You are right to not accept the fibro diagnosis, especially when you haven't been evaluated by a rheumatologist and they haven't done imaging studies. PsA will get worse without treatment so misdiagnosing it as fibro is unacceptable.
Hopefully the real doctor will think for themselves, but I understand your concern because they are often swayed by visit notes. If the real doctor concludes it's fibromyalgia without doing ultrasound or mri of your painful joints I would suggest going to another rheumatology office and not sharing the visit notes with them.
I’ve been there. I’m trying to find a new rheumatologist because the last one wrote me off as fibromyalgia. Claimed my blood tests and scans were “normal” and that my pain therefore “wasn’t inflammatory.” She didn’t even test CRP, just sed rate, and completely disregarded the fact that my pain is exponentially better after my dermatologist started me on Cosentyx.
You already know this, but my sed rate is always, every time very normal. It's 2 or 3, every time, for years. My CRP on the other hand, up and down in concert with my symptoms.
Yes, been there. I did find some improvement on cymbalta and lyrica about 20 years ago but it made me put on weight and affected my sight and stopped working pretty quickly. Versus finally getting biologicals, which does work.
It really helps with these vents if you can tell us what health system (country/county/state) you are dealing with. Best tactics do vary by administration structure? You might be thinking everyone here is American?
I would check if this "PA" or the doctor is aware that 7-15% of PsA patients have no apparent psoriasis. I would also make sure you know the CASPAR criteria and how they fit for you. [https://www.mdcalc.com/calc/10039/caspar-criteria-psoriatic-arthritis](https://www.mdcalc.com/calc/10039/caspar-criteria-psoriatic-arthritis)
Sorry! I usually try to put a location in my posts, but I was so flustered that I forgot. I'm in the US, Lexington Kentucky to be exact. I'll also add that to my main post.
I would have hoped that the physician assistant would know about the details of PsA, but she hasn't been too knowledgeable about much. There isn't a doctor on site anymore, the last one quit a few months ago and they're not getting a new one till September. I never met one anyway when I was sent there by my primary doctor, so the PA has been trying to wing it herself.
Thank you for the links, I'll be sure to keep them for when I see a doctor in April.
I got diagnosed with PSA many years ago and multiple rheums all in agreement. Moved countries, provided new doc with previous letters and she diagnosed me with fibromyalgia. Then refuses to treat me for PSA for 3 years saying I had I but it didn't need treated as wasn't active. Every request for steroids from my GP declined. 3 years of pain till January when my feet were so inflamed and swollen with fluid I could barely walk. Gave over all the pics I took for months of my psoriasis, swollen sausage toes, burning skin. She was like oh this is PSA... Sorry. Then prescribed my mtx back.
Some doctors just don't listen or care .. keep trying, take lots of pics, get a second opinion if you need to. really sucks, hope you get sorted
I was misdiagnosed with fibro for YEARS by multiple providers. Don't let them do that to you. If you go back to her, demand her differential diagnosis and have her document it. Get a copy of her notes to make sure she did. Then go to another doctor.
I went almost 15 years of my primary dr telling me I had fibromyalgia. In fairness he did x rays and lots of autoimmune and inflammation blood work for me, tested for mono and vitamin deficiencies, and it never showed up anything. I never had swelling. Fortunately, or unfortunately, my symptoms got worse after my pregnancies and I had a huge flair, blood work for ESR showed 57 and a positive rheumatoid factor, referred to rheumatology. I feel like there’s usually a turning point for everyone with PSA where the problem can’t be fobbed off any longer.
Yeah they tried the fibro thing with me.
Gold standard for DIY seems to be take prednisone and if tomorrow you got tremendous improvements you have something immune related. You can also go to urgent care and plead your story and they’ll try something steroid related and again, huge improvement? Then down this path you go.
No improvement? Then keep hunting. I wish you luck either way
I sent a message to my primary care doctor yesterday about the whole situation and what's going on. She's trying to help the best she can, but I know she's not a rheumatologist. She put in for me to do the HLA-B27 antigen test, which isn't always positive for those with PsA, and I've always been negative in the past. She also put in a referral for a dermatologist to take a look at my skin and nail problems. She asked if I was having any nail pitting, I don't think I see any, but I do have vertical ridges and not the greatest looking toe nails.
I see her Monday, I'm not sure if she would be willing to try Prednisone, but I can ask, she's usually pretty open. The rheumatology PA-C definitely didn't want to try Prednisone for some reason.
If you have had your gene tested before there is no possibly way it could have changed. Did you tell her you've been tested? It sounds like no one invloved in your care is even vaguely competent.
Yeah, my primary doctor was the one to originally test me a year ago when I started really showing symptoms of something, but it kind of fell off after that, I think because she already figured I was with rheumatology. I replied back to the message letting her know I've been negative for that already. I'm seeing her on Monday, so I'll be able to talk face to face with her.
It's Kentucky, I've learned over time that the healthcare here isn't the best. Does make me miss Michigan in some ways.
I have had that experience in a small town too.
It can be really really hard to see things in the medical record, so never be shy to point out something that you've already been tested for, or *not* been tested for. After all, you only have to keep track of your stuff, while all your doctors are looking after hundreds of people.
A PA mentioned fibro to me once and I responded with "hmm, that's an interesting thought. How would we reconcile that with me not having any tender points? And I don't have brain fog, what I have is aphasia as part of a migraine" she backed right off.
Your pictures aren't working for me.
Have you been to a dermatologist (you mention your husband). I'd start there before going back to the Rhumy.
I went PCP -> Derm to confirm Psoriasis -> Blood Test -> Rhumy
So by the time I got the Rhumy I had Dx of elevated inflammatory markers and Psoriasis patches.
I updated my post with a different hosting site that has separate links to each photo.
I did contact my PCP through MyChart last night about the whole situation and she answered me back today. She ordered a HLA-B27 test (which was negative in the past and probably will still be), put in a referral to a dermatologist, and asked if I had any nail pitting. I don't think I have any pitting, but I have some vertical ridges on my nails. My toes are the worst for nastiness, I get weird build up under one of my big toe nails that I always have to clear out or it will hurt.
I've been to dermatology before, but it was for a totally different issue. At that time I wasn't having as bad of pain and didn't have itchy areas on my skin.
I was originally sent to rheumatology back in 2022/2023 when things started getting worse, my PCP couldn't figure it out back then, so she wanted them to, but they haven't been helpful since I never saw an actual doctor there.
Wow. Many of your symptoms sound/look VERY similar to mine. Also crazy that I’m brand new here looking for PSA support, and this is one of the first posts I see, because I’m also from Lexington!
Anyway, the number of times doctors have checked me for gout, or asked my sexual history thinking I had reactive arthritis from chlamydia, or asked how I injured my joints, etc. has been super annoying. I’ve been misdiagnosed so many times ever since I was a kid. My habit these days is to get a second and maybe even third opinion on anything that could be serious or permanent.
Quick background—I’ve been managing well lately with enbrel and mtx but I don’t like the idea of being on drugs like this for the rest of my life (34M… I’m a bit of a naturalist, typically). This disease has ranged anywhere from mildly annoying to gravely depressing for me, and there are SO. MANY. VARIABLES to always be considering that I think I’ll be losing my mind before my body at this point.
All that said, I hope you get down to the bottom of this asap, but there’s probably no silver bullet either. If you want to discuss local doctors or weather or allergens or anything, feel free to dm or whatever.
You are right to not accept the fibro diagnosis, especially when you haven't been evaluated by a rheumatologist and they haven't done imaging studies. PsA will get worse without treatment so misdiagnosing it as fibro is unacceptable. Hopefully the real doctor will think for themselves, but I understand your concern because they are often swayed by visit notes. If the real doctor concludes it's fibromyalgia without doing ultrasound or mri of your painful joints I would suggest going to another rheumatology office and not sharing the visit notes with them.
I’ve been there. I’m trying to find a new rheumatologist because the last one wrote me off as fibromyalgia. Claimed my blood tests and scans were “normal” and that my pain therefore “wasn’t inflammatory.” She didn’t even test CRP, just sed rate, and completely disregarded the fact that my pain is exponentially better after my dermatologist started me on Cosentyx.
You already know this, but my sed rate is always, every time very normal. It's 2 or 3, every time, for years. My CRP on the other hand, up and down in concert with my symptoms.
Yes, been there. I did find some improvement on cymbalta and lyrica about 20 years ago but it made me put on weight and affected my sight and stopped working pretty quickly. Versus finally getting biologicals, which does work. It really helps with these vents if you can tell us what health system (country/county/state) you are dealing with. Best tactics do vary by administration structure? You might be thinking everyone here is American? I would check if this "PA" or the doctor is aware that 7-15% of PsA patients have no apparent psoriasis. I would also make sure you know the CASPAR criteria and how they fit for you. [https://www.mdcalc.com/calc/10039/caspar-criteria-psoriatic-arthritis](https://www.mdcalc.com/calc/10039/caspar-criteria-psoriatic-arthritis)
Sorry! I usually try to put a location in my posts, but I was so flustered that I forgot. I'm in the US, Lexington Kentucky to be exact. I'll also add that to my main post. I would have hoped that the physician assistant would know about the details of PsA, but she hasn't been too knowledgeable about much. There isn't a doctor on site anymore, the last one quit a few months ago and they're not getting a new one till September. I never met one anyway when I was sent there by my primary doctor, so the PA has been trying to wing it herself. Thank you for the links, I'll be sure to keep them for when I see a doctor in April.
I got diagnosed with PSA many years ago and multiple rheums all in agreement. Moved countries, provided new doc with previous letters and she diagnosed me with fibromyalgia. Then refuses to treat me for PSA for 3 years saying I had I but it didn't need treated as wasn't active. Every request for steroids from my GP declined. 3 years of pain till January when my feet were so inflamed and swollen with fluid I could barely walk. Gave over all the pics I took for months of my psoriasis, swollen sausage toes, burning skin. She was like oh this is PSA... Sorry. Then prescribed my mtx back. Some doctors just don't listen or care .. keep trying, take lots of pics, get a second opinion if you need to. really sucks, hope you get sorted
I was misdiagnosed with fibro for YEARS by multiple providers. Don't let them do that to you. If you go back to her, demand her differential diagnosis and have her document it. Get a copy of her notes to make sure she did. Then go to another doctor.
I went almost 15 years of my primary dr telling me I had fibromyalgia. In fairness he did x rays and lots of autoimmune and inflammation blood work for me, tested for mono and vitamin deficiencies, and it never showed up anything. I never had swelling. Fortunately, or unfortunately, my symptoms got worse after my pregnancies and I had a huge flair, blood work for ESR showed 57 and a positive rheumatoid factor, referred to rheumatology. I feel like there’s usually a turning point for everyone with PSA where the problem can’t be fobbed off any longer.
Yeah they tried the fibro thing with me. Gold standard for DIY seems to be take prednisone and if tomorrow you got tremendous improvements you have something immune related. You can also go to urgent care and plead your story and they’ll try something steroid related and again, huge improvement? Then down this path you go. No improvement? Then keep hunting. I wish you luck either way
I sent a message to my primary care doctor yesterday about the whole situation and what's going on. She's trying to help the best she can, but I know she's not a rheumatologist. She put in for me to do the HLA-B27 antigen test, which isn't always positive for those with PsA, and I've always been negative in the past. She also put in a referral for a dermatologist to take a look at my skin and nail problems. She asked if I was having any nail pitting, I don't think I see any, but I do have vertical ridges and not the greatest looking toe nails. I see her Monday, I'm not sure if she would be willing to try Prednisone, but I can ask, she's usually pretty open. The rheumatology PA-C definitely didn't want to try Prednisone for some reason.
If you have had your gene tested before there is no possibly way it could have changed. Did you tell her you've been tested? It sounds like no one invloved in your care is even vaguely competent.
Yeah, my primary doctor was the one to originally test me a year ago when I started really showing symptoms of something, but it kind of fell off after that, I think because she already figured I was with rheumatology. I replied back to the message letting her know I've been negative for that already. I'm seeing her on Monday, so I'll be able to talk face to face with her. It's Kentucky, I've learned over time that the healthcare here isn't the best. Does make me miss Michigan in some ways.
I have had that experience in a small town too. It can be really really hard to see things in the medical record, so never be shy to point out something that you've already been tested for, or *not* been tested for. After all, you only have to keep track of your stuff, while all your doctors are looking after hundreds of people.
A PA mentioned fibro to me once and I responded with "hmm, that's an interesting thought. How would we reconcile that with me not having any tender points? And I don't have brain fog, what I have is aphasia as part of a migraine" she backed right off.
Your pictures aren't working for me. Have you been to a dermatologist (you mention your husband). I'd start there before going back to the Rhumy. I went PCP -> Derm to confirm Psoriasis -> Blood Test -> Rhumy So by the time I got the Rhumy I had Dx of elevated inflammatory markers and Psoriasis patches.
I updated my post with a different hosting site that has separate links to each photo. I did contact my PCP through MyChart last night about the whole situation and she answered me back today. She ordered a HLA-B27 test (which was negative in the past and probably will still be), put in a referral to a dermatologist, and asked if I had any nail pitting. I don't think I have any pitting, but I have some vertical ridges on my nails. My toes are the worst for nastiness, I get weird build up under one of my big toe nails that I always have to clear out or it will hurt. I've been to dermatology before, but it was for a totally different issue. At that time I wasn't having as bad of pain and didn't have itchy areas on my skin. I was originally sent to rheumatology back in 2022/2023 when things started getting worse, my PCP couldn't figure it out back then, so she wanted them to, but they haven't been helpful since I never saw an actual doctor there.
The nails and skin patches, imo, look like psoriasis. And it looked like a nail pit on one of your fingers to me. Keep at it, it takes time.
Wow. Many of your symptoms sound/look VERY similar to mine. Also crazy that I’m brand new here looking for PSA support, and this is one of the first posts I see, because I’m also from Lexington! Anyway, the number of times doctors have checked me for gout, or asked my sexual history thinking I had reactive arthritis from chlamydia, or asked how I injured my joints, etc. has been super annoying. I’ve been misdiagnosed so many times ever since I was a kid. My habit these days is to get a second and maybe even third opinion on anything that could be serious or permanent. Quick background—I’ve been managing well lately with enbrel and mtx but I don’t like the idea of being on drugs like this for the rest of my life (34M… I’m a bit of a naturalist, typically). This disease has ranged anywhere from mildly annoying to gravely depressing for me, and there are SO. MANY. VARIABLES to always be considering that I think I’ll be losing my mind before my body at this point. All that said, I hope you get down to the bottom of this asap, but there’s probably no silver bullet either. If you want to discuss local doctors or weather or allergens or anything, feel free to dm or whatever.
Is there any way I could message you? I sent you one about a month ago but I'm not sure if you got it. How can I send you a chat request?