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Fibromyalgia

 

As a newly diagnosed patient with this disease many of you have sent me articles on the subject and the FF members who have this disease sometimes spend time trying to help each other, and many of you have sent articles to me.

For those interested ,please go do a search or ask anyone of us where to read up on this disease. It is even more complicated than what I have done here.

Without meaning to over-simplify the definitions, I can tell you I have told doctors and friends that I cannot imagine cancer patients hurting any worse. And I would opt out if I thought I would have to deal with this kind of pain with never any relief. For now I have gotten some medicine and I am trying to learn to adjust my life style to make it more bearable.

As of Oct. 2000 I am no longer able to work. This was originally written Spring 1999.

For fibro folks it's always a question of when we will have to leave our jobs or lose it because our co-workers can no longer deal with our being missing from our jobs.

No day is ever pain free. I am a positive person. But it is hard to be positive when I wake up aching and wondering if this is the day that I won't be able to walk or concentrate or care 
about anything.

My description of this pain to maybe help those who cannot comprehend it is this:

If you get the flu you ache really bad a day or two. When this aching starts it does not go away in a day or two, and magnify that pain 10-20 times or more and it can be that forceful and that pain magnification can change many times in the course of a single day, and we all deal with it for days on end. EVERY day!

God Bless you all, this is one article that Penny Andrea Einmo sent me. There are many more from Linda Fritz, Linda Bennett, Judi Grant, Charlotte Guthrie, and other friends if you are interested. 

Hugs Auds

If you are a member of Forever Friends 5 you can go here to sign up and get support from the 30 plus members who also have fibro or other debilitating health conditions.

If you would like to join us, you do NOT have to be an FF member to join this mini-list:

Go here: http://foreverfriends50.tripod.com/FFfibro.html , scroll down to where it says "Subscribe" and that will get you to Yahoogroups to sign up.


 

Fibromyalgia and its sister myofascial pain syndrome is characterized by several things: muscle pain, depressive symptoms, impairment of daily activities, interrupted sleep patterns.

In many cases, fibromyalgia evolves into muscle pain that is unrelenting and a devastating life experience.  The existence of fibromyalgia has been debated for many years, but its existence cannot be denied.

The fibromyalgia sufferer has several challenges: to improve their quality of life, to better understand why they hurt,  and to help loved ones (and, yes, even their physicians) understand their symptoms and suffering.

Fibromyalgia often overlaps with other diseases and it's more than less of a syndrome. We name syndromes in medicine to associate more than one problem to a specific diagnosis.

Fibromyalgia is a diagnosis. Although much maligned and criticized, the official definition from the Copenhagen Declaration of 1993 established fibromyalgia as a disease entity.


 
 

Fibromyalgia is primarily pain, but as anybody that suffers from this disease knows, there is so much more.  Fatigue, poor restorative sleep, headaches, irritable bowel, frequent pelvic and bladder pain, and migraine headaches. Although not the classically predominant symptoms of fibromyalgia, I refer to these as the Fibro-5: headache, chronic fatigue, irritable bowel, and pelvic pain (or interstitial cystitis). These problems are devastating, and truly alter the life experience.  This is the fibromyalgia syndrome. Pain and the helplessness of marginal relief and, more often, disbelief.

The American College of Rheumatology (ACR) in 1990 explained the "presence of unexplained wide-spread pain or aching, persistent fatigue, generalized morning stiffness, poor restorative sleep, and tender points".   The ACR defined 11 tender points that had a consistent statistical relationship to patients presenting with this syndrome in the rheumatology clinic. We now believe that abnormal pain processing mechanisms are at the root of fibromyalgia.  Fibromyalgia sufferers have a low pain threshold and a high discrimination of pain.

For well over 10 years this disease has been recognized in the world literature. Unfortunately, a very small number of practitioners are experts in the field, and little training in medical schools and residency programs teach important treatment options to improve quality of life.  In 1987, the American Medical Association legitimized fibromyalgia syndrome by recognizing it as a disease state.

Fibromyalgia is called many different names. This leads to further confusion. Fibrositis, myofascial pain, myofascial pain syndrome, psychogenic rheumatism, fibromyositis, myofascitis, tensionmyalgia, psychological muscle disorder, and muscular fatigue syndrome are terms that have been associated with fibromyalgia.

Only recently are the terms fibromyalgia and Myofascial Pain Syndrome settling as the most acceptable in our understanding of definitions. Fibromyalgia syndrome is the most useful term due to the many associated symptoms found with this disorder.

Obviously, fibromyalgia is not a new disease and has been described for well over 100 years. For example, a man named Gowers, era 1904, used the term Fibrositis when describing back pain or "lumbago". This is an example of concomitant fibromyalgia. Fibromyalgia with another disease.  It has been my experience that most fibromyalgia has an underlying concomitant problem, most commonly, back pain. In the 1960's, the term Fibrositis evolved  into generalized musculoskeletal aching, poor restorative sleep, chronic  fatigue and multiple tender areas of pain.  M. B.Yunus moved this disease  forward by associating demographic features such as age, sex, and race to well-designed studies that truly helped validate this disease in the medical literature.

Fibromyalgia has been broken down into different categories. Regional fibromyalgia, or myofascial pain syndrome, which limit tender points to a few locations only. Primary fibromyalgia is most common.  Primary fibromyalgia is widespread pain and aching in most of
the tender points, but in reality, is "pain everywhere". Secondary fibromyalgia is activated by an associated symptom, such as back pain, rheumatoid arthritis, hypothyroidism, or trauma, to name a few.  Finally, concomitant fibromyalgia refers to fibromyalgia intermingling with another unrelated disease. It's useful to think of concomitant fibromyalgia and primary fibromyalgia as really the same problem.  Concomitant fibromyalgia just has a medical condition associated with it.

What we find with Fibromyalgia Syndrome

The Copenhagen definition of fibromyalgia syndrome is outdated. Although a  good original attempt to standardize fibromyalgia, simply stating 11 of 18 specific tender points necessary for diagnosis is not helpful in clinical practice. In reality, fibromyalgia is pain all over, a process of increased activity in the nervous system that turns up the pain amplifier.  Really, the most predominant symptoms of fibromyalgia are just generalized pain, stiffness, joint pain, poor restorative sleep and fatigue. Many patients also say that they feel bloated or have multiple swelling points, and are anxious to point to new areas where they are "swolled up". Well over 50% of fibromyalgia sufferers complain of back pain.  Another very common complaint is chest pain. Cardiac disease must be ruled out, of course, but most chest pain is related to fibromyalgia itself.

Tingling and funny sensations in the hands, feet and extremities are also very common, as is a numbness sensation in the extremities.  Nerve studies are usually normal.


 
 

Fibromyalgia is cross-cultural, race, sex and age indiscriminate. Although claimed to be a disease of "white, bright" females, fibromyalgia can be diagnosed with any age, any race, sex and social status. Primarily it is a female disease of white race, but this may be due to sampling bias.  Age at on set is most notably between 30 and 50, but fibromyalgia patients will regularly relate to problems to early childhood. Irritable bowel, frequent headaches, fatigue and unexplained muscle pains were brushed off as "growing pains".

Symptoms of fibromyalgia are as variable as those describing them.  If we stick to the Fibro-5 as being the most useful to work from, the disease is a process of abnormal signals in the central nervous system.  Simply put, however,  fibromyalgia is a pain of multiple sites.  This is the first and foremost diagnostic criterion and the one most easily overlooked.  It's too simplistic to say there are 11 tender sites, or it must be on both sides, or that it can't possibly be present unless there are other associated problems like fatigue and poor sleep.  Fibromyalgia is "hurting all over" and a process of central sensitization. Other consistent and useful symptoms
include: swelling of tissues and joints, stiffness, tingling, anxiety and swollen points. Fibromyalgia is really an easy diagnosis. "I hurt all over, my gut hurts, I can't sleep well, I'm becoming more depressed and anxious, I'm losing control of my life, I have frequent headaches, and sometimes I have pelvic pain

Fibromyalgia is either mild or severe. Again, this may be simplistic, but if somebody tells me their lifestyle, activities of daily  living, and importantly, they feel they can't go to work because of these symptoms, I label this as severe. Loss of function can be independent of pain,

Pain is a description and not an entity. It is not a benign disease. Benign means that it has very little impact on life experience and is not life threatening. Dr. Jack Kavorkian has assisted suicide in fibromyalgia.  People contemplate suicide with this disease. It is not life-threatening by the classical definition, but don't say this to some of our fibro sufferers. This is not a harmless disease.

 

A Letter to Normal Folks

Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident , most people do not understand even a little about FMS/MSP 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 school, and 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 cant 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, your 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 for ten minutes doesn't necessarily mean that I can stand up for twenty minutes ,or an hour. And, just because I manage to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of disease you're either paralyzed, or you can move. With this one it gets more confusing. 

-Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.... it applies to everything. That's what FMS/MPS does to you. 

-Please understand that FMS/MPS is variable. It's quite possible (for me, its 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, it 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 I need a treadmill , or that I just need to loose (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/MPS 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/MPS 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 cant be put off of forgotten just because I'm out for the day (or whatever). 
FMS/MPS 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/MPS 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/MPS, 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 may 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 to help me with the shopping, cooking or cleaning. 

I may need you to take me to the doctor, or the physical therapist. I need you on different levels...you're my link to the outside world...if you don't come to visit me then I might not get to you . 

...and, as much as it's possible, I need you to understand me.

~Author Unknown~


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