Can doing a regular work out in the gym even though it would be painful do any harm or could it help to overcome PMR. Any advice please

[toyboy]

[Celtic PMRGCAuk volunteer]

toyboy - I think it really depends on where you are on your journey with PMR. If you are in the early stages following diagnosis then a regular gym workout might further aggravate the inflammation in your muscles. If you are nearing remission and on very low dose steroids, then the exercise could aid muscle recovery. Personally, I would err on the side of not putting stress on those inflamed muscles. It's a similar story with the manual techniques of physiotherapy such as manipulating and overstretching limbs which is contra indicated in PMR. However gentle massage can be beneficial.

[toyboy in reply to Celtic]

Celtic.

Thank you for your reply.I have just gone from steroids to pain killers.Have been suffering with this for nearly 18 month.Just hoped that this would be something I could work at but as you say the muscles could be still too inflamed.Your advice much appreciated.

[Celtic PMRGCAuk volunteer]

toyboy

Wow! Lucky you to be off steroids in under 18 months. In that case, it's probably a case of trying the gym but very gently at first and gradually building up and with a few days break in between. That way, you should be able to judge whether the exercise is helping or hindering and stop it sharply in the case of the latter. Good luck.

[toyboy]

Celtic

Think my doctor may have been too early to take me off the steroids...He told me to carry on with pain killers....may be he feels this is the better of the two evils for me . I still have

much pain and stiffness when I dont take the Ibuprofen.

[Celtic PMRGCAuk volunteer]

toyboy

Did your GP say give you a reason why you would be better off stopping steroids and taking Ibuprofen?

Prednisolone is the best proven medication at the moment for controlling the inflammation of PMR.

Taking Ibuprofen long term can cause stomach problems and can also be harmful to your kidneys.

Are you someone who had raised ESR and CRP blood test markers when you were diagnosed? If so were these tests repeated during your treatment and found to be normal before stopping the steroids - it really doesn't sound like it from your description of "still having much pain and stiffness?

[toyboy]

Celtic

After a blood test about 4 months ago wich showed my blood to be back to being almost normal.My GP told me he was happy with my progress and advised that I could slowly come of the Prednisolone. I now take 1 or 2 400mg Ibuprofen a day and this helps to keep me almost without pain but for a slight stiffness in the fingers.If I try not to take the pain killers,everything comes back and I can hardly move for a day. Doctor advises me that slowly I will get better....Hope he is right. Just feel he may have taken me of the steroids too early.

Think I will wait and ask my doctor what he thinks about my going to the gym before I do anything silly.

It looks as if you have suffered with this problem for some time,hope that we both and any one who has PMR will all get back to a fuller life without pain in time.

I know 2 people who have had this and tell me they are now better.Fingers crossed.

[Pipistrelle]

Hi -- I think you need to be working with a rheumatologist on this -- many if not most of us have our bloods go back near or to normal but this is a sign that the prednisone is helping and NOT necessarily a sign to come off prednisone -- the real issue is if this is too early, you are more likely to have a flare and have togo back on a higher dose again, and this often means it takes longer to come off. A doctor friend who has had this said you want to have the pain and stiffness completely gone after a time at extremely low dose preds -- eg 1mg or 1/2 mg or even 1/4 mg -- or like a smouldering fire, you can get it all over again. GPs really know so little about this that Id ask for a referral to a rheumatologist or ask the GP to consult with a rheumatologist before removing you completely off preds.

On exercise -- I actually found swimming -- gradually back to a fitness swimmer workout level of about a mile -- really hastened my improvement while on steroids. But as others say, every one is different. I did not find any other type of exercise even remotely as helpful and actually could create more pain and stiffness for days. But exercise is important overall and even gentle exercise helps. It's far worse to do almost nothing -- makes stiffness worse to sit around! Standing better than sitting, walking better than standing...

I could control my PMR even at the start with ibuprofen but quickly developed an intolerance for it. It is generally pretty hard on the stomach to take at high doses daily. Plus there are other reasons it is prescribed (helps prevent development of GCA, stroke and heart problems that can be associated with PMR as well as NSAIDS). If you have stiffness and pain I'd agree that it doesn't sound like the PMR has been adequately controlled? Generally it is pain -- not blood tests -- that indicate how the disease is being controlled. Some people go to 'normal' blood tests immediately when they start prednisone but are definitely in full flight of the disease! Maybe your GP doesn't understand that? (for that matter some people with PMR/GCA have 'normal' ESR & CRP levels and bloods are not considered a definite test even for having the conditions).

[Celtic PMRGCAuk volunteer]

toyboy

Yes, I totally agree with your thoughts that with the symptoms you are experiencing your GP has probably taken you off the steroids too early, especially as your last blood test result before stopping them showed "almost normal"!

I didn't come off steroids until I was absolutely certain that I was in remission - I had learnt the hard way that being left without a diagnosis of PMR for a whole year, therefore without steroid treatment, allowed GCA to get in the back door. Basically I was at a higher risk of contracting GCA because of uncontrolled inflammation. Plus that uncontrolled inflammation can lead to other even worse nasties.

If I were you I would keep an eye on those blood test results and it might be an idea for you to download the British Society of Rheumatologist Guidelines for the treatment of PMR. Arthritis Research UK quote in their booklet on PMR that treatment usually needs to continue for 2 years or more to stop symptoms returning.

[triker]

Hi, After Angina problems cured (hopefully) with stents, my GP put me on light exercises twice a week. That was four years ago. After PMR was (eventually) diagnosed 16 months ago the rheumy suggested I continue the gym visits. I go once a week, prefer the afternoons, I'm on only 4mg per week of pred now, (I'd started at15mg daily) . Not hard exercising, more limbering up, keeping heart rate at moderate levels. I believe this has helped I'm male, 74 years old, still working 36 hour week. I'm lucky . My pmr is more ache than pain these days, especially trying to sleep in bed. Hopefully it will continue to diminish. This was my personal experience.

I'm lucky, check with your own GP I suggest - we're not all the same! Good luck!

Triker

[toyboy]

Have now been taking 400mg tablet of Ibuprofen in the morning and again one in the evening ( this I think is quiete a low dose? )for the last 4 days.

After trying to cut back to taking one tablet only a day had to go back to my 2 a day and now almost all the symptoms of PMR have gone again.

As my GP has taken me of the steroids I just wonder if the pain killers can do the trick.

Many thanks for all for your advice and knowledge.Very much appreciated.

[Polywotsit PMRGCAuk team member]

Hi Toyboy! Have just answered a helpline call from a lady who wants to go on her whole PMR journey without the steroids. I've advised her to have a go but keep an open mind! You may find that taking paracetemol alternating with the ibuprofen might help with the discomfort that you are still feeling. Take some at bedtime because any inflammation in your body is likely to be higher in the small hours. And don't go mad at the gym! If you want to do weights to improve your basic strength, concentrate on your core strength rather than arms and legs for now. - abs and so on. And use weights that are lower than what you think your max is and do more reps rather than upping the weights. Be very careful because the steroids will not have weakened your muscles but probably will have weakened your tendons and ligaments. You don't want to end up with rotator cuff tears (really painful!). If you are serious about getting your fitness back it might be worth going to a physio for some advice. Good luck!