Massage and PMR

I titrated off the prednisone in a week.  I was only one 10 mg so that's reasonable.  Yes, I still have pain.  But I don't have to take pred.  I don't have to use a walker, and I don't have to use a cane.  And the therapist is not the best resource for answering that since she has moved and two of her patients went on to other massage therapists. The people i know wiht PMR are the best resource for me actually I think.  

My blood work at 25 days out is high normal....but it isn't showing a need for prednisone!  I should probably say that I also suffer from other pain.  I had 9 major abdominal surgeries that left me in bad pain.  But as anyone knows who tried it, pain pills don't work with PMR pain relief...the only relief I ever got from a medicene was from the prednisone.  And that is what is always recommended....but boy do I dislike that drug!!  

I am glad that massage works for me.  I am careful to direct the massage to where I need it.  I am careful to direct the pressure.  I don't have too much pressure used....I think that actually MIGHT start a flare as others have reported.  But I never went to deep massage in the first place, just targetted. 

And it works for me.....so I just thought it MIGHT work for others. That's why I found the board and put it up.  

The thought of having a massage never entered my mind as my muscles are still very tender, the slightest bump is uncomfortable ,getting my blood pressure taken is torture . I am currently on 3mg 6 days and one 2 & a half  and I am pain free the slow reduction has worked well for me , I feel I'm getting some of my energy back though I am still being careful not to over do things .

A lot of people find that massage with PMR actually causes what feels like a flare and their muscles take ages to recover. I've always "done" massage and am used to the idea that it releases the cytokines in the myofascial trigger points into the blood stream and for a short time you might feel worse. 

Does your muscle pain go at higher levels of pred? I remember it being agonising having my BP taken! 

I'm with you on this Eileen. I was having deep tissue massage initially and it nearly crippled me for the next three days each time. Even gentle stretching of the calves and hamstrings was enough to set it off. Only the pred has really helped and quite possibly taking a magnesium supplement.

No Eileen my muscles have been very tender all the way through if someone prods me it's like pressing on a bruise , I thought it might get better as I lowered as all my other symptoms are slowly improving.

Have they ever checked your creatine kinase levels? It is raised in something else that causes similar symptoms to PMR - it doesn't make much difference in that the treatment is still pred but I think they use higher doses for a much shorter time. Just wondered.

Oh I don't think so Eileen I've had a few blood tests but can't say I've heard of that one . The Pred helped the PMR symptoms almost immediately, the stiffness went and the pain in my neck shoulders and hips is gone , I haven't had a proper flare since last April which went after a slight increase in pred . I am doing the slow decrease in pred not following the Rheumatoligists 1 mg a month method as that does not work for me. I know I had this tenderness before I was diagnosed I remember someone pressing on my back and it was really sore I thought I had a bruise but there was nothing there. I had my blood pressure done last month and it was agony I was on 3 mg then it was making me wonder if there was still some inflammation left .

If it is mainly back it could well be myofascial pain syndrome. I'm having massage etc by a physio at the hospital at the moment - when I first went to the doctor last autumn it REALLY hurt if you touched my back muscles, now it just hurts when they press their fingers in! But it is improving all the time.

There are doctors who mention pain problems when having BP taken as a possible sign of PMR. Definitely applied for me. 

Eileen, you can dispute it alll you want, but actually it's MY body so I get to say...not you.  

Everyone I know with PMR started out feeling afraid of massage and expecting bad outcomes.  They got good ones.  I got a good outcome. The only reason I put my outcome up here was to be helpful to people that WANT to try body work. 

If it isn't for you?  Fine.  But you are disputing my ability to tell what MY body feels and sorry, you don't get to do that. 

I am a behavioral scientist with 4 books and over 100 articles in medical, scientific, and health magazines as well as internet work in health education and behavioral science.  

Reporting that I found something that WORKED for me in a disease that is painful is me trying to be kind to those that MIGHT find that helpful.  That's all.

If you had read my response properly you would have seen I didn't dispute it worked for you - but said that I doubted that relief of that sort was from PMR alone. Given the mechanism of PMR, which is a chronic autoimmune inflammatory disorder, it isn't ever going to respond to a single manual treatment. Nor did I say it wasn't for me - because I DO use massage. But it doesn't do anything significant for the PMR itself, it works for the myofascial pain syndrome which is common alongside PMR.

You don't say either how long you had been on pred before stopping from 10mg in a week. Anyone who has been on pred at or above 10mg for more than a couple of months should NEVER stop pred in as little as a week and it is not a good idea to recommend it to others. They could become very ill.

I occasionally have a course of massages (once a week for six weeks), but I have never been pain free after them.

I've had PMR for five years and the only thing that has ever worked is pred.

It's anywhere on my body my arms my legs , I have two small dogs and it's painful if they walk over my legs . I had to have an excision on my back last month and when the surgeon rubbed the antiseptic over it was uncomfortable.

How strange - you have my sympathy, I do remember what it was like and to think it wouldn't have gone away makes me cringe!

It's only now dawned on me why having my BP taken is painful. It was never a problem before PMR. Thank you, Eileen.

It wouldn't do any harm, Anhaga. I must admit I was supposed to have had mine taken again in January but I forgot. Oops. I find, like you, the flutter etc has more or less gone as I am reducing.

Molly, I wonder do you havke fibromylgia along with PMR? The pain you are describing sound very like the pain I have from fibromylgia, any pressure feels like a bruise and the pain deepens rather than dissipates. The pain when your dogs walk on your legs, in my case cats! Also the pain from getting your blood pressure taken, that's happpened to me for years not just after being diagnosed with PMR. I've had Fibromylgia for about 15 years, different pains.

Could be both I suppose - I definitely don't have fibro but I did have the tender muscles bit. It took a couple of years to fade altogether once I was on pred. Wouldn't it be nice if they could find definitive markers for them both...

At least they have introduced a label of "Undifferentiated connect tissue disorder" which means there are bits of inflammatory arthritis, lupus, etc etc but not enough of any one to call it that. I don't think PMR comes in one size fits all either - but how you show that I don't know!

Drink plenty - the massage has released the inflammatory substances drom inflamed muscles and now they are making your muscles ache. I have heavy duty therapeutic massage and rarely have sore muscles afterwards - but I've been having it for a long time and am used to it. Lots of people find it happens in PMR - but it will improve.