Muscle pain, REST or EXERCISE?

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.

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

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.

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

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

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

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

Hi all

I was interested to read the article, Eileen, and also to see they have a specialist clinic in Bristol. I am having problems at the moment with the return of some symptoms while on a 2.5mg/ 0mg regime. I get a sore neck, some upper arm/shoulder stiffness and a bit of discomfort around the hips when I get up from a seat - also feel not as lively as usual. The stiffness seems to come on after about 36/ 48hrs after the 2.5mg dose then improves the late afternoon of when I have taken the next 2.5mg dose. The stiff neck has been since I dropped from 2.5/2.5/0 (3 day regime).

I have made an appointment to see my GP on Tuesday and think I might request referral to that Bristol clinic. I have never seen Rheumatologist at all about it and would like confirmation of the diagnosis among other things.

Beev

Hi Eileen

If this isnt pmr then i would love to know what it is.

Yesterday i went out for the day with my other half and spent most of the time at our destination on my feet when all i wanted was to rest. My neck felt stiff my hips throbbed and everywhere in the middle just plain ached. i was tired most of the day and would gladly have swapped to spend the day in bed but instead i went out. Maybe im just stubborn and dont want to let it get to me or im just stupid for trying to do the stuff i did before all of this pain. Now this morning im really suffering and i could cry to be allowed to rest but instead im off to work, my neck feels worse than yesterday and can hardly turn it, my hip and lower back i would love to detach to stop the pain and i ache all over. Feel like a good massage would help to ease it but in truth it probably wont.

As for my mood all i want to do is cry and i spend most of my time moaning. ive taken my medication but in truth i know it wont help me. They dont when i feel this bad.

how do you cope with it? have you an advice to make it easier?

Sorry to whinge at you but i feel like no one understands how i feel.

xox

Beev - to be quite honest I think you are unlikely to get much out of a referral to any rheumy at this stage - even Bristol. You've been treated with for PMR reasonably successfully for a long time and you have got down to a low dose. Didn't you have a period without pred before and then go back on? I think it is more likely that you still have a very low activity of the autoimmune problem and as a result need a low dose that is marginally higher than you are currently using and if it were me I'd take 2.5/2.5/0 very happily! If I ever get to 5mg I'll accept it gratefully.

Lets face it - it is difficult enough to give a definite diagnosis when you have a patient with all the typical symptoms in full bloom and positive blood results. Bristol's basis for a firm diagnosis is that the patient's symptoms respond quickly to 15mg pred and return in a similar time frame on stopping the 15 mg/day dose. You can't do that - your symptoms are too vague. They request the GP does nothing prior to the first clinic visit - you certainly wouldn't qualify there.

It's been mentioned before that there are a few experts who suspect a small degree of adrenal "weakness" may be present. It has also been talked about the fact that a small number of patients require a very low dose of pred for a very long time, sometimes for life. These two things are possibly connected. A couple of people found it difficult to get off 1mg/day - and you are taking more than that even taking your tablet on alternate days. Your drop from 2.5/2.5/0 to 2.5/0 was actually a 25% drop - way over the 10% rule.

I know you have always needed the enteric coated tablets and that does complicate making tiny reductions - is it impossible to try using ordinary tablets together with a PPI for stomach protection? Then you could have smaller doses per day. Or might 2.5/2.5/0/2.5/0/2.5/2.5/0 repeated work? That sort of takes you from 7 tablets in 10 days via 6 tablets in 10 days to your current 5 tablets in 10 days which isn't quite enough. I say "sort of" because I should have written it over more than 10 days to get the figures right.

The effect of pred lasts for up to about 36 hours which fits. Enteric coated takes longer to be absorbed and work which is why it takes to the afternoon to feel the benefit.

The only other suggestion I have is to ask your doctor if he is prepared to try you on Lodotra. You take it at 10pm before going to bed and is effectively enteric coated. It has a different coating which is resistant to gastric acid so that it doesn't disintegrate for 4 hours (so it is further down the gut like enteric coated) and allows the blood pred level to be at its highest at 4am which is when the inflammatory substances in the body are released. It comes in 2mg and 1mg tablets so you would be able to take 2mg/day and then use the 1mg ones to try to get a bit lower in the same way you have already done.

Eileen

AliBear - "If this isnt pmr then i would love to know what it is." Exactly my point!!!

The quickest way to come to that basic conclusion is to ask your GP to try you on 15mg/day pred, all taken in one single dose in the morning (that is important, for PMR you don't take pred in divided small doses). If your symptoms almost disappear as if by magic that is fairly conclusive evidence that it is PMR - and whether you like it or not the only effective treatment for PMR is pred. Whether or not you choose then to take pred to give you a better quality of life is your decision. If the symptoms don't get very much better - then you need a lot of tests to find out what it is.

Eating a fairly extreme diet which is vegan and contains a lot of anti-inflammatory foods has been claimed by one or two people to work in PMR - it certainly can help with joint pain in rheumatoid arthritis, but it is very difficult to stick to long term and is fairly expensive and time consuming to prepare. One lady I heard of decided she'd do that and put life on hold until the PMR went away rather than "take that pred poison". I suppose if you don't need to work for a living that could be an option. OTOH - I've had PMR for 9 years, it started when I was 51 and despite the first 5 years merely being a bit of a pain (it was livable with as long as I did aqua aerobics every morning and Pilates a couple of times a week, I was self-employed and could afford the gym so it was an option) I feel I have lost a lot of "me" and my life over the last 10 years.

But how do we cope with it? Well frankly - we take prednisolone. If you want QOL it is about the only real answer. And for many of us, we have also had to accept big changes in our lifestyle. Whilst most of the ladies I know are retired or self-employed so don't have to get to work by public transport early in the morning when the PMR is having its worst effect, there are some others who still work and they struggle to be honest. Others had just retired or were about to retire when PMR struck and their plans for retirement had to be radically changed.

One friend has a daughter who works on cruise ships - she could have very cheap cruise holidays. But she simply isn't physically able to go. Others have had to change their gardens or get assistance. One lady and her husband were looking forward to long haul flights to climb in South America and other such places, their hobbies were rambling and bird watching. Plans to provide childcare for the grandchildren had to be abandoned.

Even with pred the fatigue often remains a problem for quite a while - and so you have to learn to manage what you have to the best advantage. This is a chronic form of arthritis - it doesn't kill and it doesn't damage joints like rheumatoid arthritis but it does affect what we can do. Google and read the Spoon Theory by Christine Miserandino to get some idea of what I mean in a picture format and it may help others to understand your limitations. Another aid for you and them is the DVD "You are not alone" produced by the PMR and GCA UK Northeast Support group and available through their website for a small charge and which explains in simple terms what PMR is and the effect it has.

You can accept this is where you are and arrange life accordingly or you can fight it tooth and nail and refuse to "give in". If you do that you will use so much energy and be so bitter that life will be even worse and you will hurt the family and friends who are around you. If you are lucky, the PMR will go into remission and you will not need to take pred for ever to feel reasonably well. Some doctors will try to tell you it will all be over in 2 years - well, it might but that is the best scenario. More likely is 4 to 6 years to be perfectly honest.

I'm sorry - this must sound harsh and disappointing but there is no point me gilding the lily. If you have PMR, it won't disappear next week, pain killers won't achieve a lot and the thought of taking prednisolone is scary. But it isn't as bad as it sounds and if you try it and it works you are in a different place to this week. You will be able to do a lot more. But in the meantime what you need is rest - not spending the day out on your feet and making yourself feel even worse.

Eileen

Eileen firstly i want to thank you for all of the information you have given me its more than i got from my gp, he told me i had pmr and gave me the naproxen. I had to google what it was to even have a clue about it. I will be going back to see him and ask for the other med.

I do find the pain worse in a morning and getting to work takes all my energy may have to see about sorting something out with work although that could be an interesting conversation. maybe take some time off and see what happens.

Thanks again for your advice its been a godsend.Will post when i have some results.xox

Good morning AliBear I just wanted to wish you well in your journey

Hi Eileen

Thanks again for taking the time to think all that through for me. I agree that my journey with PMR has been a lot easier than yours. I did nearly stop pred - am trying to recall when that was - possibly 2 years ago. My ESR plummeted to 7 then flew up to 37 a couple of weeks later. I've never understood that unless one was a false result from the lab.

I am seeing my GP tonight - she is much better than the male GP I used to have (you might remember his rudeness?!). I already was taking Omeprazole even before the PMR started - about 4 months before and have always wondered if the stomach inflammation and PMR were linked. Anyway I now have mild bronchiectasis which the specialist thinks MIGHT be due to stomach acid due to the position of it. So, I am loathe to mess around with uncoated Pred in case it flares my stomach again.

I knew that I was doing a 25% drop which is a worry and I think your idea of 2.5/2.5/0/2.5/0 is a good one. I expect I will do the slight increase and in a while do that.

What is this Lodotra? What are the side effects?? Fewer than Pred???

Are you still in Italy? I retired last Xmas and am enjoying retirement - no regrets. My Golden Retriever puppy is more of a pickle than out previous one and, although we are enjoying him, we do feel we should have got a smaller dog at our age! He is very powerful.

All the best

Beev

AliBear - most GPs know next to nothing about PMR and what they do know tends to be the optimistic stuff like "it'll be over in a couple of years"or "only old people get it" - which is really not entirely true.

Beev - Lodotra is a form of prednisone which is designed with an outer coating that takes 4 hours to disintegrate. Research showed that the optimal time to take pred to prevent the morning stiffness found in rheumatoid arthritis is 2am so that the highest blood level is obtained at 4am, just before the substances that cause the inflammation are released in the body. Noone is going to set an alarm to do that so a German company developed this form of pred which can be taken at 10pm, within 3 hours of eating dinner or with a sandwich. It has been approved in the UK for RA for a few years and trials are ongoing for use of it in PMR. It is hoped that a lower dose might be possible and that there will be fewer side effects.

It has been used for PMR in Germany and my GP here in Italy suggested it when Medrol really didn't do anything for me (that's a newer and supposedly better form of pred) as ordinary pred as used in the UK isn't available here. I certainly find it excellent - I got a better effect immediately with 15mg than with 20mg of Medrol and really can't identify any side effects: I've lost weight, my hair and my skin are back to normal and I have no stomach problems, but I didn't have problems with enteric coated pred in the UK either.

Glad you are enjoying retirement - we work freelance so have the joy of retirement AND a bit of extra pocket money! Are you sure this puppy is more of a pickle - or is it the same as grandchildren compared to children: we're older than the last time!! GRs do get big and are very energetic - that's their job ;-)

Eileen