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My GuestbookFibromyalgia Syndrome
what is fibromyalgia? my personal story treatments I've tried current treatment other people's stories helpful links
Fibromyalgia, sometimes called fibrositis, is a common condition that is associated with widespread aching, stiffness and fatigue, and originates in muscles and soft tissues. People with fibromyalgia are found to have multiple tender points in specific muscle areas.
Most individuals complain of aching and stiffness in areas around the neck, shoulders, upper back, lower back and hip areas. Many patients have no underlying disorders while others who develop fibromyalgia may have conditions such as rheumatoid arthritis, spinal arthritis or Lyme disease.
Some people have symptoms of irritable bowel syndrome, tension headaches and numbness or tingling of the extremities.
I was first diagnosed with Fibromyalgia (then still named Fibrositis) about 19 years ago. I was having terrible headaches, which made me nauseous and dizzy and unable to function. I also had all over body achiness and severe fatigue.
After cat scans, MRI's and other tests came back negative, my doctor sent me to a neurologist. He did an EMG (Electromyogram), to check the function of my muscles and nerves. And then he pushed on specific points on my body, making me jump with pain.
His diagnosis (and I guess, from stories I've heard since, I was lucky that he made one) was fibrositis. However, he told me, I would have to learn to live and cope with the pain, as there was no treatment he could offer me.
Since then, I have tried a lot of things, everything I read might help, basically, with the exception of questionable products, of course.
Just about every year, I'd get one or two major flare ups and I would be laid up in bed for a long time (usually 8 weeks, as that was the maximum time my job would permit me to take leave). After that time, I'd force myself to go back to work, coming home exhausted and in pain.
Some "alternative" treatments I've tried over the years are:
Exercise (very helpful)
Deep tissue massage (very helpful)
Shiatsu massage (very helpful)
Different sleeping aids (Valerian, Melatonin, even Sominex)- somewhat helpful
Chiropractic care (helpful, but not enough to justify cost)
Physical Therapy (helpful, but always a limited treatment time)
Acupuncture (somewhat helpful, but uncomfortably painful)
Sam-E supplement (no noticeable difference)
MSM supplement (no noticeable difference)
gluten free diet (no noticeable difference)
These days, I have a relative handle on my "disease". Three and a half years ago, I read that exercise helps a lot of Fibromyalgia patients.
At the time, I was 60 pounds overweight (had just found out about and started receiving treatment for an underactive thyroid) and I was having a lot of problems with pain and fatigue. I felt physically incapable to even start exercising.
However, I also read about deep tissue or Shiatsu massage making a difference. So, despite the fact I abhor massages, I started seeing an acupunturist, who also did Shiatsu massages. The combination of the electric stimulation of my muscles and the massage, made me well enough to start exercising.
I got a gym membership with child care for my youngest and started slowly (20 mins a day and some weightlifting) building up an exercise program. After a month or so, I hired a personal trainer, who was familiar with fibromyalgia and had several overweight clients. Yes, it was expensive, but after all the useless money I'd spent on products that didn't work, this was one that did and that I've stuck with ever since.
As seen on my before and after page, I lost all the weight and was able to function much better, with a lot less pain and more energy.
Today, I do a cardio workout every day and lift weights at least 3 times a week, as well as stretch exercises every day.
Besides that, I get a weekly deep tissue massage, which helps much in loosening the trigger points.
This past year, my sleep problems (waking up in the middle of the night and not able to get back to sleep) became much worse, as did the flare ups, especially when bad weather approaches.
I saw a rheumatologist about these problems. She put me on 50mg Trazadone for the sleep problems, but otherwise told me I was doing the best I could do for my condition.
I still experience flare ups, some worse than others, and it remains a difficult disease to live with. The fatigue and pain can make me feel totally out of it. And there is still little understanding from others, to whom I look the picture of health.
I would like to end by asking those who know someone with Fibromyalgia or Chronic Fatigue Syndrome, to please take them seriously, offer help and be patient with them. It is hard for them to be honest and ask for help. They are not whining, believe me!
To those who suffer from one of these syndromes, much research is being done. Try different therapies and use what works for you. One day, there will be a cure!
Tips for busy Fibromyalgia sufferers
Meanwhile, I've worked hard to be able to function as the mom of 3 with a frequently traveling husband, even during a flare up. Among things that have helped me:
The crockpot! Cooking is one of the hardest things for me to do in the evening. A crockpot meal can be prepared early in the day and is healthy and tasty. Find easy crockpot recipes here.
Home delivery of groceries. Companies depend on your area, but Peapod and Netgrocer are two companies I've used.
Currently, I am lucky enough to have a house cleaning service. When I didn't, I made a schedule of which chores to do on which day.
For help organizing and decluttering my house, done during "better" days, but important to reduce stress during the worse days, I turned to FlyLady's email list
I do laundry every day or every other day. That way, I have to do just a little, much easier to manage when feeling badly.
Michelle's story
Jeanne's experiences
The National (USA) Fibromyalgia Association
The American College of Rheumatology's FMS fact sheet
Fibrohugs, Fibromyalgia support site
MSN's Fibromyalgia Help support group
Arthritis foundation on FMS and CFS
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