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

Hey Chelle,
I was diagnosed with fibro a few months ago. A doc told me you can't get swelling like that with AS, felt a few points and said, "think it must be fm as well as AS.
I have just been OS for 2.5 weeks and forgot to take my Plaquenil. I could really feel my muscles after about a week. three days back on Plaquenil and a huge difference.
I have a whole cocktail of drugs too, slowly one by one they're dropping (my liver can't handle it). I can't get any of the TNF's due to government restrictions in oz.
Just know that you are not alone and can always come here for support.
Take care and keep smiling,
Rose

There is now the new pot pill which can be prescribed. Ask your doctor about it, it has the same chemical as pot has and it is legal, I've taken it in the pass, helped alot!!!

Provigil (if memory serves) was initially for people with narcolepsy. Yes, it is a stimulant, but not like speed or something like that. I can take one and go sound asleep. I do feel more energetic, or rather not fatigued. My pain improves too. I don't know whether I can tolerate my pain better because I am not so fatigued, or if it helps with the pain as well. I suspect it is the former.
I discovered some articles on the internet that delt with using Provigil for FM, and I took them to both my internist and my rheumatologist. My rheumatologist prescribed it for me, and the next time I saw her she had done some research on her own. My internist said it made sense - since some research on FM seems to point to part of the cause of FM is poor sleep. (It doesn't make sense to me because all I seem to want to do is sleep - and can for days at a time. I WILL get up to pee and feed the dog during my sleep marathons )

Hi there,

I too have the double whammy. But I can't tell where one starts and the other stops.
My rheumy just switched me to Enbrel (haven't had my 1st injection yet---that will be tomorrow) from Remicade (one good day wasn't enough). He also has me on Arava, Provigil (it helps me stay awake after lunch at work), pain killers, Skelaxin and Pred. Still feel like I'm being tortured, though.
I don't have any words of wisdom, but we are in the same boat together .
BIG gentle hugs ,

Hi LF, I also have both, and can relate to sometimes not knowing what is causing what. I often feel as though i've been hit by a truck or that i've been exercising excessively when I've done nothing, and the foggy head is just awful. I did have a spate of taking a low dose of nortriptyline which is an antidepressant that works as a muscle relaxant in low doses which helped, but stopped taking it when i stopped all meds due to a massive reaction to Arcoxia a few months ago, its worth a try though. Unfortunately no great advice to give other than take it easy as much as you can, I find the fatigue of this coupled with AS fatigue to be so horrendous sometimes i don't actually know how i keep going, but i do!

I will ask my doc when I see him next about this pot pill but as far as my state goes I believe it is not allowed...but it cant hurt to ask and besides if it cots my pill popping down from 9 to 1 or 2 that would be a better way to go.....oak

Hi Chelle, I have both as well. Aren't we lucky?

Sometimes I simply can't tell which one is causing the pain, to be quite honest. The fatigue could be both. Since I started taking Amitryptiline (someday I'm going to learn how to spell that consistently) I'm getting better quality sleep and so the fatigue isn't as bad. Tylenol Arthritis does bupkuss for me - zip, zilch, nada - unless I take four at a time, which I don't do often as it's bad for you. Sometimes, the Celebrex helps the pain, sometimes it doesn't. When it doesn't, the only thing that can make my muscles relax is pot.

I have found (egad I'm almost afraid to say this) that exercise helps both - in muscle relaxing terms and in terms of keeping my joints moving. But that's me.

Oddly, the dx of AS came very easily for me (once I started looking); however, the dx of FM has not. One doc says yes, the other says no. The majority say yes, so I'm going with it.

Hugs,

I finally decided to write a (three page ) letter to my rheumy detailing what any given 24 hour period is like for me, including the meds, the insane amount of caffeine, and the lack of relief from either.

I've figured out from proofreading that letter that my sleep has been reduced to a series of three hour naps, never longer, even at night. I've also figured out that I've stopped doing a lot more than I realized outside of work.

I'm hoping when she gets the letter (I faxed it, but apparently the office had been closed all week, and won't be open again until Tuesday) she'll call me with some better treatment options.

There's only three things that keep me from going back to pot: Joshua, Kaylie, and the law. I think the kids would forgive me if the law would, but in the meantime, I don't want to be a bad influence on the dualling geniuses.


BTW, Inanna, I love the new fairy. Can I copy her for my daughter? She collects them.

Hey Chelle, that letter sounds like a really good idea. It'll be interesting to see what reaction there is. Funny how writing things down helps us figure them out, eh.

I sleep through the night for the most part, but am always aware of tossing and turnign when things get bad. The past week, I've been falling asleep on the couch at 9 or 10, which always tells me I'm flaring somehow or other. I wake up around midnight, go to bed and sleep until 6:30. Then I hit the snooze button 3 or 4 times. It's nuts. But it was worse before the Amitryp. I wonder if I'm getting too used to it or something.

Yeah, the law worries me (don't have the kids), but up here they don't generally arrest you for possession for personal use (less than an ounce - which is an insane amount of pot for any one person to have, but hey). I'm going to talk to my rheumy about getting on the medicinal pot list so that I can get (and grow) legally. One less worry, right?

And by all means you can copy the fairy.

Hugs,

Hey there Lady,
I've also tested positive for the 18 points that indicate FM along with the AS. What works for me is first lots of exercise at the gym, finding that perfect balance of course, and massage therapy, Indomethacin, Azulfidine, Cytotec, and low dose of Oramorph per day and of course being blessed by the good Lord. No magic answer but getting and keeping the right combination everyday. Stay in the fight. Hope this helped. Painman. <><