This doesn’t apply to me but I was wondering. . . . I regularly see people both here and with other autoimmune diagnoses being given the additional diagnosis of fibromyalgia. For those who have been given this additional diagnosis, do you feel that this is appropriate? Or do the symptoms attributed to FM improve with improved PsA treatment?
I just can’t help but wonder about this. What got me started? I was having chest wall pain which is tender to the touch and it got me thinking about the tender touch points used to diagnose FM.
I was never diagnosed with fibro, but my doctor mentioned it to me once as if it was a possibility along with my PsA. I think some, if not all, fibro symptoms match PsA symptoms (or are very similar) and that's probably the sad reason why a lot of doctors are slow to diagnose PsA when the patient doesn't have any noticeable psoriasis. A doctor once told me that the medical community tends to think people with fibro just imagine their pain--yes, he said that--he was my daughter's pediatrician! That was close to 15 years ago, so hopefully they don't still disregard people who come in with "fibro" symptoms without psoriasis!
Back to my symptoms--a lot of my pain seemed like fibro, but when I started taking Enbrel all that type of pain disappeared along with the "real" PsA pain! ☺ Oh, and also I have had chest pain and pain in my thighs and arms that was tender to the touch, too! But haven't had that since I've been on Enbrel. You are on a biologic, right? It could be some "breakthrough" PsA pain from a flare. I definitely would not rule that out.
Does experiencing chronic pain for a long time predispose someone to fibro? A family member (she's a scientist) has fibro and thinks this may explain the frequent addition of a fibro diagnosis.
Like many others I'd resist this diagnosis given the correspondence of tender touch points and the entheses that trouble us. I'd resist it up to a certain point anyway, depending on a number of factors including the extent to which I trusted the judgement of the person giving the diagnosis.
Grandma J- so it sounds like you would encourage someone to argue the diagnosis of fibromyalgia, unless the PsA was under good control?
Grandma J said:
I was never diagnosed with fibro, but my doctor mentioned it to me once as if it was a possibility along with my PsA. I think some, if not all, fibro symptoms match PsA symptoms (or are very similar) and that’s probably the sad reason why a lot of doctors are slow to diagnose PsA when the patient doesn’t have any noticeable psoriasis. A doctor once told me that the medical community tends to think people with fibro just imagine their pain–yes, he said that–he was my daughter’s pediatrician! That was close to 15 years ago, so hopefully they don’t still disregard people who come in with “fibro” symptoms without psoriasis!
Back to my symptoms–a lot of my pain seemed like fibro, but when I started taking Enbrel all that type of pain disappeared along with the “real” PsA pain! Oh, and also I have had chest pain and pain in my thighs and arms that was tender to the touch, too! But haven’t had that since I’ve been on Enbrel. You are on a biologic, right? It could be some “breakthrough” PsA pain from a flare. I definitely would not rule that out.
I would also throw in the specific locations of the tender touch points. My GP mentioned it as possible but less likely in my case because chest wall tenderness falls under PSA vs fibro. Prediagnosis rib/chest wall pain was my most prominent involment. I was also told entheses goes both ways but inflammation is lower with fibro.
When I first saw my current rheumy, he had decided I had fibro and OA, and not inflammatory arthritis, almost before I'd walked through the door. I had been living with near-constant entheseal pain for about 2 years by that point, and had had a LOT of time to think about it and research, and discover about entheses and enthesopathy... He wouldn't let me describe where my pain was or its nature, and literally refused to feel the entheses that were at that point actually swollen, or the lumps that had grown on some of them. Instead, he examined the fibro tender points, and some were indeed tender since some entheses and FM tender points are the same. A lot of other points were tender too - MORE tender. I said to him "I may have fibro - it wouldn't be surprising since I have been living with chronic pain so long - but I don't think that's what's going on here: everywhere I hurt is a ligament or tendon attachment point, and you don't grow lumps with fibro". He wasn't interested. I persuaded him to agree to a hand/wrist ultrasound because I was so sure it would detect synovitis (and it did) but he was so sure it wouldn't that he wrote to my GP saying I had FM and OA *before* I had the scan, and then had to eat his words write again when the scan results came back. He still isn't interested in my enthesitis, although it is my biggest problem and source of pain, and that's one of the reasons I'm about to ask my GP for a referral elsewhere. So yes, I am pretty sure FM and PsA get confused sometimes... Personally, I don't care what they CALL it, but you get treatment for PsA-related enthesopathy and not much for fibro, so an accurate diagnosis is crucial.
I have fibromyalgia, period. No doubt in my mind that this is correct. However, I denied myself treatment for over a year because I did not want to have this diagnosis. My doctor mentioned it once, early on, and he got an earfull. I had been in the ER for a while, and not one staffer there believed it was a real diagnosis. Everyone who came in with fibro was immediately labeled a drug-seeker. I wanted no part of that. Not one bit. i think other people feel the same way. The medical community is learning more about FMS, but doctors aren't always easy to change, and those old opinions are difficult to uproot.
I definitely think that fibro is a common secondary condition with conditions that cause chronic pain. My theory is that chronic pain causes changes in the way people perceive pain, damages nerves, and leads to dysfunctional pain. Since I don't have a lab, I won't be providing supporting studis anytime soon, but that's my 2 cents.
I have fibromyalgia, period. No doubt in my mind that this is correct. However, I denied myself treatment for over a year because I did not want to have this diagnosis. My doctor mentioned it once, early on, and he got an earfull. I had been in the ER for a while, and not one staffer there believed it was a real diagnosis. Everyone who came in with fibro was immediately labeled a drug-seeker. I wanted no part of that. Not one bit. i think other people feel the same way. The medical community is learning more about FMS, but doctors aren’t always easy to change, and those old opinions are difficult to uproot.
I definitely think that fibro is a common secondary condition with conditions that cause chronic pain. My theory is that chronic pain causes changes in the way people perceive pain, damages nerves, and leads to dysfunctional pain. Since I don’t have a lab, I won’t be providing supporting studis anytime soon, but that’s my 2 cents.
No problem! I forgot to say how happy I am to have finally agreed with my PCP. Luckily, we have been together a long time and I had an opportunity to work with their office. He has always been kind and empathetic, hears and validates, and is all-around wonderful. He understood why I was so frightened of no longer being taken seriously because of accepting the diagnosis. I am so very glad I started treatment though. Within days of my first Lyrica dose, I noticed a huge improvement. I have this really deep dull ache in my long bones that caan be quite awful. Lyrica makes it disappear! There have been times where I have had insurance issues or lack of funds and had to go off of it, aand each time I am more and more positve that I made the right move by giving in. however, I never tell ER or urgent care that I have fibro. That information stays with the providers that I trust.
Stoney said:
Thanks for sharing this.
GrumpyCat said:
I have fibromyalgia, period. No doubt in my mind that this is correct. However, I denied myself treatment for over a year because I did not want to have this diagnosis. My doctor mentioned it once, early on, and he got an earfull. I had been in the ER for a while, and not one staffer there believed it was a real diagnosis. Everyone who came in with fibro was immediately labeled a drug-seeker. I wanted no part of that. Not one bit. i think other people feel the same way. The medical community is learning more about FMS, but doctors aren't always easy to change, and those old opinions are difficult to uproot.
I definitely think that fibro is a common secondary condition with conditions that cause chronic pain. My theory is that chronic pain causes changes in the way people perceive pain, damages nerves, and leads to dysfunctional pain. Since I don't have a lab, I won't be providing supporting studis anytime soon, but that's my 2 cents.
Stoney, after GrumpyCat explained her situation I'm not sure. I've thought for a long time doctors misdiagnosed PsA and offered a fibro diagnosis because, as we all know, there are no sure blood markers for either of these diseases and symptoms can be so similar (as in my case).
This isn't regarding fibro, it's about my husband. He's been having terrible joint problems for over a year now. It seems to migrate from elbow to ankle to hand, then foot, then wrist and so on. He's been miserable most of the past 12 months. He has a slightly elevated rheumatoid factor and tests show he has chronic gout. But I don't think all his pain/swelling is gout and doctor says rheumatoid factor isn't high enough to call it RA. I asked if he could have PsA because his dad and 2 brothers had psoriasis, and my husband has had itchy weird spots on his arms, stomach and thighs. Our rheumy doesn't think it's P or PsA. Why? Because he's never met a married couple who both have it. So there you go!
Stoney said:
Grandma J- so it sounds like you would encourage someone to argue the diagnosis of fibromyalgia, unless the PsA was under good control?
Grandma J said:
I was never diagnosed with fibro, but my doctor mentioned it to me once as if it was a possibility along with my PsA. I think some, if not all, fibro symptoms match PsA symptoms (or are very similar) and that's probably the sad reason why a lot of doctors are slow to diagnose PsA when the patient doesn't have any noticeable psoriasis. A doctor once told me that the medical community tends to think people with fibro just imagine their pain--yes, he said that--he was my daughter's pediatrician! That was close to 15 years ago, so hopefully they don't still disregard people who come in with "fibro" symptoms without psoriasis!
Back to my symptoms--a lot of my pain seemed like fibro, but when I started taking Enbrel all that type of pain disappeared along with the "real" PsA pain! ☺ Oh, and also I have had chest pain and pain in my thighs and arms that was tender to the touch, too! But haven't had that since I've been on Enbrel. You are on a biologic, right? It could be some "breakthrough" PsA pain from a flare. I definitely would not rule that out.
Grandma J- you said, " rheumy doesn’t think it’s P or PsA. Why? Because he’s never met a married couple who both havs it."
What a wacky statement! My husband has had psoriasis forever, as has his mother. No family history of PsA, but there is a certain percentage of people with psoriasis who will go on to develop PsA. With the hand pain that he’s been complaining about, along with fatigue and “feeling like an old man”, it certainly could be that he’s developed PsA. Your husband should be looked at with no consideration as to your own health status. If your doctor doesn’t consider all possibilities he’s an idiot.
LOL tntlamb and his granddaughter both have PsA. Not surprising, you say? Well, the graddaughter is adopted -- no genetic relationship there at all. Go figure.
How do the stats stack up?? 'Cos I think that when I first started this um, 'journey', not so long ago, the percentage of the population who have psoriasis was thought to be rather lower than it is now. And then the % of those with P who may go on to get PsA also seems to have been revised upwards in the last few years. If I'm right then it's not great to think that PsA may be rather more common than previously thought, but it certainly would increase the possibility of non-blood relatives in the same household getting it.
I feel pretty sad, four years after my PsA diagnosis and treatments, to be here to say that I have been given the additional diagnosis of secondary fibromyalgia on account of intractable symptoms of tenderness, aches, fatigue and tiredness that have got progressively worse at a time when my PsA has been coming under control.
My rheumatologist explained that something like 30% of PsA patients will have secondary fibro.
If this had come at any time before now (and certainly before I had my care transferred to a centre of excellence) I would have been scared that I was getting the brush off. As it is (and as much as I'd prefer it not to be) it does make alot of sense of many things not least of which is why I never, ever feel "well".
So this has all happened this week. I'm pleased to know there is reason why I feel so rubbish but I'm also feeling a bit shaky, it's hit me hard, because hope has gone out the window. I'll pick myself up and dust myself down over the coming days and find what I can do to help myself be as well as I can be.
It is hard when I was diagnosed with Psa and anklyosing spondylitis it hit hard still does sometimes. Wishing you wellness and emotional healing that is often the toughest part the pain we often deal with and get used to.
I'm sorry about that Jules. I think that it would hit me unbelievably hard to get that diagnosis at this point.
Jules G said:
I feel pretty sad, four years after my PsA diagnosis and treatments, to be here to say that I have been given the additional diagnosis of secondary fibromyalgia on account of intractable symptoms of tenderness, aches, fatigue and tiredness that have got progressively worse at a time when my PsA has been coming under control.
My rheumatologist explained that something like 30% of PsA patients will have secondary fibro.
If this had come at any time before now (and certainly before I had my care transferred to a centre of excellence) I would have been scared that I was getting the brush off. As it is (and as much as I'd prefer it not to be) it does make alot of sense of many things not least of which is why I never, ever feel "well".
So this has all happened this week. I'm pleased to know there is reason why I feel so rubbish but I'm also feeling a bit shaky, it's hit me hard, because hope has gone out the window. I'll pick myself up and dust myself down over the coming days and find what I can do to help myself be as well as I can be.
I was diagnosed with fibro by my old rheumy who saw me twice for 10 mins and basically pressed me hard at certain points. I never believed the diagnosis - apart from my inflammation in areas where it is psa I have no other problems. To be honest, I don’t give his diagnosis a second thought.
Thank you everyone for your replies. I've been 'busy' the last day or so devouring the Oxford Rheumatology Library book Fibromyalgia Syndrome by Professor Ernest Choy (this is in the same medical literature series as the Gladman/Rosen/Chandran PsA book). It has been very enlightening and I have had several "ah ha" moments reading it.
Like you Golfnut, I likely would have dismissed it were it not for the fact my diagnosis came from the UK equivalent of your Toronto medical team and that my PsA has been (and continues to be) aggressively treated with a biologic and appears successful apart from the secondary FMS symptoms of fatigue/tiredness and widespread (apparently) non-inflammatory pain and tenderness.
So to paraphrase Aspyn I think I have "got secondary FMS" and for sure I've got it ... I'm now working on my plan to manage it as best I can.
Can highly recommend the book to anyone wanting more info on FMS. It is orientated towards medical professionals but not beyond sufficient understanding for lay-people. I got mine through Amazon. Professor Choy is Head of Rheumatology and Translational Research at the Insititure of Infection and Immunology at Cardiff University.
Oh, and also I have had chest pain and pain in my thighs and arms that was tender to the touch, too! But haven’t had that since I’ve been on Enbrel. You are on a biologic, right? It could be some “breakthrough” PsA pain from a flare. I definitely would not rule that out.