Hallo All . I was diagnosed with PMR yesterday and started on prednisone and anti inflammatories immediately. Sooooo much better waking up this morning. Question. When can one resume exercising? I was doing callenistics before I was struck down with this ten days ago.
Hi Maria I was only diagnosed in March this year, and I thought because the stiffness went taking Pred I could do the excersises as normal. Unfortunately I could not burn my 600cals as my heart rate went up to 176 and the breathlessness made it difficult. I listened to others on the forum and cut down the intensity of excersise. I walk every day and I still go to the gym 3 times a week but a little less intense. Your body will tell you how much it can cope with. Good luck and try not to beat yourself up if you can't do all the things you did before.
If you are lucky you may be able to get going now - but I really wouldn't advise trying to jump in at your usual level. Start at at the absolute most 50% and preferably much lower. If you try (say) 10% today and see how you are tomorrow, you could go to 15% the next day - at some point you will find you are flat and even sore the next day - that was too much for now. But initially the day exercise, day rest, is essential to see if you develop DOMS (delayed onset muscle soreness) and then you need to allow that to heal before you do more. The pred only relieves the inflammation - it doesn't affect the actual disease process that causes it: an autoimmune disorder that causes your immune system to be unable to recognise your body as self and so it attacks it as if it were an invading virus. It is the damage to the body cells that cause the fluey and toxic feeling - and that continues, despite the pred mopping up the inflammation, like a dripping tap keeps dripping until you replace the washer but you just keep the floor underneath dry with a cloth!
But really - all you need is enough pred, the antiinflammatories rarely do anything for PMR anyway and are not a good idea mixed with steroids. It is far safer to have 1mg more of pred and no antiinflammatories like ibuprofen. At present you are on a high enough dose of pred to work without them - and as you get down to the dose you look for when reducing, the lowest dose that gives the same result as the starting dose, 1mg here or there is immaterial.
Thank you Margaret, I only started doing callenistics about a month ago because I was feeling very stiff and sore. The condition probably started then already but got progressively worse where I could not walk because of severe pain. So think I will wait awhile as still quite painful before attempting this again. Thank you so much for the advice.
Thanks for all this info Eileen. Really feel more empowered to cope from the knowledge one gains especially from people who are experiencing the same thing. Your advice has given me a deeper insight into this condition and I will definitely listen to my body. At the moment it is telling me to rest.
You are so,knowledgeable and so helpful with everything you say. This,little response has helped me understand what the hell is going on with me...why I feel I can shop the plaza, head out with a list, walk in and .....out comes the walking stick, I look for the nearest chair and panic because I can't make my legs walk any further and I still have to,get back to the car. I must learn, "walk 5 minutes more than yesterday, stop, rest, turn around and GO HOME! " slowly...slowly...sigh. I've never be known to be slow at anything in my life. Hypo, that's me.
Then rest - but don't JUST rest ! Go out for a short walk, 10 mins, if you can't manage more at one time, and another an hour or two later will lift the spirit and also help the stiffness. Ask Michdonn - he was doing noting until I poked him and after a realtively short amount of time is walking fairish distances. I had 5 years of PMRnopred - and Mon-Fri did an aquafit class at MY level, not anyone else's level. It made a major difference to the rest of the day. I also did Pilates and yogs once I was a bit more mobile after the aquafit. You just have to start low and then aim to get high - but SLOWLY!
On that basis I would find something less strenuous for your muscles. Had you been doing it for a while - as I had with Pilates - that would be different. You were stiff and sore because of the PMR and the callensitics probably contributed. Walk - and if you can manage, try Nordic walking where the poles provide upper body exercise too. Tai chi is also recommended by a lot of PMR-ers for balance and maintaining muscle tone.
Any suggestion as to how to regain muscle tone that just literally disappeared? (The nickname Skeletor is very fitting.) The 9 kls I'd lost in 5 months pre diagnosis was not fat, I was only 49kls originally, so no fat took up residence on this body. I tried to continue with my yoga, Pilates, walking, but when that hurt the more I did, I tried aqua aerobics. Fail.
Yes, agree. My mind says get up and go, my body says lay down and die. Body is winning. Rest it is. I'm learning to listen to it slowly.
You have to start SMALL! You sound as if you need specific physiotherapy with someone who really understands PMR and probably steroid myopathy - and I'd suspect hydrotherapy is what you should start with. We know it works well for people with PMR if they can get access to it. If you can't - go to the pool and just walk through the water for a few minutes. Then stand at the side and do press-ups against the side - but only a few. Do lateral leg raises. Get a water woggle or noodle and use it to do vertical presses with your arms. But NEVER more than a few. Start with perhpas 5 or each - and see how you feel next day - and add a few at a time until you feel it next day. Then drop back to the previous level and do that for a few weeks. Then add a bit again - rinse and repeat.
Rinse and repeat...love it. Yes, we have a pool here at home, solar heated but outside. I'm just waiting for the warmer weather to arrive get in and do exactly as you suggest. They are the excercises my instructor modified for me the first time I went t to aqua aerobic two weeks after starting pred but I couldn't do them...I had to get out of the pool I was in and get in the hydropool. I thought the rheumy would have suggested therapy but he wants me to rest at this point, I think for the GCA , as I still have some vision issues and the droopy eye. I told him I have a recumbent bike and a treadmil st home l, and asked if I could go on them and he said not yet. REST. ( I don't understand that word). I will continue small walks, rest, a bit more walking. Then hit the pool when they air warms up a bit.
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Start by NOT using the woggle - just do the movements with your arms. I'm not surprised the rheumy said no bike or treadmill - they always signify someone wanting to do more than they should! But you DO need to move a bit - whatever he says. Walking at your own pace is ideal for a start.
Hi Maria! Can you tell me the name of the medication for the inflammation and how bad are the side effects? I can't take prednisone get heartburn really bad Iam on meds for that. As far as exercising I would take it slow just because your on prednisone you will have to wean off them so don't overdue exercising. Let me know the name of the med.Thanks!
Hi Paula
the anti inflammatory is Celebrex 200 g. I must stress have just been diagnosed and only been on meds for 2 days the only sideeffect at the moment is thirst but then again could be the preds. On these melds for 10 days so expect will be taken off Celebrex and left on smaller dose of preds.
I never stopped getting daily exercise when pmr struck, and have no regrets. It took major effort to get out and do anything prior to my diagnosis and prednisone prescription.
Obviously you will want to curtail any specific activity that seems to cause a sudden uptick in any particular symptom (such as pushing a heavy vacuum, or lifting objects upward in front of you), but there may be many exercises that you can do without aggravating symptoms.
I tell pmr sufferers that finding the appropriate exercise that they can tolerate should be a serious goal, and to take advantage of the times when energy levels are high (as soon after waking as practical) and when their pred dosage is acting effectively, since exercising when tired/fatigued or when their pred dosage suddenly seems less effective will not seem like a good time to exercise.
Looking back (and had I known), I would have been more observant of what level of decreased dosage was beginning to bring on various symptoms. I followed the rheumi's orders and decreased by 1mg/month (starting at 15mg and based on my 140lbs weight), but had become quite feeble by the time I was below 8mg. I took over my dosage schedule increasing from 5mg after much needless suffering. A little over three years later I am working the 2-5mg/day range as dictated by my needs per seasonal activities. I'm now 58 y.o. and do much better when lengthy daily cycling and/or jogging takes the place of equivalent hours of yard work, for what that's worth, and c amurrently doing well at 3mg/day.
Thank you Maria I always worry about those side effects.
You can have depot injections of methyprednisolone in the USA - avoids gastric problems. Pred probably has fewer gastric effects than Celebrex or any other NSAIDs (antiinflammatories). I know a few people who have manged their PMR and GCA using them
The international guidelines for the management of PMR mention injections in Recommendation 5 of the 2015 Recomendations - you will find a link to them in this resources post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Be very careful of Celebrex - research it. It is the only one left on the market (I think) of a class of drugs which was subsequently proven to have some potentially fatal side effects. Probably best taken only for short period of time, not for a condition which may last several years.