Loyal reader L.L. sent in a personal account of her painful experiences with the disorder Fibromyalgia. Not much is known about fibromyalgia, and most doctors tend to dismiss the disorder as psychological. But for the 2% of the population who suffer from fibromyalgia (mostly women), the pain they feel is very real.
According to the MayoClinic, fibromyalgia is a chronic condition characterized by dull pain in your muscles, ligaments and tendons. Fibromyalgia can also cause fatigue (feeling excessively tired), depression, anxiety and sleeplessness (insomnia). The symptoms usually begin after a traumatic event or injury.
Other conditions associated with fibromyalgia include:
- Chronic fatigue syndrome
- Irritable bowel syndrome (IBS)
- Post-traumatic stress disorder
- Restless legs syndrome
- Rheumatoid arthritis
Treatment includes pain medications, anti-depressants and anti-seizure meds. Most patients self-medicate with Motrin or Aleve until the pain drives them into the doctor's office. Physical therapy, counseling and lifestyle modification are also treatment options.
This has been your Medical Minute.
Read L.L.'s emotional email after the break (long read).
As always, any medical information published on this blog is not intended as a substitute for informed medical advice and you should not take any action before consulting with your personal physician or a health care provider.
I hope you’re doing well. I have talked about my health problems quite a bit in the comments and several people have been praying for me because of the severe back problem I have but I wanted to see if you would post a medical minute on fibromyalgia. I was diagnosed with it a couple months ago and it is a fairly new disease but is affecting many women and a lot of black women. I’d never heard of it until last year when a friend of mine received her diagnosis and to be honest I was so caught up in my own health issues that I didn’t even really think about her illness. Long story short, I came very very close to death a couple months ago and my body went into severe state of shock causing even more problems, one of which was my nervous system going out of wack and I now have this disease.
With my disability, I have a lot of time of my hands and I’m throwing everything I've got into trying to find a way to overcome this and move on with my life and raise my children so I’m doing the only thing I know how to do which is research nonstop (which is why I’m not posting as much). The more I learn, the more all of this is beginning to make sense and the more I have the urge to spread the word to other people so they can go get checked and treated if they have any of the symptoms and dr's have been unable to tell them why. You being a nurse with a blog I figured you would be a good person to contact.
In case you aren’t familiar, fibromyalgia is a chronic disease with no cure that causes such a variety of symptoms that it is often misdiagnosed and treated. It causes mild to severe pain all over, chronic fatigue, memory loss and concentration problems, menstrual problems, bowel and bladder problems,insomnia, the list goes on and on. So many things begin to fall apart and malfunction due to this disease which was discovered in the 90’s and sill isn’t fully accepted by the entire medical field as an actual disease.
My dr directed me to the Fibromyalgia network which has a website that was very helpful and I’ve been researching like crazy. Because of your medical experience I’d be curious to know your opinion. For a while I thought that this was a way for my dr to get more money out of me but the more I research and live with it the more I see that isn’t true. Plus she has already informed me that there is not a drug she could prescribe that would take this away or even greatly improve it. I have major major back problems but living with this on top of my other issues has been absolute hell. I'm pretty much tortured from the time I wake up to the time my medication knocks me out at night and nothing can help.
One thing that she said, which I found interesting, was that most drugs are tested on white and asian men. Each race has it’s own genetic makeup and structure and women and men have different hormone levels which means that a medication that is tested on a man but does fine may have a completely different effect on a woman and a drug that works well in Asian men may be dangerous to prescribe long term to a Black woman. The doctor’s treating me now believe that it was a adverse reaction to a bad combination of drugs prescribed by my previous doctor for the back pain which led to my hospitalization and near death but since there isn’t a way to prove it there won’t be a lovely monetary windfall to make being disabled for life worthwhile.
Anyway, please read this, maybe view the website I mentioned or any others you may know of and tell me what you think if you have time (I know you’re busy) or post this as a Medical Minute. Because of the range of symptoms that come with fibromyalgia many people are walking around miserable not knowing why. They finally found a combination of medication that alleviates some of the problems for me but no where near all of them unfortunately and that is just something I have to live with. I will say that I wouldn’t wish this on my worst enemy because it is truly hell on earth. I’m just shy of 30, raising 4 children alone (not on purpose, I know how you feel about that, my husband who is the father of them all and I separated.
This wasn’t planned at all) and now I get to deal with this. Maybe if there was more awareness, then the medical community will put more effort into researching a cure or at least treatment that will allow a person to live and function without misery. This is a disease that won’t kill you but causes so much pain, depression and a sense of helplessness that it could easily drive a sane person insane enough to kill themselves.
The drugs that are currently on the market to treat the symptoms, do not treat all symptoms and therefore must be used in combination of other drugs none of which can give a person a normal pain free life. They also are dangerous and have very serious side effects associated with them. One drug caused my eyesight to deteriorate so bad and fast to the point I couldn’t drive safely within a week of starting the drug and that was a mild side effect. The other sent me to the hospital for a week. Plus they are extremely expensive.