Massage for PMR

[England05]

Does anyone know if massage helps with the achy muscles. I cannot do deep tissue as that hurt too much but seeing if anyone has any tips..

[Trixiechamp]

Interested to know as my OH has booked me a session with at a "wellbeing hub" and I was wondering what treatment to go for? I was thinking about lymphatic drainage as thought it may help with the effects from the high dose of steroids I've been on?

[Rose54]

Hi

How about Indian head or reflexology even a light massage may cause some tenderness I always find if its too light its not worth having .

Rose

[tkoeh405]

It helps me and I do it about 40 times a year. I also walk most days as well, I have gotten up to 11,000 steps one day a week which was hard for me to do a year ago. I have hard PMR for a little over 3 years.

[DorsetLady PMRGCAuk volunteer]

It may well do, but you need to make sure the masseur is aware of PMR, so as not to be too vigorous.

[Margaret1951 in reply to DorsetLady]

Wish I could have a massage !! Has anyone torn muscles in and around ribs from one end to the other ??? Or is it because of the PMR ??? This is the second time in 7 months !!!!

Must admit my PMR is bad again, I feel like an old woman of 150 !!! Whoopi lol lol

[PMRpro Ambassador in reply to Margaret1951]

Or is it myofascial pain syndrome? There is a pair of trigger points on either side of the spine at about rib level - and they are very good at causing referred pain into the ribs by irritating the nerve supply. The pain can be excruciating!

I'm coming to the conclusion that actually myofascial pain syndrome and PMR are linked - just different manifestations of the same disease. They definitely wax and wane together for me.

[Margaret1951 in reply to PMRpro]

Hi,

If you put your hand on the left side of your waist and press in - the pain is unbearable. I have done a lot of coughing lately with my asthma and pollen allergy and then this happened again.

The last time I had bronchitis bad and Doctor said I tore all my muscles, but not been Doctors this time.

But PMR has/is bad again so going to up preds in morning from 7.5 to 10 mg for a week and see what happens.

I have been naughty and wallpapering my living room which is the wrong thing to do I know, but I don't want this to beat me !!

I am so fed up with it all that it's really getting me down again.

Going doctors next week for next lot of blood tests, but I know in my heart it's not going to be much better.

Why do people like us who do no harm to others get everything and these criminals get nothing !!!!!

Sorry for moaning 🙁

[PMRpro Ambassador in reply to Margaret1951]

I do understand the feeling "I won't let this beat me" - but unfortunately that isn't how to live well with PMR! You have to come to an agreement with it - and wallpapering the living room isn't included I'm afraid.

healthunlocked.com/pmrgcauk......

[Margaret1951 in reply to PMRpro]

I am a hot headed Aries unfortunately, I worked solid till 6 last night and am I suffering today, which has taught me a lesson !

I just cannot understand why after 5 years of both I cannot seem to get below 7.5 mg I am so pleased when others get lower , I ask God why can't I.

My Aunty is 97 and got nothing wrong with her ! Yet we both worked hard on the farm for years. Neither of us get colds or flu.

I just need more encouragement to tell me I WILL one day go into remission. But will I ??

Sorry I am moaning today but so much soreness and pain I need to let it out.

Sorry everyone xx

[PMRpro Ambassador in reply to Margaret1951]

About a third of patients need pred for at least 6 years. I've had PMR for 13 years, so have a few others on the forum. But if you keep overdoing things - you won't be able to get to a lower dose of pred.

[Margaret1951 in reply to PMRpro]

Wow that's cheered me up lol

So does taking it easier mean our body's will be able to go lower doses ?????

[PMRpro Ambassador in reply to Margaret1951]

It may do - what seems pretty clear is that people who have to work need higher doses. But if you overdo it and get sore muscles that isn't necessarily going to respond to pred, it is something different.

You have to learn to live with PMR - and how to work round it.

[Margaret1951 in reply to PMRpro]

I promise to start taking it easier now and hope I start getting a bit better.

13 years for you must feel like a lifetime ! Have you not gone into remission either ?

[PMRpro Ambassador in reply to Margaret1951]

No - nor has polkadotcom. We live with it. I rarely have problems to be honest - but I won't compromise. I take the amount of pred I need - and the doctors here are fine with that. It's thought about 25% of patients have it long term - but 75% have it for far longer than the 2 years they harp on about. 2 years is the exception.

[Margaret1951 in reply to PMRpro]

The hips are because of osteoporosis due to preds, it seems I shall have to have a new hip joint not far into the future , worse on the left .

I have been going 7 and 71/2 mg but not doing that anymore, the 7 1/2 mg I was fine on so need to now accept that for a while.

We live and learn from others.

[PMRpro Ambassador in reply to Margaret1951]

Did you have a dexascan when you first started pred? Unless you did there is no way they can blame the osteoporosis on the pred - it was very probably already there and the pred just made it worse.

7 1/2mg is about the same amount of corticosteroid your body makes naturally and which is essential to life. So since your body doesn't make more while you are taking enough - there isn't much excess floating around. Don't worry about it. But there is no virtue in not taking enough - you have the downsides with no benefits to balance it out.

[piglette in reply to Margaret1951]

Hi Margaret, the orthopaedic surgeon said that my hip has been affected by the pred. Did you mean osteoarthritis in your hip, rather than osteoporosis.

[Margaret1951 in reply to piglette]

Hi, Doctor said it was osteoporosis I had and in my other joints also. He definitely said it has bean causedby the prednisoline .

I was originally on 60mg for ages as the GCA was real bad because I was scared to go the Doctors in case it was a brain tumor !! I had the dexascan last year, never suffered anything in my joints before all this at all.

[piglette in reply to Margaret1951]

Osteoporosis is a side effect of pred. It causes a decrease in bone density. I was just wondering if you had osteoarthritis in your hips as well.

[England05 in reply to Margaret1951]

I have only had it a year and I went through it isn't going to beat me. but I learnt to do things in moderation. I cannot exercise every day but every couple of days. Trial and error, some days I wake up feeling like I am 110 some days not so old. It is what it is and as someone on this blog said you just have to go along for the ride sometimes it is bumpy. I am on 8 mgs and cannot get to 7 hurts too bad so will wait a little longer. You can moan and whine it is ok I think most of us do, but at the end of the day you have to deal with the fact that this is what it is and everyday for me is different. I hope one day that I will go in remission I hope that day is sooner rather than later. Good luck and try to not dwell on the fact that other people are healthy and you are at this time not feeling that great...

[Margaret1951 in reply to England05]

Thank you, don't get me wrong I am so pleased others can get on a lower dose, I think it's fantastic !!!

Perhaps one day they could find a cure, some luck, but that would be great !!

My GCA is not to bad at the moment it is this PMR which gets me down with the soreness mainly.

I take my 2 chihuahuas out 4 times a down in the football field at the back of me, but after the 1st round my hips and muscles drive me nuts but they need the walk and so do I .

I am slowly learning thanks to everyone one on here, I am so pleased finding this forum !!! I just must stop moaning lol

[PMRpro Ambassador in reply to Margaret1951]

Are you sure you are on enough? Even 1/2mg can make a big difference. And are your hips "just" PMR - it could be bursitis. Oral pred often isn't enough - an injection helps more.

[England05]

I do walk everyday as if don't I seem to seize up. Not walking a marathon but it helps me. What kind of massage do you get? tried deep tissue and I could have cried....

[PMRpro Ambassador]

I "do" massage - and the deep stuff! I'm lucky enough that the rheumatologist prescribed it for me to deal with the very hard and spasmed muscles in my back.

Yes it hurts but when it hurts it is showing that there is probably some myofascial pain syndrome present. It is often found alongside PMR and is caused by the same inflammatory substances but instead of them being systemic (all through the body) they are in the fascia (it encloses your muscles, the transparent skin you are familiar with from joints of meat or poultry) and trigger spots of hardened muscle fibres in the muscles. The pain and other problems it causes can be very similar to PMR. The other problem some people find difficult to deal with is that you MAY feel worse before you feel better - because the inflammatory substances are released into your system and sometimes make you feel as if you are having a flare.It soon clears though.

I've already had several treatments - I must be well over halfway through my allocation! But the difference it makes to the back pain is worth every squeak when she hits a really bad spot!

[jinasc in reply to PMRpro]

Eileen

No Bowen, have you switched?

I still use Joanne on and off she has new premises.

Without Bowen I would not be out of that wheelchair.

And so so gentle.

[PMRpro Ambassador in reply to jinasc]

The Bowen would cost a fortune here - and she isn't as good as Joanne! The massage comes on the health service! I still have to pay a bit but she is SOOOOOO good!

I had a session this morning - and she has worked her way down to my bum. The piriformis muscle on the left is particularly bad, the right is hard but didn't hurt quite as much. She commented that "the piriformis is very partial to going into spasm - and it often affects the hips and upper leg". And can cause some very variable effects.

The conversations we've had over the past weeks and the stuff I have read recently make me suspect that, for a lot of people, a very large part of PMR is actually myofascial pain syndrome, they don't just "tend to go together", they are part of the same syndrome. Those people with the worst MPS are the ones who struggle most to reduce their pred.

[England05 in reply to PMRpro]

I have heard people talk on this site about the bowen therapy so will have to give it a try and to be honest when I tried to go down to 7 mg of prednisone it was really painful so am at 8 not nearly as creaky as I was. Now to find a therapist.

[1Purplecrow]

Hi, I found Bowen therapy to be amazingly gentle and helpful. Plus I got a bit of endorphin rush...just feel good and relaxed.

Good Luck, Jerri

[Gaycreasey]

The Bowen Therapy. Very gentle but relaxing way to rejuvenate the flow through your body and enervate those achey muscles. I have trouble with my calf muscles and am due a visit to my Bowen lady next week. Can't wait!!

[Baileyw06 in reply to Gaycreasey]

What is Bowen therapy

[PMRpro Ambassador in reply to Baileyw06]

thebowentechnique.com/what-...

There was a longish discussion in the last week or two about it. Surprised you didn't see it.

[Gaycreasey in reply to Baileyw06]

Like you, I had never heard of it until a year or so ago. This was before pmr. My knees were very painful and moaning wasn't doing much good. I decided not to see my GP because I didn't want pain relief- I already took two kinds of medication for high blood pressure and didn't want any more. (Little did I know what was in store!) my Bowen therapist advertised in our little local magazine so I decided to gjve it a try. The first session worked like magic - no pain and the method was so gentle and relaxing. The therapist uses her hands to find a section of skin that she pulls back and then pushes forward. This releases fluid and enables the body to rehydrate that area. It's much more complicated than that but simply put - it works! I went to her some weeks into pmr when my shoulders and hips were extremely painful. She was able to ease the pain and it lasted for several weeks. I go every 6 weeks or so but if I have a flare I will go for an emergency appointment. Give it a try.

[Baileyw06 in reply to Gaycreasey]

Is Bowen therapy available in the United States

[TooSore in reply to Baileyw06]

americanbowen.academy/ You can look here. There's none listed in my area but I see a Cranial Sacral Therapist which has been helpful for me, particularly in the beginning of my journey. I also have started to get massage. I have someone very well trained on releasing those trigger points. She's always very careful about pain level. Right now she seems to be my best defense against aches and pains.

[Baileyw06 in reply to TooSore]

Thanks for the information 😊

[PMRpro Ambassador in reply to Baileyw06]

bowendirectory.com/

This may have more listed.

[nuigini]

I've had PMR for 3+ years and although I had regular massages before PMR, I stopped because of the warnings that PMR muscles may not tolerate the treatment. Just last month I began having weekly deep tissue massages and am pleased to say the results have been all positive. Unfortunately, that was while we were at our home in Panama. I'm back in Canada now and will need to search out a good therapist. I doubt I'll find one for the amazing Panama rate of $40/hour though.

I was also able to see my Bowen therapist yesterday for the first time in almost a year. She very quickly identified issues with my lower back resulting from a boating incident last August and gave me a routine to correct the problem. I have a series of exercises gathered through many Bowen appointments, which help immensely, IF I do them regularly. If I don't do them for a few days I'm guaranteed of having very bad hips and a problem shoulder.