This is a copy of a post I made to the newsgroup alt.med.fibromyalgia on October 28, 2001. I posted it in a sort of response to a sudden flurry of posts by a bunch of people saying they all had been cured of Fibromyalgia.
I must be getting real crotchety and intolerant. Symptom of FM(?) or just old age 
?
Many of you are aware that I feel a lot of people are diagnosed with FM in error. Either by doctors who are not qualified to diagnose it ... or are too lazy or incompetent to do the intensive testing needed to rule out other possibilities. I know what I went through before being given a diagnosis of FM .... probably the same as most of you. Years of tests, specialists, specialty diets ... trying a constellation of medications and possible treatments, assessments and re-assessments, therapies and more tests and more specialists. For me it was over 6 years of almost constant x-rays, scans and graphs and diets ... specialists and therapists from every medical discipline ... before getting the first diagnosis of FM ... and then having it all continue for a couple more years after and having the same diagnosis 4 more times.
I know personally some people diagnosed with FM ... all in error in my book. But the docs won't dare admit they made a mistake. One had some symptoms of FM ... a number of months later had 2 ovarian cysts removed ... symptoms disappeared. Another had an FM diagnosis ... turned out to be sleep deprivation caused by sleep apnea. He went on a ventilator at night ... symptoms disappeared. Another was diagnosed years before me and I knew nothing about it until after I was diagnosed. She went through hell trying to find an effective treatment ... travelling to the US, Mexico and Europe to see specialists and try therapies ... all to no avail. A number of months ago someone suggested she try a gluten free diet ... she did ... found out her symptoms were caused by allergies to wheat, dairy and sugar. No symptoms anymore.
I know I am not well educated or really knowledgeable ... BUT ... wouldn't it be a logical assumption that if someone finds out that they have food allergies, or sleep apnea .... or whatever and treating it or going on a diet makes their symptoms disappear .... that they would KNOW they had been misdiagnosed to begin with??? Apparently not ... because we are constantly being bombarded by people who have the treatment or the cure for FM. And we are suppose to believe them because they had been diagnosed with FM ... but all their symptoms disappeared when they vented their negative emotions, took mega doses of calcium .... or gave themselves daily coffee enema's or whatever. I would think the coffee enemas would only help tired people who were full of sh*t.
It irks me ... and I truly feel sorry for those people who pop in here saying something like "my symptoms started in June and in July I was told I have FM". The only thing that comes to mind is that it is probably another misdiagnosis by a doctor who doesn't know enough ... and these sufferers are taking the docs word for it. And they will likely suffer with the symptoms, believing there is no effective treatment for months or years, until something happens that forces the docs to investigate further and actually find out what was causing the symptoms was not FM. But instead of admitting an error was made ... they will probably write a book about yet another "cure" for FM.
I wish everyone had access to a health system similar to (but better than) what we have in Canada. I know going to every kind of specialist, having endless tests and assessments to rule out any other possibility ... can financially break a person in a lot of countries. But I fear that not eliminating every other possible diagnosis can only lead to promoting the idea that FM is becoming a "garbage diagnosis". I am fortunate in that ... although I do not know what FM **really** is .... or what causes it .... I think I can categorically say I definitely know what it isn't and what doesn't cause it ... or at least what has not caused "my" FM.
It is argued that there are multiple causes of FM. It is also argued that what works for one does not necessarily work for another. I believe that in time it will be determined that there is a common cause ... and that there will be similar cures for those who truly have FM. I am hopeful that in the near future there will be some kind of test to determine if a person definitely has FM ... and then finally those people who do not have it can pressure their docs for an informed diagnosis of the real cause of their symptoms. Rightly or wrongly, I feel until a conclusive test can be done to verify a diagnosis of FM ... then there are going to be umpteen number of researchers using a bunch of test subjects who may or may not really have FM ... being led off into different areas of research totally unrelated to each other.
I seem to get more easily ticked off these days with this person and that person spouting they found the "cure for FM".
Gluten free diet works ... that means the person had food allergies ... not FM.
Mega Calcium doses ... would signify a person was deficient in calcium ... not have FM.
Venting repressed rage & anger ... to me that means the person was suffering from a psychological aberration ... not FM
Sleep deprivation ... although it can mimic FM symptoms ... it is not FM
And give me a break on the gender specific stuff .... Men and Women get FM. Rule out the socio-economic factors too ... I think we as a group represent a pretty good cross section of society.
Exercise ... that one is a tough one because we all know that it DOES help some people, but can make others worse. From observing this group and my own experience ... it seems the less severely affected do achieve much benefit from a regimen that includes regular exercise. But ... personally ... it really benefited me for 7 years but as I became more severely affected, exercise started to make it worse. I had always, all my life, done some form of regular exercise ... it was the (and I hesitate to use the word but there is no word that is better) progression of symptoms that limited my abilities .... not the lack of exercise causing the progression. I am a strong proponent of regular exercise & stretches. I credit them and regular massage therapy for helping to keep me able to work for the last 6 years I was able to.
Re-reading this ... it might sound like I don't think people should be posting about what they find helps them with their symptoms. Nothing could be further from the truth. Exchanging information, treatments that you find helps (or not) ... theories and hypothesis .... its important to share them all. Because if (and that's one big IF) my thoughts that there is a common cause and a fairly similar treatment will be found .... and that a large number of people are being misdiagnosed ... the information shared here could be (and has been) invaluable to all of us. I just obviously get rankled when people keep posting about "their cure".
If a gluten free diet works ... don't post in here that its a cure for FM. It isn't ... I tried it ... it doesn't help me. Instead ... post that you were misdiagnosed and found out you had food allergies. Then sue the ass off your doctor(s) for putting you through hell for so long.
If the acknowledgement of repressed anger and rage helps ... again don't post you found a cure for FM. Admit your symptoms were caused by suppressing those feelings and they manifested themselves with physical symptoms similar to FM ... but don't go spouting it cures FM. Share with everyone what you did and how it helped you ... because **maybe** there are others that were misdiagnosed but share the same root cause of their symptoms. I know it did not cause my FM ... a number of assessments by various doctors and institutions have verified that I am not suppressing anything ... rage, anger or anything else and there is no psychological cause for the physical or "brain" symptoms I experience. Just maybe an occasional rage against those who state they have a cure for FM when they obviously haven't. Why not admit the truth? After all ... what is a little psychological aberration among friends
All of us must be open to the possibility that we have been misdiagnosed. I know I am open to the idea. In fact I am hoping and praying that someday soon something will be found that had been previously missed ... although at this point I doubt there is anything known by medical science that I have not been tested for. Actually ... I would like one more test ... one of those thermal imaging things of the brain. Oh yeah ... and the money that would be needed to fund research into the possibility that what I have is being caused by an unknown intercellular virus or bacteria. Two of my own "pet possibilities" ... not shared by too many ... even here Last time I checked the thermal imaging things ... there were only 3 on the continent ... all in the US and the travel and test would not be covered by our medical coverage as they were all used only for research. The other ... although my docs admit that given when my symptoms started and their progression that I **may** have some kind of weird virus ... it is apparently non-life threatening and there is not "enough interest" to warrant the expenditure of funds on a "wild goose chase". Ohhhh ... do I wish I had Bill Gates' money now
I would like to one day be able to post here that after all this time, turns out I didn't have FM. I take these pills and all those symptoms just disappeared. But for now ... when some new theory on treatment comes along ... sure I will check it out and if it has merit (and I haven't already tried it) I will give it a go and hope for the best. Just don't tout it as a cure for FM ... unless it really is a cure for FM and not some other misdiagnosis labelled as FM by a doctor that should be sued for shoddy work.
Views are my own uneducated opinions and thoughts.
Take care
Peter
Addendum added March 5, 2004 - I received an email today from a lady who was newly diagnosed with FM after 4 months of symptoms. She was a wee bit upset with me because she felt she would be one of the people that "irk" me because she went through 4 months of tests and got a diagnosis. If any of you have read this far and perceive this to be my attitude ... go back and read the article again.
People who are sick or ones who receive a "quick diagnosis" of FM do not irk me. Doctors who insist on giving a diagnosis of FM because its the "easy way out" ... they are the ones who irk me. The doctors who run a couple tests and immediately diagnose the patient with FM irk me.
Those types of doctors irk me because I have seen too many people receive a quick diagnosis of FM ... only to find out years later it was actually really something else. Something else that could be effectively treated and/or cured.
A number of months ago a close friend of mine died ... of cancer. Despite going to her doctor a number of times about various new problems ... it was always attributed to FM. Her doctor sent her to a few different specialists who verified it was FM. After her death it was discovered her doctor told the specialists he diagnosed FM and felt she was a hypochondriac. So ... she spent the last years of her life trying to cope with the FM ... with its ever increasing pain ... and it wasn't until 3 months before she died when she went into a coma did they finally do the proper tests and discover the cancer. But of course by that time ... it was too late and the world lost one of the truly good ones that definitely help to make life worth living. The saddest part of this story is ... the oncologist said if the cancer had been caught when the symptoms first appeared ... it is likely she would have beat the cancer.
It is quite possible to have a really good doctor who effectively rules out all the other possibilities in a short period of time before diagnosing FM ... and if you have one of those then you are truly fortunate. Your doctor is "a keeper". But, if your doctor does a blood test and a couple x-rays and immediately gives you an FM diagnosis ... find yourself another doctor.
