Posted by friend of fellow FM sufferers
on October 29, 2000 at 18:28:31:
In Reply to: Denial posted by Julie on October 29, 2000 at 10:18:25:
You, being in the medical field seem much more realistic than most of us that have suffered for so long with being told the cause of our symptoms is in our heads/mental, or have tried so many treatments that may have given relief for awhile, but not for good.
I know what you mean, having gone the gamut of every possible treatment for FM, medical, drug, and physical therapies, chiropractory, diet changes, supplements, massage, etc. etc. etc. etc.
Was so happy at first, after 20 years, to finally just have the DX, but then found it IS just a catch-all diagnosis for what are specific symptoms but are common symptoms for a large range of possible problems that have no rocket science tests. Meaning the tests are not at all conclusive in many diseases/disorders and so-called border-line cases.
I say so-called, because anyone that is disabled from the FM pain, knows the disorder is not at all a "border-line" problem.
I learned from a chief of endocrinology at a well-known teaching college, that a group of Rhematologists coined the name Fibromyalgia to include it in their specialty, which is degentrative joint disease. But the symptoms have always before this been classified as endocrine problems. Hormonal imbalances are subjective, and are not known to be commonly diagnosed or treated properly, and most of the probs. are mis- or un-diagnosed.
But anyone that knows what FM is, knows it is not degenerative at all, and is not classified as a disease at all. It is a disorder, which is not the same thing.
However, the symptoms are the same as endocrine imbalances, and that makes sense, when we think of how hard the thyroid, for instance(which controls the body chemical balance), has to work to balance out all the chemicals/hormones we are exposed to, take as medicines, and ingest in our foods; is it any wonder our bodies are not funtioning right?
Rhuems and other doctors then give more chemicals, Elavil, etc. and we continue to suffer.
Thru much prayer, and tears and research, I finally learned I have to be my own health care advocate, and educated myself so I could get proper DX and treatment.
By all means, I don't advocate that what was my personal prob. is the same exact prob. for everyone.
(in my case, I was told my thyroid function was normal for many years, as it was well within the lab range, but finally my female hormone therapy crashed, and I was thought to be hyper-thyroid, but was actually DXed as "border-line" hypothyroid. In fact, NO test proves what level of thyroid an individual needs to be well, and the lab range was WRONG for me. With thyroid med, after over a year of therapy, I am almost well now. This is a very common misdiagnosis.)
The answers are out there.
One site that helped me a lot is the about.com/thyroid website which has medical research and interview articles archived that can be found by word and phrase searches. Also, many people from the healthboards Thyroid message board encouraged me and helped by sharing their own experiences. Through them I was exposed to books and ideas and learned of a little used or known of test (the TRH test) that aided in my DX. But I had to both know of it, and insist on it, and insist on treatment and change doctors many times to find ones open to listening and up on proper DX proptocol. Even my present GP admits he just does not know enough about thyropid to DX it except in severe caeses. Now he knows that "lesser" cases can be severe to the patient and the lab values are not sufficient for proper diagnosis.
I am all for the medical field, and am thankful for it. Thank you,Julie, for nursing!
But we have been let down in the FM arena, and I for one am using my anger energy to encourage others to look past this FM diagnosis, for answers are out there.
But each one has to take their health care into their own hands and get to know what is available and insist on it.
I encourage you to learn more about the endocrine system, symptoms of disorders, and insist on a second opinion by an endocrinologist. And even then you may get brushed off and told yours is "normal" if you don't know what to watch out for and ask for. This is a common problem.
You are very smart or you would not have been able to become a nurse. Don't fall for the catch all FM DX, as you are RIGHT, that is all it is.
Don't give up!