# New to this forum- any advice?



## kasey0505 (May 16, 2007)

*Hello there- I am new to this forum. I suspect that I have Fibromyalgia. Every 6 to 8 weeks I have an acute episode that lasts 4 to 5 days where I am just wiped, can't function. I hurt so much and am so tired all I can do is go home and sleep. And I am in a very stressful job which doesn't help. Over the years I just thought it was my IBS-D acting up, but someone suggested I look into Fibromyalgia. The symptoms I experience during my acute episodes (some are chronic) include:Skin/muscle painShooting pains in joints (usually hands)WeaknessFatigue Twitching when trying to fall asleepFibro-fogSwollen glands IBS-DVertigo - balance feels like it's offPalpitationsCannot sleep through the night - wake up several timesI am in the process of finding a Rheumatologist. Do any of you have any suggestions in finding the right one? Any questions to ask or info to give the doctor?Any feedback will be much appreciated!Thanks!!*


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## 20749 (Apr 22, 2007)

kasey0505 said:


> *Hello there- I am new to this forum. I suspect that I have Fibromyalgia. Every 6 to 8 weeks I have an acute episode that lasts 4 to 5 days where I am just wiped, can't function. I hurt so much and am so tired all I can do is go home and sleep. And I am in a very stressful job which doesn't help. Over the years I just thought it was my IBS-D acting up, but someone suggested I look into Fibromyalgia. I am in the process of finding a Rheumatologist. Do any of you have any suggestions in finding the right one? Any questions to ask or info to give the doctor?Any feedback will be much appreciated!Thanks!!*


It does sound like fibro, but for me, a rheumatologist has been of no help at all. Anybody else?Angie in Texas, US


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## M&M (Jan 20, 2002)

Kasey,Oh I am so sorry that I missed this post of yours!The first advice I ever give anyone looking for a diagnosis is to keep a log or journal of your symptoms. Write down every single thing - what time you go to bed, what time you fall asleep, how many times you wake up, how long you're actually asleep, everything you eat, specific area your pain is at and how intense the pain is, if you run a fever, I mean every single symptom you expierence that day, and how severe it is. (Maybe rate it on a scale of 1-5)Keep that log for as long as you can before you have your appointment, that thorough history will help a good doctor spot Fibromyalgia from a mile away. But also, if it doesn't fit the Fibromyalgia pattern, it will give enough good information to figure out what else is going on in your body. It's usually better to not go in there saying "I think I have Fibro". Rather, go in with your very thorough journal and history, so the doctor can fit all the pieces of the puzzle together for themselves. The treating specialist for Fibro is a rheumatologist. The best way to find a good one is by word of mouth. A good way to do that is to look for a Fibro support group in your area, and ask the members who their doctor is. Also, if you check out the Fibromyalgia FAQ in this forum, there are a few links to "Doc Finder" services. Those will help you find a rheumatologist in your area.I sure hope this has helped some. I am very sorry for taking so long to get back to you! Thanks Angie, for bumping this up so I saw it!!Kasey, please keep us posted on how you're doing!


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## kasey0505 (May 16, 2007)

*Angie and M&M - thanks so much for your replies.I have been keeping a log of symptoms and frequency, but not the level of detail you suggested. I need to start doing that.I found a rheumatologist that my co-workers friend loves and has been going to for several years. I went for my first appointment last week. I liked her. She was very thorough. And as M&M suggested I did not suggest fibro, let her do her evaluation. She said she does not know what it is and is running blood tests; she suspects an auto-immune disorder. After that I asked if she though fibro and she said no because I did not have any pain in the pressure points.I go back next week for the results of the blood tests. We'll see what she says. I just hope I get something other than "everything" is normal. Oh - and on a side note - I am currently dealing with Epstein Barr virus as well. I forgot to mention that in my previous post!So thanks again for your replies, I'll let you know how my bloodwork comes back! (If that's ok - I know this is a fibro board!







)Kelly*


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## M&M (Jan 20, 2002)

Yes, please let us know how your labwork comes back! It sounds as though you might be on your way to a diagnosis! I sure hope so.I'm really glad you've gotten in to see the rheumy, and I hope the blood work will shed more light on what you're dealing with!


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## kasey0505 (May 16, 2007)

*Hello - Yesterday was my follow-up with the rheumy. All the bloodwork was normal, no auto-immune disorders. She suspects it's "non-specific spondyloarthropathy"...That's a new one to me! Checking it out on the web. She believes it could be related to the ulcerative colitis.Next step is she want me to come back in a month for some follow-up bloodwork, or if I have an acute episode to come in while I'm symptomatic. So we'll see. Kelly*


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## M&M (Jan 20, 2002)

Wow, that's a new one to me too! Never heard of it. What a name!!! Very interesting. What have you found out about it in your research? I'm very interested to learn about it!Any treatment options? Or is it just a matter of waiting until the next episode, and trying to treat it then?On the one hand, I'm glad the bloodwork was normal, but on the other hand, it would have been nice to have something specific show up. I sure hope they spondyloarthropathy isn't something that's awful, and hard to treat!Keep us posted!


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