Okay but just remember this is my case not all people are diagnosed the same. I apologize for it being so lengthy but it is informative.
I don’t have anybody who is very supportive because they don’t really understand what I am going through with the pain, with the exception of my best friend. Shell recently lost her husband to brain cancer at the young age of 45. I try to support her and not let her know how painfully bad I am really feeling while showing her how to run her husbands trucking business and teaching her bookkeeping, but she knows and understands the pain.
In the meantime, do you ever get to the point where something is just not sitting right with you, and it just eats away at you and you just need to keep asking questions until you feel satisfied with the answer? Recently that happened with me so on june 25/03 I went back to my neuro-surgeon I seen during my stroke. Shortly after my stroke he moved his practice to north carolina, but recently moved back here. I remembered him saying things to me that just didn’t make any sense; I was on to many drugs (brain fog) to understand what he was saying.
It turns out that the neurologist (dr. D.) misdiagnosed me with fibromyalgia eight months before my stroke. I was referred to Dr. D. Because I started with a pain in the bicep of my right arm and armpit. I did not have the flu like symptoms where your whole body aches associated with fibro. After 2 months the pain turned into the worst head & neck pain from h**l that would not go away and no drug could stop the pain. No mri or ct or bone density test was done. He claimed that since I had this pain for such a period of time that I must have “fibromyalgia” and sent me to a rheumatologist (dr. R., the only rheumy in this area for 150 miles) who agreed with Dr. D. (by the way Dr. D. Is the top neurologist in my area, very well respected and nobody would challenge his an error until I met Dr. S. My neuro-surgeon) Dr. R. Told me that he agreed with Dr. D.’s fibro diagnosis and told me he could not do anything for me and not to go back to him. But Dr. R. Did have me go for therapy at his “clinic” that another doctor Dr. Dave ran for him for chiropractic, physical therapy and massage. After 26 weeks, 2 – 3 times a week I was feeling even worse than ever before. (i had also asked Dr. Dave if by chance I was having my neck manipulated for neck and head pain relief adjusted too much and he said no not at all, he would say every day was too much but not 2 - 3 times a week.)
eight months later, after the first bout of bicep pain and severe head and neck pain I had a stroke cause by a bone spur on the cervical spine affecting c5, c6, & c7 discs which is pressing on the nerves causing my migraine headaches. When I was getting my neck manually manipulated it was tearing the artery which finally built such a blood clot that it broke away and gave me my stroke. Since my stroke my body has changed chemically and I get severe allergic histamine reaction when I take any narcotic pain relievers.
(my misdiagnosis was because of my age, early 40’s, the Dr.’s said I was to young to have the problems medically that I have, ya okay just because of my age means they shouldn’t test for a suspected problem instead of labelling me?) forget age, I have a bone spur on the cervical spine which is pressing on the nerves causing my migraine headaches, at first there was nothing he could do to stop the pain, it was not bad enough. But now that the pain has gone down into the arms, hands and legs he can do surgery to remove the bone spur. (i have had to quit 2 well paying jobs due to the pain in the arms and hands.)
removing the bone spur before this point would have not had any effect on the migraines stopping. I have gone for an mri and ct scan recently and have to now wait until the end of august to get into see Dr. S. For the results (hopefully surgery to remove the spur), so I just have to suffer with the pain some more until then.
Note, Dr. S. Told Dr. D. That he himself did not believe in fibromyalgia and said that I did not have fibro. My blood pressure is normal, my cholesterol is perfect and I had no reason other than the bone spur pressuring my nerves, artery and veins for having a stroke.
This pain won’t subside; at times it hurts to breathe or move a muscle.
I guess what I am trying to say here is that we have to be so extremely careful in explaining to our doctors the varying degree and precise point of pain. I have now a clear understanding of referred pain. I also know how devastating it is to be labelled with an illness that is still so controversial such as fibromyalgia.
I am not here to bash anybody, but in my opinion I personally, and I am entitled to my opinion, do not believe that fibromyalgia exist to the extent that some doctors make it. Fibro = tissue, myalgia = pain, fibromyalgia = tissue pain doesn’t explain anything to me.
Most doctors will label a patient with fibro when they can’t find a problem rather than looking harder.
Times have changed the almighty dollar has taken over a great deal of our doctors and those it ($) has not are the good doctors who have to take the bad wraps for the bad ones. Once you are labelled with fibromyalgia the good doctors don’t want to fight the bad doctors but will try to help the improperly diagnosed patient without trying to cause a riff. I just don’t want anybody else to hurt as badly as I have been for the past 3 ½ years because of a doctors misdiagnosis of because of age.
Let’s hear your response please, I am interested.