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  #21  
Unread 05-19-2004, 03:14 AM
fibromyalgia

I am still a LIW and have had fibromyalgia for the last 20 years this month. Fibro is an autoimmune disease of unknown origin. Its major symptoms are pain, fatigue,brain fog, and allergies. The list of all symptoms, which differ from person to person, is VERY long. The meds which have helped me the most are Zoloft (it helps to raise the pain threshhold), Flexeril, and Vicoprofen. If any doctor tells you to learn to live with it, get another doctor. There is no reason to live with chronic pain in this day and age. My Internist has helped me more than any other type of doctor, including rheumatologists. Do research. Most people with fibro have potassium and magnesium deficiencies. Vitamin C also helps. Stretching exercises (gentle ones) are a real lifesaver. Most of all, don't give up! You will learn more things that help and how to deal with it as time goes on. Each person is different. Wish I could help you more. Zing
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  #22  
Unread 05-20-2004, 02:11 PM
Fibromyalgia

I've had CFIDS and FM for over 25 years and my experience is different than what some of the women here have posted. I was bedridden for years and gradually became better. Better really means learning to cope, to me. I have never had a remission and have never found a treatment that works. Anything that helps me feel centred and empowered is what helps me the best, as then I can cope with all things better. I stopped looking for a magic answer a long time ago, and I no longer am upset when people tell me I don't look sick. I make an effort not to look sick. I have no need to convince anyone that I am. The most important lesson I have learned is that everyone must live within their own limitations. I'm no different than anyone else in that respect. Who is to say that my limitations are worse than someone else's? Realizing that has been very freeing for me. I'm playing the cards I was dealt and I'm not regreftul. This life is full and rich and I've learned a lot being chronically ill. Not to say I'd rather not be, but I really have learned a lot. I like who I am and chronic illness and pain have played a big part in making me who I am.
  #23  
Unread 05-20-2004, 03:38 PM
Been there

I have had fibro and chronic fatigue for 17 years. I have been to Dr. after Dr. I have taken pill after pill. I have tried diet after diet.
Have been through physical therapy.

FOR ME, nothing helps much. I do believe that massage is great but cannot afford it. I take narcotic pain medicine so I can work. I have had to take low paying jobs in order not to have severe stress and long hours as I can't handle that anymore.
Low carb eating does seem to help but just a little bit. There are several diets I have tried, cutting out certain foods, even one so strick you could eat nothing out of a can. I stayed on some as long as one year with no improvement.
While pain medicine takes the edge off and allows me to work, I am still in pain. Most days I can deal with it. The worst for me is total exhaustion. I work, do laundry, groceries and clean what I can of the house. That's about it. I push myself to attend family events on holidays but that's about all I manage.

Some people do very well in getting better. Some people have good luck with certain medications or diets or excercise. Just like hysterectomies, fibro patients are all different and what helps one doesn't always help the other.
Although I cannot get my hopes up too high, I still hope that someday I will get better.

My mom who also has fibro got a good amount of energy back after going through natural menopause with no hormone medications. I just had a total hysterectomy and am on hormones. I still hope that some of my energy comes back.

I am unable to do strenuous exercise but I do stretching and luckily can walk.

This is a tough illness. It is hard to accept. Don't ever give up trying to feel better but it may take time to find what helps you.
I wish you the best.
Sharon
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  #24  
Unread 08-06-2004, 06:20 AM
I'm back....

ok ladies....my rhymmy did put me on Topamax, and I am doing better...100mgs in the am and 100mgs in the pm, had to work my way to that dose. it was rough getting there, but I made it!!!! Also, I say some doctors here at fort Stewart, and got a profile, that states I can do "special" physical training in the mornings, so I can now go to the gym and go to the....ready for this.......POOL!!!!! WOOOPPPPIIIIEEEE!!!!!!! Finaly!!! The water enables me to move my body almost effortlessly...and it feels pretty darn good. I am thankful, that they finally saw how miserable me and my body was. If I could, I would suggest everybody, if they could, try to get into a pool, and just swish youself around, and you will see, little by little, day by day, you will be able to move more and more. It is great. Just to bad it is not heated, but it is indoors, and no kids allowed, the kids get the outdoors pool. Now I am looking at the Marshall Protocal I want to try that out. My Rhummy is backing me 100%, in helping me try it. If you guys want to look it is at www.marshallprotocal.com he is a doctor, and he suggests eliminating all viti D ( for a few months) and taking some antibiotics, and believes this procedure will work for fibro. I am going to try it. Check it out ladies...
Bj
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