Muscle strength PMR

Hi their Denise ,I have had PMR 3 years and very very slowly reduced to 4 mg and I am ok ish......... Like other each day is different. Some days nearly pain free others back pain,arms hurt and hips hurt ...but like you I think I have no strength were muscles are concerned ,cannot even oper jars or get up off the floor with out help .i was wondering if our muscles regain their strength or do we have to very gently build them back up again x

Hello Denise, I have had PMR for a year now and down to 8mg from 15.

I am the same feel good some days but if I say just walk around our small local town in the afternoon have aches in my hips and legs for a few days and need to stay in again. I have also had the thought that our muscles apart from the inflammation need building up again but perhaps that's only something we can do once free of PMD and off the pred.

 

Have been diagnosed for a year now, but think I hd it for 2 years before that,I am upset with this forum as I have written on it twice recently as I suddenly had such pain in my right hip and leg that I could not walk, my husband bought me a little mobility scooter as I was complrtely house bound, long story but after 8 weeks and many xrays etc found it was a pinched nerve in my spine, had the most painful lumber block injection and am 70 per cent better, I was so frightened thought I was never going to walk again wondered if anyone with PMR had ever had it, no one replied to me.

 

Denise, I know what you mean about suddenly feeling pain-free (or almost) only to be hit with returning muscle pain.  I can remember a similar experience when I was on an even lower dose than you and was feeling very on top of PMR/GCA.  Following a meal in a lovely riverside restaurant one day, we decided to enjoy a riverside walk.  That enjoyment was very short-lived with the sudden return of pain in my lower back and legs which saw me hobbling back to the car, imagining a major flare and feeling very sorry for myself.  However, a couple of days later after resting up I felt much better again.  No matter how low we get on the steroid dose, we will be reminded when we try and push those steroid-weakened muscles, even if the inflammation is well under control.  Although the manual techniques of physiotherapy are contra-indicated in PMR, when you reach these very low levels of treatment certain techniques can be helpful.  At around the 3mg level, I experienced sudden intense pain in my right shoulder blade and upper arm area preventing me from sitting back against a chair.  I found an excellent physio at our local community centre who found several knots which he treated with gentle massage, heat and ultrasound, and after several treatment I was pain-free.  The steroids do weaken our muscles so they will complain when we try to use them more.  The muscle strength in my legs in particular took much longer to return to normal - in fact, it took many months post-steroids for the stiffness in my knees and ankles to completely resolve, in spite of daily walking.  But then it is well known that it can take our bodies up to a year after coming off steroids to totally recover from the onslaught of this illness and its treatment.

It is very frustrating.  The rule is slowly and gently - the old adage 'there is no gain without pain'  is incorrect as any good physio will tell you.

Start walking every day, start with just 10 mins, there and back and put the time up slowly day by day.

Don't sit down for more than 1 hour at a time, just get up and move even if it is just across the room. And that applies when sitting in front of the computer.  Use an alarm clock if necessary.

One thing that has helped many people is Bowen Therapy.  It is well worth giving it a try.  Yes, it means paying for it, but the best of it is that you book three sessions in consecutive weeks and if it is not working for you within that time, the therapist will tell you.  So it is not a money making machine.  I finally gave in to some nagging and tried it as I was heading back to a wheelchair - white witchcraft - as I call it worked for me.

If you can find a Nordic Walking class, that can help enormously as long as you tell the instructor you have PMR. 

Tai Chi, but you need the right sort of Tai Chi.

And finally, yes PMR does go into remission but remember you are that much older so your whole body has aged.

I do know men who have been younger ie in their 50's who have gone back to marathon running - something I could not do ever.

A member of one of the support groups, started a ' gentle walking group' who meet once a week and end up in a cafe. People without PMR but who are friends also join in, the emphasis is on GENTLE.

I would suggest this could be due to the dose you are now at and your body not having quite caught up! Combined with doing a bit more than you think on that really good day.

The feeling of a lack of power in your muscles is something I've struggled with ever since the PMR started - but it is improving now I'm on a low pred dose. Whether I'll get back to being as strong as I was before PMR I don't know - I've had it for 10 years! However - one of the things I feel very strongly about is that we should be assigned to a physiotherapist right at the start to be given light exercises to keep the muscle tone up during the course of the illness and while taking pred. 

There are simple exercises we can do but using very light weights and few reps to start with, building up VERY slowly - as MrsO and Lodger have emphasised.