As many of you already know, I am disabled. I have a muscular disorder called Fibromyalgia Syndrome. I've had this ailment for about 10 years now, but was only diagnoised 3 years ago. Here is a little information to help you understand it a bit better:
Fibromyalgia (fi-bro-my-AL-ja) syndrome (FMS) is a very common condition of widespread muscular pain and fatigue. Seven to ten million Americans suffer from FMS. It affects women much more than men in an approximate ratio of 20:1. It is seen in all age groups from young children through old age, although in most patients the problem begins during their 20s or 30s. Recent studies have shown that fibromyalgia syndrome occurs world wide and has no specific ethnic predisposition.
Fibromyalgia syndrome patients have widespread body pain which arises from their muscles. Some FMS patients feel their pain originates in their joints. Pain that emanates from the joints is called arthritis; extensive studies have shown FMS patients do not have arthritis. Although many fibromyalgia syndrome patients are aware of pain when they are resting, it is most noticeable when they use their muscles, particularly with repetitive activities. Their discomfort can be so severe it may significantly limit their ability to lead a full life. Patients can find themselves unable to work in their chosen professions and may have difficulty performing everyday tasks. As a consequence of muscle pain, many FMS patients severely limit their activities including exercise routines.
In addition to widespread pain, other common symptoms include a decreased sense of energy, disturbances of sleep, and varying degrees of anxiety and depression related to patients' changed physical status. Furthermore, certain other medical conditions are commonly associated with fibromyalgia, such as: Tension headaches, migraine, irritable bowel syndrome, irritable bladder syndrome, premenstrual tension syndrome, cold intolerance and restless leg syndrome. This combination of pain and multiple other symptoms often leads doctors to pursue an extensive course of investigations - which are nearly always normal.
Musculoskeletal pain and fatigue experienced by fibromyalgia syndrome patients is a chronic problem which tends to have a waxing and waning intensity. There is currently no generally accepted cure for this condition. According to recent research, most patients can expect to have this problem lifelong. Due to varying levels of pain and fatigue, there is an inevitable contraction of social, vocational and avocational activities which leads to a reduced quality of life. As with many chronic diseases, the extent to which patients succumb to the various effects of pain and fatigue are dependent upon numerous factors, in particular their psycho-social support, financial status, childhood experiences, sense of humor and determination to push on.
Most FMS patients quickly learn there are certain things they do on a daily basis that seem to make their pain problem worse. These actions usually involve the repetitive use of muscles or prolonged tensing of a muscle, such as the muscles of the upper back while looking at a computer screen. Careful detective work is required by the patient to note these associations and where possible to modify or eliminate them. Pacing of activities is important; it has been recommended patients use a stop watch that beeps every 20 minutes. Whatever they are doing at that time should be stopped and a minute should be taken to do something else. For instance, if they are sitting down, they should get up and walk around or vice versa. Patients who are involved in fairly vigorous manual occupations often need to have their work environment modified and may need to be retrained in a completely different job. Certain people are so severely affected, that consideration must be given to some form of monetary disability assistance. This decision requires careful consideration, as disability usually causes adverse financial consequences as well as a loss of self esteem. In general, doctors are reluctant to declare fibromyalgia patients disabled and most FMS applicants are automatically turned down by the Social Security Administration. However, each patient needs to be evaluated on an individual basis before any recommendations for or against disability are made.
Over the past 10 years there has been increasing recognition and interest in fibromyalgia syndrome. There are now over 1,000 publications in medical literature relating to this condition. The National Institutes of Health has recently recognized the importance of fibromyalgia as a cause of musculoskeletal pain and has set aside specific funding for research in this area.
I am, unfortunately, on the more severe end of the scale. Although exercise is a huge help to most FMS patients, I have been turned away by physical therapist on numerous occasions, because of the ill effects it has on me. My pain is widespread, but a majority of it is in my back and legs. I have difficulty walking, due to the leg pain and cramping. I have giving up driving, because I fear I can not hold the brake pedal at stoplights. I have also stopped working, as it was difficult for me to work a typical day without being in severe pain by days end.
It took me quite a long time to deal with my FMS and the effects it has had on my life. I used to love to go dancing, but I can no longer do it. I used to hold down a full time job, do volunteer work and I had a very active social life. I have had to alter my lifestyle, and that in itself was difficult to deal with.
I have, through the advise of my physician, elected to use a wheelchair outside of my home. It took me months to come to this decision, but the doctors words kept ringing in my head. He told me that if I had to give into using a wheelchair, in order to maintain some sort of active lifestyle, then it is a small price to pay. Before the decision to use a wheelchair, I couldn't do simple things like grocery shop without being in severe pain after walking down the first few isles. Now, with the chair, I am still able to take my daughters shopping for that special dress, enjoy an outting or a vacation with my family. It has allowed me to regain some of the independence that FMS has taken away.
I am not the typical FMS patient. Like I said before, I am at the severe end of the scale. Not all FMS patients have had to alter their lives as I have. I remain hopeful that someday, there will be a cure, someday I will have my active lifestyle back, and someday I will not have to worry about how FMS has changed things for myself or my family.
FMS Frequently Asked Questions
Co-Cure: Information Exchange for CFS and FMS
