Having had PMR 6 years (questionable by my second rheumie) I am at 10.5mg....reducing with very slow method....
I marvel at the posts that do several miles walks and other exercises....and wonder am I doing something really wrong.....
I tried a bit of a walk two days ago and the pain/stiffness/fatigue/dizziness is so much worse....my husband says maybe I`m not doing enough walking, so that is why I have so much stiffness.....this prevents me from doing so much. It feels like my lower back will go into a spasm if I try to to .....I feel like I am going round in circles.....sitting around not good either!
Rheumie like many wants me off pred, said when I was put back to 15mg few months ago if that didn`t stop symptoms, it`s not PMR....and has offered paracetamol ( how kind!) I can get very low wondering which path to take....
It`s lovely to hear what others can do....but just want to know am I hindering my recovery?
Hi Linda, I have had PMR and on steroids since March 2016. I was teaching exercise classes to older people right up to then and was in fair physical shape. However, the PMR has been so painful and debilitating that my exercise level has fallen dramatically. I find I can only walk a short distance and find this quite difficult. Standing in one spot even worse. I cycle but this also has been very hard and its now been a couple of months since I have been able to do it. What I find is that the activities of daily living wear me out so need rests in between things I would have found easy. If I do walk (with stick or walking poles) the next day I have to be easy on myself. I get all sorts of advice from 'friends' like oh why don't you do ......... Swimming being their current suggestion. And yes its nice to have a swim but I know from experience that even a short swim in very warm water would make my shoulders feel like I had been doing it all day and the very act of getting to the pool, getting undress and showered and dressed etc afterwards would make me exhausted. So my view, and my gp wholeheartedly agrees, is to do whatever you feel you can to keep what you have got. You aren't training for a competition. Do a little of what you enjoy. Listen to your body and do what you can. Your only job is to be as well as you can given the nature of the illness. Each day may be different and your activity level will vary accordingly. Do not beat yourself up as you think you aren't doing enough. We are individuals and know our own limitations so there is no value in comparing yourself to others. Gently does it. Be happy
No Linda - we are all different! I couldn't get anywhere near a 5 mile walk either. And I think there are probably more like you than the ones who walk for miles at a time. I also think that there are more men who manage to do a lot of exercise and the women who are able to do a fair bit were also very fit when PMR struck and they were able to start the exercise again quite soon. I had 5 years of very restricted exercise before getting pred and that had contributed to poor fitness even though I did an aquafit class every day.
I had excruciating low back pain after walking or even standing for a short time - it was due to spasmed back muscles and once that has been attended to I can manage a lot more. Maybe a physio could offer some help? When you do start walking again it also has to be starting with just a short walk and adding distance only slowly.
Thank you for that...lots of days I cope better than others, especially in better weather...and when I can escape to my summerhouse....the low days....I don`t think I have moved on in 6 years...and just don`t want this to be my future....I am so limited....hope this dosen`t sound selfish....
Like you I have friends that make suggestions...and realise they don`t have any idea how we feel....but I have a couple who empathise, and having known me before PMR....know I would do more if I could......
Swimming may be out...but if I could safely get up and down the steps..a jacussi (spelling?) sounds good!
Yes I agree about physio...I had seen one afew months ago, but she seemed nervous to deal with the problem, and hadn`t heard of PMR!...she gave me a few sessions of acupuncture...which only gave me a good nights sleep....too expensive just for that!
I will look further and make sure they know what they are dealing with, is preferable to see physio rather than osteopath?....
The back problem restricts so many things...and I know this must be dealt with....you would think after all this time I would know the answers...because my rheumie certainly dosen`t!
I don't know if you can afford an off-peak membership of a gym? I belonged to a Bannatynes gym with a pool - which had steps to walk down into the water, possible even with PMR and not as public an admission as needing the hoist! And I could swim back-kick - when it was quiet enough to have a chunk of pool to myself - my shoulders and upper back didn't like crawl and breaststroke.
And no it doesn't sound selfish - I'm having a day of "will it always be like this" too so really am feeling where you are coming from. I'm so tired of the limitations...
Linda and all, I am so happy to read your post. It is a carbon copy of my life, also. I'm not happy any of us have to deal with this dreadful PMR. I feel so USELESS, FRUSTRATED, But, as you say, even a very short walk causes such back pain it's not worth it. I try some outings then end up paying in the long run. I wonder if some semblance of my past, active life, will ever return. Thank you SO much for sharing, as it lets the rest of us know we are not the only ones like this! JUDY in MI USA
I don't know - an osteopath's skills are usually aimed at bones and it isn't really bones, it is muscle for me, although my osteopath did help in tandem with Bowen therapy. A sports physio or sport massage therapist is perhaps where I would start but I have no idea how easy they are to find in the UK. I know there are clinics in the Newmarket area - because they are there for the jockeys!! There was also a sports physio at Chester-le-Street cricket ground who worked publicly too. So that might be the sort of place to look.
I'm just flummoxed - all the physios here know about PMR and it isn't even particularly common here!!!!!!!
It's amazing here in Germany that so few of the physios know little or nothing about PMR. I can have 2 or 3 sessions per year paid for by the AOK (for others NHS). Each time I seem to get a different physio (local clinic or SPA).
Recently I was in a pain clinic for 2 weeks, but only the reumatologist knew about PMR. All the others, masseurs, physios, doctors didn't have a clue.
I recognise what you are saying though I think I am a bit more fortunate. I used to be able to swim 1200mtrs without a thought. If I hadn't been for a while I could still do it though my time would be longer. Now I feel so unfit and spend my time wondering if I can manage some simple exercise. It's frustrating but I made up my mind to concentrate on what I can do and leave the rest. I have found me in a different form and made up my mind to like it until I feel fit enough to be able to do more. I am better than I was 2 years ago when I was first diagnosed but I still get days when I can't do what I would like to do. I thought I was having a flare yesterday as I reduced to 3.5 on Tuesday but I seem to be ok today. It's the uncertainty but having watched someone the other day coping with stairs and toilet needs in a horrendous situation I count my blessings.
Thanks for the swimming information Eileen. I feel it would help, but have been wondering about whether my shoulders would complain! Maybe I'll have a go at something which avoids using the shoulders. There's a Holiday Inn with a pool that I've been thinking about joining, but it's a bit on the pricey side...
Sorry you're having one of "those days". You must feel that your PMR journey has been endless... You do such a fantastic job keeping us all going through sharing your experiences, both before and after Pred. Hope you have a better day tomorrow. As you say yourself... This too shall pass.
not a silly question. i have had pmr for 5 years. dont do exerises exept walking around at work and shopping. but got back from 5 days holiday. where i walked 5 miles every day without a problem. guess i am one of the lucky ones. it must be that we are all different tho we have the same illnes. i am now at 4 mg. after a flare. i have just had a call from the docs to say i have to make an appointment, i am supposeing its about coming off pred. hope not i am sorrting my reduction out by myself. but we will see what he says next week
Hi Linda. I've had PMR for a little over three years. Started at 40 mg and now down to 10.5 from 40 mg with two flares in between, I'm dropping .5 mg ever so slowly.
It took me a long time to realize that much of the pain I feel in my lower back and hips when walking isn't PMR pain...in my case. I emphasize "in my case" because everyone is different, and for some this can be PMR pain.
If I keep up with regular, mild stretching excercises designed to relieve back and hip pain I can keep things under control. These are water and land exercises found by Googling. I also have exercises prescribed by my Bowen therapist which really help with the hips if I do them regularly. If I don't, a 10 or 15 minute walk can make my hips feel like someone is driving spikes into them with every step.
Hang on in there! I know those rotten days when you feel so rough and can't imagine ever feeling better again, then the next day, you feel that little bit better... Take it easy today and concentrate on yourself! 😊
It must be a really bad day and we all have them. I'm sorry to hear you're having a bad time just now, Eileen. One of my friends had PMR for 15 years and it suddenly went last year. Her energy now amazes me so there is hope.