Folks with fibro...some questions | Arthritis Information

I saw my RD today and the thought that I might have fibro was finally put on the table when I told her about the GI problems I've been having. She said not only does fibro cause muscle pain, tenderness, stiffness, and a the wonderful fatigue that has to be experienced to be believed BUT it can also cause IBS like symptoms!

She gave me a new drug called Savella to try out for a month. Anyone here take this yet?

Give me some input here. I think she may damn well be on the money here because I have next to no swelling/inflammation, my labs are normal, and still I have the pain, stiffness, and fatigue like nobodys business! And the massive dose of pred I've been on doesn't seem to help so I'm inclined to believe that RA is not 100% to blame here.

Anybody have any input?

Thanks

Bob

I have fibro and ra but I have not tried that one yet have been through the cymbalta etc right now I am doing flexerill, Arava, naproxen , prednisone ( those 2 for flares) and nortriptilyne Yes, that does sound like good ole Fibro. But I haven't heard of that medication...is it new? I take Relafen as an anti-inflammatory, Skelaxin as a muscle relaxer, and Lyrica as an anti-neuropathy med and "anti-Fibro" med.Oh my.. I read your post yesterday and then spent a good deal of time reading on GI symptoms with fibro..

Yikes..

all my labs are normal, yet here I am coming off another special 3 day visit to hell.. Nausea, bloating, gas (dear god the farts!!) vomiting, diarrhea, and feeling just awful..

Luckily I got an appt to see my NP this afternoon.. If its IBS along with the fibro I am not going to be pleased.. I have just barely come to terms with the fact that I have fibro.. I had IBS way back in HS but it resolved itself after about 3 years.

Hey Bob,

This drug sounds interesting. I hope it makes a difference for you. I control my fibro with Low dose Naltrexone and Skelexin. This combo has worked well for me for a year now.

Once under control, the world sure looks different and you don't have that feeling of doom hanging over you - I get this feeling because I feel so bad, I feel there must be something horrible going on.

I am glad your RD is looking at the Fibro issue. I found that the fibro flares were so bad that I was confusing them with RA flares! It took me awhile to sort that out.

Good luck on your quest Bob, and let us know how this drug works!

Waddie It made a difference alright. The worst nausea I've ever experienced in my life! To the point I didn't sleep a wink. I'm going to hold off on it and call my RD tomorrow to talk to them about that. Maybe I should try lyrica first or something a little more "mild" to treat it?

I saw a neurologist today and he didn't even mention it as a possibility though. He did say that the feeling of muscle weakness is not weakness because he can't note any measurable weakness on physical examination. He said actually Robert, you're pretty damn strong if you ask me. Only the legs showed a measure of weakness. The feeling that I'm having however is real and it is not weakness but extreme fatigue from RA, depression, and steroids combined.

The only other possible disorder that was discussed was myasthenia gravis which he seriously doubts but he's going to do another EMG in a few weeks which will rule out this possibility. If it shows normal, then steroid myopathy is the official diagnosis. So still no crystal clear answers but I think maybe we're getting closer.

Bob

Bob, I find (still) when I mention I have fibro, it is not always taken seriously. Anyone who has it can tell you it is really something to contend with. I had a heck of a time learning to differentiate between RA flares and Fibro flares. My first 2 RD's didn't even recognize the fibro.

Be persistent... you know your body best. I can tell you, not having that pain is really possible and feels really good. The only time I have issues now is when I am stressed, burning the candles at both ends.

Also, good sleep helps sooooo much! That's what I take Trazadone for... it is an old drug once used for depression. Turns out, it is horrible for that but great for sleep and the only one that doesn't cause me headaches.

Good on you for look for and being persistent in finding the right answer for you!

Waddie
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