Welcome to the Fybromyalgia info section.
Here are a few considerations.... if you know me, or know someone else with FMS, please read this all.
With grateful thanks to you, the reader, who wishes to be informed.
What is Fybromyalgia?
FMS is a chronic illness. Not just a form of muscular rheumatism, it's actually a neurotransmitter dysfunction. (Neurotransmitters are what the brain uses to tell the body what to do) We think 4% or more of all people have FMS.
One symptom is a type of dysfunctional sleep called the alpha delta sleep anomaly. As soon as people with FMS reach the deep level sleep, alpha brain waves intrude and jolt them back to shallow sleep. Not only are they denied refreshing sleep, but delta level is when the body does its repair work, and chemical replenishment.
If people with FMS are immobile at any time, such as during travel, or sitting in a meeting, their muscles get rigid and painful. Morning stiffness can be severe.
FMS symptoms fluctuate from hour to hour and day to day, and often worsen with changes in barometric pressure. It's no wonder that FMS is one of the most mis-diagnosed illnesses. Doctors often refer FMS patients to psychologists or psychiatrists, and yet recent studies show that psychologically, FMS patients have about the same amount of abnormal psychology as Rheumatoid Arthritis patients.
An editorial in the Journal of the American Medical Association in 1987 stated that "FMS, a disease which may have occupied five minutes of time in medical school really exists and is a major cause of morbidity and disability." People with FMS have a history of being misunderstood and doubted. Research is showing that people with FMS have defects in the neuroregulatory system, especially the neurotransmitters. They have low growth hormone, which is involved with muscle repair.
Some researchers think that the key problem is a CNS abnormality upstream of the spinal cord. The FMS body is an engine idling at 35% power, rather than a normal 5%. Most FMS patients have memory and cognitive impairments. In FMS there is an abnormal production of neurotransmitters such as serotonin, melatonin, norepinephrine, dopamine, and other chemicals which help control pain, mood, sleep and the immune system. It looks like there is a genetic predisposition. Often there has been a trigger event, such as an accident.
An American College of Rheumatology study in 1992 found the the impact of FMS on your life is as bad, or worse , than Rheumatoid Arthritis. They listed one major factor in this as "clinician bias". FMS patients don't look sick, so they are often victimized by clinicians, family, and friends, leaving them with self doubt, guilt, and loss of self-esteem.
FMS patients have 3 times the normal amount of substance P in their spinal fluid. Substance P tells the body how much pain it feels. They also have more pain receptors. They are hypersensitive to everything .. sort of like the "Princess and the Pea" in nursery stories. Little things that others take for granted, like wringing out a wash cloth, or writing a letter, become pain endurance sessions. A comparative analysis in the Journal of Rheumatology this year found that the quality of life for women with FMS is worse than for those who have Rheumatoid Arthritis, osteroarthritis, chronic obstructive pulmonary disease, or insulin-dependent diabetes.
An Open Letter to All Who Do Not Have FMS
Having FMS means everything has changed, and a lot of these changes are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.
In the spirit of informing those who wish to understand .. These are the things that I would like you to understand about me before you judge me ..
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about my work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting the act of standing with "sitting", "walking", "thinking", "being sociable" and so on .. it applies to everything. That's what FMS does to you.
Please understand that FMS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes .. may frustrate me to tears, and is not correct .. if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too .. you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.