We haven't had a good old fashioned Brouhaha in a long time I have been sitting on this over a year and have checked numerous other sources and its holding up. As far back as 2008 the information has been out there So here it is
25% pf PsA Patients have Fibromyalgia Syndrome a more recent study puts that number as high as 35%.
Lets start with a basic Fibromyalgia Syndrome is not a disease. It is a SYNDROME. That doesn't mean it isn't real, it only means that it is not a disease so when it occurs with say PsA, the PsA always is king. Especially when in this case the disease occurs twice to three times as often without the attached syndrome as with it.
A syndrome is merely a collection of symptoms that occur together without a known cause. Those symptoms are very real. But here is where it get dicey and why I have ignored this topic. Lots of us have done anything and everything to avoid the FM label and rightly so. It is not a garbage diagnoses, there are rules but there is certainly a stigma attached, and if you spend any time around a finro board you will quickly learn the reputation is often time earned.
We can have a great discussion if we are NOT judgemental and keep to the facts. Many of us could likley benefit from the the growing number of meds for FMS pain keeping in mind that FMS is a secondary diagnoses.
One thing I would suggest that really helps keep perspective is not to refer to Fibro as fibro or as FM but rather as FMS. I say that because what we do know is that what ever causes the symptoms (the syndrome (as it were) is caused by something broken and related to PsA. There are other triggers for FMS but we are NOT going to talk about those. I say that but I'm leaving town in an hour.......
But seriously lets share what we know. I know several of us have been helped immensley by pursuing treatment for FMS in addition to primary PsA treatment.
I finally accepted the FMS diagnosis this summer, and I am so glad I did. I am taking Lyrica for it and that nagging pain that would not obey the Cease and Desist order has finally stopped. I have been wondering, more and more often, if those of us who seem to have well controlled PsA but who continue to have pain don't have secondary FMS. If you had two choices: live without pain and with a FMS diagnosis OR pain but no FMS diagnosis, what would you pick? It took me over a year to make that decision becasue I was worried about the negative associations with FMS that the medical community has. Hell, as a former ER nurse, even I had them. I think that may have made my choice even more difficult than it should have been.
I was initially diagnosed in 2002 with FMS after having severe cramping behind my left knee when trying to do my walking. I was an avid power walker and in one night my life changed. Went to my chiropractor for the knee issue and she noticed something was very differently wrong with me, suggested a rheumy and there we go. Then in 2006, my rheumy diagnosed me with PsA. I was having very different pain than was normal with my FMS. I belong to a couple FB pages for FMS and have a group of 9 of us ladies who have been together since the beginning. The small group is awesome, we are now more sisters than just e-friends. We keep each other built up and have formed close friendships with each other. However, the other pages are full of ppl who contribute to the stigma that has been attached to FMS, unfortunately. The negativity is sometimes overbearing and I just don't go to those groups. I understand that with any illness ppl are very different in how they react and pain levels, but we always need to try to stay positive and never forget how blessed we really are.
I was dx with FMS in 1993. I still think it was a bullcrap dx, in my case. I am pretty sure I had PsA all these years didn't get into serious treatment until 2012. I tried Lyrica and it didn't help me at all, and made me feel sluggish and paranoid. I wasn't helped by neurontin or tricyclic antidepressants which seemed to be the standard treatment in the 90's.
I have not tried Cymbalta. The only things that have eased my pain symptoms are steroids and opioids, and the jury is still out on Stelara ( my 4th biologic ). I'm not saying I don't believe in FMS, I am just saying that for me, it was an ill fitting label that made getting into appropriate treatment a much longer journey than it should have been,
That said, I would like to hear what other treatments for FMS, besides Lyrica, are showing promise in easing symptoms of either PsA or FMS.
Sybil, you and I have similar pain experience. For the most part, other than the neuropathy in my feet (and we won't include my recent back pain) my pain has been low level and constant--a lot of muscle weakness, stiffness and joints locking up that, I just realized--joints would lock up like the tin man's in The Wizard of Oz, but once I'd get them unlocked, they'd be fine until they were idle again.
I think a lot of PsA symptoms mimic FMS symptoms--my internist suggested FMS, but luckily sent me to a rheumy, who immediately dx'd it as PsA.
sybil said:
So much depends on the doctor. If you have a good rheumy who sees secondary FMS in the way you've described, then fine. If I had a rheumy who I knew was looking for reasons not to treat my PsA then I'd avoid a fibro diagnosis like the plague. I've had both types - I'd trust the current one for definite.
It seems to me that my disease is morphing - it used to cause a lot of mobility issues but I am so much better on that score. However pain was never the main thing. I'd still describe the pain I experience as low level, but considerably more constant - nerve type stuff, possibly. You will find me infuriatingly unscientific but the way I see it is that my body's had enough of PsA & is just complaining more. The disease is taking its toll. That's how I see secondary FMS - as a stressed-out body's response to chronic disease. Don't know if I'm even close to understanding it. A family member who has FMS & is a scientist did explain it to me like this, I think!
My doctor put me on cymbalta for my fibro pain and I can say it has helped. I am on enbrel, going on two years, and cymbalta (six months) and they seem to be working everyone is pleased.