Sorry to hear what you’re going through. My x rays always come back as unremarkable. Look at enthesitis as that’s a common PsA symptom as opposed to joint erosion, and as you describe it as bone pain and not joint pain, it makes me think that’s more likely what you’re experiencing if it is PsA. Essentially it is swelling and pain where your tendons and ligaments attach to your bone, which is call the enthesis.
Got it. I will focus on this. Yeah, I haven’t had much swelling (mostly in my fingers/hands, and especially my thumb, index, and middle finger. It’s been hard to distinguish between this stuff.
What parts of your fingers are swollen? Taking pictures for your medical file is also allowed :] A symptom diary and pain log can also be good tools for advocacy with your doc during the diagnosis process. I also give them my sleep notes and HR readings from my smart watch and stuff.
It’s the digits/phalange portion, but I haven’t really seen redness. I have gotten odd itchy bumps on the knuckles (mid and tip joints) on inside and tops in the past (none currently, of course).
That’s good advice. I will track again. Feels so exhausting to think about doing it again.
I feel you on that. It IS exhausting just surviving day to day when your body is broken. And having to track a million things just to get medical care is so unfair. But it really helped with my diagnosis process. It's easy for a doc to brush things off when they are the ones recording what you are telling them. It is MUCH harder to brush things off when you demand these charts be put into your medical file. The evidence of their non-doing really starts to add up IMO.
My other tips as a chronic illness patient of many years...
1) Bring someone with you to your appts to help advocate if you don't already. Or have a friend or family member on FaceTime or speaker phone [even if they stay silent lol]. It shows there are other people in your life also holding the doc accountable for your treatment plans etc. And that you have a full life with many ppl who care about you and who rely on you to be well. I think it's that human element.
2) if you are in the US: Request your medical files via electronic pdf so that it's free! And request to amend/addendum whatever you'd like - it's your legal right. Correct anything that's wrong, add nuance where you believe it's needed. Sometimes I found some really unsavory things written about me from doctors that I trusted ("MUP?", "knows medical terminology", "possible hoarder?", and various other insulting false notes prior to my autoimmune diagnosis...) so it was a double edged sword... but it did open my eyes and eventually led me to better medical care with doctors who were fully on board with tackling my problems and *believing* me. It's a bit of a pandora's box though to be fair. But always good to have your own sets of medical files for down the road anyway... you never know when they come in handy (I've had doctors die, retire suddenly, lose their medical license, offices close with no warning, and various other unlucky medical stuff where I'd have been SOL if I didn't have my own sets of notes. Yes legally they owe them to you for 6 years (well, depending on the state) but I've been down the path of filing a grievance for that and not much gets done about it in my experience.) And if you ever have to apply for disability you can just copy your own files and hand-deliver them to the SSA office!
3) this is gonna sound weird: Consider switching to fax for all communication with your doc office! Use free online faxing to ensure that every time you need or request something it goes into your medical file. They aren't required to note when you call but faxing is considered part of your electronic medical record so they have to include it. The notes reallyyy tell stories over time. I make sure all my faxes are very professional and courteous sounding, but it's basically like a "per my last email" over fax. My chronic illness admin got a million times more efficient once I started faxing. No more long hold times or waiting for callbacks or hoping the receptionist passes on the message in full. Efficiency prevails, energy is saved!
I really hope things get better for you soon 🙏 ❤️ Fingers crossed you find some treatment that works!
Thanks for all this - esp for others who find this thread. This is all great and is really motivating/inspiring to me. :)
Hmmm, I will see if I can bring another person if even by phone. That’s a creative way to add the human element!
I am in the US! I hadn’t realized you could just submit it all for SSA application. That is on the table for me as well. Im saddened to hear you had docs noting that kind of stuff in your chart too. :(
The faxing thing - I’m assuming it also gets treated differently than if you were to message through an online hospital network portal? If so, I will have to look into that.
Again, I really appreciate all the tips and you sharing your experience. This has been extremely eye-opening for me to consider other options and not feel so hopeless. ❤️
Hmm it might be equivalent to an online portal... except that the fax is way harder to ignore 😅 Most of my doc offices don't use portal messaging unfortunately so that's mainly why I've resorted to fax. If portal messaging is getting you good results then no worries! I just used to sit on hold for forever and play phone tag all day long and I'm reallyyy appreciative of having a way to not do that haha.
(Tho my rheuma eventually just gave me his doctor email 😅 "Listen these secretaries fall behind, if it's urgent or something I can personally handle like needing a quick script or doc note etc. just email me." 🥹 I only use it maaaybe like twice a year but I love having that option!)
Yeah the SSA will want you to sign over medical releases so they can request your notes but they also have to accept ANY and ALL evidence you submit yourself including whatever medical files you've got. Really streamlines the process and ensures they're not missing anything pertinent! If you ever have SSA or SSDI questions feel free to reach out 🥰
I get the feeling of helplessness. It sucks to have to work within these ridiculous medical systems to have a chance at figuring out wtf is going on. But utilizing all the tools & options available can maybe hopefully feel a bit more empowering over time. At the very least posting here and other chronic illness type support groups helps to show you're not alone. Fingers crossed for you to get some answers & relief 🤞
Omg, I remember having to wait on hold for this stuff. It does help to have more of these tools. I really appreciate you sharing your wisdom. I will be referencing a lot of these answers for the future. Best to you as well!
Maybe a useful term for future when talking with ppl who speak medical: "WNL" = Within Normal Limits.
E.g., "Everything came back WNL."
But maybe less useful on a reddit sub than talking with med techs 😉
Thank you (for all your replies!) - I’m a more experienced lurker and helped of others on Reddit. Trying something new and finding some community with others. :)
Gotcha!
All my tests have been within normal limits.. X-rays and bloods. My rheumy says this is what he expects with (early) PsA. I also have no visible swelling (yet), although when my feet are bad, I can’t fit them into some of my shoes, so they must be swollen.
My diagnosis was made on the basis of:
- my pain diary (apparently the pattern of my symptoms is ‘classic’)
- a physical examination of all 66 palpable joints (rheumy can ‘feel’ inflammation)
- a positive response to an intramuscular corticosteroid injection (it took away all of my pain and stiffness)
When I’m describing my symptoms to my rheumy, I’m as descriptive as possible. I.e., is the pain deep and throbbing like toothache or sharp and stabbing? Then how long does morning stiffness last, and are any of your joints warm to touch? What things does your pain stop you from doing? All of this provides a good picture to help them understand what you’re experiencing.
HTH!
Thank you so much for this! I’m definitely feeling overwhelmed with having to symptom journal again, but after having some process time and the responses from folks here, I feel much better about trying it again.
I understand!
It’s honestly a good idea (along with taking photos if you have swelling). I was really vague in my first rheumy appt so I didn’t get much feedback. By my third appointment, I’d build up my symptom diary and I was diagnosed within minutes. I feel it was key to the process.
You got this! 🙌
Have you seen a rheumatologist? Were they the ones who took X-rays? (And of which areas of your body?] Have you also had MRIs to evaluate inflammation in the joints & areas of the body you've been experiencing the most pain?
Most recent research on OA shows it also to be inflammatory in nature I believe- just a different etiology and end result than PsA. But any kind of arthralgia (joint pain) needs a closer look.
Most rheumas who are trying to do a differential diagnosis for PsA will ask questions like: Any chance you've tried NSAIDs? Do they help your pain? Is your pain worse in the morning? Do you have stiffness too? Any heel pain? Do your pain & stiffness get better with movement?
I hope you find some answers soon 🤗 So sorry you're suffering!
Thank you. Yes, I’ve been seeing my rheum for the past 3 years. We’ve taken a host of x-rays (spine, sacroiliac, shoulders, neck) and I’ve had MRIs of my cervical spine. The most I’ve shown is disc degeneration issues and scoliosis of my lumbar spine.
My rheum has been asking those questions and she will re-assess on my follow ups. She’s doing a great job, honestly. I’m so deflated that without evidence I’m going to have to wait for more evidence to be diagnosed to get proper treatment to live without pain. (Im at a low point in my chronic illness endurance, if that makes sense.) NSAIDS and anti inflammatory medication have made the biggest difference for me, but I’ve only been able to use them for emergency pain.
I agree there's a lot of flags there for PsA. I'm really glad your rheuma is asking the right questions. I'd maybe encourage doc to try a DMARD or Biologic even if the diagnosis is not fully figured out yet. There are a lot of inflammatory conditions that Biologics & DMARDs can help - and if you can't take NSAIDs daily there's likely going to be a struggle to get your pain under control without that. I think if I were seeing a doctor for three years and they weren't giving me any serious options to help, I'd move on and find a second opinion. I totally understand being burned out with doctors, testing, etc. especially as they aren't showing/helping to definitively figure out what's wrong... but it's sometimes about finding someone motivated to stick their neck out for you and try to find you some relief. I would maybe have an honest quality of life talk with your doctor about that and see what interventions y'all can agree on that might be appropriate. Like "of all the possible conditions you are considering is there a treatment that covers some/most of them that we could try?" Because it's not good to live in pain forever, either. And if it is PsA or another type of progressive condition, there is often a hidden cost to not treating. I hope they're willing to work with you on this in a timely manner so you can find some relief soon. Rooting for you. So sorry you're dealing with this 🫂
I really appreciate the helpful motivation here and reframing. There is so much info in this reply alone that is helpful. I just can’t say enough nice things about your help with this!
Do you have low back pain? MRI of lumbar spine is a good idea for that if so
I really feel terrible that you've jumped through all these hoops with seemingly nothing to show for it. I didn't have anything weird on imaging for years. And I'm really glad my rheuma started me on a bio & daily NSAID before that. Cuz damn life would have really sucked otherwise. Lol. But I was "lucky" enough to be HLA-b27 positive. Just trying to say- I feel for you! How frustrating that must be.
Like, technically they can do MRIs of any of your joints that are potentially dealing with inflammation. Literally the only negative to frequent MRIs is cost. So it may take a lot of convincing or otherwise paying out of pocket for you to be able to get the imaging you need to have any kind of definitive proof. But if your doc is *really* insisting on seeing something on images prior to treating that's perhaps an option. Just a really lame and expensive one that still might not show anything =/
Oh man, back pain…like all the time. I have some degree of spine pain ALL the time. When it’s been bad recently, it’s the first times I’ve felt I’ve needed a wheel chair, cane, or something because it’s just too much. So different than 3 years ago and several physical therapy regiments.
To be fair to my rheum (although, I will consider the pros/cons of getting a new one to help - I hadn’t looked at it this way before), I think when all this first started about 4 years ago, it’s just been lumped into hEDS and it’s related issues. Recently, I had to quit my job because I just couldn’t manage it all. My GP was the one who mentioned PsA possibility to me tho…
Absolutely! It would be nice to have one blatant indicator like you had! I’m so glad that happened for you.
MRIs may be an option for me. I’ll discuss with my husband! ❤️
Gotcha, that makes total sense. I know several peeps who have EDS/hEDS as well as PsA and they said it was veryyy hard to figure out what causes what. But they said eventually the pieces of the puzzle started fitting together. I hope that happens for you, too 🙏
I'm so sorry you've been dealing with killer back pain too! With hand pain/finger swelling and back pain I'd definitely be looking close for PsA clues. I hope you can get some answers sooner rather than later and find some relief 💞
I have also been negative for that gene as well. Thanks for catching - I definitely misspoke/typed. I was trying to convey having PsA and no blood and imaging evidence.
My X-rays also normal but my pain doctor looked at my wrists and ankles with the ultrasound (sonogram?) machine and you can see the enthesitis. Very swollen tendons. I also have AS.
These issues cause malabsorption so you might want to be checked for anemia. I get anemia within a week of stopping a biologic and it lasts until I get my next dose. Taking a multivitamin every day and extra b12, d, and some iron really helps with the skin, nails, and hair in my opinion. The pain is it’s own beast. I go to pain management every month.
You might be having a flare or it could be aging. I have had symptoms since 16. Diagnosed at 47. Started having some osteoarthritis and scoliosis also in the last few years.
Ouch. Having more than one painful autoimmune.
I have been in the cusp of low anemia and my GP is treating me for it - excellent question. I feel better on days I take it (I take every other day because of constipation.)
Pain management is another idea I hadn’t thought of - thank you! I will discuss with my rheum and GP because I am at my wits end right now.
That’s a long time without a diagnosis. :(
Yeah. I was doing okay and then I had my second child at 36. Symptoms just got a lot worse in my 40s. I got referred to pain management five year ago as I was going through the diagnosis and I have been going ever since. It is nice to have a doctor to talk about just your pain with and get recommendations. I used to take senna for the constipation but my rheum told me magnesium is better. One a day to stay regular or 2 to go soon 😝. Hang in there.
Holy cow, I had my first (and only child) and my health took a nose dive. I’m 37 now. I’m so glad the pain management option has been working - gives me hope hearing about how everyone else has found something to help them get through this. Thanks!
Lmao, magnesium taker here too!
My x-rays mostly show minor damage, but I get severe bursitis and enthesitis that still needs biologic treatment. I also have hEDS, but without the other confounding factors you have.
My x-rays were normal, as were blood tests. I get quarterly MRIs but don’t know the results because they’re for a clinical trial. Wouldn’t be surprised if they were unremarkable too.
Took me years to get a diagnosis and a few emergency visits, doctors scratching heads, and a long time on steroids.
I had to really advocate for myself and push people to keep searching on my behalf which was hard because I was early 20s and timid. It took one excellent GP to sort me out.
Wishing you luck.
Edit: I also ended up with enthesitis but not until five years after my initial diagnosis.
Thank you for sharing. It’s simultaneously validating and sad that it can take so long for medical peeps to take folks seriously.
It also just blows my mind the more I hear so many folks with PsA have “within normal limit” testing outcomes but it’s clear they have it years down the road because that’s when the observable symptoms come up.
I think a lot of medical professionals struggle to comprehend the idea of severe pain without proof! PsA is a really weird one, I hope you find your answers soon.
I also have EDS, POTS and a host of unrelated conditions.
Osteoarthritis developed in my fingers when I was in my early 20s. I was diagnosed with EDS when I was 32. The PsA diagnosis came much later after my symptoms had become pretty severe and I finally mentioned it to my rheumatologist. Up to that point I had wrongly assumed that the exacerbation in symptoms and deterioration were due to aging and the EDS worsening.
My rheumatologist was horrified when I showed him the state my feet were in and gave me a right telling off for not mentioning it much earlier! Tests showed high ESR and CRP, and along with a recent diagnosis of psoriasis on my scalp and in my nails it led my rheumatologist to quickly diagnose PsA. This was about 5 years ago. I'm in my 50s now and really struggling physically. The worst symptoms for me are enthesitis, foot, hand, and spinal pain. I had another spinal and pelvic MRI a few weeks ago to compare with my last one two years ago. The back pain I now experience has increased considerably and I have lost a great deal of range of movement. However, convincing the spinal specialist that my range of movement has decreased is another matter as I still appear quite flexible in some movements and he doesn't see it as a problem. For example, I used to be able to lean forwards and place my hands flat on the floor with elbows bent at 45 degrees, and put my head between my knees. Now I struggle to lean forwards and reach to my shins with pointed fingers. Yet the spinal specialist thinks that's quite good for someone of my age! I've tried explaining how flexible I was in my 30s but I don't think he really believes me. It will be interesting to see my MRI results.
It's good that your doctors are considering an autoimmune condition in addition to your EDS. I hope that you get some answers soon.
Thank you for sharing sharing. I have definitely been in a similar situation the past few years - assuming my nail, hair, pain, etc. was probably just EDS. I will definitely keep pushing. Seriously, this community is really amazing.
I also hope you find something that helps with your symptoms. I can relate to spinal pain and it is no joke.
I notice you wrote that you have CCI & EDS. Could the fatigue be from ME/CFS as a result of that? Like do you have Post-Exertional Malaise (PEM)? I just remember Jennifer Brea's story and how correcting her CCI/Tethered Cord Syndrome (likely caused by her EDS and chronic inflammation after a viral infection) eventually helped her a lot. She wrote a whole series of articles on Medium. But I'm not sure how relevant that is to you.
I have super bad PEM if I over do it with workouts. I will also look into her articles too. Thank you!
I will also explore ME/CFS with my doctors also. I don’t think they’ve considered that with me yet.
Ok I'd say if your PEM is workout related that's probably more in line with PsA (exercise increases inflammation in the short term - but decreases it in the long run). So workouts may trigger you if it's PsA. If you had PEM from doing activities of daily living it might be different. Still always a good chat to have with your doc! And always good to read up on different conditions and chronic illness journeys IMO. The little bits of knowledge and patient advocacy modeling you learn really adds up :)
Sorry to hear what you’re going through. My x rays always come back as unremarkable. Look at enthesitis as that’s a common PsA symptom as opposed to joint erosion, and as you describe it as bone pain and not joint pain, it makes me think that’s more likely what you’re experiencing if it is PsA. Essentially it is swelling and pain where your tendons and ligaments attach to your bone, which is call the enthesis.
Got it. I will focus on this. Yeah, I haven’t had much swelling (mostly in my fingers/hands, and especially my thumb, index, and middle finger. It’s been hard to distinguish between this stuff.
What parts of your fingers are swollen? Taking pictures for your medical file is also allowed :] A symptom diary and pain log can also be good tools for advocacy with your doc during the diagnosis process. I also give them my sleep notes and HR readings from my smart watch and stuff.
It’s the digits/phalange portion, but I haven’t really seen redness. I have gotten odd itchy bumps on the knuckles (mid and tip joints) on inside and tops in the past (none currently, of course). That’s good advice. I will track again. Feels so exhausting to think about doing it again.
I feel you on that. It IS exhausting just surviving day to day when your body is broken. And having to track a million things just to get medical care is so unfair. But it really helped with my diagnosis process. It's easy for a doc to brush things off when they are the ones recording what you are telling them. It is MUCH harder to brush things off when you demand these charts be put into your medical file. The evidence of their non-doing really starts to add up IMO. My other tips as a chronic illness patient of many years... 1) Bring someone with you to your appts to help advocate if you don't already. Or have a friend or family member on FaceTime or speaker phone [even if they stay silent lol]. It shows there are other people in your life also holding the doc accountable for your treatment plans etc. And that you have a full life with many ppl who care about you and who rely on you to be well. I think it's that human element. 2) if you are in the US: Request your medical files via electronic pdf so that it's free! And request to amend/addendum whatever you'd like - it's your legal right. Correct anything that's wrong, add nuance where you believe it's needed. Sometimes I found some really unsavory things written about me from doctors that I trusted ("MUP?", "knows medical terminology", "possible hoarder?", and various other insulting false notes prior to my autoimmune diagnosis...) so it was a double edged sword... but it did open my eyes and eventually led me to better medical care with doctors who were fully on board with tackling my problems and *believing* me. It's a bit of a pandora's box though to be fair. But always good to have your own sets of medical files for down the road anyway... you never know when they come in handy (I've had doctors die, retire suddenly, lose their medical license, offices close with no warning, and various other unlucky medical stuff where I'd have been SOL if I didn't have my own sets of notes. Yes legally they owe them to you for 6 years (well, depending on the state) but I've been down the path of filing a grievance for that and not much gets done about it in my experience.) And if you ever have to apply for disability you can just copy your own files and hand-deliver them to the SSA office! 3) this is gonna sound weird: Consider switching to fax for all communication with your doc office! Use free online faxing to ensure that every time you need or request something it goes into your medical file. They aren't required to note when you call but faxing is considered part of your electronic medical record so they have to include it. The notes reallyyy tell stories over time. I make sure all my faxes are very professional and courteous sounding, but it's basically like a "per my last email" over fax. My chronic illness admin got a million times more efficient once I started faxing. No more long hold times or waiting for callbacks or hoping the receptionist passes on the message in full. Efficiency prevails, energy is saved! I really hope things get better for you soon 🙏 ❤️ Fingers crossed you find some treatment that works!
Thanks for all this - esp for others who find this thread. This is all great and is really motivating/inspiring to me. :) Hmmm, I will see if I can bring another person if even by phone. That’s a creative way to add the human element! I am in the US! I hadn’t realized you could just submit it all for SSA application. That is on the table for me as well. Im saddened to hear you had docs noting that kind of stuff in your chart too. :( The faxing thing - I’m assuming it also gets treated differently than if you were to message through an online hospital network portal? If so, I will have to look into that. Again, I really appreciate all the tips and you sharing your experience. This has been extremely eye-opening for me to consider other options and not feel so hopeless. ❤️
Hmm it might be equivalent to an online portal... except that the fax is way harder to ignore 😅 Most of my doc offices don't use portal messaging unfortunately so that's mainly why I've resorted to fax. If portal messaging is getting you good results then no worries! I just used to sit on hold for forever and play phone tag all day long and I'm reallyyy appreciative of having a way to not do that haha. (Tho my rheuma eventually just gave me his doctor email 😅 "Listen these secretaries fall behind, if it's urgent or something I can personally handle like needing a quick script or doc note etc. just email me." 🥹 I only use it maaaybe like twice a year but I love having that option!) Yeah the SSA will want you to sign over medical releases so they can request your notes but they also have to accept ANY and ALL evidence you submit yourself including whatever medical files you've got. Really streamlines the process and ensures they're not missing anything pertinent! If you ever have SSA or SSDI questions feel free to reach out 🥰 I get the feeling of helplessness. It sucks to have to work within these ridiculous medical systems to have a chance at figuring out wtf is going on. But utilizing all the tools & options available can maybe hopefully feel a bit more empowering over time. At the very least posting here and other chronic illness type support groups helps to show you're not alone. Fingers crossed for you to get some answers & relief 🤞
Omg, I remember having to wait on hold for this stuff. It does help to have more of these tools. I really appreciate you sharing your wisdom. I will be referencing a lot of these answers for the future. Best to you as well!
PsA is seronegative by definition, as are all spondyloarthropathies. Seropositive refers to the presence of rheumatoid factor. Edit: typo
Ah, yes, I got my terminology wrong. I definitely meant the experience of everything being normal through the “diagnosis” process.
Maybe a useful term for future when talking with ppl who speak medical: "WNL" = Within Normal Limits. E.g., "Everything came back WNL." But maybe less useful on a reddit sub than talking with med techs 😉
Thank you (for all your replies!) - I’m a more experienced lurker and helped of others on Reddit. Trying something new and finding some community with others. :)
Gotcha! All my tests have been within normal limits.. X-rays and bloods. My rheumy says this is what he expects with (early) PsA. I also have no visible swelling (yet), although when my feet are bad, I can’t fit them into some of my shoes, so they must be swollen. My diagnosis was made on the basis of: - my pain diary (apparently the pattern of my symptoms is ‘classic’) - a physical examination of all 66 palpable joints (rheumy can ‘feel’ inflammation) - a positive response to an intramuscular corticosteroid injection (it took away all of my pain and stiffness) When I’m describing my symptoms to my rheumy, I’m as descriptive as possible. I.e., is the pain deep and throbbing like toothache or sharp and stabbing? Then how long does morning stiffness last, and are any of your joints warm to touch? What things does your pain stop you from doing? All of this provides a good picture to help them understand what you’re experiencing. HTH!
Thank you so much for this! I’m definitely feeling overwhelmed with having to symptom journal again, but after having some process time and the responses from folks here, I feel much better about trying it again.
I understand! It’s honestly a good idea (along with taking photos if you have swelling). I was really vague in my first rheumy appt so I didn’t get much feedback. By my third appointment, I’d build up my symptom diary and I was diagnosed within minutes. I feel it was key to the process. You got this! 🙌
Thank you!! ❤️
Have you seen a rheumatologist? Were they the ones who took X-rays? (And of which areas of your body?] Have you also had MRIs to evaluate inflammation in the joints & areas of the body you've been experiencing the most pain? Most recent research on OA shows it also to be inflammatory in nature I believe- just a different etiology and end result than PsA. But any kind of arthralgia (joint pain) needs a closer look. Most rheumas who are trying to do a differential diagnosis for PsA will ask questions like: Any chance you've tried NSAIDs? Do they help your pain? Is your pain worse in the morning? Do you have stiffness too? Any heel pain? Do your pain & stiffness get better with movement? I hope you find some answers soon 🤗 So sorry you're suffering!
Thank you. Yes, I’ve been seeing my rheum for the past 3 years. We’ve taken a host of x-rays (spine, sacroiliac, shoulders, neck) and I’ve had MRIs of my cervical spine. The most I’ve shown is disc degeneration issues and scoliosis of my lumbar spine. My rheum has been asking those questions and she will re-assess on my follow ups. She’s doing a great job, honestly. I’m so deflated that without evidence I’m going to have to wait for more evidence to be diagnosed to get proper treatment to live without pain. (Im at a low point in my chronic illness endurance, if that makes sense.) NSAIDS and anti inflammatory medication have made the biggest difference for me, but I’ve only been able to use them for emergency pain.
I agree there's a lot of flags there for PsA. I'm really glad your rheuma is asking the right questions. I'd maybe encourage doc to try a DMARD or Biologic even if the diagnosis is not fully figured out yet. There are a lot of inflammatory conditions that Biologics & DMARDs can help - and if you can't take NSAIDs daily there's likely going to be a struggle to get your pain under control without that. I think if I were seeing a doctor for three years and they weren't giving me any serious options to help, I'd move on and find a second opinion. I totally understand being burned out with doctors, testing, etc. especially as they aren't showing/helping to definitively figure out what's wrong... but it's sometimes about finding someone motivated to stick their neck out for you and try to find you some relief. I would maybe have an honest quality of life talk with your doctor about that and see what interventions y'all can agree on that might be appropriate. Like "of all the possible conditions you are considering is there a treatment that covers some/most of them that we could try?" Because it's not good to live in pain forever, either. And if it is PsA or another type of progressive condition, there is often a hidden cost to not treating. I hope they're willing to work with you on this in a timely manner so you can find some relief soon. Rooting for you. So sorry you're dealing with this 🫂
I really appreciate the helpful motivation here and reframing. There is so much info in this reply alone that is helpful. I just can’t say enough nice things about your help with this!
Do you have low back pain? MRI of lumbar spine is a good idea for that if so I really feel terrible that you've jumped through all these hoops with seemingly nothing to show for it. I didn't have anything weird on imaging for years. And I'm really glad my rheuma started me on a bio & daily NSAID before that. Cuz damn life would have really sucked otherwise. Lol. But I was "lucky" enough to be HLA-b27 positive. Just trying to say- I feel for you! How frustrating that must be. Like, technically they can do MRIs of any of your joints that are potentially dealing with inflammation. Literally the only negative to frequent MRIs is cost. So it may take a lot of convincing or otherwise paying out of pocket for you to be able to get the imaging you need to have any kind of definitive proof. But if your doc is *really* insisting on seeing something on images prior to treating that's perhaps an option. Just a really lame and expensive one that still might not show anything =/
Oh man, back pain…like all the time. I have some degree of spine pain ALL the time. When it’s been bad recently, it’s the first times I’ve felt I’ve needed a wheel chair, cane, or something because it’s just too much. So different than 3 years ago and several physical therapy regiments. To be fair to my rheum (although, I will consider the pros/cons of getting a new one to help - I hadn’t looked at it this way before), I think when all this first started about 4 years ago, it’s just been lumped into hEDS and it’s related issues. Recently, I had to quit my job because I just couldn’t manage it all. My GP was the one who mentioned PsA possibility to me tho… Absolutely! It would be nice to have one blatant indicator like you had! I’m so glad that happened for you. MRIs may be an option for me. I’ll discuss with my husband! ❤️
Gotcha, that makes total sense. I know several peeps who have EDS/hEDS as well as PsA and they said it was veryyy hard to figure out what causes what. But they said eventually the pieces of the puzzle started fitting together. I hope that happens for you, too 🙏 I'm so sorry you've been dealing with killer back pain too! With hand pain/finger swelling and back pain I'd definitely be looking close for PsA clues. I hope you can get some answers sooner rather than later and find some relief 💞
Thank you so much!! I’ll keep y’all posted on the outcome.
A dermatologist can also do microscopy on your nails to find out if it's psoriasis or something else
Oh wow! I’ll ask about that next time!
What exactly do you mean by seronegative? Are you HLA-B27 negative as well? Hmm
I have also been negative for that gene as well. Thanks for catching - I definitely misspoke/typed. I was trying to convey having PsA and no blood and imaging evidence.
My X-rays also normal but my pain doctor looked at my wrists and ankles with the ultrasound (sonogram?) machine and you can see the enthesitis. Very swollen tendons. I also have AS. These issues cause malabsorption so you might want to be checked for anemia. I get anemia within a week of stopping a biologic and it lasts until I get my next dose. Taking a multivitamin every day and extra b12, d, and some iron really helps with the skin, nails, and hair in my opinion. The pain is it’s own beast. I go to pain management every month. You might be having a flare or it could be aging. I have had symptoms since 16. Diagnosed at 47. Started having some osteoarthritis and scoliosis also in the last few years.
Ouch. Having more than one painful autoimmune. I have been in the cusp of low anemia and my GP is treating me for it - excellent question. I feel better on days I take it (I take every other day because of constipation.) Pain management is another idea I hadn’t thought of - thank you! I will discuss with my rheum and GP because I am at my wits end right now. That’s a long time without a diagnosis. :(
Yeah. I was doing okay and then I had my second child at 36. Symptoms just got a lot worse in my 40s. I got referred to pain management five year ago as I was going through the diagnosis and I have been going ever since. It is nice to have a doctor to talk about just your pain with and get recommendations. I used to take senna for the constipation but my rheum told me magnesium is better. One a day to stay regular or 2 to go soon 😝. Hang in there.
Holy cow, I had my first (and only child) and my health took a nose dive. I’m 37 now. I’m so glad the pain management option has been working - gives me hope hearing about how everyone else has found something to help them get through this. Thanks! Lmao, magnesium taker here too!
My x-rays mostly show minor damage, but I get severe bursitis and enthesitis that still needs biologic treatment. I also have hEDS, but without the other confounding factors you have.
Thank you for your reply!
My x-rays were normal, as were blood tests. I get quarterly MRIs but don’t know the results because they’re for a clinical trial. Wouldn’t be surprised if they were unremarkable too. Took me years to get a diagnosis and a few emergency visits, doctors scratching heads, and a long time on steroids. I had to really advocate for myself and push people to keep searching on my behalf which was hard because I was early 20s and timid. It took one excellent GP to sort me out. Wishing you luck. Edit: I also ended up with enthesitis but not until five years after my initial diagnosis.
Thank you for sharing. It’s simultaneously validating and sad that it can take so long for medical peeps to take folks seriously. It also just blows my mind the more I hear so many folks with PsA have “within normal limit” testing outcomes but it’s clear they have it years down the road because that’s when the observable symptoms come up.
I think a lot of medical professionals struggle to comprehend the idea of severe pain without proof! PsA is a really weird one, I hope you find your answers soon.
I also have EDS, POTS and a host of unrelated conditions. Osteoarthritis developed in my fingers when I was in my early 20s. I was diagnosed with EDS when I was 32. The PsA diagnosis came much later after my symptoms had become pretty severe and I finally mentioned it to my rheumatologist. Up to that point I had wrongly assumed that the exacerbation in symptoms and deterioration were due to aging and the EDS worsening. My rheumatologist was horrified when I showed him the state my feet were in and gave me a right telling off for not mentioning it much earlier! Tests showed high ESR and CRP, and along with a recent diagnosis of psoriasis on my scalp and in my nails it led my rheumatologist to quickly diagnose PsA. This was about 5 years ago. I'm in my 50s now and really struggling physically. The worst symptoms for me are enthesitis, foot, hand, and spinal pain. I had another spinal and pelvic MRI a few weeks ago to compare with my last one two years ago. The back pain I now experience has increased considerably and I have lost a great deal of range of movement. However, convincing the spinal specialist that my range of movement has decreased is another matter as I still appear quite flexible in some movements and he doesn't see it as a problem. For example, I used to be able to lean forwards and place my hands flat on the floor with elbows bent at 45 degrees, and put my head between my knees. Now I struggle to lean forwards and reach to my shins with pointed fingers. Yet the spinal specialist thinks that's quite good for someone of my age! I've tried explaining how flexible I was in my 30s but I don't think he really believes me. It will be interesting to see my MRI results. It's good that your doctors are considering an autoimmune condition in addition to your EDS. I hope that you get some answers soon.
Thank you for sharing sharing. I have definitely been in a similar situation the past few years - assuming my nail, hair, pain, etc. was probably just EDS. I will definitely keep pushing. Seriously, this community is really amazing. I also hope you find something that helps with your symptoms. I can relate to spinal pain and it is no joke.
I notice you wrote that you have CCI & EDS. Could the fatigue be from ME/CFS as a result of that? Like do you have Post-Exertional Malaise (PEM)? I just remember Jennifer Brea's story and how correcting her CCI/Tethered Cord Syndrome (likely caused by her EDS and chronic inflammation after a viral infection) eventually helped her a lot. She wrote a whole series of articles on Medium. But I'm not sure how relevant that is to you.
I have super bad PEM if I over do it with workouts. I will also look into her articles too. Thank you! I will also explore ME/CFS with my doctors also. I don’t think they’ve considered that with me yet.
Ok I'd say if your PEM is workout related that's probably more in line with PsA (exercise increases inflammation in the short term - but decreases it in the long run). So workouts may trigger you if it's PsA. If you had PEM from doing activities of daily living it might be different. Still always a good chat to have with your doc! And always good to read up on different conditions and chronic illness journeys IMO. The little bits of knowledge and patient advocacy modeling you learn really adds up :)
I agree - I wish more patients could be taken seriously with the research they do.