Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group FM vs AS

I'm just wanting to know if anybody out there is battling the double whammy of having fibromyalgia and AS together. Truthfully, I know there are, and I'm just wondering how you fight them both at the same time.

I'm taking Enbrel, along with a cocktail of other stuff (NSAID, proton pump inhibitor, pain med, muscle relaxer), and other than one blessed week of relief a while back, I'm still in constant pain. My rheumy says its the fibro that's torturing me, and although my first reaction is to roll my proverbial eyes (from all the years that the AS was missed), I have to admit that there are times I can tell that it is indeed the muscles in my shoulders vs the joints.

So for the AS my rheumy says to exercise, then when I do she says to lay off because it's causing the fibro to flare. She tells me to keep active, then she says I'm overworked and need to reduce my stress.

Anybody got a secret recipe to stop this crazy cycle????

oh yes i got the double whammmmmy as well my doc has me on painkillers(tramadolwith650mg of tylenol) valium and flexeril....he says ther ain t much more he can do but maybr my rheumy can..but I cant see my rhuemy intil i get squared with the bill....i am hoping the next time I see my rheumy he will give me enbrel or remicade....but for now i got the pain and spasms under cintrol with what im taking now......oak

LF... i too have both... it's very hard to explain to family, etc. that today i need to move as often as possible and tomorrow i may need to wrap up in a blanket and be left alone...

the only good thing about having both is that they are different and allow you to tell which pain is which (at least some of the time)... i think your doc is right... attack the one that's attacking you... easier said than done, i know.

you used a great phrase... double whammy... sometimes i can't even talk... my family knows when i hold up my hand (like "stop") it means i just can't talk right now (i don't have kids). oh... don't let anyone bug you about all the drugs... those are decisions made by you and your doc... and it's an ongoing process, i use the word cocktail with my family too. i say we're trying to find the right amount of each that's best for me.

i don't feel that i'm being terribly helpful... just know you're not alone... i understand!

gentle "double whammy" hugs,
teddi

Thank you guys for the support and understanding. I don't think I actually expected a miracle cure (otherwise why would we all be here?)

Sometimes it's good just to know others feel the same way I do.

Me too, I have both. I am on my feet most of the time at work, and even though I am in pain, I find I do better when I do keep moving. In addition to my other meds, my rheumatologist has given me Provigil to counteract my fatigue and poor sleep. It is very expensive, so I use it sparingly, but it does help.

I am so glad your landlord came through.

I've heard of provigil before...what is it, and does it help (i.e. does it just help the fatigue, or do you clean your house, then the neighbor's, then the other neighbor's... )

Thanks for the well wishes, too.

Hi,
I suffer from both too...along with I.B.S. I don't think many doctors know how to deal with both. For a long time I was told the F.M. was all in my head. Been on so many meds. I've lost count. Some made it better if I wanted to be a total zombie! It is so difficult for family and friends to understand as " you look okay". All of us here do understand though, and for me when rough days hit I relax with a good book.
Sometimes it scares me when I go to the doc with a pain and I get so frustrated when nothing can be found so he says it's the fibro. I send you gentle hugs. Sorry, I have no secret recipes, wish I did so I could share with all. Alot of F.M. people that I've chatted with have recommended pot???

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Been on so many meds. I've lost count. Some made it better if I wanted to be a total zombie!

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Yep. that's me! I used to be one of those "I'm not a pill person" people. At least I think I was...once.

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Alot of F.M. people that I've chatted with have recommended pot???

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Now there's an idea. I wish!

to bad FM aint in that catagory of certain diseasaes that pot can be perscribed besides inmy state docs can t even prescribe it....but if there is something out there that works let me know because its a real killer when my FM,AS, and RA kick in all at the same time. and I have to try to move around I get so exhausted just wlaking 5ft.......oak

Well, the last time I saw the inside of an ER thanks to the AS & FM going off at the same time, the doc there gave me dilaudid (long acting opiate). I'm betting that has to be worse than pot. It was injectable idiot serum-I was "high" for days. At least I think I was. You know, now I'm not sure