Who are these people with PMR who are walking half an hour, or an hour most days? Two years ago I was walking three miles a day, every day, and then PMR hit me like a brick wall!. I was able to walk still for about two or three months, but then the fatigue set in, and I could walk less and less, until today, I can just about manage to walk to the toilet. Showers? One or two a WEEK, they're so debilitating and painful, but I force myself.
And my walking is getting worse. Not in such a way as to think "Well you're two years older now", but I can feel a difference each DAY. Is this normal? (But then, what's normal with PMR?
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ChrisinNam
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“Who are these people with PMR who are walking half an hour, or an hour most days?”
The lucky ones, and probably younger and fitter than you pre PMR.
As you say what’s “normal”-can you try any sitting exercise for your legs if muscles have lost their strength (plenty online, but go for gentle ones aimed at seniors) , or it is the fatigue -or both?
Hi DL, I was actually extremely fit before PMR, the docs have all commented. In fact, I never turned 78 at all. I stayed at 65 (or 25!). I used to LOVE walking, and grubbing out hedges and bushes to open up my garden, and cutting down trees that were stopping the sunshine coming in. AND cutting wood for my log burner. And making my own bread (which I did for over 40 years) Etc. etc. etc. But now??? Where has my life gone? Neither GP nor Rheumy can answer me, despite all kinds of blood tests.😭
Sorry to hear that.....it must be devastating not to be able to do (even a little ) of what you enjoy... I've certainly had patches of life like that...very frustrating.
Um - me. Sorry. I'm under orders to do it too. I did have a few months earlier this year where even getting around the flat was a struggle though - you weren't alone.
Are they SURE it isn;t myositis? Didn't you say the CPK, creatine (phospho)kinase, was high?
So sorry that you are in this lowering no man’s land. I have been there, 4 years PMR then 3 years GCA with a PMR presentation. Around the Pandemic I became full of malaise and also felt that this was it, I couldn’t walk properly at all. It was embarrassing to leave my front door, but the walking steadied as I went on. Now in Australia and especially in the company of my grandchildren I am doing 100% more than before and although I still definitely have to pace myself my physical abilities have improved exponentially.. I have hopes, that in spite of 7 years going past, I will reach an acceptable level of fitness. I hardly dare say this because it’s new and I come home soon and know that I must keep it up, with British winter coming. There definitely can be a psychological component to this, I had almost given up. Courage my friend, this is a blip.
That's a wonderful reply/testimony... so heartening. I feel myself going backwards - energy levels diminishing, new aches and pains, as I continue slowly lowering Pred and now have TCZ factored in - not at all the hazy newish dawn I had vaguely thought about on an optimistic day... ah well. Onwards.
HI,so sorry to hear your story. You say that having a shower is painful. And that your muscles are weak . Could this be that you simply need to be on more pred? I'm sure you have thought of that though.
What do the doctors say is causing it? The weakness and pain?
I'm in a similar situation, although not as bad. I was very fit before Pmr hit. Then was still able to walk 5 miles or so a day for the first year ....but now I can only walk about 50 yards before I have to rest. My hip muscles get so tired and weak and I get claudication in my calves. It's depressing! I've tried upping the pred, to no avail.
Hi Blossom, seen your post before about leg claudification, I also get it since diagnosed with Pmr, been for test but to no avail. Have you been given a reason for it
Hi, no they don't know but suspect blocked arteries! I dont understand why suddenly, I was healthyand did long distance walks before pmr. I'm waiting for an ultrasound of legs.
Hi Blossom, Had test for peripheral artery disease, ultrasound etc. everything okay, just had mri testing for stenosis, seems unlikely no back ache. This site mentioned LLV mentioned this to doctor didn’t take me upon that. Like you pretty fit till Pmr leg claudification started about six months after diagnosis must be a connection. Haven’t had result from mri takes months apparently. Let us know how you get on. I will do the same.
That is so hard to deal with. That is how I felt in the beginning. I'm also wondering if you need higher prednisone dose. But I'm a beginner here. I wish you speedy walking asap.
That link is a starter for 10, just put 'Exercise for Senior Citizens' in your search engine and low and behold stacks of them including You Tube which actively you show you how.
It is amazing what can be done just sitting and not pushing yourself. A while back Age UK used to do special free classes for senior citizens. They stopped because of 'begins with C and ends with D' , if we ever get them back, who knows.
sorry to hear you’re all in such a bad way. My mum is the reason I’ve joined this site this evening; she’s so weak she’s in hospital and has lost the fight in her left eye : she’s in pieces. I was wondering if anybody has tried a juice diet or anything similar just to drag the inflammation to Ishtar right down?
There are no diets that will deal with GCA - just very high dose pred for your mum at this point to protect the sight in the other eye which unfortunately is still at risk for a while.
I walk about 13,000 steps each day, but never all in one go. I try and space it out through the day. My aim is to walk in the morning, before my evening meal and after it. I walk as I know it helps to reduce my blood sugars. I did build it up though but this year have not walked as far as last year due to sciatica
Hi, like you I'm trying to walk each day and yes space it out, but can only aim for 10,000 steps which I feel is my limit. I feel good to achieve this but don't manage it every day, especially not on my two working days. I don't stress it though, can only do what I can. Any amount of walking has to be beneficial. I know it's hard ChrisinNam as I've been like you, loved walking/keeping fit and suddenly find it's jusy not doable. But hey, I'm proof that you can and will start getting your 'mojo' back, just have to give it time. Good luck
Hi -sorry to hear of your problems. I'm 75 - about 4 years into PMR. Currently on 2.5mgs pred from 30mgs at start. Guess I'm one of the lucky ones as I have always had 30minute walk every day with no real problem - though I wouldn't want to go much further. It helps that my wife always wants a daily walk and I don't have much choice but to go as well!
hi I've had pmr for twenty months was only diagnosed fourteen months ago when I finally got to see a rheumatologist ,I also used to walk twice a week for a couple of miles ,but gradually it's got worse just walking round town and I get pains in my hip and lower back not mentioning pain in shoulders when carrying shopping ,I taped my prednisolone down but docs put me bk to five mg but I still have to take paracetamol every day and a couple.of ibuprofen to get thru the day my sugar is high and weight Gon up trying to take care of my hubby who has lung cancer just every day chores seems a effort would-be lovely to have a pain free day ,I feel for all of you who have this painful illness ,take care
I had taken a 40 mins-1 hour walk every day for years. In the year before I was diagnosed & started taking Pred (aged 60) I was finding even a walk to the corner shop slow & painful. With Pred I can walk daily again, but not as briskly and my legs tire more easily. Keeping some semblance of fitness vs not doing any damage is a constant balancing act that I'm not sure I always get
Me. But …. It has been a long process. Started of after months of being hardly able to walk, shuffle I used to call it, by walking short distances. I am now up to 8-9000 steps a day after 4.5 years and 2mg Pred.
You can do it just don’t rush. I also had good and bad days.
I find it is low back problems that slow my walking significantly - PMR itself didn't really. And it seems to vary from day to day at present!
I am in the same kayak... Some days I can manage 7000 steps but pay for it soon after. My normal is 4000 per day but I do feel like laying down with my iPad and just loafing some days. I did go to a chair exercises for seniors class a couple of times but was wary of so many people coughing around me (this was pre Covid) I am looking for a really easy going chair exercise class online and am seeking recommendations.
I really do like to try and stay active and am lucky enough to be just 165 pounds and 5 ft 8 inches.
I am so sorry and hardly dare write this. After 8 years of steroids I am more or less normal. In the beginning I had to crawl upstairs and my arms were so weak I couldn’t lift myself up the bed. Steroids stopped this within hours and although I am a bit stiff getting up and I suppose bed making pulls my back around I am absolutely fine. My daughter nags me to walk the dog and I can think of a dozen reasons why not and am just lazy.
PMRPRO asked if you had the right diagnosis, a few years ago I couldn’t walk upstairs without intractable pain in my back, I had an X-ray that showed the inevitable changes for someone in their late seventies, I refused an MRI because I am a claustrophobic tit and didn’t want to go in the machine, when the pain became incompatible with life I relented and found somewhere that had an open machine and saw a spinal surgeon. He diagnosed a ganglion that burst and my the time I saw him I was better. We put up with so much with this condition and it’s sometimes difficult to see the wood from the trees. It’s important you have the right diagnosis and hence the right treatment.
You may only be the patient but you are also the only one who matters. We can’t turn back the clock ( I am still 26 ) but should be aiming for the best achievable quality of life.
when l was first diagnosed l found walking very difficult, l started going to a large M&S and would get a trolley to push, then stop for coffee & gradually increased how far l could walk.
Then we started going to Garden Centres & did the same thing, a mooch around inside, coffee & then a walk around outside (weather permitting) again pushing a trolly.
My GP advised me to walk a little bit further each day, but there came a point where I couldn't get up the slight hill to my home, and walking was out.
Hi there. I have only been afflicted for 16 months but have suffered as you with an inability to do what I once found easy. My eyes were opened recently to steroid induced myopathy, muscle wastage. In some patients the results are far more severe and in my case that seems so. I am looking into this with my GP and Rheumatologist. My left leg recently collapsed on me. Partially through severe loss of muscle and strength but also because I realised the IT band was totally locked with lactic. I had a long hot bath and massaged the lock out of the muscle for 30 minutes. This has improved its function. I am still weak and not able to do much but it has made walking easier. I too am walking badly now and unstable. Maybe a session with a knowledgable masseuse would help if you can't do it yourself. Beware, massaging locked muscle is really painful, but does diminish as the massage clears the fibres.
As the learned people on this site have pointed out PMR effects us all in different ways. Not being smug I walk over 2 miles every morning and 2 days of 4 miles. The last hill home has me puffing some mornings, and of course the days I wake up feeling fatigue, and foggy. I force myself to walk everyday so as not to give in to this condition we all struggle with. Lately I don’t experience the shoulder stiffness, etc. Justin the foggy fatigue. I used to be a keen hiker, hiking with a group at weekends 8-12 miles no problem. Those days are currently gone.
I suppose it’s all relative, keep fighting the good fight..
Well I can no longer walk as I used to...4-5 km. BUT I can walk the block and through stores and then usually crash when I get home. Painful showers though is something that happened to me pre-Prednisone. So I guess that begs the question are you on Pred or on enough Pred? Nothing is "normal" with PMR. It's something new every day and a roller coaster ride for sure. Think of the things you can do NOW, as opposed to what you used to do, because that may never be again. Quality of life is very important, whatever that entails for you. Better to flow with the current than fight against it. Hugs to you my friend. ❤️
hI I've done alot of fighting in my head,always been very fit walked 5/6miles on weekends but at the moment struggling to walk around the block, I've had pmr for 5yrs taking 15mg prednisalone I do get flare ups it takes such along time to get back on track.the group has got me through some bad times,and I've just come back to rejoin
There are some of us out there. Fortunately I am one of those that are able to walk a mile. Diagnosed PMR at 60 in 2011. Now permanently on 4mg. Many flares over the years!! I’m thankful that I am able to do the things I can. Always have hope! The support of this group encourages me all the time.
I am 80. PMR diagnosed 2015. I was very active, loved to hike. Fast forward : I am on oxygen 24/7 because of moderate scoliotic restrictive lung disease; prednisone and inactivity weakened my breathing muscles.
I regret not keeping more active. Yes, covid and environmental allergies kept me inside. However exercise, once started, gave me MORE energy. Because I want to get off oxygen I signed up with Pulmonary online “Bootcamp” through the Pulmonary Wellness Foundation. I have been doing this for 4 weeks and definitely feel better. I need a good nap but then feel better.
This free “Bootcamp” starts extremely slowly- just walk 4 minutes, upper body gentle exercise at first , taichi, chigong, yoga thrown in plus motivational encouragement. I now can walk 24 minutes on my treadmill.(going out with the oxygen concentrator to walk is a hassle plus too many allergens outside now). Professionals lecture on why exercise is mandatory. My oxygen levels have improved.
I regret not pushing myself; it’s so easy just not to move. At times, in the past, my legs felt like cement. If I started slowly and increased slowly that feeling went away. I realize it’s so hard to be motivated. .
I am one of the lucky ones. After my diagnosis, I was hampered for about two months. Since then, 22 months later, I have continued to walk EVERY day. Walking has always been my every day exercise. I was 57 at the time of diagnosis.
I have every sympathy with you. However hard I try, a short walk leaves me knocked out, and I can't go very fast. It's not for want of trying or practising. And when other people can manage it, I wonder what I am doing wrong. IP can only assume that perhaps my arteries have been more affected that other peoples.
HOWEVER, the good news is that finally, on 2 3/8mg pred, it has got slightly better; I managed to walk a quarter of a a mile the other day, slowly but without a struggle. So keep hoping and maybe it'll be the same for you. On no account blame yourself.❤️
Hi I know it's so hard but I'm knocked out if I push too much listen to your body,but I'm going to physiotherapy now and my posture is better,so abit of gentle exercise each day if possible
I too find walking hard work though I used to be able to do hour long walks with no difficulty in my pre temporal arteritis days. My solution is swimming. I go to our public baths every week and sometimes twice.
I was diagnosed with PMR three years ago, yes it is very debilitating and exhausting but I manage to walk my dog for 1hr each morning and 30mins most afternoons. I walk at my own pace but now with a walking stick due to sciatica in both legs. I have found the mental stimulation and interaction with other dog walkers does so much for my state of mind . When I get home I am knackered but with a sense of achievement.
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