Ulcerative colitis for 10 yrs..just diagnosed with fibromyalgia

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cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 5/30/2009 10:04 AM (GMT -7)   
Hello everyone,

I am new to this forum, but not to healingwell. A few years back, when my colitis became severe and out of control I reached out to the UC forum and they helped me greatly. I tried Remicade and it seemed to help my flare and help heal my bowels. I slowly recovered some, but the depression and fatigue slowly crept up on me. I have always had some joint pain, but I thought it was the colitis and would take vicodin. I started some Masters courses about 8 months ago and was doing ok, but slowly strange symptoms started appearing. By the next quarter I went down to half time and was barely functioning. My son would wake me up (he is 3) and I could barely move or get out of bed, and would get angry with him because the fatigue was becoming disabling. I became worse rapidly and went to a psychiatrist (my therapist recommended I get on some sort of mood stabilizer) . I was forgetting everything and feeling so out of it and strange, I thought I had ADD bc of concentration issues. Started on Adderall and cymbalta. They seemed to help, but the adderall wearing off was terrible because I would just feel more tired later. Around this same time, I started having more and more rashes all over my face and upper body. I had been to a dermatologist about them in the last 6 months, where I was getting them about once a month. Then in the last few weeks, they were getting so severe and almost every day. The fatigue kept getting worse, and my GI sent me to a rheumatologist who diagnosed me with fibro and analyking s. sp? Had never heard of the second, and the first didn't surprise me, but I am overwhelmed..beyond belief.

I got off remicade because in the middle of all this madness, we had thought I might have drug induced lupus, so I got off the remicade. I don't have that but GI and other doc (and me) decided to get off to be on safe side.

I am scared and confused. My last colitis flare, after my sons birth landed me in the hospital, helpless. Took me almost 2 years to begin recovering. I don't know what to do about that, and now I have this new stuff...I have new meds, tramadol, lyrica, and tons of supplements..fish oil, probiotics, B complex plus C, ...cant remember what else off the top of my head. Oh, cymbalta and adderall...The tramadol is ...strange so far. I cant really tell if it is working. The cymbalta makes me tired, which I was counteracting with the adderall, but the rheumie said thats basically a no no...This rheum doc was great but really freaked me out, without meaning to. Maybe I needed to be...but basically said if I don't significantly change my lifestyle, and basically learn to relax...I am going to continue to go downhill fast.

Any suggestions on the med situation?

Thank you in advance

-overwhelmed in NJ


-oh and my "signature" needs to be updated----but too tired now
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99


donnaeil
Veteran Member


Date Joined Jun 2006
Total Posts : 1156
   Posted 5/30/2009 10:28 AM (GMT -7)   
Well, welcome. It is nice to meet you even though I would prefer that you not have fibromyalgia.

Your Rheumy has prescribed the medications that are used for people with fibro and the supplements make sense. If you are not taking vitamin D, I suggest you do. You can be tested for your levels via a blood test but most people, unless they are very fair in coloring, lack vitamin D. People who are in pain, no matter what their coloring, need supplementation also.

It is hard to care for a 3 year old when you are healthy, illness definitely makes it worse. Your doctor is correct when he says a drastic change in lifestyle is needed or you will feel worse. UC is a tough disease to fight, when it flares, so will your fibromyalgia. Ankylosing spondylitus is very painful in itself.

Water exercise can help both. If you do not swim there are shallow water exercises that will make you feel infinitely better. In addition, you should do some stretching daily. You can do it alongside your son. He will giggle and perform the same moves with you and eventually, take the work out seriously.

I hope you find ways to relax, go easy on the housework and use use whatever energy on yourself and your family.

Take care,

Donnaeil

Spicey
Regular Member


Date Joined Mar 2009
Total Posts : 135
   Posted 5/30/2009 11:58 AM (GMT -7)   
Welcome ! I'm kinda new here,since March. If your M.D. thinks anxiety is contributing to many of your health issues, maybe he should understand that often our health conditions can invoke anxiety. So, very often it's a catch22. Boy, doctors, we really need their skills, but if I only had a penny for every dumb thing a doctor has said to me, I'd have been retired years ago, laying on the beaches in the south pacific,sipping a cool iced tea ! What kind of rash do you get ? The rash I get bleeds like crazy, if I sctratch it. An irritating scab forms. I need a new Derm. doc. This one told me that I scratch at nothing and that I'm a picker. I suggested that he had better not write that info. on the insurance papers or he'd probably won't get his reimbursement ! I asked the receptionist on the way out if she could recommend a reputable second opinion.

cns25
Regular Member


Date Joined Mar 2006
Total Posts : 79
   Posted 5/31/2009 10:04 AM (GMT -7)   
thanks for the replies.

I forgot to mention that I have also been prescribed a stretching routine that I am supposed to do for an hour a day. 30 min in the am plus 30 min at night. It really does help. Plus it is making me work on my posture which I really need.

I have a couple questions for anybody that might know. Ever since the fibro symptoms started I have had mouth sores, plus a swollen tongue (in the back). It is painful and makes me not want to eat. Never had this problem before.

Also, I felt like I was going insane yesterday at the store. I had taken my meds as prescribed and somehow the combo of tramadol and lyrica...wow. Terrible. It felt like I was losing my mind....does anybody mix them? I am assuming they do.

Wish the adderall didn;t make me feel like these pain and joint issues get a thousand times worse. I feel like I am not 90 years old on them.

Thanks again for the responses,
candice

ps. now that i have fibro the only face wash i can use is cetaphil or this organic co Q 10 wash. I also use Eucarin sp? cream....I used to use all these great products. Oh well....:)
 
25 yrs, new mom to 16 mos baby boy
colazal
off the pred
remicade infusions
imuran 100mg
probiotic
welbutrin and weekly therapy:)
UC since 99

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