I'm usually fit and active but spent 4/5 months undiagnosed and in pain. I'm keen to get moving again but worried that I could over do it and cause further problems. Can anyone help with their experience? Thanks so much.
You may wan to look at this discussion...
It could answer most of your questions...
Basically I started with walks and streatching, combined with massage to help with pain. It is important to start slow, and to be active several times a day ( 15 min walks x 3) for example...
I have posted weekly reports on exercise progress in the discussion I posted link for...
You can't really do any harm as long as you stick to a few basic rules.
Although you feel much better with the pred because it is relieving the inflammation that leads to the pain and stiffness the pred does nothing to change the underlying autoimmune cause and your muscles remain intolerant of acute exercise which means two things: they won't tell you when you have done enough and they cannot recover as they normally did. You have to learn your limits and stick to them - or the next day you may feel as if you ran a 10km race without training! And even more embarrassing - since that tends to happen at home - you may be halfway along that extra bit of walk and feel as if you have just hit a brick wall and can't put one foot in front of the other! That's fine if there is a park bench to sit on for half an hour or a bus stop across the road but if you are a bit off the beaten track and can't get a taxi to pick you up, it isn't!
I usually suggest starting by walking and planning the walk to go from one place where you can rest to another. Do it in bites - 10 mins, 5 out, 5 back and see how you are. Do it again later in the day if you still feel pretty good. But don't overdo it at first. Once you know you can manage that - add a couple of minutes. Rinse and repeat.
My PMR started while I was still going to the gym - and I found that I was able to do less and less. I could no longer do step classes, I couldn't spring up on to the step! I found a different gym with a pool - and did aqua aerobics. I didn't do it at the same level as everyone else, didn't always complete the full session if I felt tired, but over time was able to build up to be one of the most active in the class - and that was with untreated PMR. After the class I was often able to do a Pilates or Iyengha yoga class because I could move again. If I used the gym equipment, which was rarely because PMR doesn't like repeated or sustained actions, I did just 5 reps at low level before going to another machine and then returned to the first. But I started with just 5 x once - to see how I got on.
People who are still fairly fit and used to exercise usually do better - but a lot is to do with how long you weren't able to exercise properly. I had 5 years without pred and was very unfit by the time I got to try pred. It took me a long time to build up to anything.
Go out and walk and see how you get on - but don't go mad until you get the length of what you can manage without needing 3 days to recover. At first I never exercised on consecutive days - I built up to that slowly - but you can and will be able to get back to doing lots - and there are some very active people on this forum who cycle and do a lot. But everyone is different in how they experience PMR and how they react to pred - so just because I can't do something and someone else can cycle 30km before breakfast doesn't mean you will be able or not able.
Early in my PMR I was able to get back to exercising. Running, cycling, swimming etc. I had been up and down a year or so before diagnosis. I could hardly get out of my car or the couch, I was so bad. My first 2 days on Prednizone I was able to do it all, I felt like a million bucks.
I've now been on Prednizone now for 3 years. Gone up and down a few times on the medication. I just recently was put on Methotroxate to help me decrease my Pred since I'm sitting at 7.5 mg and can't seem to get it lower. I've gone as low as 3 mg but had to increase each time.
Kitty Litter, love the name!
My suggestion is to keep as active as you can. The Prednizone will affect your muscles over time. I've lost muscle mass through the last 3 years.
My feet recently were affected by PMR. I had horrible pain and had to increase again.
I will attempt one more time this summer to run. We will see. I've been told if I get back to start gradually. One step at the time. Good luck.
I am 59 and have got PMR but still waiting for final diagnosis & prednisone. Started in Nov so I have put up w pain & am getting a bit desperate. I work 6 hours a day at a P C which is not good. I go home & nap/lay in bed as I feel sick or knackered. Then I get up & go for a walk. Try to get @ 8000 steps a day as I wear a fit bit. My shoulders are v v painful. Talk about not brushing back of hair! I look like I have aged 10-20 years. V pale too (due to anaemia & fatigue). Also a new pain is in my hamstrings. All night I have to stretch my leg out. Also hard to sit at my desk. Have to walk a bit. Last complaint is little itchy spots all over esp my back & front. Anyone else have this?
Sorry to ramble/rant. I appreciate everyone on this forum 'listening'. Keeps me going.
Any comments appreciated. Ultrasound on Friday to check bones then apt w my Rheumahologist after Easter. The waiting is v tiring.
Thanks. Advice v welcome.
Whitefishbay
Definitely try some exercise but always always listen to you body.
As has been said, we all experience our own version of this disease and we all start from a different place as regards our fitness.
i used to run a fair bit so consequently my waking regime is going rather well, 4 and a half miles daily on average. But I had to build up slowly and still got a couple of knock backs. My Achilles heal (if you excuse the mixed metaphor) are my shoulders, can't lift my weight. No press ups or swimming for me (yet) but I will get there I'm sure. Positive thoughts is the way to go for me.
I don't know if anyone else feels like me in that I see this thing as a positive as I now have a bit of a goal to aim at. Don't get me wrong, I would much rather not have this beasty but as I do have it it has focused the mind somewhat.
all the best
Ron
Whitefishbay, curious why you have to wait so long for the medication. Generally it seems that confirmation of pmr is made by a short term of prednisone to see if it rapidly alleviates the symptoms. I was undiagnosed for over a year and continued to do all the exercises I was used to, even tryng more as I thought I needed to because of the stiffness (silly me). I do agree that it is important to remain as active as possible, but whether treated or not treated you need to follow the advice Eileen gave to Kittylitter which is to pace yourself and make sure that for every activity you allow yourself a period of rest. (This might become even more important after you start pred.)
I don't understand why you're not already on Prednisolone. I was diagnosed on day one, bloods the next and Pred the day after. Started on 25 on Christmas Eve, down to 13mg now. Did very little exercise till this month. Now cycling 25k 3 times per week. Pain under control, but know I will need to be cautious when I reduce to 10 and below. Going down in 1 mg steps every 3 weeks. I think you really need to listen to your body, listen to Eileen and treat your doctor with suspicion!
Well it took six weeks to get an apt with the rheumatologist. Then she was not sure as she said that she did not want me on prednisone if I did not need to be. I did receive one steroid injection which was a huge help. I went from feeling like 2 out of ten and now as it wears off I feel 4. It is wearing but I realise it could be worse.
All your replies help keep my morale up. Everyone seems so positive and energetic (how do you do it)?
Thanks very much.
Yes I have now been in pain/discomfort/agony since early November. Maybe it is just the NHS and the waiting lists. I am tired and also only go to work, take walks and never go out. Reclusive. Roll on spring and warm weather.
Thanks everyone for your advice and reference to previous threads. This is all very new to me. Two weeks ago I had never heard of PMR or prednisolone. Feel I could sit an exam now! I've never even been on a forum before.
Am very grateful for the medication, although I'm worriedly awaiting the side effects- when does the 'moon face' appear?! I'm having an MRI scan this week and looking to start reducing pred to 12.5mg next week. It seems that it's all about attuning to my body and adapting to my capabilities.
On another note, I have always been a fan of massage but stopped as it was just too painful. I'm having regular acupuncture and reading up on anti inflammatory diets. It would be great to read Your experiences with complimentary therapies (will defo be taking pred though).
I hope everyone that replied sees this message. Thank you all. It's been really helpful to find this forum and learn from others. Good health x
I saw a locum at my GP practice. I went in thinking I was the worried well and he diagnosed PMR immediately. Hassle your GP! There's no need for consultants for PMR diagnosis and a positive reaction to Prednisolone is part of the diagnostic process.
I, like a number of others on the forums, remained undiagnosed for an extended period of time, so I certainly know how you are feeling - that was me a year ago, except I'd never heard of PMR, or if I had, dismissed it as I couldn't believe I'd have anything serious enough to require steroids. It may be a good thing that the rheumatologist is being careful about introducing the steroids and making sure of the diagnosis, but the wait seems unconscionable. While they are at it, are they going to do a DXA scan to check your bone density, especially if you are likely to be prescribed pred?
I categorically refuse to accept that I will suffer from the side effects. Blind faith possibly, but I've always kept myself fit, never been ill, eat properly and believe in the drugs I'm taking and treat anything complementary with suspicion.
Kittylitter, if you are strict with your diet you may never get a "moon face". I didn't. The other side effects take a while as the pred gradually affects the various body systems, but if you eat very healthfully, get appropriate exercise and, above all, rest and try to avoid stress, you may be able to have a successful taper to a lower dose within a few months, and every little reduction results in a little decrease in the side effects. For example, at about 7 mg I was one of those who would feel sudden weakness in the legs and was sometimes afraid that my leg would give way when I was out walking. But that has gone away as the taper continues. Other side effects are harder to see, like bone thinning (that's why the diet and supplements are important) eye pressure, blood sugar (diet again), and so on. All we can really do is endeavour to increase our health and wellbeing. Pred gives us back our lives, but it is in spite of the pred that we will regain true health. And we are in this for the long haul. No rushing to get off the pred!
I've read very little about eye pressure on these posts. I recently had a routine eye test and told the optician I had PMR and had been on steroids for 3 months. Eye pressure was normal. She said if it had not increased by now it probably would not in the future. Was she right? Eileen?
H. How long will I wait for DXA scan?!?
I think like everything else it's idiosyncratic. I would gladly have experienced moonface if it meant I did not have increased ocular pressure or increased blood sugar levels or a diagnosis of osteopenia (although to be fair I don't know if I can blame the last on the pred). I had my eye test after six months on pred and have moved into a range where the eye doctor wants me to return in four months - prior to that I'd had a regular exam every two years and no pressure issues. I'd recommend that people get checked every year. I went to see the eye doctor a year earlier than I normally would. He was also able to reassure me that there was no sign of GCA.
I'm I'm Oxfordshire and I had to wait 4 weeks. I'm happy to take the Alendronic acid as they found osteopenia in one hip. Also taking calcium and vitamin D.