I was diagnosed with Eosinophilia-myalgia Syndrome in late 1989 but got the first ...
I was diagnosed with EMS in late 1989 but got the first symptoms in late July and early August 1989. I live in the Washington, D.C., are of the USA. I like this feature of this web site where persons can comment. Since I once served on the national organization for EMS in America, I learned a great deal about EMS and what helps etc. It's true that steroids do not help all. In the beginning they often were useful to bring down the eosinophil count faster, but they didn't really stop some of the nasty effects of the disease. Steroids did save lives in those who had very high counts at onset. Some persons still use steroids although complications from usage are showing up at this point now some 16 or 17 years later.
Magnesium supplementation has been shown to help many with EMS cramping and muscle pain. This can be done via ingestion of pills, a certain regimen (protocol) of injections developed by Daniel Clauw MD now of Univ of Michigan School of Medicine, or occasionally by IVs. Calcium can be used as well. I use over the counter pills with calcium and magnesium in the proper ratio, about 2:1 calcium to magnesium, and I use 2 pills a day of my supplement. Foods high in magnesium are good.
Massage therapy is one thing that has been shown to help a great number of patients with EMS. Physical therapy does not seem to help as many unless there is a specific target area.
Fibromyalgia or other conditions can develop secondary to EMS and some of mine are: FM, a TMD (not TMJ) condition of jaws/face, dental problems (diverse), sclerodermatous skin and others. EMS is for me a very disabling condition and I had to stop work in 1995 and went on disability in 1997. I am 55 years now - spring 2005.
Many with EMS require a number of drugs to treat the various symptoms or results of the disease including drugs for bone loss due to using steroids, GERD medications because of stomach and esophagus problems, headache medications as some have very bad headaches, antidepressants in lower dosages for sleep, depression, anxiety, etc; pain medications ranging from over the counter for those with milder pain to very strong meds (multiple) in cases for those with severe pain. Muscle cramps continue in most but not as pronounced as at the start. As I said, magnesium helps these, as well as using sensible home remedies like ice or self-massage, or heating pads.
It's very important to keep up with regular blood tests and other tests as needed for patients with EMS to stay on top of any developments.
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