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09-03-2017 11:49 AM
. I developed polymyalgia rheumatica 7 years ago. It is not fibromyalgia but has similar symptoms. I had just retired from a stressful 25 year job and was looking forward to retirement and the birth of my daughters first child. It started with muscle pain and difficulty walking and doing everyday things. It took a full year to be diagnosed and was getting worse until I was pretty much housebound and could hardly do anything. I was tested for Lyme and all the muscle diseases. Had numerous tests EEG, MRI and finally they came up with PMR. It is an auto immune disease and the treatment is steroids. High doses the doctor said it could last 2-4 years and then would go away on its own but he recommended I not stay on the steroids more than 6 months because even though they help your body gets addicted to them and every time I would get down to 3. The pain would be unbearable. I was on them for 9 months . Advil helped but because I took so many I wrecked my kidneys and have to deal with a whole new set of issues. I also nad prednisone rebound and was so short of breath I couldn't walk across the room without being breathless. I am still being treated at Mass General pulmonary clinic for this. After 2 years 3 counting the year they were trying to diagnose me it went away. Thank God my wonderful husband did all the basic things I couldn't do and worked full time and my daughter helped me with bathing and hygiene while she had an infant to care for or I would of been in a nursing home. I was completely helpless the last year and then it went away. The doctor told me this would happen but I didn't believe him. I will never take steroids again they help with the pain but cause so many side effects. I missed my grandsons infancy because of PMR I couldn't even carry him or change his diaper he is 71/2 now and we are very close, but I still feel I missed out on his baby years. As far as stress causing PMR. When my symptoms started I was very happy just retired and awaiting the birth of a Grandson. My best friend died suddenly while I was battling this illness and that was devastating. Stress makes everything worse and is not good for you but I don't believe it caused my PMR. The doctor says I could have flare ups but it has been 4 years without any he also says some people never have it again, I hope that I am one of the lucky ones. Anyone who is going through this I send prayers that you will soon be well. Hold on it does get better.
09-03-2017 03:50 PM
apple sauce, I relate so much to your post. My general physician was testing me for everything but also! I couldn't stand the pain; it was debilitating. I had no one to help plus I have a martyr complex and hid the pain as best I could. That's why I teared up when the ortho specialist said "I am pretty sure I know what you have". I know steroids are bad but it was the only relief I got. It is a horrible affliction but not much known as yet about it - I guess. I am breathing a sigh of relief hearing it will wear itself out and disappear. I hope it happens to me.
09-03-2017 04:00 PM - edited 09-03-2017 04:18 PM
Thank you to everyone here! It is uplifting to hear your stories and I can relate to so many of you. I haven't heard of Fibromyalgia Rheumatica before I was diagnosed. It is hopeful that this is not a lifelong affliction since it is so painful when at it's worse. Even now that the pain has lessened, it is very difficult putting on a bra, putting on other undergarments take more than a minute or two. Bending is tough; getting in and out of a car, up and down from a chair is awkward. My doctor is really great but I don't know why he doesn't give me more detail and options. I'm takfing a lot of advice from here and going to discuss them with the doctor. That's why women helping women is so helpful.
09-05-2017 03:54 PM
Saw a commercial for a product called Revitive for pain. Anyone try for especially this ailment?
09-06-2017 04:41 PM
It is not fibromyalgia..polymyalifa rheumatica is a different though similar disease.along with ra, I deal with polymyalgia on occasion and steroids seem to be the only thing that helps.
i have found a rub, called penetrex that makes the achiness better. Time also helps.
((Hugs)))$
09-06-2017 04:42 PM
Polymyalgia rheumatica..sorry for the misspelling.
09-06-2017 06:01 PM
@cddh, Usually doctors will treat a new disease aggressively like they did mine (Rheumatoid Arthritis). However, now 6-1/2 years into the disease, I inject Enbrel weekly and I take 5 mg of Prednisone. No more DMARDs for me which is a good thing but I will probably always be on Prednisone. I hope you feel better.
09-08-2017 06:35 AM
Kleo.....I thought the same thing bone cancer for the pain in bones are unreal....I still do not have a Diagnosis, today I see neuro doc for a nerve test???? My primary gave me predisone...I'm so afraid to start it but the pain is out weighing the fear. I have never been soo miserable...I Truly am great full for you and other posts here I do not feel so alone, BLESS YOU. I hope help comes soon, as the days pass I feel very depressed and helpless...
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