Most of us know the limited mobility and pain that comes from straining or spraining a muscle. For a few days, it’s really hard to get around and live your life, isn’t it? Imagine living with this type of pain every single day. Hard to do, don’t you think? People with fibromyalgia don’t think so – they have to live in constant, unremitting pain every day of their lives.
Most of us know what it’s like to be really tired, too; we’ve all worked out in the yard too long, or overdone the sports, or did one too many reps in the gym.
We know what fatigue is, right? Wrong. When you have ME/CFS, you learn what bone-crushing fatigue really means. When you overstress yourself, sleep repairs the damage and you wake up refreshed and raring to go. When you have ME/CFS, sleep gives you no relief from the fatigue, and you wake up just as tired as when you went to bed.
Living with these chronic diseases creates a problem with the quality of life for those suffering from them.
ME/CFS, myalgic encephalopathy/chronic fatigue syndrome, is a disease first given attention in the 1980s. It was thought to be a psychosomatic disorder, meaning it was all in the heads of the people who had it, and it was unkindly dubbed the ‘yuppie flu’ by the media. ME/CFS is not a psychiatric disorder, although there are psychiatric components to it. It is a real, medical condition, although it’s hard to diagnose.
Like autism, also thought to be a psychiatric condition at one point, ME/CFS is a diagnosis of elimination. There are no blood markers indicating ME/CFS, so no blood test is going to tell you if you have it.
Doctors will give you blood tests, to eliminate the other diseases ME/CFS mimics. Once a doctor has eliminated all the diseases you might have with your symptoms, a diagnosis of ME/CFS results.
Fibromyalgia is listed in the medical diagnosis books as a syndrome; meaning it has not been considered a real medical condition up until now. Fibromyalgia in men and women know it’s as real as a heart attack, just not as quick. Fibromyalgia presents as constant, unremitting, pain over the patient’s entire body. Muscles are in constant spasm, resulting in inflammation and tenderness to the touch. These points are called trigger points, as the underlying spasm triggers a pain response when the muscle is touched.
Fibromyalgia has existed for decades, but has been passed off by doctors as psychosomatic; since the predominance of patients are female, and there were no tests for a disease available, physicians passed it off as an instance of female hysteria or hypochondria. There are specific points on the body that must result in pain before a diagnosis of fibromyalgia is given, but these testing points have not been known for very long.
What Do You Do If You Have ME/CFS or Fibromyalgia?
Until recently, all you could do was live with it. To a large extent, that’s all you can still do. There is only one FDA-approved pharmaceutical for the treatment of fibromyalgia, and the side effects are worse than the disease.
There are two treatments for ME/CFS, but they are not drug therapies; cognitive behavioral therapy helps ME/CFS patients find ways to cope with the condition, and graded exercise therapy is a form of physical therapy used to help patients deal with the physical effects. Graded exercise therapy has not been found to be effective in severe cases of ME/CFS, and unless the therapy is tailored to the patient’s symptoms, it has been found to exacerbate the condition.
The technique of pacing has been found to be helpful to ME/CFS patients, as over-exertion may bring on a relapse. Treatment for topical joint pain relief comes from the alternative medical world; supplements have been found to reduce muscle spasms and pain, and therapies such as acupuncture and mind-body relaxation have proven effective. There is one aspect of fibromyalgia where pharmaceuticals can help: the alpha-delta sleep disturbance.
In fibromyalgia patients, alpha waves intrude into the delta wave sleep cycle, preventing deep, restful sleep. Tri-cyclic anti-depressants can break this cycle, so it may be helpful to see an allopathic rheumatologist for a prescription. You can also try the alternative therapy of St. John’s Wort. St. John’s Wort has been used for centuries as a mild anti-depressant, and it may be effective for this aspect of fibromyalgia.
The best thing you can do to live with your chronic disease is to maintain a positive attitude and get out and live your life in spite of your condition. It’s not an easy thing to do, but it will lift the quality of your life enormously.
ME/CFS and fibromyalgia patients tend to wind up living solitary lives, homebound with limited interactions with others. This leads to depression, which patients already tend to have, due to serotonin depletion by their disease.
Taking your condition into consideration, get out into the world and live as much as you possibly can. You’ll be better for it in the long run