Tink's Mom

I thought that Remmicade was for Rheumatoid Arthritis...I wasn't aware that they used it for Fibro...

wolflady

Tinks mom,
I too was told it was in my head, until I found a doctor that said, if it is in your head, then I have a lot of clients with the same problem.
Wolflady

roseOfsharon

I am wearing the purple today! My daughter has fybro and went though many many tests and told by the gastro. doctor it was in her head , that she just got upset when school was about to start and the IBS and Chronic Fatique etc would set in. I never went back to him. We found out when my daughter was 15 what it was, she has been with John Hopkins Pediatrics since. I truly hope they can get a handle on this and help those that are just turning the adolesence stage in their lives to prevent this! My daughter was 8 yrs old when she was hit hard with IBS, low BP and Chronic fatigue... which later was found she had Fybro. They all run together and in a viscious (sp) cycle triggered by stress and over activity as well.

I wish everyone a great day... A Pain Free One!

Hugs to all

Jo Mama

I have it and it is so painful. Have taken Cymbalta which worked for a time and Savella but the side effects were awful so am suffering until Dr. can come up with a better solution. Any ideas out there?

Bernie942

I believe that if a doc had told me that this was all in my head, I would have had to go upside his.

sarahelloyd

At last over here in the UK doctors are finally accepting that there is no point in forcing FMS patients to exercise as this is counter productive. We were being encouraged to start with a little and increase daily, but it was just too much for me. I love it when doctors suddenly start agreeing with patients.

jljack

So, just to add to the chorus here....I was on Remicade for almost 4 years. I had not much success with it, but my Rheumy was very slow to make changes to my meds. Remicade suppresses the immune system...which leaves you open to infections and other diseases. If you are on or considering this drug, please read up on it. It is one in a whole class of drugs that suppress your immune system. It does NOT control your illness, it only keeps your immune system from attacking your nerves, muscles and joints, depending on your form of immune disease.

What started me looking for another treatment was I got an infected cyst on my face, and ended up having to have it surgically removed because it would not clear up. UGLY!!! I did not want to risk having another infection like that or most likely worse.

If you want to know what I found, see my post about Alternative Treatment for Auto Immune Diseases.

lovelyl

I, too, suffer with fibromyalgia. It's hard to have an "invisible disease". Others think you look fine when you are really in pain. Keep your chin up!

auntiehenno

Thanks for brining this up. The weather has been terrible past 3 days, and air pressure is bugging me also. My prayers to all with fibro. Have had it for years. It can be sich a debilitating condition, plus I have Chronic Fatigue Immune Deficiency Syndrome also.

chuckbere15

I don't have Fibromyalgia but have MS pain and know what you are going through. Good luck with keeping everything in check!