Running with PMR

[lport]

Hi. I was diagnosed with PMR in October after getting symptoms in July. Prior to this, I ran mountain marathons and did lots of other sports and activities. I was able to start running again tentatively in December after taking 15mg of Pred, but since reducing, I can no longer run at all due to the muscle pain. Are there any other runners out there with PMR and if so, how do you manage? I wondered whether it is worth keeping my dose higher to enable me to run - the benefits on my mental and physical health are enormous - or whether this will just exacerbate the problems?

[SheffieldJane]

Hi, I really feel for you having this source of joy temporarily barred to you. You are going to have to find a gentler way to keep your body supple and your muscles toned, perhaps in water where you get more for your effort. You are going to have to be quite creative here. I am sure other athletes on this site will tell you about their journey. Taking more steroids to facilitate strenuous activity will wreck your health. So much more wise is riding this out with patience and forbearance with a view to building stamina and strength for the future. At the risk of sounding preachy there are lessons to be learnt from sitting still with yourself. Wishing you a full recovery!

[lport]

Thanks! I'm finding Bikram (hot) and other yoga to be excellent for the kind of reasons you mention. The meditative aspects of yoga are restorative too. This damned condition has forced me to focus on what I can do rather than what I can't do, however and to be grateful for being relatively pain free. Great to have discovered this community too. I was feeling rather isolated.

[PMRpro Ambassador in reply to lport]

"This damned condition has forced me to focus on what I can do rather than what I can't do,"

You've taken the biggest step most people need to! Looking at things that way is the start of successful living with PMR.

[patsy699]

Good luck with your journey to find a fulfilled active life with PMR. It is one year since my onset and diagnosis, this group has been a godsend. all the daily decisions about when and how to take the steroids and exercise. Even when the doctors do know the answers there is not the time to discuss. patsy 69

[DorsetLady PMRGCAuk volunteer]

Good advice already given. Keep up the gentle exercise, may not be the same as running in the mountains, but at this time, will do you much better.

Your muscles cannot cope with any vigorous exercise at the moment, so the worst thing to do is to over exert them. You will get back to running, but in the meanwhile pamper yourself a little, and go with the flow!

[lport]

Thanks guys! I currently take my preds in a single dose in the morning with breakfast, my doctor didn't specify the best time, but I wondered whether taking them with dinner or in split doses might be better. Any pointers?

[PMRpro Ambassador in reply to lport]

Each new day's batch of inflammatory substances is released in the body at about 4.30am. The sooner you take your pred after that the sooner the inflammation will be combated, reducing the development of pain and stiffness. A study showed the optimum time to take plain pred is 2am - the peak blood level is achieved at about 4am by doing that. But many people wake early, take their pred with a snack and then settle down for another couple of hours to allow the pred to be absorbed and start working.

Taking the pred as a single dose has various benefits - it hits the inflammation with the highest possible blood level. The pred is then shed through the kidneys within a relatively short time but the antiinflammatory effects last for 12-36 hours - so the body has the longest possible time without much pred being present to lead to side effects. If you are a 12 hour person you may find the pain and stiffness return during the latter part of the day - and then it is possible you will manage better by splitting the dose but first you need to see how you get on with a single dose. That works for the majority of people.

Taking the pred with food reduces gastric irritation - but not everyone has a problem. If you take it early - a glass of milk or a yoghurt is usually enough to do the trick.

[Gtgirl]

I too used to do loads of running, 5/6 days a week. I was never superfast but enjoyed regularly taking part in 10ks, 1/2 marathons and even did a couple of marathons pre PMR. My PMR came on acutely, There was no way I could run but gradually found I was able to walk further and used this as a means of exercise. I even used my gps watch to measure how far I had gone! Started jogging about 4 months in however initially did walk/jog starting with100m repeats. If I felt it was a struggle I would revert to a walk for that day and didn't get hung up about it. I have reduced my steroids very slowly (medics I saw were not experienced with PMR so I usually told them what I wanted to do), advice from this forum invaluable. Nearly 2 1/2 years on I am on my final taper, during the last 7 months I have done 2 x10k events having built up extremely slowly and carefully. Ok, both were PW times but I don't care as I can run again without it being detrimental to my health which is much more important. I now run, more like a jog, about 3 times a week distances vary depending on how I feel. I don't worry about how long it takes or how far I go I just enjoy being outdoors. In the early days I thought I had lost my running forever so I'm more than happy. I do realise how very lucky I am, not everyone is so fortunate, this condition is so unique to each person. I live in hope that my fitness and stamina will continue to improve as others on this forum have proved, it is possible.

I also can recommmed swimming, if you have the opportunity. Takes more planning, not as easy as pulling on your trainers and heading out the door for a run but I found it well worth the effort and very beneficial.

Take care (plenty of rest), listen to your body and don't push yourself too quickly, Best of luck.

[Lochy]

I too was a runner, regular dog walker, golfer and Pilates person before my PMR diagnosis last April. It brought me to a grinding halt until I started the pred at 20mg. I felt as if a miracle cure had been found. I didn't't go back to regular running as it was more of the golf season but golfed successfully (or without pain!!) until about August. Then a flare occurred due to a too fast reduction on my part. Lack of advice from my GP and my ignorance combined. Then I could do very little. Golf no more as the pain in my shoulders totally debilitating. I think I had actually injured or weakened my shoulders by golfing through the summer assuming all was well. It is so difficult to know what to do as we are all different but I am now trying to work out what I can do as opposed to attempting to return to my old activities until this condition is under control. I am 57 and may never run again but as long as I can walk - and I can do good distances! - and hopefully golf and return to pilates I might be happy!!

The help and support from this forum has been invaluable and has given me confidence in dealing with my GP (who is very supportive but admits his lack of experience with PMR especially in 'youngsters' like me!) and in researching the condition so I can try things myself.

I do feel a bit alone as I have no regular GP appointments unless instigated by me and my next rheumy appointment has been postponed until Sept 2017. You really do need to be prepared to try and take ownership of this condition.

[Rockn]

I've got the symptoms of PMR. I'm a retired family doc and did some extra reading about the condition and realise prednisone treats symptoms and not the cause. After initially laying off running for 2-3 months I tried running again and this improved my sense of well-being. Hip region pain and stiffness in morning makes it hard to get up and dressed. By afternoon feel not so bad and go for a run. First km or so is really bad so I concentrate on cadence and running form and eventually running gets less painful. Longest run this year has been 16K (weekly long run used to be 20-30K). Ran in a relay race yesterday - other team members got me to sit down to put on shoes etc before I raced and I almost completely seized up afterwards with pain and stiffness hips, butts and lower abs. Stiff like usual this morning and no pain this afternoon so will go running again!

I'm sure the running is doing no harm. Was completely miserable during the lay-off and just got worse and worse. How are you getting on?

[lport]

Hi. Glad to hear that you are keeping running. I agree that stopping exercise is absolutely demoralising if you have been used to being fit and active. I missed the social side of running - it was central to who I was and how I relaxed and spent my holidays, but it did elude me whilst I was in the worst of the PMR.

I'm now clear of symptoms and on a very low dose of pred after being diagnosed last October. I'm convinced that keeping as active as possible helps with the cure - not least of which because it helps with the psychological issues of the disease. There were days when I just wanted to curl up and give up. But I substituted my running for hot yoga, long walks, rowing (which I could do even before I started on the pred), cycling and strangely, ballet (which also helped as moving to music distracted me from the aches). I'm now able to run again, though I haven't yet attempted a mountain marathon yet! In my experience, exercise helped no end and even if it was painful at the time I always felt much better after it and I have no long term problems as a result of keeping active during my PMR. Good luck and keep on running!