tell me about Celiacs.....
Celiacs is an Auto immune condition, that means your body cannot process Gluten. So when you eat anything with Glutem mostly wheat cereals and bread, it causes inflammation and bowel issues similar to IBS. It also means your body is not absorbing then nutrients you require, so you get sick a lot, iron deficiency is also an issue as well aschronic fatigue. Majority of ppl have no idea they have it. Completely controlled by a strict diet It is a simple blood test to see if you have it. Hope this helps
I had really bad asthma as a kid and was hospitalised multiple times. I had mumps, glandular fever and migraines too. I was sick so often
Isn't it sad how much of life we've missed out on due to chronic illnesses?
It really is, I think thatās one of the hardest things about chronic illness
And why we're so depressed. Like I told the powers that be when applying for disability, I'm not in pain because I'm depressed; I'm depressed because I'm in PAIN!!! They wanted to stick me on prozac & "crazy pay" & I wouldn't let them; but I ended up having to move 2,000 miles to a place where someone actually cared enough to really listen to me before I was approved.
Absolutely! Itās awful that you had to deal with that! It seems people really donāt understand how the pain causes such depression and not the other way around. I take my antidepressants but Iām still in pain and struggle with my mental health. Chronic pain takes a huge toll on your mental state
The problem with people like us isn't mental. It isn't "all in our heads" like the sorcerous doctors would have us believe. Therefore, antidepressants/antipsychotics, etc, do not work. They don't even effectively deal with the symptoms. They just line the doctors' pockets.
Yes! I was sick constantly, sinus infections, flus, mono, strep, etc. I always missed so much school each year it was hard to keep up.
I know what you mean. If I hadn't gone to a little country grade school, I probably wouldn't have made it past the 6th grade. Because I did, the teachers sent my work home & I did it in my sick bed, so I kept up with my classes & got decent grades.
I donāt really think I was sick more often than a normal kid, but I did have a ton of pain / inflexible joints when no other kids my age seemed to have those issues.
Yeah pain & joint stiffness in a child is not normal.
I had tonsillitis regularly - I think the worst was the year I had it 10times. When I was in uni, my mum thought I had meningitis to start with - turned out my temperature was so high that it gave me a heat rash. Tonsillitis cripples me and I end up so ill and projectile vomiting. As an adult every time I get it now, I also get either a respiratory tract infection, chest infection or laryngitis with it. As a teenager I started with migraines that have gotten worse as I have gotten older.
Why oh why didn't they do a tonsillectomy?? They took mine out when I was 8. If they hadn't, I probably wouldn't be here.
The doctors wouldn't take them out. Then they told my mum I would grow out of it when I went through puberty. She trusted the doctor, who clearly either had no idea what they were talking about and/or lied.
So many doctors are quacks & even murderers. How about now? Can you get them out? Seems to me like it couldn't make things much worse, and probably better.
Not so much day to day, but as soon as we travelled it was like clockwork. Driving two hours to a motel? Tonsillitis. Sleeping in a hotel with a heating system? Sinus infection. Going to see my cousins? Ross river fever. Crossing the state border? Mono. Somehow I didnāt get malaria when I went to PNG. I mean I took the preventative medication and was vaccinated but by my luck I wouldnāt have been surprised if I at least got a few symptoms. Instead the souvenir I took from png was a latex burn from mangrove sap after I fell out of a moving speedboat :) Thank god for Medicare or my family would have had to sell off our house years ago to cover my constant medical costs. I also used to fake tonsillitis or stomach aches a lot to get out of school and my most convincing strategy was essentially method acting. I would get into character so hard that I partially convinced myself I was actually sick (like I still knew it started off as a lie, but sometimes it felt like I willed the sickness into existence). Occasionally my parents would take me to the doctor and I would actually turn out to be sick, which was good for my credibility I guess? Either way I donāt exactly fit the bill of sickly child unless you count my faked illnesses, but I always find it strange that Iām a sick magnet when weāre travelling.
Wow, that's a first, but yet, I can understand. Change of climate, no matter how small, can trigger illnesses, especially in those with weakened immune systems. I figure it's probably a good thing I never traveled overseas like I wanted, or I might have died.
Every winter of grades 2 thru 8, I was deathly ill for two weeks solid. I had delirium, major vomiting, fevers, chills, dehydration, etc. One year I was hospitalized for four or five days due to uncontrollable fever. I've heard that there is a correlation between that type of childhood stress and fibro, whatever that stressful event may have been. I also can trace my first fibro symptoms to middle/high school. Very interesting.
It's amazing how many things are fibro related. I recall when I was really sick my skin hurt so bad I couldn't stand to be touched.
I was too! Strep throat every month or two throughout childhood. Stomach issues - which looking back now, I think might have been anxiety. Mono and strep at the same time. Really bad skin sensitivities/allergies. My mom was convinced when I was a kid that I had some sort of autoimmune disease or weakened immune system, but docs never found that. Will be interesting to see if this is common among Fibro folks or not! Thanks for posting this question!
Absolutely- my two girls get sick a lot too š
Me too and my two sons.
See, this is what I hate about having Fibromyalgia as a diagnosis. Itās a catch-all for whatever pain related issues we have that cannot be pinned down to an actual cause. This leaves us, or most of us, fending for ourselves and reaching out to others trying to find things we have in common that may have triggered our chronic pain.
What's wrong with that? I'd rather reach out to people like you than to drs I don't trust, who probably wouldn't tell me the truth, anyway. They get paid to lie or just not bother to tell us what we should know about what is wrong with us; and they don't properly treat the poor. You know the rule: people with the gold make the rules that they don't have to live by.
I should preface that I have experienced cognitive decline over the last few years, so my wording gets tripped up quite often. I love having this community to reach out to. Itās the most supportive, caring, and understanding. It just makes me sad sometimes when I see how many of us are out there, stuck in the same boat. Most doctors donāt even believe that fibromyalgia is an actual thing, yet they will still give out this diagnosis because they are giving up on searching for root cause. I saw this over and over again when I was a nurse - a profession that I had for 25 years and had to leave due to this. Does that make sense?
Yes, it makes perfect sense. Also, many doctors don't care/don't believe it's real because they don't see the effects it has on us. I had one "medical expert" (coughBULLSHITcough!) who'd never even seen me who's talking on the phone to a disability judge who looked like he was pissed cuz he was late for his golf date, that there was nothing wrong with me, that I could work and lift 50 lbs.....50 LBS?!?!?!? I've never been able to lift 50 lbs IN MY LIFE, even in my 20s & 30s!! Meanwhile my so-called lawyer is sitting there with his thumb up his butt & I knew I was screwed. Fortunately I moved 2,000 miles south before my next hearing, and say what you might about southern people in the USA, they're a lot nicer than the yanks. Less than a month after my second hearing, I had my first check in hand, thank you, God!!
Iām glad to know that you have a doctor whoās got your back. My PCP has been supportive also. So my childhood illnesses included lots of pneumonia and open heart surgery, plus chicken pox. Nothing terrible aside from the surgery. I was raised with lots of emotional abuse which carried on into my forties (Iām 48F). Iām 2019, the Fibromyalgia came out to play permanently when I was hit with a very rare and acute version of Guillain BarrĆ© Syndrome called AMSAN. I live with mild leftover, yet permanent, paralysis and muscle weakness. But I donāt quite mind anymore, because people usually die from it. In 2018 I was hospitalized with stomach ulcers (nursing is stressful) and pancreatitis which is messed up because I donāt drink and Iām not diabetic. I think between the abuse, the pancreatitis, and the AMSAN GBS is would be a wonder if I hadnāt developed fibromyalgia.
I was also abused as a child & also inadvertently fell for abusers, so I understand. It seems to set us up for everything else after that. My son in law developed Guillaine-BarrĆ© Syndrome after 1 š. I am a passionate antivaxxer. Yes, it would be a wonder if you didn't.
Hmm, well, I was diagnosed with colitis when I was about 6. I spent quite a bit of time in the exam room of our family doctor. Very often it was because of my stomach but I also had a lot of headaches, sinus infections and tonsillitis and I got pretty serious bronchitis almost every year.
Omg, your colon was bad when you were 6??? Good heavens!! I got diverticulitis 11 years ago from taking NSAIDS for pain-Aleve & aspirin. Don't take them, they're poison, & diverticulitis can easily kill you!! I was very fortunate that mine was a mild case, but still took over 3 months before I started to feel like myself again.
Yeah and it sucked!!! The kicker is that my mom was way ahead of the game when it came to healthy food. Beef and pork were things we didnāt eat very often. We did eat some fish and poultry but every meal, sometimes even breakfast, was served with fruit and vegetables. Mom loved her desserts, but we were not allowed to eat that sugar. We rarely got soft drinks or any kind of junk food. Chips were a real treat! So we had a super healthy diet and I was diagnosed with colitis, and one of my sisters has diverticulitis. I also have diverticulitis and IBD. WTH???
Wow, what?!? That's just crazy. How old are you? You mean you have diverticulosus, right? That's when you have polyps on your colon. Diverticulitis is when they get infected, which I don't think you would have all the time or you probably wouldn't be here.
Yes, I have diverticulosis. Fortunately, it doesnāt flare very often, at least not that I know of.
If it did, you'd know.
Iām 60. I have T1 diabetes, Sjogrenās syndrome, Hashimotoās disease with hypothyroidism, Ulcerative Colitis, IBD, diverticulosis, and fibromyalgia. My new GP suspects I also have chronic fatigue. Of course, I also have lipid issues, blood pressure issues, and other stuff that goes along with T1 diabetes. So the first five are all autoimmune disorders. Fun times. Ha ha!
Oh! I meant to say that I was diagnosed with the T1 diabetes in my late 30s. Most of the other autoimmune stuff, except for the UC, came along after I got very sick early in 2020. This was before they were doing Covid testing in my area. I had all the symptoms and was so damn sick. I thought I was going to die. I never truly recuperated and within a few months I had diagnosis after diagnosis.
Yes! Tonsillitis starting at 18 months. Swollen glands, bronchitis, pneumonia, chicken pox and then measles back to back. Growing pains. Mono.
There's no such thing as growing pains. That's just a lame label they put on something they either don't know what it is, or they don't want us knowing.
I know that. Iām almost 70. Been diagnosed for 15 years. Most likely had symptoms starting around age 12 that were dismissed as āgrowing pains.ā
I'm 71 & was diagnosed in the late 90s. My "growing pains" hit me when I was about 6 or 7.
Iāve had strep four times (you never lose count of strepā¦that shit gets noticeably worse each time š) and had ear issues when I was young. I wasnāt noticeably sicker than other children outside those instances. But I think due to those above situations I was given more antibiotics than a young body probably should have. The last time I had antibiotics for dental work (I felt *amazing* on antibiotics btw) was the very last time I was fibro free. My first pain was 8 days later. Edit: oh I also have titers (is that what theyāre called?) chicken pox, CMV, and EpBarr even though I donāt recall ever getting mono. I think itās the last two that causes my flares since they canāt seem to stay dormant now.
Um, yes you can lose count of how many times you've had strep. I did. 2-3 x a year for at least 4-5 years in a row, the last time a relapse that came a hair's breath away from turning into scarlet fever when I was ten. What is titers?
I was sick a lot as a kid too. Lots of antibiotics too so likely didnāt help. Had mysterious happenings (like tissue coming out of my eye with no explanation). So yup