Tom’s Story

“Tom’s”  Story

This is a comforting concept to write our stories, in a way — because having ME means being misunderstood.

Just to keep it short, I was knocked out in a car accident at age 8. A few months later, I had muscle tremors, chronic fatigue, and other symptoms — like heart palpitations — that increased with age. I was misdiagnosed by each medical specialist that I visited. And being male, I have been told that I have a “woman’s disease.”

I finally got a diagnosis of fibromyalgia by various rheumatologists in 2000 which is over 20 years after my accident. The first rheumatologist tried to sell me a book he wrote (which he actually copied from a book called The Artist’s Way). Various health food stores always have some kind of elixir, vitamin supplement or product to sell to me (none of which do much — I call these people “placebo pushers”).

Having ME turns a patient into a marketing target. Furthermore, I had an appointment with a naturopathic doctor, at a leading naturopathic college in Canada (in Don Mills, Ont.). After wasting my time and Dollars with a blood test and earnest check-up, I was told to “take a cold shower” by the supervising “doctor.”

I am too sick to work. I had a successful fashion design biz, doing my sales/promo/press in New York City.  Now, I can barely get any understanding from my mates and family — because I don’t look sick.

Thus fibromyalgia is insidious and destructive both due to the physical harm, and the psychological.

ANON from Toronto

 

One Response to Tom’s Story

  1. Hello Tom:
    I am so sorry to read that it took you so long to be diagnosed. That doctor who called it a woman’s disease is way out of touch. I know as many men as women who are ill with FM. Any kind of traumatic event can trigger either both or one of the illnesses.

    I have ME/CFS myself and I would say now, after having been ill since 1986, I can more or less function pretty well. With me what I needed to do is keep a diary for about two weeks to see how long I can go before I reach the total exhaustion point. For me now it is 2 2 1/2 hours. That means I go and do something mental or physical at the most two hours and then rest. I alternate between mental and physical using the 2 hours as a base.

    I don’t know if you know your limit but it might be worth finding out so you know what you have to work with. Do the same with food. Note how you feel before you eat and how you feel after you eat. If you feel good then continue with that particular food. If it makes you feel unwell, remove it from your menu for about 3 months before reintroducing it.

    Take care, Tom, and look after yourself. I know it is difficult when no one believes you but unless you have been in our shoes, there is no way to understand this illness if you don’t have it.

    Lydia

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