So I finally had a visit with a specialist about a week ago and he is more than willing to help me at the finr tune of $2900 out of pocket. I am living with it bearably right now...actually doing pretty good since I got my diagnosis. Who knows- maybe I am doing better b/c I am not thinking about it as much.
Anyway, long story short this dr. came in after reviewing nurse notes, CAT scan, and MRI. He says "I think I know what is wrong with you and my dr. has the same thing". I looked at him like a deer in headlights and he says
I was like, WHAT? How could he know all this? ALl I knew about fibromyalgia is that it is hard to diagnosis, no known cure, and you basically live with it. I had handed him a very lengthy letter about all that was going on with me for the past year b/c I did not feel that his questionnaire would cover it all. This is probably where he got his diagnosis. Long story short, he did not talk about it much and moved on to my jaw.
Well, this whole "fibromyalgia" thing has been bugging the crap out of me so I thought I would look it up and try and put two and two together based upon his comment. I was appalled. I have about 85% of the symptoms. I don't really know where to go from here with it since I am not dying in pain, but I just thought it strange and wanted to share this with everyone.
(PS, he wants me to do a sleep study for trial and error purposes in treatment but I am not going to do it for I do not have any symptoms whatsoever).
I bolded what I have wrong with me:
Fibromyalgia meaning muscle and connective tissue pain, is a disorder classified by the presence of chronic widespread pain and a heightened and painful response to gentle touch (tactile allodynia). Other core features of the disorder include debilitating fatigue, sleep disturbance, and joint stiffness. In addition, persons affected by the disorder frequently experience a range of other symptoms that involve multiple body systems, including difficulty with swallowing, functional bowel and bladder abnormalities (my interstitial cystitis), difficulty breathing, diffuse sensations of numbness and tingling (non-dermatomal paresthesia), abnormal motor activity (i.e. nocturnal myoclonus, sleep bruxism), and cognitive dysfunction (brain fog). An increased prevalence of affective and anxiety-related symptoms is also well known.
Many drs feel fibro is a name given to a group of symptoms (not a disease or virus, etc) resulting, or of, an unknown origin - hence no cure other than to treat the symptoms as they present themselves - given the fact that most medical drs do not acknowledge the possibility of the widespread affects of tmj on the body in general nor do they acknoweldge the possibile affects of structural or skeletal misalignments within the body - IMO - it is far easier for them to provide a diagnosis which is more acceptable within the medical community. IMO its right up there with, when lacking any other clinical diagnosis, of saying everyone is depressed or suffers from anxiety - when the truth is they may also be suffering with those condtions - but likely due to some other problem yet to be diagnosed or treated.
When I told my medical dr of all my symptoms and that I had overall body pain etc akin to fibro - he said of course you do, but fibro isn't a "cause' - its the result.
but its not just a random grouping of all symptoms of an unknown origin but limited to a specific grouping - the more prominent one being that of widespread muscle or body pain, aching and stiffness, etc.
Well its not that the symptoms do not exist or are imagined - they are real - its just that there is no clinical or systemic cause of them that can be medically identified. Its like having a spinter and experiencing pain - but if you do not see the splinter b/c it is deeply embedded and not visible on xrays or to the naked eye - does it mean the pain is not real? or that there is no such thing as pain? - it just means the cause of the pain can not or has not been identified. You would still treat the pain in some way either medically with drugs or possibly naturally or with alternative treatments (aka western or holistic approaches) to help the body heal itself or in this example help the body expel the splinter or force it to the surface for it to be removed. Another analogy would be running a fever - generally it means there is an infection somewhere - having the fever is a "result" of the infection not the "cause" of it - but it doesn't mean if you can not locate the infection you don't have a fever. You would still treat the fever until its source (the infection) can be indentified.
If a dr examined you and said I know what's wrong with you - you have a fever - wouldn't you then wonder what is causing the fever? Its the same with fibro - you can have it (this grouping of symptoms given the name Fibro) but what is causing it - do you just treat those symptoms only or try and determine what is causing them to begin with? Would you just treat the fever by putting ice on the forehead and leave it at that? If they couldn't locate the source of the infection - does it mean you do not have a fever?
I guess the point I am trying to make is that having fibro does not mean they have identified what is the cause of your symptoms - all it means is that they have a name for all the symptoms you are experiencing.