Muscle pain, REST or EXERCISE?

Bones, joints and muscles
1

Dear All.

I am hopefully recovering from my PMR nightmare (Now on 2mg and counting) and having read many posts about the many sufferers being in the dark about their condition and whether they have PMR there was one aspect of my pre steroid condition that I am sure must be common to many sufferers.

I had mainly severe shoulder and knee pains and although taking painkillers to get through the day I was unsure whether to rest to relieve the pain or whether exercise would make things worse.

A hot bath had no beneficial effect and I am now of the opinion that if the muscle pains are PMR related then muscles will not be harmed by any exercise. It is my personal opinion and is not scientifically based that PMR muscle pain does not affect muscle strength but somehow causes pain in the joints when the muscles are exercised. If you can stand the pain a workout will not harm you.

I recall informing my consultant I am in excruiating pain with this (Pre steroid) condition but I could give you a good arm wrestle but would be in great pain in the process.

Best regards,

Jim

2

Jim

\"If you can stand the pain a workout will not harm you\".

Jim, that is so not the case with PMR.

I was told by a rheumatologist that if my diagnosis turned out to be rheumatoid arthritis then I should exercise but if it was PMR I should rest. I have personal experience of overdoing a long walk once where there were no seats when the pain worsened which resulted in a massive flair in both symptoms and blood test markers.

Also contrary to you finding a hot bath of no benefit, I have always experienced relief from a warm shower, maybe not lasting relief but relief nonetheless.

It has oft been mentioned that men can have an easier ride with PMR but we have only recently heard of one man who overdid the window cleaning and payed heavily for it afterwards!

I'm sorry it sounds as though I disagree with all you have said but it's so important for any new sufferers \"looking in\" to have the real facts.

I do wish you well on a continuing smooth recover.

MrsO

3

Hello Jim..... I too do not wish to dispute what you have said because we are all different BUT I agree with Mrs O and also my physio has been adamant about gentle exercise and certainly not when in pain and when pain does start to stop immediately and rest! Otherwise damage can be done :roll: :roll:

I am 'allowed' to do some gentle swimming three times a week ( haven't started this yet) and walk a little each day.... I do the walking but on bad days cannot even get to my local shops which are only a five min walk away :roll: I certainly listen to my body and don't push it it all.

Am learning the need to rest, something which is hard as I, like most of you, was very very active prior to PMR ....... I want to be free of this disease when my treatment is over so am listening to all the advice I am given and following it very carefully.

I hope you are not doing yourself any long term harm by pushing through the pain :roll: :roll: I would urge you to exercise more caution.

4

Hello

Im with Mrs O on this one

I have had PMR twice and have found that if I exercise too hard my muscles do suffer I was pretty fit before it all started so feel I can speak as a \" proper exerciser \" Horse Riding , Gym , Aerobics etc Also when my PMR was at its height there is no way I could have got out of a bath !! I remember having got as far as all fours and crying with pain trying to haul myself the rest of the way out !! Showers now and I find warmth does help

Steroids do damage your muscles , or cause wastage and I am at present on a bit of a rehabilitation campaign with going to an exercise class designed for people who have health issues and Nordic Walking When I did try and carry on with my normal exercise regime I was getting pulled muscles which I hadnt got pre PMR

I feel gentle exercise is great and any mobility is good as sitting in a chair constantly will not help but anything where you feel the pain I personally feel doesent help as I am now having recurring problems with a muscle I strained at the back of my knee well over 12months after it happened As you get older I have found the damage you do to your body doesent seem to want to repair

We had a friend who couldnt cope mentally with the diagnosis of Rhem Arth and worked and worked physically until he would collapse and he has done so much damage to his joints because of this

We are all different how we cope with things but along with Mrs O I find if I overdo it I really suffer

Best wishes

Mrs G

5

Hi Jim,

It must feel like all the ladies are \"ganging\" up on you...but I have to agree with them.

I had a lot of muscle wasting when I first started on the steroids and a friend who is a physio gave me some gentle excercises to do with light weights....but stressed that if it caused any pain, I was to stop and leave things as long as necessary to settle.

On good days, I get out for a decent walk and do some weights for my biceps.....but on the bad days I can barely lift a bag of groceries out of the car and a work-out would simply not be an option :cry:

Yes...I would dearly love to be able to do more as prior to PMR I played 18 holes of golf at least 3 times a week and walked several K's everyday, but as I had a couple of flares last year, I am now in \"Don't rock the boat\" mode :roll: :wink: .That said, we are all different, so if your work-outs help you its great....but just be careful and don't over-do things as it would be a shame to aggravate your PMR when you have got this far in your recovery.

Best wishes,

Pauline.

6

Jimplus3: So now I'll heave in here with a bit of science! :lol:

Although there is a lot of dispute as to the actual cause of PMR, it is known that it is very likely that PMR and GCA (giant cell arteritis) are related and if you have one, you may develop the other. GCA in its pure form is very rarely accompanied by the muscle stiffness experienced in PMR but if certain arteries are affected you do get claudication in other areas besides the areas supplied by the tempoal artery which is where everyone tends to think of GCA occurring. Claudication (from the Latin meaning limping) is used to describe the pain that is experienced in muscles when the blood supply is not enough for the amount of exercise being expected of them. It is usually found in patients with peripheral vascular disease (diseased blood vessels in the legs and sometimes arms, very common in smokers and diabetics) and got its name because it makes the sufferer limp after walking, eventually having to stop altogether until the pain in their calves subsides and they can resume their walk. The worse it is, the shorter the distance that can be walked, especially at speed or uphill. When it is really bad you may only be able to walk 100 yds or even less.

On the other hand, in PMR it is common for the biceps to be affected and repeated activity such as bicep curls or maintaining a position (such as holding a phone to your ear) becomes painful. Some patients find their thigh muscles are affected, making climbing stairs painful. That was how I presented - I suddenly started to get excruciating pain in my quadriceps when using the crosstrainer at the gym after a couple of minutes. At the time, stairs were difficult but it was not until the PMR got very bad that I crawled upstairs on hands and knees.

You are quite correct in your assertion that muscle strength per se is not affected in PMR - it is the accompanying pain that makes it difficult to grip things. There is also often a degree of tendonitis and bursitis (as in housemaid's knee or tennis elbow) and the pain from these inflamed tissues can also be excruciating. Sometimes the shoulder stiffness also incorporates a lot of shoulder joint pain leading to a misdiagnosis of rotator cuff damage or simply shoulder joint bursitis. If it is then treated with a cortisone injection (which is one of the treatment options) a diagnosis of PMR may be made because other painful muscles suddenly improve. Studies have shown there is a degree of bursitis in various joints in PMR, even if the patient is not actually complaining of that, but the cost of using the necessary diagnostic imaging (usually MRI) on everyone would be prohibitive. However - taking steroids DOES sometimes lead to muscle weakness and wasting. That's different.

It is very likely then that the muscle pain and stiffness in PMR is actually due to an inadequate blood flow in the capillaries (the smallest blood vessels that join the arteries and veins and look like the branches of a tree) and this means that not enough oxygen and nutrients gets to the muscle when it sends a message that it is working and needs extra supplies. This should lead to the blood vessels getting bigger so more blood flows into the area - but they are damaged and are unable to respond. Furthermore, the waste products are also not being removed and so there is a build up of lactate in the muscles and this isn't a good state of affairs. Athletes talk about the \"burn\" - and that's the same sort of pain that claudication leads to.

For years there have been gym instructors shouting to work through the burn, \"no pain, no gain\", encouraging clients to exercise to extreme levels of pain. It's rubbish and any instructor who still does it needs to go and do some reading and get up to date. Professional athletes do all sorts of things to aid the breakdown of the lactate after their marathon or whatever sport they do - including standing in a wheelie bin of ice wate

7

Well said Eileen, and as usual full of info',

no need to say any more.

Hope today is a good one for all looking in, Julia smile

8

Jimplus3

I am not going to repeat anything that has been said in all the posts. I am one of those active people, who ended up with a Blue Disabled Badge and an Attendance Allowance and I can assure you I was never a couch potato.

What I do suggest you do, is scroll down and find the thread on Vit D.

Read it and then decide whether you want to ask your GP for a specific Vit D test. Vit D deficiency can mimic pmr symptoms, which is why it is included in the tests for PMR (Guidelines under useful medical information on www.pmr-gca-northeast.org.uk).

Jimplus3, what you need to know and remember is that currently there is no known cause or cure for PMR and GCA. Scotland had the first dedicated charity to seek cause and cure and also friendlier medication, then last year the rest of the UK gained a charity, with similar aims. Lots of people are working to try and set up local groups and help people and ensure that research is being undertaken. There are 800 'orphan' illnesses and these two are included.

Have a look at the Scotland Website and the National Charity website.

Come back and let us know how you get on. And Good Health in the future.

9

I think the exercise v rest question is a difficult one and I do have some sympathy with Jim's proposition. Having said that I also think that \"nothing too much\" is a good pprinciple.

I am not the only one on here who has remaked that she often feels better after quite vigorous effort than on Sundays spent lazily reading the papers.

Today I had to walk much further than I have attempted for months in order to get to my dentist. I was slow and it hurt but now seven hours later I feel no worse than if I had been dropped at the door. ( double yellow lines and no badge ).

But there are days when I just feel too low to make any effort. Should I push? I don't know. We are told that steroids do not cure PMR. But what does show it the door?.I don't know that, either.

And then, did we bring this illness on ourselves by being the sort of people which so many on here do seem to be, who all their lives have lived a thirty hour day, eight day week?. Maybe research will give us the answers one day but they won't be the same for everyone, of that I'm sure.

:sheep: :sheep: :sheep: :zzz: Good night everyone. BettyE

10

I haven't said DON'T do exercise - I've said you have to build up to it bit by bit and know what you can do. It's a bit like a steroid dose reduction: dropping from 15 to 10 overnight is probably asking for trouble, taking 2 months to get to the same place via 15/12.5 and 12.5/10 mixes of pills will work much better in that there will be less agony on the way and longterm success is much more likely.

It is extremely likely that graded increases in suitable exercise will prove to be an armament in the management of PMR - it is already known that it provides an excellent alternative to higher drug use in diabetes and some other metabolic diseases. However - the emphasis is on suitable as it is possible to fall into the trap of doing too much or the wrong things and make the underlying problem worse.

EileenH

11

Hello everyone Great information in here

I do a little exercise when I feel up to it and stop if I can't manage more

12

Hi all

All I know is that recently, since being on 2.5mg every day, I have been feeling slightly achey in my upper arms and legs in the morning. However, on the mornings after I've been to an aerobics class the night before, I haven't had any aches! How strange - most people feel stiff after that level of exercise (I really go for it! - I've never been one who can put up with other people doing something better than me!!). It's just a bit weird.

Beev

13

Hello everyone

Blood flow is somewhat restricted in us people suffering from PMR and/or GCA and I guess when we are at the more comfortable stages of being able to exercise more, then following such exercise the blood is pumping through more efficiently thus improving aches and stiffness. I certainly always feel more energised after my walks and after Tai Chi. :D

14

Sparklin

When we started our group meetings, we had and Exercise Instructor along and he did a demonstration and had us all doing it as well, which was a laugh.

However, he wrote a article on Exercise for PMR patients. This article can be found under Health and Wellbeing on the PMR&GCA North East Support website.

I sometimes wonder if you are all fed up of being told - its on that website.

But even I found it very helpful and the Medical Profession do say, that it you can get up to walking 45 mins per day, it will do you the world of good, even if you can do nothing else.

15

Hi everyone

Im new to this forum and im new to PMR. I was diagnosed by my gp about 3 months ago after suffering months of pain. Every morning i would wake up feeling more like a 90yr old than a 40yr old every muscle in my body ached, as though i had done a good workout in the gym the day before. Walking for any distance was impossible with out being in constant pain and the general feeling of not feeling well was driving me insane. So i trooped to the gp and told him everything about how i felt and after numourous questions and stretches etc he told me i had pmr. i havent had the blood test so certain was he of his diagnosis and im now on tablets. What has that got to do with the exercise or rest question i hear you ask....lol...well i work in our local hospital and the nature of the job means im walking all day, other than on my break, and i find that after i have rested i hurt so bad i can hardly walk. It makes it almost impossible for me to enjoy doing anything after work that involves exercise. When i have done then i know the consequences will come back to bite me on the bottom. So now i personally avoid exercise other than the walking i do at work just to avoid the pain i know i will suffer. Although if anyone wants to massage my weary limbs feel free because some days i feel thats what i need to stop the aching.xox

16

Hello AliBear

Sorry to hear of yet another member of this PMR 'club' where we're all reluctant members. Although a little walk every day, whether we can manage 5, 10, 15 minutes etc depending on what sort of day we've woken up to, is very good for us, it sounds as though you're already doing far too much of it in these early days following diagnosis. Thos of us who had retired prior to succumbing to PMR never cease to be in awe of those of you who are young and still working. Is it possible for you to take sick leave to give your body a chance to recover somewhat and the steroids a chance to get control of the inflammation? Many people have found that they had to do that before they started to feel better, or at least reduce their hours for a short period. On the subject of massage, if you can find a physiotherapist who understands PMR and will treat you with gentle massage and heat therapy, that can really help - only gentle massage though, any pulling about of limbs is contraindicated in PMR. I do hope you start to feel better soon.

17

Hello Mrs O

I start work at 9am and finish at 3pm i get 30 mins break and the time not on that break is spent on my feet. I wish i could take time out but unfortunatly i cant so i spend most of the day in pain. Most mornings i struggle getting out of bed let alone work .Before having a name for this condition i honestly thought i was going mad. Always moaning and whinging about how much my body ached and the fact that resting made me feel worse. Today has been a really bad day for the pain neck, back, hips and even my arms today hurt. To look at me i dont look ill but i certainly feel bad.

My gp has put me on naproxen instead of steriods because im trying to loose weight and he thinks it will help. I take 5oog 3 times a day. it doesnt take the pain away but it does sort of take the edge from it as for the massage i wish i knew some one who could do it and understood the condtion.

Am i imagining the pain and the aching and the tiredness? i feel like ive been the gym and been put through my paces and that pain wont go away. is this how everyone else feels with this condition or is it me going mad?

xox

18

Hi AliBear and welcome to the forum.

Let's go backwards: no you are not imagining the pain, aching and tiredness and, yes we all felt like that at the start when it began. Some of us couldn't get out of bed - I certainly wouldn't have managed a job on my feet, I couldn't stand long enough to do the ironing or prepare a meal. I was only able to work because I work from home as a translator and as long as the client got their stuff they didn't care if I was up and dressed or lying in bed doing the translation. But after sitting at the computer for more than a few minutes I could barely get to the loo. I had a choice of remaining upstairs where I could get to the bathroom or going downstairs where I could eat and drink - stairs? I did them on hands and knees. MrsO on here was ina wheelchair. The difference afterwards was that we accepted steroids. I didn't get a diagnosis for 6 months, MrsO for over a year. It gets worse when left untreated as the inflammation increases - until eventually you may develop GCA (as MrsO did) when there is no choice - to put it plainly: it's steroids or risk going blind.

If you have PMR then naproxen won't do much at all - we've all been there and not wanted to go on steroids but the quick answer is: only steroids will allow you a decent quality of life. The pain etc is caused by inflmmation due to an underlying autoimmune disorder that causes your body's immune system to attack itself. If the inflammation is dealt with, so are most of the symptoms although some people don't become totally pain free and the fatigue doesn't always disappear for some considerable time.

Over and above the poor quality of life you have without prednisolone, you leave yourself at a higher risk of developing GCA. Even with treatment with pred, 1 in 6 patients with PMR go on to have symptoms of GCA (giant cell arteritis), without pred the rate is even higher. As I said - GCA means steroids are unavoidable, and at a far higher dose than for PMR where 15mg/day will achieve a miraculous result (if it doesn't it possibly isn't PMR) but GCA needs a start at 60mg or sometimes even more. You don't remain at 15mg by the way - you reduce slowly to find the lowest dose that controls the symptoms although for the best results you need 3 months to get down to 10mg and then stay on 10mg for a year - but after that you should get to a lower dose.

Let's deal with a myth or two now: not everyone puts on weight with pred - my weight gain at first was due to the inability to move properly and exercise. I had PMR for 5 years pre-diagnosis because my blood tests weren't showing anything, they never have. Then when I was put on pred I didn't gain - the weight redistributed until my version of pred was changed when I moved to Italy. I put on more weight then and, in fact, the type of pred I was on didn't work for me so I needed a much higher dose to achieve any relief. When I was switched to a third type, a newish version which is taken at night (so it works at 4am without taking the tablets at 2am which is the best time to take it to avoid morning stiffness) I have steadily lost weight, 26lbs to date. But on the "other forum" (the PMR and GCA UK Northeast support group one) four of us have lost similar amounts of weight over the last year whilst still on just under 10mg pred - two using Weightwatchers and 2 the 5:2 diet or a version of it. It isn't that easy I grant you - you have to be very strict with yourself and keep the carbs down. Other people have either never put on any weight or even lost weight. It depends - there are over 80 documented side effects, noone gets them all, some people get very few and minor ones.

As for osteoporosis, only 40% of patients on steroids develop it. Patients with PMR who don't take pred are very immobile - and that is actually the biggest risk factor for osteoporosis. I, and several others on the "other forum", had a dexascan early in our PMR careers which were near enough normal for our ages. After 4 years on pred, I had another last spring which was as near identical to the first as it is possible to say. The majority of bone density loss is in the first 3 months of pred - probably because the dose is higher then. PMR used to be treated by starting at a much higher dose, usually 30mg. Then it was realised they got nearly as good results and far fewer side effects by starting at 15mg or at most 20mg if necessary. The response overall may be a bit slower but within a month almost everyone has done so.

There's a lot more I could say - it would take all day - but my final point is that naproxen is not a non-risky drug either despite the perception that pred is evil and NSAIDs are innocent little painkillers. They aren't. One lady on the other forum was put on ibuprofen, an OTC product, and in 3 days she was in hospital after a gastric bleed. Naproxen claims to have fewer cardiovascular effects (heart attacks and stroke) but it still causes gut problems.

It's your choice - but believe me, if you want a decent quality of life and it really is PMR it is worth trying pred. Because apart from anything else, whilst the PMR dose of pred won't necessarily prevent progression to GCA, it WILL reduce the likelihood.

And the other forum has a lot of info - some of which used to be easy to find here until they changed things last year and a load of old posts became pretty much impossible to identify - so come and join us there. You can google it or at the top of the PMR thread here there is a pinned post with links to take you there. If it doesn't work first time keep trying because they are doing "roadworks" over there now and it has attacks of being slow to impossible to get on.

Eileen

19

Hi Eileen

Thankyou for all that information. I'm still trying to get my head around all of it ut I'm getting ther. I can relate to alit about the toilet mine is downstairs and I dread waking in the night to go because I'm so scared of falling down them. Slowly I'm beginning to realize that the naproxen aren't working like I want, which is to be pain free, so I will be going back to my gpWork is extremely painful most days for me but a grit my teeth and get on with it. Today I've really struggled to get round(Saturday) not doing what I wanted to do but I'm like this every weekend. I could cheerfully cry with it most nights but like I said before somedays I think I'm imagining it. All I want is to be my old self, that may sound melodramatic but It's the truth. I've read the information about pmr and it says it strikes in late 50s and I'm only 41 are the websites wrong?

I would be grateful to know I'm not going mad with this.xxx

20

The guidelines now say "over 50", they used to say "over 55" but there are people in their 40s that we know of with definite PMR (inasmuch as that can be said - typical clinical symptoms that responded dramatically to pred) and the youngest patient in the medical papers was 26! It's more the majority of people are well over 50, the average age at diagnosis is 73 and half of 80 year olds will have it and that makes the average higher.Personally, I suspect there are a lot more out there who are under 55 but PMR wasn't considered as a diagnosis but they were fobbed of with "it's your age", "fibromyalgia" or "all in your mind" and we've got quite a few who've experienced that last attitude from male doctors.

However - since your doctor did no blood tests and didn't try pred it COULD be something else and he needs to have a few checks. PMR is what is called a "diagnosis of exclusion" - that means you rule out the things that can cause similar symptoms and CAN be tested for in various ways. Then, with a suitable clinical picture and a dramatic response of improvement in the symptoms of about 70% to 15mg/day pred within a couple of days, he can say "PMR".

Something else that they should also look at is your hormones - something very similar to PMR can be found in relation to the changing hormones at the menopause. There is a thread on this forum somewhere from a lady for whom HRT made a dramatic difference after pred didn't do a lot - she was lucky, the practice nurse saw what pain she was in getting onto the couch for a smear and after some questions told her which doctor to see (a lady who knew about it).

If it is PMR you won't necessarily be pain-free on pred either - it is a chronic form of rheumatism that requires some lifestyle changes too but pred makes a big difference and allows a fairly decent life for the majority. Most of us are retired, I work but not standing or other heavy stuff - sitting at the computer was bad enough sometimes until I was given pred (after 5 years). Since then it has been walking that has been the bugbear but that is improving now after a difficult year with other problems as well last year.

I can't remember - did I give you the reference for the Kirwan paper which is aimed at GPs who do struggle with diagnosis and management of PMR? I've looked now and the answer to that is no ;-) but if I give you the link this post will disappear. So here is the title of the paper:

Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis by V Quick and JR Kirwan

When I copied and pasted that into google it came up as the second "find" (with rcpe in the ref) - click on that and it will load so you can read it or print it off. It isn't particularly difficult to read the majority (sorry if I sound patronising but I have no idea what your background is in the hospital). You don't need to worry about the statistics (makes me yawn too) but there is quite an impressive graph which shows how symptoms improve dramatically after you are given 15mg pred and come back the same when it is stopped after a week if it is simple PMR, improve a little bit if it is a couple of other things and the pred has no effect at all in yet others. It also gives their "tried and tested" reduction scheme as information for GPs faced with such patients.

It is aimed at GPs, as it says at the beginning. I would print it off and offer it to your GP. Kirwan maintains that giving a week of vit C, a week of 15mg pred and then another week of vit C will distinguish most cases of simple PMR. Why vit C I have no idea unless they have tablets that look similar so the patients don't know what is what - the improvement in symptoms must happen within 48 hours or so of starting pred. If it is psychosomatic (in the mind) there might be an improvement with the vit C - just because they are being treated with something. It is a diagnostic approach any GP can try without sending their patient to hospital to a rheumatologist.

The state you are in at the moment can't go on - you will simply end up having no life at all. Life that is all work and pain is not worth having - and one of the other aspects of PMR is depressive mood: it can be part of PMR anyway, chronic pain will lead to depression too as I'm sure you know.

When I started on pred I took the first dose at just after 10am after picking them up from the chemist - much later in the day than you should really - and at about 4pm I got up from the computer and walked downstairs normally and with hardly any stiffness for the first time for months instead of like a toddler, one step at a time hanging onto the handrail. It can be that dramatic - it didn't remove all the pain, I had tendonitis and bursitis too and that took several months to near enough disappear, but it did get to a livable-with state quite quickly.

Do let us know how you get on - if your GP is difficult, try another one who will listen. They can manage you themselves on the basis of that paper without sending you to hospital if the "check" using pred is clear. Otherwise they need to look for something else. Either way, you need something concrete to be done.

Eileen