i haven't been "officially" diagnosed yet, but i've been going through the process for the last few months.
basically i developed a very sudden onset of severe and varied symptoms. Some of the big ones were: extreme fatigue, chronic sore throat, debilitating joint pain, muscle tenderness, pain pain pain!
i went to my family doc, who first tried antibiotics. no luck. he ordered bloodwork to check me for lymes, vitamin deficiencies, etc - all came back normal. he ordered other tests and ruled out other explanations. when he was at the end of his options and my symptoms were still persisting and worsening, he referred me to a rheumatologist.
the rheumatologist also ordered even more detailed blood tests to rule out other autoimmune disorders. all came back normal. he also asked me a bunch of seemingly random and detailed questions about me, my family, my history. he poked my back and arms a few times until i had to smack his hand away.
that was yesterday - he said it looks like fibor, and prescribed something. he said in two weeks, if the meds make me feel better, then it's fibro. if not, it'll be back to the drawing board (and more stupid ultrasounds and mri's i'm sure).
to summarize - process of elimination, medical history. that's how my diagnosis journey went - hopefully if was the right one!
mhop111. Could you share with us the name of this prescribed medicine?
I've never heard of a drug that helps dx fibro, when it makes the patient feel better!
It would be nice to know how this works.
My opinion is that anyone that suspects fibro then seek a LLMD (lyme Literate
Medical Doctor) that is also familiar with pathogenic mycoplasmas. If not, then there's a risk that you end up with an M.D.or a Rheumy that is not familiar with Lyme or Mycoplasmas.
And this could have dire consequences. Your entire life could be affected by this one
decision. And unfortunately there are so many people that are suffering unnecessarily.
Please do your own research, very carefully, so you understand what you are potentially dealing with.
Also please take your time to check out the posts in the Fibro/CFS community.
Your lives can improve dramatically, when you become more knowledgeable, more proactive and seek the most accurate professional advice and treatment, possible!
So stay focused, keeping your health goals well defined, rise above the setbacks
and do whatever it takes to empower your Inner Healer.
Should you have any questions or comments, please post again.
mhop111 - I've never heard of savella being a "diagnostic" medication for the treatment of fibro. It is, however, prescribed sometimes to help with the symptoms. While Savella is not an anti-depressant, the way it works in the body is similar to how some anti depressants work. Sometimes anti depressants are prescribed for the treatment of fibro symptoms (not necessarily at the same time as Savella). However, it's important to remember that a) everyone is different and their fibro symptoms can be different b) just because your doctor may prescribe an anti depressant, it doesn't mean that he/she thinks your sympmtoms are all caused by depression, although depression can go along with fibro, as well as any other chronic illness.
I did do a little research and according to what I found, it does say that if you notice any change in your behavior, mood, anxiety, thoughtts of suicide, etc., that you should contact your doctor. So you may want to put a call into him/her and at least let them know that you're finding that it makes you "amped up and moody" and see if they want you to continue with it, make any changes to your dose, or stop the med. DO NOT adjust any medication on your own.
Mcstarrj - As mhop stated, the diagnosis of fibro is largely a diagnosis of elimination. a lot of the symptoms of fibro - pain, fatigue, difficulty sleeping - can be indicative of other illnesses, so typically the doctors will do testing to rule those out first. There is no specific lab test or scan for fibro, although there are some criteria that the doctors go by in coming to that diagnosis. The following information came from the about.com website and I think explains the criteria pretty well. Take note that some of the criteria was changed/updated in 2010, so if your doctor is still using the "old school" criteria of mostly the tender points, you may want to print this information out and take it to him/her to look over.
"Tender-point exams are no longer the only way to diagnose fibromyalgia -- the American College of Rheumatology has provisionally accepted alternate criteria for diagnosing the condition and gauging the severity of symptoms.
The diagnostic criteria doctors have been using were established in 1990. Once other possible causes of symptoms were eliminated, diagnosis was based purely upon pain. It had to be on both sides of the body, both above and below the waist, along the axial skeleton (head, throat, chest, spine), and also in at least 11 of 18 specific spots on the body that are called tender points. Symptoms have to have been present for at least 3 months.
The tender-point exam has always been controversial for several reasons. First, it was originally intended as a qualifier for clinical studies, not as a diagnostic tool. Second, it's subjective because it relies on a patient's self-reported pain. Third, because symptoms fluctuate so much, the number of tender points may vary greatly from one exam to another.
Until we have a diagnostic test that's based on blood markers or imaging, we probably won't have a perfect diagnostic test. (This is true of many diseases, especially neurological ones.) Still, researchers believe they've come up with something that works better -- they say when the looked at a group of previously diagnosed fibromyalgia patients, the tender-point exam was about 75% accurate, while their criteria caught it 88% of the time.
New Diagnostic Criteria
The new criteria keep the requirements that other causes be ruled out and that symptoms have to have persisted for at least 3 months. They also includes 2 new methods of assessment, the widespread pain index (WPI) and the symptom severity (SS) scale score.
The WPI lists 19 areas of the body and you say where you've had pain in the last week. You get 1 point for each area, so the score is 0-19.
For the SS scale score, the patient ranks specific symptoms on a scale of 0-3. These symptoms include:
•Somatic (physical) symptoms in general (such as headache, weakness, bowel problems, nausea, dizziness, numbness/tingling, hair loss)
The numbers assigned to each are added up, for a total of 0-12.
This next part is really interesting to me. Instead of looking for a hard score on each, there's some flexibility built in, which recognizes the fact that fibromyalgia impacts us all differently, and that symptoms can fluctuate.
For a diagnosis you need EITHER:
1.WPI of at least 7 and SS scale score of at least 5, OR
2.WPI of 3-6 and SS scale score of at least 9.
What this does is allow for people with fewer painful areas but more severe symptoms to be diagnosed.
Something else I really like about this is that it finally includes cognitive symptoms! For many of us, "fibro fog" is as debilitating or even more debilitating than pain, yet the old criteria didn't even mention it. It also recognizes the difference between "fatigue" and "waking unrefreshed," which I believe is an under-recognized distinction in the medical community."
The best type of doctor to diagnose and treat fibro would be a rheumatologist. Some of them require a referral from your primary care doctor and others do not. Also, not all rheumys treat fibro, so if you decide to go to one, be sure and ask them when you call for the appointment if they do. Your primary doc may still wish to do other testing to rule out other causes for your symptoms before referring you to a rheumatologist.
I hope some of this information has been helpful.
-- A fellow fibro sufferer (for 13 years now - UGH!)
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