Here is another definition. Renie has posted a great blog by the Mayo clinic with their definition, here is yet another!
http://www.johnshopkinshealthalerts.com/symptoms_remedies/fibromyalgia/2049-1.html
Notice the contradiction that first states that profound pain and fatigue can be made worse by trivial activities, then later they go on to cheer you on into regular exercise can make you better! LOL! No wonder we react!
I will look at their definition, but reading your concluding sentence has me thinking it's not a critical read. However, the more we can read and learn the better equipped we are.
Thanks SK for posting this information for all of us.
Rachel
I like the line about "only use over the counter, avoid narcotics". What about those of us who don't get one bit of relief from OTC's?
A very valid question Allesmere.
Interesting. I always find the lines about no narcotics interesting and think that if doc or the people who wrote this had fibro they defanatly would not be saying that.
I do not necessarily entirely agree with all of this but here is their way of thinking as explained by my Rheumatologist. I always urge everyone with fibromyalgia and no known cause to go to a Rheumatologist, they are also an Internist, whose forte is diagnosis, and if for no other reason, they want to eliminate autoimmune.
The discussion I posted comparing Fibro to Arthritis by Johns Hopkins considers Fibro to be a Rheumatic Disease, they are the ONLY ones, but they consider fibro alone an autoimmune disease.
My Rheumatologists says that Fibro is a condition CAUSED by chronic pain, to treat the fibro, you have to treat the CAUSE of the chronic pain.
So as I would understand it, Rachel your Osteo is to be treated, and Aly, it would be your Cistitis! These may have been the very thing that caused your Fibro, no matter how long it has taken them to find the cause.
They do not want to treat a CONDITION with narcotics! The majority of Physicians feel that Fibro does not exist alone, it is caused by something! So until they find that something, most will not perscribe opiates!
I am not a Doctor, this is what I understood of his explaination. My Rheumatologist and GP are treating my autoimmune diseases, which they believe to be the CAUSE! When my arthritis is mild, so is my fibromyagia!
My Chiropractor does not like the term Fibromyalgia, he diagnosed me as having Myofascial Pain Syndrome.
http://www.mayoclinic.com/health/myofascial-pain-syndrome/DS01042
There are also may Physicians who feel that narcotics only make the pain worse! Personally, I feel that they help me!
So if you encounter a Dr who thinks along these lines, you have to instead talk of your back injuries and issues! Ask them to treat you for THIS!
Sometimes the worst thing you can do is use the word Fibro, as some Doctors consider this a diagnosis used when nothing else can be named. They believe it to be an incomplete diagnosis, or a condition, not a disease!
I have been diagnosed as having Myofascial Pain Syndrome as well as Fibromyalgia and with this increasing fatigue I don't know if it's part of fibro or if it's Chronic fatigue Syndrome.
just wondering how they determine that myofascial pain syndrome is tx with mild stretching, and fibro needs regular exercise, I think they are confusing regular exercise with staying active
Hugs
SK, again thankyou for posting these web articles, I am always open to expand my knowledge & understanding of Fibro, however … I don’t understand were or how they come to some conclusions, I’m fearful that the PCP are being mis- informed, how in the world can they say that underused muscles, Poor fitness & poor circulation can lead to fibro, has someone been diagnosed after months in bed ? Or opps, you have been a couch potatoe for the past year so I’m sorry you have developed fibro, what kind of crap statement is that, I worked 4,5, 6, days on my feet for sometimes 12 hrs at a time, how is that underuse of my muscles???
And avoid Narcotics… Really, Why ? My own Dr. Has said narcotics don’t help, how would she know, because John Hopkins says so, it’s so frustrating !!!
I think if we could all write a letter send it to Mayo Clinic, JH & NIH , refuting & asking for research about this whole exercise & narcotic issue, perhaps someone would take notice of statements that are being made without research that backs it up.
Hugs
I am worried about going to this new pain guy that he might not give me Vicodin, even though I already have a current script. I only take it when it gets really really bad and sometimes I go without it cause there is always a chance that it will make me sick and and I have my little ones. If it gets low I get worried about not having it even though I don’t take it all the time it’s there if I need it. I can’t believe people use it to get high and it falls back on those of us who really need it.
I understand your feelings perfectly, I have my young grandsons often so I can relate.
Discuss this with your Pain Management Dr, and tell him they are making you sick, he may be able to prescribe something like Phenergan that will prevent the nausea, or he may prescribe something entirely different that will work better for you.
At any rate, I wish you well Rebecca. I know you suffer terribly with your back! I hope that they can find you relief and improve your ability to function.
All my best,
SK
Good point! They do contradict themselves about exercise. Everyone thinks FM will get better if we exercised....
I know, I'll quote Renie here "some of the info, even from the top hospitals, sounds like it was written by the receptionist, instead of the Doctor"! Words of wisdom there!
Well, at least NIH said that Fibro is a Rheumatic disease, so you stand a better chance with them, but the frustration we go through with all of these scattered definitions, classifications and even disregard of this diagnosis does us no good!
Terri, our mod on Lupus says that in the UK, Fibro is already classified as an autoimmune disease, but isn't that the same as autoimmune?
And how do they know that we don't? If we do, then what do they say? The neurologist I went to wanted me off ALL meds! Of course he wanted to send me to HIS life coach, and HIS yoga instructor...get the drift? BTW, I was STIFF, that was my problem!
So I went to the pool until I almost drowned, my Rheumatologist could not believe any of this, he wanted me to go have my wrists retested for CT, I said "Oh, back to the guy who thinks my only problem is that I'm stiff"? I got the x-ray slip instead, I believe a life was saved that day! That man never wants to see me again dozens of them don't!