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She's Back! A Woman Reclaims Her Life after Battling Fibromyalgia

  [ 1372 votes ]   [ 8 Comments ]
www.ProHealth.com • December 6, 1999


It was almost 10 years ago that Dana Shapiro, now 41, first noticed that something was wrong. It started with a feeling of light-headedness, then she noticed some dizziness and soon after felt that her memory was slipping. New symptoms emerged with alarming frequency. After about six years she was feeling tired nearly all the time and then the pain came--and it was everywhere from her head to her toes and especially bad in her hips. She remembers the pain as being so searing that it was often impossible to lift her leg over and into the tub to take a bath.

"The only way to describe it is that horrible feeling you have right before you come down with the flu," she says. "Only that feeling stays with you 24 hours a day, seven days a week."

Only slightly less devastating than her physical symptoms was the medical community's inability to figure out what was causing them. During a trip to Seattle one doctor dismissed her illness as a one-time panic attack. Back home in Florida, another physician tested Shapiro for allergies, and still another prescribed an anti-depressant before finally taking her aside to tell her that there was, in fact, nothing wrong with her. Countless MRIs, catscans, X-rays, and blood tests followed, until a day two years ago when Shapiro was sitting in the office of yet another new primary care physician. After she explained her symptoms, he recommended that she see a rheumatologist and be tested for fibromyalgia syndrome(FMS)-a dysfunction of the biochemical informational substances such as peptides, hormones and neurotransmitters. Among the common, wide-ranging symptoms of FMS are chronic fatigue, depression, insomnia and constant, widespread pain.

There are 18 specific tender points, or trigger points, on the body, which would likely be painful in the case of a positive diagnosis of FMS. Of the12 trigger points that Shapiro was tested for, 11 proved to be extremely painful. (FMS is not detectable by a blood test or X-ray.) Though the disease is incurable--the best hope is that the symptoms eventually wane in intensity - Shapiro found great comfort in the news. "I had thought I was losing my mind," she remembers. "So, I feel better knowing that at least I'm not going crazy."

FMS affects every age group, striking women at a ratio to men of 20 to one. Between 7 and 10 million Americans suffer from it--many of them without knowing. Though FMS is thought to be caused by trauma (Shapiro once broke both her back and her neck) or stress, or to be inherited, not a great deal is known about the disease or how to treat it. Shapiro's best nugget of advice on how to manage her illness came from a doctor who told her to keep trying things until she hit on something that worked. With that motto in mind, Shapiro sought out healing experts from acupuncturists to nutritionists before settling on a routine of strenuous exercise, a healthy diet, and plenty of supplements and vitamins.

The first component in her treatment regime - exercise -- came naturally. When Shapiro first became sick she had been doing such rigorous weight training that her percent of body fat had dropped to just 14. (An average women has 20 to 30 percent body fat, while a very fit woman might have a body fat percent in the low 20s.) Today, her path back to health includes twice weekly Tae Bo classes and twice weekly weight- training sessions. She also has a stairmaster at home, which she uses when she can't get to the gym, rollerblades, and never travels without her resistance bands. Her workouts last a minimum of an hour and a half and she tries to work out at least four days a week. "If I don't work out I start getting achy again after just a couple of days," she says. Still, as rigorous as her Tae Bo class is, Shapiro finds that FMS affects her breathing, leaving her winded as she walks up the three flights to her apartment.

Shapiro's dedication to good diet was a little harder to cultivate--she admits her eating habits were "bad" before she became sick. Today she tries to steer clear of all processed foods, opting instead for fresh fruits and vegetables, and chicken. She won't eat or drink anything with aspartame in it, such is diet sodas, because the artificial sweetener aggravates most FMS symptoms. She consumes five times the amount of protein she used to by drinking plenty of protein shakes. "I'm fairly good with it, because I know it makes me feel better," she says about her dietary habits. "If there's one thing I've learned from this it's that you have to listen to your body. I never used to do that -- I'd be thoroughly exhausted and I'd just make myself keep going."

Shapiro is a strong believer in cetyl myristoleate, a treatment that is typically taken one-time and often recommended for people who struggle with FMS or arthritis. Shapiro, for example, took six capsules per day over a 30 to 40 day period last winter. "It didn't work that quickly," she remembers. "But I had a lot more symptoms than other people and it took me awhile to realize that I wasn't in as much pain."'(She recently went back on it.) Shapiro also did a one time 30-day stint on NADH5, which can also be taken on a daily basis, to help stem memory loss and boost her energy level.

As part of her daily routine, Shapiro turns to twice daily doses of a mega multi vitamin, takes one gel cap of essential fatty acids and four tablets of spirulina twice daily to be sure she's getting her greens. Then there's calcium -- because "it can't hurt"-and malic acid/magnesium two or three times a day, which is highly recommended for FMS symptoms. Because her metabolism pretty much shut down in recent years, Shapiro uses thyroid starters. (Studies show that FMS patients suffer from hypothyroidism at a rate much higher than the general population.) Recently she began taking MSM to help with the arthritis symptoms and she takes St. John's Wort daily to keep the blues at bay.

"I make little pill packs and I don't go anywhere without them," she says. The final element in Shapiro's health regime is rest. She continues to set aside one day a week to sleep, finding that rejuvenates her not only from her disease, but also from her normal 12 -14 hour days away from the home. For the last two years she's served as a vice president for the Fort Lauderdale office of a mortgage company and is proud to note that "there hasn't been a day in a long time" when she's been too sick to go to work.

A hectic professional life is certainly a welcome change from the empty days of past years when Shapiro was far too ill to venture outside the home--unless it was to the doctor's office. "You kind of pull yourself out of society," she says. "You can't make plans because you never know what you're going to feel like, so you lose touch with people and your friends get tired of hearing you say how sick you are when you look fine."

Not only did Shapiro end up losing touch with most of her friends, but the constant medical tests and experiments with new treatments nearly broke her financially. As a result she hit rock bottom, both physically and emotionally, about two and a half years ago. "I was at a low point for about a year," she recalls. "But then I had to pull myself out of it. Your life has to change. You start from scratch again."

One thing that has helped Shapiro get past the trauma of the disease is the chance to help other FMS sufferers benefit from her experience. "If you're really sick and don't know what to do, you need someone to talk to who's been through the same thing," she says, adding that she doesn't mind if people call her with questions. She'd like to let them know that they too can reclaim their lives. "I'm not saying that I'm there yet, but I'm a lot better than I was," she says. "My life revolved around this disease for awhile--now, I actually have a life."

Source: This article was written by Twig Mowatt and republished with permission from the Life Extension Foundation. Dayna Shapiro can be reached by phone at 954-568-4960. Support and information inquiries regarding her personal experience with fibromyalgia are welcome.

Twig Mowatt




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Article Comments Post a Comment

Re: Shapiro
Posted by: RedHeadEMT
Dec 11, 2006
Although I'm happy to hear that Ms. Shapiro found a way to deal with her FMS, there was one thing that really bothered me about the article. Most doctors who treat FMS would agree with me when I say that heavy weight lifting and hard-core exercising for "an hour and a half" at least, daily, is not something most people with FMS can do. Most of the exercise that patients with FMS can do is along the lines of stretching, walking, Hatha Yoga, etc. To suggest that Ms. Shapiro's daily exercise regimen is something "normal" for a pt with FMS is sort of crazy! I'm lucky to be able to even walk for half an hour; whenever I even attempt to do weight lifting, I am rewarded with an agonizing flare-up that lasts from days to weeks. Just a thought... K
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Shapiro article
Posted by: rockymtnmom
Jun 18, 2007
I too found myself wondering how in the world I could achieve strenous exercise in the condition that I am in now with FMS/CFSID. I am happy that this regemin worked for her, however, I think it is somewhat unrealistic for those of us who are on the more severe end of the spectrum

 

 
lifting weights
Posted by: calm
Feb 9, 2008
Its very interesting to come here for the first time and read of people who know what I'm going through. I started lifting light weights a couple weeks ago and my pain went to its worst for the next week until I took my prescription anti-inflamatories. I am so wanting to create some strength in my pain stricten, weak body. I don't know if it was the light weights that caused this or not. It felt so great to start a routine but I don't think it will work. The walking may be the safest way to go...or swimming. I'm just thinking outloud. Searching between vitamins, greens, or what have you to help this disabiling syndrome. Thanks for the inputs provided.

Tammy

 


About your article
Posted by: dogz4life
Aug 28, 2007
I totally agree with RedHead. I have to force myself to walk. If I walk to much or do anything to strenous Im down for two days sometimes longer. Another thing is people talk about taking herbal supplements, vitamins etc..I dont know about the rest of you but Social Security keeps denying me so I have NO income. I cant afford to buy expensive supplements etc..Besides Fibro I do have two ad knees because if degenerative disease. If not for the morphine patch I would be bedridden all the time! Im glad this person was able to have a life, I just wonder how rare that is? When I try to meet men for example, they hear of my health issues they run the other way....Im thankful I do have a couple great friends that are good support but to say I have a life? No Way!
Reply Reply

 
Fibro
Posted by: fugyfank
Sep 7, 2007
I think that everybody's fibro is different. Mine sounds like it isn't as dibilitating as someone else, although I fight for my sleep which doesn't seem I get enough. Also my problem is primarily pain in legs. Now I have a new shooting pain going down my leg and my knee just kills me especially when I walk alot. What is this? Do any of you have this?

 


WOW!! Reclaiming your life. Big fan
Posted by: amatz1963
Apr 16, 2008
I remember back around around the fall of 2002, in a wet cold rainy dark day, I went to see a Dr. about my pain, and he was a speciality. That day changed my life forever. For years I have been dealing with different doctor's for different issues, such as pain in my feet, or hands, or back, or .... You get the picture. Also, my extreme fatigue, was horrendous!! I was diagnosed with FMS on that dark day! Had no idea what this was. Did alot of research, and found out alot of the answers to my pain, memory and fatigue. I remember being moved by you're comments on a web site. I kept it for years in my cardfile.exe, and happened to go through it this morning and tried to go to this website " http://go1.warp9ems.com/go.pl?tu=7340270-2616" which does not exist anymore. Did some searching and found this!! You continue to be an inspiration to me and my cause; getting better, and beating FMS!!! Don't listen to the negative, because there is sooo much of that out there. It can be depressing. I WANT people to tell me what they did to beat FMS, or at least stop it from getting worse. It is good for me. Wether it's weight training, which seems to help me as well, and cardiovascular exercise, it's all personal choices that helped!!
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