PMR is my new diagnosis

Posted by Cyn-Dee @cyndee, Jan 1, 2012

ok, now I know what I have, only it comes and goes. My pain migrates to neck from shoulders, and then down across my chest muscles- and when it hits there, I can hardly breathe, or move! I've pinpointed the flares to activity- for most people it would be NORMAL activity, like Christmas preparation, lifting and moving things, garden work, raking or pulling weeds- etc. I haven't been to the gym in months, afraid to do any exercises that may cause a flare. The doctor put me on Prednisone to help the recent attack, and did mention that some of her patients take a low dose on a daily basis, but I really don't want to start doing that yet. Is that where I'm heading though? I've had 2 recent flares in the last month and so afraid that it'll hit me like it did last yr where I couldn't move without crying, and sleeping was impossible. Is there any exercise I can do to strengthen my now flabby arm muscles without sending me into a flare? Do I have to be afraid now to rake leaves or vacumn my house? Isn't there any hope for this? I am so discouraged. Please share if you have any advice. Thanks.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

I am interested in knowing what others have done regarding polymyalgia rheumatica and the use of prednisone. I am
currently off the prednisone and am wondering what withdrawal symptoms others may have experienced. I have had
some hot tingling in my hands and fingers and wonder if there could be a connection to the prednisone.

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I am new to polymyalgia rheumatica, and hope to learn more.

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polymyalgia rheumatica..... Does anyone have this and what is done about it.

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I started having acute knee pain in the middle of the night April ‘22. Then, the pain went in different sites and jumped to different parts of my body. I had all kinds of things, sonogram, X-rays, Dr. PCP, Ortho,, pt, Accupunture, massage ice, heat, TENS. I called Mayo to see if I could get in. They said they were not taking new patients. I got in to see Dr., She thought it was just my knee and that the pains were from favoring my knee.
The end of May, I went to emergency for pain and headache.(I was in another State) Dr did an MRI of my brain, and gave me a hydrocortisone.and a Rx. It was 2am. The next morning, @ 5am, I could not sit up! I had to call EMT to get me off the floor! The Rx (filled @ 9helped). Still intense pain. I flew home. My blood pressure went to 195/120, Emergency again. Blood test, chest X-rays. Next day, Dr. Rx’d high blood pressure med., 2 days later, Then the blood test: showed my inflammatory was @ 69 ( marker was 0-30). DR put me on 10.mg. I Felt better in 2hrs.
2 weeks later, Rhumatologist next,- 40mg. And blood test. Diagnosed w/poly and possible ACR.
Next, biopsy, vascular surg., was neg for ACR.
Eye DR. : Just said no inflammation in the back of my eye. (Starting cataracts). My eye symptoms came on in May.
TIP: eye Dr. Said,”Focus on a object, (switch plate) on the wall. Look straight at it.
Cover 1 eye, look at it. Now, imagine a 2’ diameter circle. Now do the other eye.If you can see a pie shape taken out, call the Dr right away. The blood is not getting to that part of the eye.You won’t see this if you look thru both eyes. Do this am & pm, it comes on quick. (My eye site is worse.)
Last of July, rum/Dr. Blood test. Reduced my predinzone to 30mg. Gradually tapering. 10 in 2mos. In 2 days my symptoms started back. The 3 day, I went back on 40mg. Symptoms got worse.
I am doing more work, I can do nothing on Sun. So I hope this will be positive. I don’t want to stop being active. My muscles feel they are shrinking. My skin is papery. I have “Old lady bruises on my arms.”😳.
The thing that does help, Salonpas patches! I take Tylenol Also.. D3, Mag, C, multi V, cal.
Today it is worse. My life has sure changed! I appreciate everything I CAN do.

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@shesnuts

I started having acute knee pain in the middle of the night April ‘22. Then, the pain went in different sites and jumped to different parts of my body. I had all kinds of things, sonogram, X-rays, Dr. PCP, Ortho,, pt, Accupunture, massage ice, heat, TENS. I called Mayo to see if I could get in. They said they were not taking new patients. I got in to see Dr., She thought it was just my knee and that the pains were from favoring my knee.
The end of May, I went to emergency for pain and headache.(I was in another State) Dr did an MRI of my brain, and gave me a hydrocortisone.and a Rx. It was 2am. The next morning, @ 5am, I could not sit up! I had to call EMT to get me off the floor! The Rx (filled @ 9helped). Still intense pain. I flew home. My blood pressure went to 195/120, Emergency again. Blood test, chest X-rays. Next day, Dr. Rx’d high blood pressure med., 2 days later, Then the blood test: showed my inflammatory was @ 69 ( marker was 0-30). DR put me on 10.mg. I Felt better in 2hrs.
2 weeks later, Rhumatologist next,- 40mg. And blood test. Diagnosed w/poly and possible ACR.
Next, biopsy, vascular surg., was neg for ACR.
Eye DR. : Just said no inflammation in the back of my eye. (Starting cataracts). My eye symptoms came on in May.
TIP: eye Dr. Said,”Focus on a object, (switch plate) on the wall. Look straight at it.
Cover 1 eye, look at it. Now, imagine a 2’ diameter circle. Now do the other eye.If you can see a pie shape taken out, call the Dr right away. The blood is not getting to that part of the eye.You won’t see this if you look thru both eyes. Do this am & pm, it comes on quick. (My eye site is worse.)
Last of July, rum/Dr. Blood test. Reduced my predinzone to 30mg. Gradually tapering. 10 in 2mos. In 2 days my symptoms started back. The 3 day, I went back on 40mg. Symptoms got worse.
I am doing more work, I can do nothing on Sun. So I hope this will be positive. I don’t want to stop being active. My muscles feel they are shrinking. My skin is papery. I have “Old lady bruises on my arms.”😳.
The thing that does help, Salonpas patches! I take Tylenol Also.. D3, Mag, C, multi V, cal.
Today it is worse. My life has sure changed! I appreciate everything I CAN do.

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Welcome @shesnuts, It certainly sounds like you have a lot of things going on. I'm wondering if the doctor mentioned anything about Giant Cell Arteritis which sometimes occurs in patients with PMR and can affect your vision. Here's more information from Mayo Clinic about the symptoms from GCA in case they might match up with your symptoms -- https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758.

Were you diagnosed with PMR by a GP doctor or did you see a rheumatologist?

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