Walking with PMR

[UmiMck]

I have PMR and have been taking 15 mg of Prednisone. All was going well for 3 weeks and started doing walking. The pain in the legs starts as soon as I start walking and continues for the duration of the walk. Been pushing myself to walk at least 30 minutes with the pain. Now have pain in the shoulders again. Should you try and exercise or lay off till PMR stable on dose.

[Koalajane]

I walk but I did not walk for 30 minutes when I first started. I built up to it slowly. Perhaps you are doing too much

[DorsetLady PMRGCAuk volunteer]

Hi,

Bet you did what a lot do, think that after 3 weeks of being okay, you can return to ‘normal’ or normal-ish.

Sorry, no can do.......your muscles are not as resilient as pre PMR, pre PRED, so although gentle exercise is good, pushing yourself with pain is not.

You need to build up slowly (no matter what you could do before)- and if that means only 5 minutes round the garden or round the block initially then so be it. You can then increase when you get stronger....and maybe leave a day between for muscles to recover.

At only 3 weeks in, although you may feel okay, obviously your system is telling you, you aren’t ready yet.

Just yourself a few days complete rest, and see if all pains recede, if not maybe 15mg is not quite enough for you, or more likely you are trying to overreach yourself.

You might like to have a look at this - including others replies - healthunlocked.com/pmrgcauk...

[UmiMck in reply to DorsetLady]

Thanks. Quite a depressing thought. From being very active to now not being able to walk even a round the block without pain. Will take a lot of mental adjustment.

[yorkieme in reply to UmiMck]

It does take a lot of adjustment. Like you I walked 6 miles a day six days a week,(I live right at the foot of Snowdon,) and again like you when first diagnosed fought it like the devil ............ and again like you suffered the consequences.Sadly for now it's a fight you cannot win,the kind people on here continued to advise me and once I got the message it helped tremendously.

Slowly slowly in everything we do but keep the belied that one day you will get back up your own Snowdon ............. I can still go up on the train and sit at the peak dreaming.

All the very best but don't go crazy and listen to the great advice given on this forum.

[UmiMck in reply to yorkieme]

Thank you for your support My Snowden seems very far away. Sitting down and resting. Trying very hard not to do something active.

[pammy_hyland in reply to yorkieme]

I did do the pig trail once a few years ago and I did it but it was very painful near the top and all the way down and my legs were very stiff for 2 days or so but I'd had PMR alot if years and was and am on a maintainance dose of 4mg..

[DorsetLady PMRGCAuk volunteer in reply to UmiMck]

You will get back to it one day, but for now you have to accept (and we all know how difficult that is, believe me) that it can’t be done. You have a systematic illness, and you need to do things in short, small achievable steps.

Things WILL get better, just be patient.

[Lico in reply to UmiMck]

Diagnosed in June, down to taking 10mg, before this I was very active so at first I found it very hard not being able to do my spinning classes, Pilates and walking. I started back walking around the garden maybe 1 km a couple of times a week, that was all I could manage. I have taken it very, very slowly but I am happy to say that seven months later I manage to do six or seven Kms walking four or five times a week.I have also bought a spinning bike for use at home, don’t use it as often as I would like but hopefully I will in the future . Take it slowly don’t push yourself to much and rest when your body tells you to. There is light at the end of the tunnel, it’s hard to adjust but you will get there.

[UmiMck in reply to Lico]

Good to hear that eventually there is light at the end of tunnel. Doesn’t feel like it at the moment.

[PMRpro Ambassador in reply to UmiMck]

Have a read of this guy's postings - from a wheelchair to Anna Purna IV - albeit a few years later after remission:

healthunlocked.com/user/Ski...

(PMR 2013, Anna Purna IV Oct/Nove 2019)

[nickmits in reply to Lico]

[Lico in reply to UmiMck]

Hang on in there it will get better, it’s so hard at first and even now I am still finding it hard to adjust. I now take each day as it comes, some good days and some bad. I still overdo exercising sometimes and then pay for it the next day, it’s a learning curve. I know unfortunately I will never be as fit and active as I was but I am determined to do as much as I can within my new capabilities as hard as it may be, staying positive is the key. Stay strong you will get there. Good luck!

[PMRpro Ambassador]

In addition to the suggestions above, perhaps you need to speak to your doctor about this possibility:

What you describe is less PMR than potentially peripheral vascular disease which can be part of large vessel vasculitis - an intermediate bewteen PMR and GCA:

academic.oup.com/rheumatolo...

You should ask your GP to refer you to the vascular lab for assessment - but in the interim they could check your ankle/brachial index (ratio of BP between arm and ankle).

[UmiMck in reply to PMRpro]

Thanks for the information. Will check with GP

[PMRnewbie2017]

I used to get this in the early days and my Rheumy muttered on about claudication but never investigated further. My diagnosis was PMR with unconfirmed GCA. As my dose of Pred reduced to 12mg or so it improved and didn't bother me at all below 10mg. But also, in the early days I was taking omeprazole. Muscle pain and weakness is a rare side effect experienced by some. Not being a fan of omeprazole and PPI drugs in general, I stopped them and hey presto, no more cramping and soreness in my legs when I walked. I don't know for sure what was going on and there are explanations for all the possibles but if you have undiagnosed LVV or PVD that does need investigating as PMRPro says. Often though the answers are simple so don't worry too much and don't over do it.

[Mollbhan]

Hello, I was a working forester with my own landscaping business, extremely fit, I went cycling, running, sailing, I still hold many unbroken records from my hill running days. Rheumatoid arthritis reduced me to a wreck, at its worst I could not dress myself, climb stairs or even hold a cup of tea. Now nine months on and taking both pred and MTX I briskly walk the dog for an hour each day, do active gardening work and generally feel pretty good.If you stop excercising your muscles will start wasting, do what you can do free of pain but don't overdo it. Try to keep your body moving without stressing anything.

I know I will probably take a lot of flack for encouraging people to excercise, just saying what worked for me.

[HeronNS in reply to Mollbhan]

Exercise is absolutely essential. However I agree, with PMR we have to be a bit careful as it's easier to injure our muscles, which are actually intolerant of strenuous exercise, and have to pace ourselves. The goal with PMR should be to maintain as much as possible our level of fitness, or improve it carefully if we've lost fitness while waiting for a diagnosis. Competitive exercise, even with ourselves, is not a great idea. Not in early days at any rate.

[Vanlose]

I find the hardest thing is making people understand how painful and exhausting walking is. That and the fear of getting so far, and then crying with pain on the return part of my walk. It is very difficult to know how far is 'do-able'. I've just purchased a little 'under the table' pedal machine. I can sit and pedal for as long as I want without the pain I get from walking. I can also use on the tabletop to strengthen arms! Its helping. I've just reduced to 7mg pred, having been first diagnosed 1 year ago. I was told to reduce pred quite rapidly, which proved to be an epic fail. GP gave different advice to Rheumy, and I am now reducing at a much slower pace. Good luck...let your body rest. It needs time to recover from even simple tasks and activities. Take care

[PMRpro Ambassador in reply to Vanlose]

You have to start with something that seems silly small and then build up slowly until you feel it on the next day, a rest day. Then you go back to the previous level/distance/time and "train" at that for a while. Then you can build a bit more again until you find a level that is enough again.

[1Unknown12]

Hi.It's hard sometimes but as Dorset Lady has said in her first post take it steady. I'm on a low dose of prednisolone (5mg). and struggle with walking. Some days are reasonably good others a struggle. I have just been told to take each day as it comes from a rheumatologist today. A hard pill to swallow when you just want to get back to normal. Everyone's different so pace yourself. Take care.

[nickmits]

Wow mine in excaclty the same as your..im 60 yr old male..15 mg of pred has helped lower half of the body but not the shuolders and neck. Nick

[PMRpro Ambassador in reply to nickmits]

The shoulders and neck could be due to tight upper back, shoulder and neck muscles. That always adds to mine.

[nickmits in reply to PMRpro]

No-- its not -- I tried physio, chiro and accupuncture it didnt help - It's the same kind of pain and stiffness you get in the other parts your bodies from PMR so I kknow it's not what you're talking about.... Is there anything you change your diet that you have found helps?

[PMRpro Ambassador in reply to nickmits]

If physio was exercises then it might make it worse. Chiro doesn't usually work on muscles and I can't speak for acupuncture. My physio does manual mobilisation techniques - the muscle fascia, the transparent skin you will be familiar with from joints of meat, is inflamed and sort of "sticks" - that causes the stiffness of PMR. The whole muscle can become stiff and put strain on surrounding muscles which then tighten to protect themselves. It has always been an integral part of my PMR and sometimes it is nextto impossible to say it is this or this - it is the same inflammatory substances that cause both.

This work links the two:

jrheum.org/content/jrheum/4...

No, diet doesn't really make much difference to my pain and stiffness. Carbs/sugar probably doesn't help though!

[nickmits in reply to PMRpro]

Thanks so much In taking the time to provide your reply is very helpful.I'm a person who love my carbs and sugar over time but from a lot of the research and some of the shows " The Paleo Way" on Prime etc. I've seen definitely we have to conclude that's one of the worst things for anything inflammatory ..I do recommend that is a definite must to cut those out... the bad sugar and the bad carbs to help with any inflammatory condition. Theres a guy out of Canada that has great results with reversing MS via diet and lifestyle-- he has a DOC called " Living Proof" on PRIME and a great web site called MS-HOPE... can his diet recommendations Im sure will help with PMR!!