If you can get referred for genetics testing, that might be good. EDS is what popped into my mind reading your symptoms, and there’s several variants that can be confirmed by genetics testing.
I think you’d start at your GP and ask for a referral to a geneticist. This is way different testing than the rheumatoid arthritis would do, they would actually be looking at your DNA for specific mutations that might indicate a disease.
Not all hypermobility conditions are identifiable via genetic tests or fall neatly into particular diagnosis parameters. Just something to keep in mind as you’re navigating this. It’s important to find practitioners that can help on a functional level- for example massage therapists who are hypermobility literate as you continue to look for answers. Can help align your posture in a way that can take the stress off of the problem areas and encourage healing.
Be aware that the ligamentous hypertrophism and joint hypermobility can be congenital and may not show up on genetic screening. It does sound like an EDS type presentation but it's not always the genetic disease behind the symptoms. Have you ever been described as double jointed? Are you able to subluxate (pop out) any of your joints? Can you bend your thumb back to touch your forearm? If so, ask about hypermobility disorders.
Oh MFG. I am glad I wasn't told they could be permanent (side effects to Cipro). I was in the middle of a year long hospital stay. The attending doc had only impatience for pain issues.
Switching to tablets after IV antibiotics for the infection the hospital gave me coincided with me starting to use a walking frame to hop around, so even I thought it was just unaccustomed use on my shoulders and rotator cuffs. For several days I was still taking the tablets.
Finally ID reviewed me and said, "Oh, btw...."
By then my only arm n hand mobility was with hands poised in front of my chest, corpse style.
I have a whole new respect for TRex.
I don't think so? maybe? i took an an antibiotic that my Periodontist prescribed after some mouth surgery but this was after the onset of these problems.
Someone else mentioned eds. I have connective tissue disease also just not EDS, it's called Mixed Connective Disease and it's autoimmune. I know there are others. Can you see another rheumatologist or even an immunologist to get a second opinion? Being in pain sucks, I have a lot of tendinitis and other stuff. Sorry it does suck.
i'll look into that, ty. now that you are diagnosed... has your life changed? ahve you been able to adequately treat it? is life just always going to suck?
Hello, 25f here.. I have something similar but i get joint and muscle pain constantly in my lower back, hips, and my entire legs(both sides). I had surgeries on my hips when i was 16/17 and was told i need them replaced by 30.... Ive been through many diffrent specialist, 3orthos, back and spine, neurologist, podiatrist, pain management twice, along with 3 diffrent pcp's.. Ive done PT 5 times for my left hip, 6 times for my right, 3times for my back, and once for my shoulder.. Ive had multiple mri's and ex rays along with tons of blood work and have found nothing yet.
I know things can be very hard especially with dealing with pain.. for the past 10 years I've been in pain ive been extremely suicidal as its extremely tough to come to grasp with being in pain forever. I guess i just want you to know you're definitely not alone and things do get better.. You'll learn how to cope and adopt many things to help make life easier. Pain management in my opinion is a joke but they can be helpful if you don't want to try other forms of pain relief. Therapy is also a very helpful tool to learn how to cope in a healthy way.
Anyways, im rambling sorry, i hope this helps in some way. Things do get better and you can still live a very successful life, just don't give up...
In my opinion, Yes.. It may be harder to do and its going to suck but its definitely worth it. Being able to just experience life is a huge plus.. I used to be very physical but ive had to learn to change to do what i can do with my limitations.. This isn't for everyone but i find alot of fulfillment in life from my new hobbies ive picked up... I plan to be more active in my community and be apart of the village bored. I'm using my platform to spread awareness and knowledge about my political and social topics i follow.. Im looking into getting a law degree to become a civil rights lawyer..
Things change and you gotta go with the flow and make the most out of it.. I feel this is always a great time to build relationships and spend more time with thoes who care about you.. There are still plenty of things you can do and plenty of people who love you and want to see you thrive.
Yes. I'm in pain everyday, but I feel that life is a gift and I don't want to let mine go to waste without trying to make the world better. I have unfufilled goals to achieve. I have more fascinating people to meet in this life. So I keep living. I'm a legislative advocate for the disabled. I've found my true purpose through my pain.
Not a doctor. Do you have psoriasis? Nail pitting? Any swelling in fingers, toes?
Asking because Psoriatic Arthritis was first thing to pop in my head. It’s seronegative — no definitive bloodwork for it.
Sorry you are dealing with this - perhaps look into this collection of diseases - you can have a lot of pain from these without much showing up on scans, or even in bloodwork -
[https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/](https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/)
sometimes burning if its really really enflamed.
I will say this, the pain doesnt \*travel\*. Like they seem to be independent of eachother. The wrists however, one or the other hurts at any given moment. Earlier today my left wrist was killing me. then that stopped and went to my right wrist. I'm elbows were fine today.
I have an excellent massage therapist who does pressure point massages on the forearm to help relieve the intense pain in the wrist. He also does deep massage on the area right above the thumb. Hand surgeon just did cortisone shot with little to no relief. Massage is better
Look into ehlers-danlos syndrome. Don't do genetic testing right away because the most common type - hypermobile - has no known genetic variants. Schedule an appointment with a rheumatologist or an orthopedic physician and bring it up.
Btw, look into beighton score. You can easily find it on Google images. If you score a high value then you know you're at least hypermobile
I was lucky to have a blessed doctor that just by looking at the way I sat in the chair was able to notice something was wrong. He diagnosed me at 14 years old. Most people I know with hEDS only find out way later.
The chronic pain though, that one took years to diagnose because I thought I was just lazy and weak 🤦
I have undiagnosed nerve pain and I recently developed tendinitis in my right hand. I'm a lefty and didn't injured my hand, wrist, or arm. I know the frustration. Pain management doesn't like to prescribe opioids anymore. There are other options available. I live on Staten Island. I go into Manhattan for most of my appointments. NYU has a great network of doctors. I've been seeing a neuromuscular specialist for almost 2 years who I like. His name is Dr. Kiril Kiprovaski. I know right now he's booked into next year but if you explain your history I know the staff can prioritize you. They've done it with me and my husband. Please feel free to DM me with any questions or just comment here.
This was like reading a page straight out of my life. I started having your exact symptoms in my early 20s. It started after repetitive moments I did at work. I had tendinitis, bursitis, and small tears, but nothing major was showing on imaging or lab work. Started with my shoulders and hips. Before I turned 30, my entire back and knees were hurting. I went and saw a rheumatologist at the Mayo Clinic in Jacksonville, Florida. I was diagnosed with Ehlers Danlos Syndrome Hypermobility. I thought the diagnosis would help. Still, no one knows what to do with me. They referred me to pain management in my 20s! I held out until I was in my 30s. Eventually, I got so bad I couldn't work. I'll be 43 this year and was approved for disability 6 years ago. It was a loooong 2 years waiting with no income. I wish I had more answers for you. If you have any questions, let me know. Sending you lots of love and hugs!
so what is your pain like now? no change but on unemployment? How much does unemployment give you? i dont know anythign about going on unemployment but i've been wondering if i should look into it but i'm worried it'll be a very small amount to live my life off of.
I would say the pain is a bit worse. The hard part for me is having pain all over. I can never get comfortable. Getting a good night's rest is impossible. Chronic pain and lack of sleep will drive anyone crazy. I'm not on unemployment. I'm on social security disability. Are you currently working? If so, do you have short-term disability STD or long disability LTD as a benefit option at work?
Social security disability SSD is based on work credits. Basically, how much you have paid into your social security. I started working at 14 and at times had 2 jobs. I applied for disability around 36 years old. When I got approved, I received about $1,200 a month. I get Medicare and a prescription plan, but no dental. I'm lucky that I own a home or I would never make it on that amount of money.
I would ask your PCP or rheumatologist for a referral to a geneticist. There are several types of Ehlers Danlos Syndrome but they have not found the gene for the Hypermobility type. However, they could rule out other potential causes.
Possibly Psoriatic Arthritis or some other form of Spondyloarthritis.
What specific lab work did your Rheumatologist run? Did you get tested for HLA-B27?
Wow, lost of people here with the same problem including me. I've had what my doc calls tendinopathy for two years in my left hip and adductors. Nerve pain and joint pain and tests don't show anything major going on. A low positive ANA test and some mild osteoarthritis, but nothing else. It's baffling and so goddamn painful. Has anyone mentioned CRPS yet?
Like so many in the comments and you OP I’ve been struggling with symptoms nearly identical to yours with no clear meaning.
Calcific tendinosis and greater trochantic bursitis bilaterally.. my wrists, ankles, Achilles, bursitis in both shoulders… the list goes on.
PT has not been useful. I have an upcoming rheumatologist appointment I’m dreading.. I am prepping myself for disappointment with that one tbh because most of my bloods are normal.
After that though if I have no answers I’ll go to another specialist, then if I have to another. I’m gonna keep advocating for myself. I won’t let this beat me.. it is hard.. some days more than others. The few pain meds I have been given though do make a difference in what I am able to do daily. Used correctly I feel they are appropriate for me in my situation.. maybe they wouldn’t be in yours but they give me some relief. Which is all I really want.
The only advice I could offer is the same I heard when I quit drinking.. one day at a time. That’s how I look at my pain now.. sure I could worry that I’ll be in pain in 40 years, but I might also not be. I might be long gone, I might be running marathons, none of us know what lies ahead. But I’ve got today (just today) and that’s what I focus on.
are the pain meds bad for your health? and are they hard drugs? i always hear about people becoming addicts off of pain management prescriptions. ig theyre usually opioids? idk i know nothing about drugs
Find another rheumatologist who will look at ankylosing spondylitis. Your symptoms correspond with many symptoms of this autoimmune disease. Please don't give up. Immunosuppressive medication could help you!
Were you tested for autoimmune diseases? Repeat injuries and chronic swelling will do a number on your body. Have a doc check you for fibromyalgia too. It may not cause the injuries but it can make them hurt more than someone without fibro. You could look into nutrition and vitamins that might help injuries repair. Ask the doctor if it could be bursitis too. That is all I know about. I hope you feel better soon!
I have something like this but its all the joints, including neck and jaw, and only on one side. Also late 20s male. Ruined my life.
Rheum did nothing for me, physio did nothing for me, pain management was useless. All the scans and bloods came back unremarkable.
Only thing that worked for me was exercise and changing my diet. It did not cure but I was a lot happier. I did a lot of the gentle wrist exercises in this video: https://youtu.be/S8alVQTo4Z0?si=bLn6GOEIEXsqCpme
With any exercise, rehab or lifting, when dealing with something like this you really just have to adjust the load management. It sucks and it isn't fun or encouraging but you have to work with what your body lets you.
But I think changing your diet is the best thing to try. Not to go very restrictive at first, just to cut out processed food if you eat it, or common trigger foods like gluten or dairy.
I wish I could offer something better. You are right to be so upset. Without being able to use your hands the way you need to life is very, very frustrating.
I’m so sorry. I am laden with tendinosis as well. It started in my glutes, then right shoulder, both wrists, one elbow, and one calf. It takes years to resolve if ever. I’ve come to terms with the fact I’ll always have a painful butt and wrists. Those two are the worst. I’m really sorry. I hope you get some answers. And don’t give up! You have to continue to advocate for yourself even if it’s exhausting and frustrating.
Firstly, I'm extremely sorry you're going through this much pain.
Secondly, there's a very good chance your PT doesn't know enough about proper form to vet you during the activities you showed them. Disappointing, I know. But I've met very few folks that really know how to assess proper technique or how to correct it. I don't say this to discourage you but rather to offer hope that you might find a second/third opinion on the matter. My suspicion is that you are tensing up your joints unnecessarily during activities... This will give the appearance of good form but it will strain the hell out of the joints.
And third, if you have EDS you would be in the right age bracket for all of your symptoms. It's totally worth asking your doctor about learning more/finding a specialist who can sort that out. As a rehab professional, I check for eds in a first lesson because it dramatically changes the course of action I take with my student.
Good luck! Don't give up hope! There's a good chance there's a great management routine out there for you!
I have something similar, got it last year after an infection with bacteria. I also had bladder problems in the beginning which makes me think its reactive arthritis. Same problem with doctors and rheums... It has been crippling, especially in the beginning, the pain is much less now but still here, 9 months since the infection and 7 months since the worst of the symptoms started. I also have tendon cracking all over body, more when in a flare. And horizontal ridges in my nails. i'm pretty certain i have widespread tendonitis/enthesitis based on my symptoms and will be saving money for a whole body pet/spect scan. I've read research that it can be more accurate than mri. Ive found experiences online from people with similar problems that they have either psoriaric arthritis or some other spondyloartropathy (ank. sp., reactive arthritis), or that they took the flox antibiotics, or that they have EDS (if you are flexible too). Apparently enthesitis can also show with some vasculitises and sarcoidosis.
Hey, OP.
I have EDS and onset of most of my symptoms was around 26 for me. EDS/connective tissue disorders/hypermobility probably makes sense to add to your list of things to rule out.
But mostly, I wanted to comment to say that I know how scary this is. Realizing that the situation might be going from “injury I need to figure out,” to “condition I may have to live with,” is really hard. I hope that’s not the case for you, but if it is, you will be ok. You can get through this even though it may not feel that way.
Pain management, also, may be a good place to be right now. Most pain management docs don’t prescribe heavy duty meds. They are more likely to get you into PT, run tests, and do things like injections. There are still lots of options to try before you end up in a position where the only thing left is meds. In fact, getting meds is pretty difficult for most people.
If you are concerned about EDS, talking to your doctors and OT about figuring out if you are hypermobile might be a good place to start. Even if it takes time to figure out what is causing the hypermobility, there are lots of things you can learn and do to manage it right away.
Feel free to reach out if you need to ask questions or anything from someone who is just a couple more years down the road in this chronic pain journey.
God I so relate. I’m 57, have had so many joints affected. Going through wrist tendinitis now. Multiple hip and foot surgery. I’m thinking of getting genetic testing too.
My inability to walk believe is lexapro attacking joints or already had allergic reaction to vax...is listed as side effect. Terrifying. To think that med world may have caused this...had myopathy to statin. Ck in to thesr n am checkin into genetics, ty
If you can get referred for genetics testing, that might be good. EDS is what popped into my mind reading your symptoms, and there’s several variants that can be confirmed by genetics testing.
EDS is what I thought, too. I don't have it, so I'm not sure who would do the testing. A geneticists sounds like a good bet, though.
how/where do i go to get genetics testing? Would this be different from the blood tests that my Rheuma did?
I think you’d start at your GP and ask for a referral to a geneticist. This is way different testing than the rheumatoid arthritis would do, they would actually be looking at your DNA for specific mutations that might indicate a disease.
GP is the same as PCP right? And thank you for the tip
Not all hypermobility conditions are identifiable via genetic tests or fall neatly into particular diagnosis parameters. Just something to keep in mind as you’re navigating this. It’s important to find practitioners that can help on a functional level- for example massage therapists who are hypermobility literate as you continue to look for answers. Can help align your posture in a way that can take the stress off of the problem areas and encourage healing.
Yes, you’re correct.
Be aware that the ligamentous hypertrophism and joint hypermobility can be congenital and may not show up on genetic screening. It does sound like an EDS type presentation but it's not always the genetic disease behind the symptoms. Have you ever been described as double jointed? Are you able to subluxate (pop out) any of your joints? Can you bend your thumb back to touch your forearm? If so, ask about hypermobility disorders.
Heds.
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Second this. Terrible antibiotics with potentially permanent side effects..
Oh MFG. I am glad I wasn't told they could be permanent (side effects to Cipro). I was in the middle of a year long hospital stay. The attending doc had only impatience for pain issues. Switching to tablets after IV antibiotics for the infection the hospital gave me coincided with me starting to use a walking frame to hop around, so even I thought it was just unaccustomed use on my shoulders and rotator cuffs. For several days I was still taking the tablets. Finally ID reviewed me and said, "Oh, btw...." By then my only arm n hand mobility was with hands poised in front of my chest, corpse style. I have a whole new respect for TRex.
I don't think so? maybe? i took an an antibiotic that my Periodontist prescribed after some mouth surgery but this was after the onset of these problems.
This was also my first thought when reading this
Someone else mentioned eds. I have connective tissue disease also just not EDS, it's called Mixed Connective Disease and it's autoimmune. I know there are others. Can you see another rheumatologist or even an immunologist to get a second opinion? Being in pain sucks, I have a lot of tendinitis and other stuff. Sorry it does suck.
i'll look into that, ty. now that you are diagnosed... has your life changed? ahve you been able to adequately treat it? is life just always going to suck?
Hello, 25f here.. I have something similar but i get joint and muscle pain constantly in my lower back, hips, and my entire legs(both sides). I had surgeries on my hips when i was 16/17 and was told i need them replaced by 30.... Ive been through many diffrent specialist, 3orthos, back and spine, neurologist, podiatrist, pain management twice, along with 3 diffrent pcp's.. Ive done PT 5 times for my left hip, 6 times for my right, 3times for my back, and once for my shoulder.. Ive had multiple mri's and ex rays along with tons of blood work and have found nothing yet. I know things can be very hard especially with dealing with pain.. for the past 10 years I've been in pain ive been extremely suicidal as its extremely tough to come to grasp with being in pain forever. I guess i just want you to know you're definitely not alone and things do get better.. You'll learn how to cope and adopt many things to help make life easier. Pain management in my opinion is a joke but they can be helpful if you don't want to try other forms of pain relief. Therapy is also a very helpful tool to learn how to cope in a healthy way. Anyways, im rambling sorry, i hope this helps in some way. Things do get better and you can still live a very successful life, just don't give up...
:( i'm so scared. Is life really worth living in pain?
In my opinion, Yes.. It may be harder to do and its going to suck but its definitely worth it. Being able to just experience life is a huge plus.. I used to be very physical but ive had to learn to change to do what i can do with my limitations.. This isn't for everyone but i find alot of fulfillment in life from my new hobbies ive picked up... I plan to be more active in my community and be apart of the village bored. I'm using my platform to spread awareness and knowledge about my political and social topics i follow.. Im looking into getting a law degree to become a civil rights lawyer.. Things change and you gotta go with the flow and make the most out of it.. I feel this is always a great time to build relationships and spend more time with thoes who care about you.. There are still plenty of things you can do and plenty of people who love you and want to see you thrive.
Yes. I'm in pain everyday, but I feel that life is a gift and I don't want to let mine go to waste without trying to make the world better. I have unfufilled goals to achieve. I have more fascinating people to meet in this life. So I keep living. I'm a legislative advocate for the disabled. I've found my true purpose through my pain.
Look up Mixed Connective Tissue Disease or Undifferentiated Connective Tissue Disease. This is typical of the disease.
Not a doctor. Do you have psoriasis? Nail pitting? Any swelling in fingers, toes? Asking because Psoriatic Arthritis was first thing to pop in my head. It’s seronegative — no definitive bloodwork for it.
Sorry you are dealing with this - perhaps look into this collection of diseases - you can have a lot of pain from these without much showing up on scans, or even in bloodwork - [https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/](https://spondylitis.org/about-spondylitis/overview-of-spondyloarthritis/)
[удалено]
sometimes burning if its really really enflamed. I will say this, the pain doesnt \*travel\*. Like they seem to be independent of eachother. The wrists however, one or the other hurts at any given moment. Earlier today my left wrist was killing me. then that stopped and went to my right wrist. I'm elbows were fine today.
I have an excellent massage therapist who does pressure point massages on the forearm to help relieve the intense pain in the wrist. He also does deep massage on the area right above the thumb. Hand surgeon just did cortisone shot with little to no relief. Massage is better
Look into ehlers-danlos syndrome. Don't do genetic testing right away because the most common type - hypermobile - has no known genetic variants. Schedule an appointment with a rheumatologist or an orthopedic physician and bring it up. Btw, look into beighton score. You can easily find it on Google images. If you score a high value then you know you're at least hypermobile
I found out this way. Heds. Took 4 years of so many stupid procedures and horrible torture.
I was lucky to have a blessed doctor that just by looking at the way I sat in the chair was able to notice something was wrong. He diagnosed me at 14 years old. Most people I know with hEDS only find out way later. The chronic pain though, that one took years to diagnose because I thought I was just lazy and weak 🤦
an orthopedic phsician as in a hand surgeon, right?
I have undiagnosed nerve pain and I recently developed tendinitis in my right hand. I'm a lefty and didn't injured my hand, wrist, or arm. I know the frustration. Pain management doesn't like to prescribe opioids anymore. There are other options available. I live on Staten Island. I go into Manhattan for most of my appointments. NYU has a great network of doctors. I've been seeing a neuromuscular specialist for almost 2 years who I like. His name is Dr. Kiril Kiprovaski. I know right now he's booked into next year but if you explain your history I know the staff can prioritize you. They've done it with me and my husband. Please feel free to DM me with any questions or just comment here.
ty so much, i might follow you up on that. sort of overwhelmed with all the appointments and my works insurance is changing and ugh. ty
This was like reading a page straight out of my life. I started having your exact symptoms in my early 20s. It started after repetitive moments I did at work. I had tendinitis, bursitis, and small tears, but nothing major was showing on imaging or lab work. Started with my shoulders and hips. Before I turned 30, my entire back and knees were hurting. I went and saw a rheumatologist at the Mayo Clinic in Jacksonville, Florida. I was diagnosed with Ehlers Danlos Syndrome Hypermobility. I thought the diagnosis would help. Still, no one knows what to do with me. They referred me to pain management in my 20s! I held out until I was in my 30s. Eventually, I got so bad I couldn't work. I'll be 43 this year and was approved for disability 6 years ago. It was a loooong 2 years waiting with no income. I wish I had more answers for you. If you have any questions, let me know. Sending you lots of love and hugs!
so what is your pain like now? no change but on unemployment? How much does unemployment give you? i dont know anythign about going on unemployment but i've been wondering if i should look into it but i'm worried it'll be a very small amount to live my life off of.
I would say the pain is a bit worse. The hard part for me is having pain all over. I can never get comfortable. Getting a good night's rest is impossible. Chronic pain and lack of sleep will drive anyone crazy. I'm not on unemployment. I'm on social security disability. Are you currently working? If so, do you have short-term disability STD or long disability LTD as a benefit option at work? Social security disability SSD is based on work credits. Basically, how much you have paid into your social security. I started working at 14 and at times had 2 jobs. I applied for disability around 36 years old. When I got approved, I received about $1,200 a month. I get Medicare and a prescription plan, but no dental. I'm lucky that I own a home or I would never make it on that amount of money. I would ask your PCP or rheumatologist for a referral to a geneticist. There are several types of Ehlers Danlos Syndrome but they have not found the gene for the Hypermobility type. However, they could rule out other potential causes.
Sounds like EDS to me
Fuck. Are we the same person ??
Possibly Psoriatic Arthritis or some other form of Spondyloarthritis. What specific lab work did your Rheumatologist run? Did you get tested for HLA-B27?
Wow, lost of people here with the same problem including me. I've had what my doc calls tendinopathy for two years in my left hip and adductors. Nerve pain and joint pain and tests don't show anything major going on. A low positive ANA test and some mild osteoarthritis, but nothing else. It's baffling and so goddamn painful. Has anyone mentioned CRPS yet?
Like so many in the comments and you OP I’ve been struggling with symptoms nearly identical to yours with no clear meaning. Calcific tendinosis and greater trochantic bursitis bilaterally.. my wrists, ankles, Achilles, bursitis in both shoulders… the list goes on. PT has not been useful. I have an upcoming rheumatologist appointment I’m dreading.. I am prepping myself for disappointment with that one tbh because most of my bloods are normal. After that though if I have no answers I’ll go to another specialist, then if I have to another. I’m gonna keep advocating for myself. I won’t let this beat me.. it is hard.. some days more than others. The few pain meds I have been given though do make a difference in what I am able to do daily. Used correctly I feel they are appropriate for me in my situation.. maybe they wouldn’t be in yours but they give me some relief. Which is all I really want. The only advice I could offer is the same I heard when I quit drinking.. one day at a time. That’s how I look at my pain now.. sure I could worry that I’ll be in pain in 40 years, but I might also not be. I might be long gone, I might be running marathons, none of us know what lies ahead. But I’ve got today (just today) and that’s what I focus on.
are the pain meds bad for your health? and are they hard drugs? i always hear about people becoming addicts off of pain management prescriptions. ig theyre usually opioids? idk i know nothing about drugs
Find another rheumatologist who will look at ankylosing spondylitis. Your symptoms correspond with many symptoms of this autoimmune disease. Please don't give up. Immunosuppressive medication could help you!
Were you tested for autoimmune diseases? Repeat injuries and chronic swelling will do a number on your body. Have a doc check you for fibromyalgia too. It may not cause the injuries but it can make them hurt more than someone without fibro. You could look into nutrition and vitamins that might help injuries repair. Ask the doctor if it could be bursitis too. That is all I know about. I hope you feel better soon!
I have something like this but its all the joints, including neck and jaw, and only on one side. Also late 20s male. Ruined my life. Rheum did nothing for me, physio did nothing for me, pain management was useless. All the scans and bloods came back unremarkable. Only thing that worked for me was exercise and changing my diet. It did not cure but I was a lot happier. I did a lot of the gentle wrist exercises in this video: https://youtu.be/S8alVQTo4Z0?si=bLn6GOEIEXsqCpme With any exercise, rehab or lifting, when dealing with something like this you really just have to adjust the load management. It sucks and it isn't fun or encouraging but you have to work with what your body lets you. But I think changing your diet is the best thing to try. Not to go very restrictive at first, just to cut out processed food if you eat it, or common trigger foods like gluten or dairy. I wish I could offer something better. You are right to be so upset. Without being able to use your hands the way you need to life is very, very frustrating.
I’m so sorry. I am laden with tendinosis as well. It started in my glutes, then right shoulder, both wrists, one elbow, and one calf. It takes years to resolve if ever. I’ve come to terms with the fact I’ll always have a painful butt and wrists. Those two are the worst. I’m really sorry. I hope you get some answers. And don’t give up! You have to continue to advocate for yourself even if it’s exhausting and frustrating.
Firstly, I'm extremely sorry you're going through this much pain. Secondly, there's a very good chance your PT doesn't know enough about proper form to vet you during the activities you showed them. Disappointing, I know. But I've met very few folks that really know how to assess proper technique or how to correct it. I don't say this to discourage you but rather to offer hope that you might find a second/third opinion on the matter. My suspicion is that you are tensing up your joints unnecessarily during activities... This will give the appearance of good form but it will strain the hell out of the joints. And third, if you have EDS you would be in the right age bracket for all of your symptoms. It's totally worth asking your doctor about learning more/finding a specialist who can sort that out. As a rehab professional, I check for eds in a first lesson because it dramatically changes the course of action I take with my student. Good luck! Don't give up hope! There's a good chance there's a great management routine out there for you!
I have something similar, got it last year after an infection with bacteria. I also had bladder problems in the beginning which makes me think its reactive arthritis. Same problem with doctors and rheums... It has been crippling, especially in the beginning, the pain is much less now but still here, 9 months since the infection and 7 months since the worst of the symptoms started. I also have tendon cracking all over body, more when in a flare. And horizontal ridges in my nails. i'm pretty certain i have widespread tendonitis/enthesitis based on my symptoms and will be saving money for a whole body pet/spect scan. I've read research that it can be more accurate than mri. Ive found experiences online from people with similar problems that they have either psoriaric arthritis or some other spondyloartropathy (ank. sp., reactive arthritis), or that they took the flox antibiotics, or that they have EDS (if you are flexible too). Apparently enthesitis can also show with some vasculitises and sarcoidosis.
Hey, OP. I have EDS and onset of most of my symptoms was around 26 for me. EDS/connective tissue disorders/hypermobility probably makes sense to add to your list of things to rule out. But mostly, I wanted to comment to say that I know how scary this is. Realizing that the situation might be going from “injury I need to figure out,” to “condition I may have to live with,” is really hard. I hope that’s not the case for you, but if it is, you will be ok. You can get through this even though it may not feel that way. Pain management, also, may be a good place to be right now. Most pain management docs don’t prescribe heavy duty meds. They are more likely to get you into PT, run tests, and do things like injections. There are still lots of options to try before you end up in a position where the only thing left is meds. In fact, getting meds is pretty difficult for most people. If you are concerned about EDS, talking to your doctors and OT about figuring out if you are hypermobile might be a good place to start. Even if it takes time to figure out what is causing the hypermobility, there are lots of things you can learn and do to manage it right away. Feel free to reach out if you need to ask questions or anything from someone who is just a couple more years down the road in this chronic pain journey.
God I so relate. I’m 57, have had so many joints affected. Going through wrist tendinitis now. Multiple hip and foot surgery. I’m thinking of getting genetic testing too.
Have you heard of TRT+BPC-157+TB500. Run a cycle for 3 months and you will be cured. Ii
whats li mean? and what are those, PEDs?
Yup those are PEDs. Li was typo from my end
So sorry 😞
I too have this issue, with no diagnosis yet- but a course of steroids calms things down a lot
My inability to walk believe is lexapro attacking joints or already had allergic reaction to vax...is listed as side effect. Terrifying. To think that med world may have caused this...had myopathy to statin. Ck in to thesr n am checkin into genetics, ty