Good News / Bad News?

[JenG]

Well I just got the results from my bloodwork back. The doc ruled out RA, Lupus and a Thyroid disease. :)

Don't get me wrong, I am glad the tests came back normal...but now what? The nurse told me that the doc said it looked like I had fibromyalgia and that he didn't need to see me for a followup visit because all the meds I take for my IC should help my fibro? :confused:

I get the feeling from talking to my doc and the nurse that they don't take fibro. very seriously and think that most of my problems are depression and "in my head". It is very frustrating to now have two diseases that nobody really knows much about or exactly how to treat! :headbang:

Does anyone know if there are docs that specialize in fibro. treatments? I have an HMO and am pretty well stuck with my primary care doc to take care of everything, but I feel that this is beyond him. I'm already paying out of pocket for my IC doc, but it has been worth it for all the help he has given me.

I don't know how much longer I can stand all this constant joint and muscle pain and weakness. I just finished folding laundry and my entire arm and shoulder are aching so much I feel like I have been lifting weights for hours! By the end of each day I am so weak that I can barely grasp the tv remote! :(

I am sooo tired and feel like I am on an uphill battle for my own health and sanity. I have found some info. on fibro. but any help I could get from anyone that has been through this would be great. Thank you so much.

[Portia17]

Jenny

What city and state do you live in? I belong to a great board called chronic pain support group and a lot of them have Fibro and they might be able to refer you to a doctor if they live near you

Mary

PS. IF YOU WANT THE OTHER SITE WHERE A LOT OF PEOPLE HAVE FIBRO, I CAN FIND OUT FOR YOU IF YOU WANT TO JOIN

[Katrina]

:grouphug: ((Jen)) I know the feeling, I mean we suffer so bad, we don't want something terrible wrong with us...but we sooo desperatly want help and treatment. To have something the doc isn't going to take seriously isn't going to help us get better faster! grr :grouphug:

Is IC making it difficult for you to sleep??? I just recently read that there is some debate that that the pain from fibro is from not sleeping well. Anyway, I hope you feel better soon. Good luck on getting good treatment. Maybe you could use a second opinion?
:kiss:

[JenG]

Mary, I live in San Juan Capistrano, California. (south orange county) Thanks for the info! I appreciate all of your help!

Katrina, Thanks for the hugs and understanding. I was having an awful time sleeping until the doc upped my elavil to 25mg. That along with the atarax makes me pretty sleepy, but I always wake up exhausted so that makes me wonder if I ever got into a deep sleep stage.

Thanks again! :grouphug: :kissing:

[Portia17]

Jen

I just posted on the chronic pain mgmt boards how you would go about joining the group as I cant remember the link for your fibro

I will keep u posted

Hugs
Mary

[DanaW]

I feel for you Jenny.....I have suffered from Fibro. for 16 years. I got it way to young at age 22. I thought it was bad enough and then, bang, another chronic pain condition :headbang: There are definately support boards/groups out there.....just do a search for Fibromyalgia and it should bring up a ton of info. Your Dr. was right about the medications being almost the same as with IC. I don't take Elavil though...I used to take it for years but, never went back on it after my last son was born 10 years ago.....for me, I didn't like the side effects. Hopefully you will find a good Dr. (usually a Reumotoligist sp?) and you will get your diagnoses. One thing that I do recommend is Flexeril. I had used it on and off for years....but, when I got the full blown IC, I started back on it. It helps somewhat for the muscle spasms that we get with FM. I don't go a day without FM pain, usually in my neck and back area....I have just learned what I can do and what I can't do....I have always felt that it robbed me of the best years of my life....I try not to dwell on it though. When you have FM you don't go into your 4th stage of sleep. (that is when your body rests the most and heals itself) That is why we are stiff and achy when we wake up. Flexeril helps with that. Here is what I take: Flexeril 10 mgs. x2 before bed; Hydroxizine 25 mgs. x2 before bed; I also take OxyContin 30 mgs. every 12 hours; and, a few others like Synthroid (for my Hypo-Thyroid) etc....One thing I can't figure out is why my OxyContin doesn't help my FM?? While it helps with my bladder/pelvic pain, it does nothing for my muscle pain. It also sucks to have cold/unsimpathetic Drs.....do your research and find one in your area who sees a lot of FM patients...I wish you well :grouphug:

Dana W.

[Betsie]

http://fmaware.org/


This is a good link for fibro...my husband has this and after many years has found his own knowledge is his best way to deal with it. Good luck, and for sure be so thankful they ruled out MS and other things. Fibro is a pain, literally, but there are many things you can do on your own...learn as much as you can before seeing a specialist, I think it would help in having a good Dr/patient relationship. :)