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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.


[i:b03a3288ad]This message was automatically imported from the original Patient Experience[/i:b03a3288ad]

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  • Guest Guest

    I am experiencing much of what you were talking about in your articile. i am experiencing the joint pain, also itis in my back, my left lower abdomen. I had to stop working 2 years ago, and I have applied for disability, they denied me and said due to my age ane my education, I needed to go back to work. I worked as a nurse ofr 26 years. I couldn't pull the med carts, nor lift the patients, I would come home doubled up in pain. My supervisor wouldn't find something else for me to do. May I ask how you got your disability? I'm 52, will be 53 in a couple of weeks. I look forward to hearing from you. Sam Akehurst

    [i:4233a6a359]This message was automatically imported from the original Patient Experience[/i:4233a6a359]

  • Guest Guest

    Hi Sam,

    I'm sorry to learn you are having such problems. I guess you are in the UK, though I'm not sure. I have no idea how one gets disability there. I got what is called social security disability based on the number of quarters I've worked in my lifetime and one also has to have a certain no. in the past 10 years, I think, to qualify. I tried to get it on my own at first before 1996, but got turned down and just kept on working until I could not. Then I decided to hire a lawyer who deals in disability cases for social security and that was the key for me. The lawyer helped with everything (forms etc) and made sure that my doctors were well-versed in what was expected of them in their comments if they were going to be "cooperative" and my doctors did plan to say I was disabled and could not work. So a good lawyer can help a lot in America. If you don't win here, the lawyer gets no fee and you only owe costs of things like faxing, copying, etc. That does not amount to that much. If you win, they get 25% of your lump sum initial payment which is worked out on some formula; after that you get a monthly check based on your earnings and whatever else. I first worked and paid into social security when I was 16 years old and I worked until 1995, so I had worked off and on, even during college years, for almost 30 years. I don't have any other advice, not knowing if you are English or what. But that is how it works here for getting SS disability. I'm not talking about disability pay an employer might give you. I was self-employed, anyhow, as a piano instructor.

    [i:82926b6fc3]This message was automatically imported from the original Patient Experience[/i:82926b6fc3]

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