YEAY for you ! It's treatable ! So happy to hear the great news !

your Dr doesn't think fibro is real?

I am happy your doc found something that is treatable. I am confused about what your rhuemy is saying that fibro is not really a diagnoses ? They are the ones who set the criteria for the diagnoses ?

I was checked for tender points and know others have been too. Not sure why some doc. check and others do not ?


take care gentle hugs

I'm glad at least that u have something treatable, sorry it took this long to find out. Best wishes with treatment! Hugs.

Good news you know what you have and it can be treated, thats what is important., I went to alot of specialist also. wasnt about to take a the word of just a regular dr, cause I had tenderpoints.

The specialist I went to, did alot of different blood work,, scans etc.

Nevet give up, so glad you didnt.

Please let us know what the new dr is treating you with now and keep us informed.

Hagd

Glad you have something treatable. Re fibro being not a real diagnosis, he can kiss my ass along with the asses of the AMA, FDA, SSA, APA, and a lot of other organizations and their members who know better.

Interestingly enough, the new diagnostic criteria don't use the tender points at all, so he was ahead of his time, although he was incorrect with your diagnosis.

Good luck - hope the meds work and that you are restored to full health!

I really hate to break this to you but....Inflammatory Myositis IS another way of saying Fibromyalgia..... if you break down the term using medical terminology you will see this:

algia=chronic inflammation condition
mya=muscle
fibro=part of muscle

Myositis
itis=inflammation
myo=muscle

so even though your doctor may say fibromayalgia isn't a condition or diagnosis, they are misleading you.

Monkey Toes I'm kinda confused by that as Fibromyalgia isn't an inflammatory condition, and there is usually nothing found with a muscle biopsy.

Something doesn't sound right - she had findings on her biopsy which fibro folks don't.

I understand that too....I am not saying that she has FM all I am saying is that what her doctor said had faulty logic in it. I am not a doctor, nor do I know all of her medical history....I just have worked in healthcare for 10+ years and was breaking down the terms. Warning others to be careful of labels and terms more than anything else.

Yep - too many people are "labeled" with fibromyalgia and their doctors never listen to them again once they're thrown into that "bucket."

Having fibromyalgia doesn't mean we don't also have something else going on - most of do I think but for some it's hard to get their doctor to listen when they say "this doesn't feel like my fibromyalgia - this is different."

Labels can become a way to brush us off - and I know of at least one person who was brushed off until she was past the point of treatment and now has terminal cancer.

Gotta be careful of letting them label us - no matter what we have.

inflammatory Myosistis ,is not Fibromyagia.
Prednisone doesnt help fibromyalgia ,Prednisone helps Myosistis ,Myosistis causes muscle damage .Fibromyalgia doesnt cause any damage to your body ,I have both

Myositis is a rare disease in which the muscle fibers and skin are inflamed and damaged, resulting in muscle weakness. There are several types of myositis that affect different parts of the body.

I get so confused over the difference between fibro and the myositis conditions. I definitely have swelling in my hands and sometimes in my arms. Some sites I have seen say fibro does not have swelling and other sites say that it does.

My muscles are also extremely weak since November of last year. The rheum I was seeing said that you can have weakness with fibro. My aldolase levels were also high which led me to believe I probably had polymyositis instead of fibro but the doc says no. My EMG was normal and he goes by that. So he says I have CFS and Fibro.

However, I now know that I have had fibro all my life but since last November something has definitely gone on that is different. I'm not sure what to do. Accept the fibro diagnosis or insist that I have something else!

The symptoms of the myositis conditions and fibro are almost identical so I am totally confused!

Inlfammatory myositis is an unbrella name for a group of conditions that weaken the muscles - usually closeat to the trunk i.e. upper arms, neck and thighs. It also causes weakness in these muscles and swelling in these muscles and sometimes in hands. Yes 1st treatment tried is prednisone to dampen inflammatory response.
horseluvn... my emg's were normal - my hands were swollen - the only way to tell was a muscle biopsy and that may not be 100% unless they biopsy the correct muscle.
What i have realised is you have to ask yourself : Is it worth having amuscle biopsy if I am not prepared to take the drugs forever with the long term BAD side effects? One option is to treat your immune system to help lessen whatever is happening to it. Go to Help Autoimmune http://heal-good.blogspot.com/ for more info and Good Luck.
P.S.The Rheumy meant Fibro is a condition of ruling out all other possibilities - sorry i don't know how to explain it any better

Although fibromyalgia is not believed to be inflammatory in nature, many fibromyalgia patients have underlying inflammatory conditions. I do, that's why NSAIDs work for some of my pains - I just can't take them regularly.

Inflammatory myosistis can be co morbid with F.

I've seen over 60 docs in the past 20 years. At least 6 have told me I didn't have F, that I had something else. Tests come back negative and they dismiss me.

I'm not trying to burst anyone's bubble, but I wouldn't buy into this too quickly, especially since your rheumy is so uninformed, as much as I'd love for it to be true.

My constant wish is to never see any of you again - because you got either cured or misdiagnosed.