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A question about your walking abilities?

Hi everyone, me again looking for some experiences if possible.

Although I am much more flexible on Pred and the stiffness has gone, my walking has not improved. (Almost 4 weeks on Pred and just reduced to 14mg today)

How I describe it is that it feels like my spine or spinal muscles cant support me. When I am on my feet for a longer period of time everything starts to hurt, neck, arms, hips, lower back. I even go pale.

I come home and rest for a while - and eat - and it improves but I am never pain free. It's awful and getting me down so much as I dont drive and walk everywhere.

I keep wondering if more is going on so thought I would ask what your walking capabilities are? I am 51, average weight.

Thanks for reading. Michaela

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I have never been completely pain free and find walking up and down a hill a problem.

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Depends - if it is flat I can walk for some time. Hills? Now there is another thing altogether! What I found was that I could walk for so long and if I then sat and rested, I could walk the same again. So we walked to a restaurant outside the...

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Greetings Michaela

My best (amateur) answer is that although the Preds often manage / control the worst of PMR symptoms (i.e. crippling Pain, Stiffness, Fatigue etc) and you can function more like 'normal', all-the-same you have a nasty...

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I’m a longtime hiker...before PMR. Used to be about 5 miles daily. I have cut back to 2-3 miles (up from about 1 mile early in PMR). If I walk more I get very sore, but I can do it. I’m never pain free, but I walk anyway, as it make me feel so...

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Hi Michaela, I am 8months into my PMR journey and currently at 7 pred. I remember between 15 and 20 I only managed along the street a short distance and felt it was enough, then gradually increased the daily walk to a few more streets in the...

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Before PMR I used to do a 3 mile walk during lunch, that slowly reduced to a few hundred meters befor improving, now I can do my 3 miles again, took about 2 years for me. Only fly in the ointment is that I feel that I'm going backwards again, but...

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I recognise that completely. I also find it hard to walk nicely, if you see what I mean? As if everything is off balance. I would stay at my dose or even go back to 15 though, until it all settles. Rushing, simply doesn’t work. Some people start...

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😏 you’ve seen me!

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I am not sure if it will work for you, but this is what I did at the beginning of the PMR journey. Pay close attention what muscles are tight and are giving you a problem. Based on your description, I imagine that you are walking very stiff, with tense muscles. In my case I could not make large steps. My instep (groin) area was too tight and because of that my whole body, back , legs were trying to compensate to keep me balanced ( upright). To correct for that I started to stretch muscles that were tight before and after each walk. For example, I would find steps with railing and keep one leg at the bottom and other on second (or 3rd) step, lean forward and stretch my legs. Gradually I would make that step longer. This helped me a lot in my walks. I do it even now that I walk 3x a day ( have large dog :) ) and I have been with PMR for 3+ years.

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Thank you so much !!! That is wonderful advice. You are obviously au fait with muscles etc and that gives you the ability to use logic to work through stuff. Very smart of you and very kind of you to help me and the group by sharing. Cxxxxxx

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One of my weekly walks is from home to the library (and sometimes in reverse). According to Google it should take 12 minutes. Along the way there are 3 bus stops with benches, 2 other benches and 3 nice low walls. I've measured my walking progress over the last year by how many little sit downs I need on the way and whether I need the bus to get home. I've reached the stage when I can manage the journey out without any sit downs (although I might need a couple of standing rests) and - as long as I haven't any very heavy books or shopping) - can slowly walk home. This walk is on the flat. If I go in the other direction, it's more problematic as it is hilly, quite steeply up to start and then downhill. I can usually manage the outwards walk but usually have to take the bus home or else I end up completely exhausted.

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Oh BRAVO!!! Marijo I’ve been a fan of yours and now even more. That’s a great achievement. You must feel good when you see clearly the progress you’ve made. Very encouraged on reading this. Thank you xxxx

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Thank you Daisychain. I like you too. I've just been to my second Slimming World meeting and have pledged to increase my walking, but I know I mustn't be over-ambitious. I've really learned to be happy with small advances since I went down with these wretched ailments.

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Walked has been my favourite activity. At beginning of PMR I couldn't walk the dogs. Once I started pred, I slowly restarted walking one dog walk a day. "I need a rest" was my mantra. Sometimes I missed a walk altogether. Pilates and a good osteo also helped. I continue with pilates but not osteo. Currently, with my new fit bit, I averaged 8,000 steps this week. Yesterday I felt awful so skipped a walk and had a sleep. For me that's the key, listen to the old bod, take learning from forum and slowly but surely move forward.

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My problem with walking is back pain, so I wear a back support and that helps a lot. Sometimes though, I'm fine without the support, but I always use either one or two sticks! Mind you I am 81 so old age may have a lot to do with it!

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Oh thanks everyone. What a reassuring thread! When I wrote it I was anxious that my walking problems (I can relate to the 'wooden legs') were not PMR as there seems to be no improvement with steroids.

Judging by your experiences and journeys, this is not a quick fix and it seems the stiffness and laboured walking is definitely part of the illness, which is a huge relief.

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No - no quick fixes in PMR I fear!

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Hi Michaela

I was diagnosed with PMR 14 months ago and my wife Jan was diagnosed 6 months prior to me.

Although our experiences of PMR have been similar our day to day tolerances vary enormously.

Currently Jan is on 7 mg of Pred, and despite some stiffness in her neck and hands, is able to take our two golden retrievers out daily and walks for miles.

conversely I have just gone back up to 13mg from 10mg and have trouble walking more than 50 metres.

the usual scenario for me is walk about 20 metres before both my arms start to ache. My eyes start to water and my breathing becomes laboured. I then start to experience deep seated pain just above both hips and have an overwhelming urge to sit down on the ground. I don't do this as I know I will struggle to get back up.

finally I start to sweat profusely, become totally out of breath, and grind to a halt.

Ah well, I suppose we just have to let some things run their course.

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If you haven't already, I think that needs reporting to your doctor and investigating because it really isn't typical of PMR and, if anything, suggests some artery involvement in your trunk. Some cardiology input might not come amiss.

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Saw the GP on friday . I had an echocardiogram before Christmas as my heart had gone into AF. No structural problems but he has referred me to a cardiologist for his input. Meanwhile, inflammatory markers have gone through the roof so he has upped my prednisolone dose.

Thanks for the good advice.

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My a/f is thought by the cardiologists here to be due to the autoimmune part of PMR/GCA having damaged the electrical cell system in the heart that governs the heart beating.

If your markers have gone through the roof someone should be considering you have large vessel vasculitis as a matter of urgency - even emergency. Not a GP - they will be out of their depth. A PET scan would have been useful but you are probably now on too much pred for it to be meaningful - although if the markers are high that does suggest there will be inflammation to be found.

Where are you? -ish...

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Hi,

I find that as my body gets used to my current dose, everything gets better. I am

finally realizing that a too fast taper is not good. Also, I am never totally pain free.

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Sadly most people are never fully pain free although there are some lucky ones who are. The pred should sort out the pain by at least 70% though.

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It’s odd, I was a runner and actually completed a 10k race the week before I was diagnosed. When I went on Pred the pain and stiffness almost disappeared. My Rheumy told me to keep running if I could. But little by little, even though I was tapering, it got much harder to run. Like you, I felt weak and tired. I’m now at 5.5 and can hardly walk some days. No actual pain, except for lifting my feet on and off pedals for driving, but can’t walk more than a couple of kilometres. It exhausts me. No idea what to do but keep trying!

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Do you rest at all. If I rest after any activity even if I don’t feel like it, I can generally carry on. Not always but I keep trying. Pacing is so very difficult especially for a previous energetic person, but I’ve found I can’t fight the PMR, just live and work around it

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Always being active I was feeling that I wasn't doing much while dealing with PMR and wondered what I could do or should be doing. "Exercise as tolerated" says my rheumatologist. It seemed the most simple and sane advice. So that's what I do and gradually my exercise repertoire has increased without me giving myself a hard time over it.

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I do try to rest as much as possible, sometimes I have no choice as I’m so tired. What I really miss is getting that rush of well-being following a good walk or run when you’ve had a load of oxygen in your lungs. I’m sure you know what I mean , walking your dogs etc.

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That sounds familiar. I felt like I was made of jelly when walking when starting pred. I just did a bit at a time and rested a lot. Slowly it does gets better.

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Thank you. Definitely feeling more human today after limiting the walking!

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So happy to see it isn't just me--I have progressed though, I think. The extraordinary pain in the groin area has worked its way to my ankles, calf and Achilles Tendons. Perhaps it will work its way out of my feet and go away!

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Hello,Mic67,I was just wondering if you were taking enough Prednisone.

I’m currently tapering from 7 to 6 and a half mgs.I feel I need to go back to 7 mgs tomorrow though as the base of my skull is sore again.It seems that we all have different symptoms when we are not taking sufficient.I wish you well.

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Hi Dewdrop, well I would much rather be on 20mg but have been pushed to reduce to 14mg. I am going to speak to them about my legs though!

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Its always good to tell them what’s going on so I’m glad that you are going too.At first like most people I was determined to reduce as fast as possible but now I am more scared of letting any inflammation go unchecked due to the damage it might cause.It is really hard to strike a proper balance isn’t it ? I am currently being disobedient as I was told to reduce 1mg a month but I have started a new job and PMRpro advised against reducing until I’d settled in.So I’m not ,in any case when I resume, I will follow DSNS and reduce by half a mg.Sorry to go on ,it’s probably nothing to do with your dose at all ..!Very best wishes.

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Like you, and all others who have commented, my walking has been impeded. In the beginning it was extremely difficult to walk even on flat surfaces and hills or an impossibility. As someone else commented you are still in the early stages of this ailment and it is my assumption that with time things will improve. I have now had PRM for a little over a year and I can walk comfortably on flat surfaces though hills are still a bit of a challenge. The feeling that I have is stiffness in the back of my legs from my hamstring muscles down towards my knee joint. But overall things have improved so I would hold out hope that your trajectory will be similar. I have also experienced periods of depression resulting from my reflection on my relative immobility in comparison to the past. So you are not alone in this and there is hope that you will regain more mobility as time goes on and this disease goes further into regression. My best to you with hope for the future.

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Thank you Ozark, yes I also have the hamstring stiffness at times too! I relate to the depression about it. I feel fine when I am at home but as soon as I go out for an extended period, I start to feel depressed about it when I realise my limitations.

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I have had walking difficulties since PMR onset 3 & 1/2 years ago. After a few frustrating weeks I did an experiment. I found pushing a supermarket trolley easier than straight walking. So I used my ‘g’mas pushchair ready for infrequent grandchild visits’ and pushed it empty, yes that helped too, but then people asked if there was a new baby. So bit the bullet, and borrowed a wheeled walker. First time used it with tears in my eyes as I came to terms with labelling myself old and disabled. Over years my condition got complicated by osteoarthritis of hips and I ended up in a wheelchair. One year on and I’ve had 2 hip replacements and am learning to walk again.......even a few unaided steps now feels like heaven! My physio says my muscles are very weak, but no reason not to recover completely as hips are fine. I use a mobility scooter for distance, a walker for more than 100 m and my 2 “ getting stronger every day” legs for short distances.

I still have PMR. I reduced to 2.5 mg Pred last December, but a fall and extra busy end of year, means I’m back up to 5 mg Pred per day.

My advise......get something to push and keep moving to encourage the muscles. You will get stronger. Valerie

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Hi Valerie and thanks so much. Yes, I relate! I must admit the only thing I enjoy about going to the supermarket is that lovely stretch over the trolley as I walk round! I'm not quite ready to get a walker yet (psychologically) but physically I feel I am at times!

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If you don’t mind me asking “how old are you” Mic? I was 72 when PMR ‘hit’ me big time. I also couldn’t see myself with a walker, so after about 6 months I bought a walking stick, later I tried crutches, but boy was I glad when I swallowed my pride and bought a walker. It gave me “freedom” as I was able to go out on my own with more confidence. The marvellous thing about it is, if you just can’t make it further (ie you hit a “brick wall”) you can just sit down and rest. Now I have an Electric Scooter. All this over the last 7 years.

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Hi Constance, thank you for your reply. I have just turned 51. Up until 2 years ago I was back and forth to the Middle East for my work so the seizing up has taken its toll mentally and physically. If I carry on at this rate, I am not going to have any choice other than to get some kind of aid!

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I'm really far from convinced you are on the right dose of pred. And have you tried Pilates?

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I have tried Pilates once. It was a class for bad backs but it put me off as I found it very complicated. It sounds so stupid but I am currently scared to do any exercise. I bought a yoga mat recently and even some basic stretches gave me a lumbar spasm. I think I might need 1:1 instruction!

I know what you mean about the Pred, today day 5 on 14mg and I finally feel a bit more human but I am bloomin well not dropping any lower without a fight!

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I remember saying to someone some time ago who said something similar that we happily accept the use of specs when we can't see - why not the use of a walking aid when we struggle to walk? It probably won't be forever - but if it keeps you mobile that is a very good thing. Not just for getting out but also for your muscles.

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I know a lot of people who should wear glasses and stumble round the place without them. I always take my specs off if having my photo taken! I still use my stick though as I have discovered I can use the disabled changing room at the swimming pool. It is much nicer than the normal ones! I felt that the stick gives me an excuse.

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The previous owner of our house in the NE wouldn't wear her specs out of pride - you could tell! I'd cleaned as the furniture was moved - she'd not done much. And we swapped houses. I was decidedly t-d off...

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It is the ones who should wear specs to drive that frighten me!

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Definitely - here we have to do a sight test to get our licence renewed (every 5 years for everyone, every 3 after 70) and it says on our licence if we require "sight aids". And you don't get the licence if you don't pass it.

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I usually just wear a monacle when pottering around at the Mansions. But when I go out I wear one in each eye. Not to improve my vision - more because I like to make a spectacle of myself... :-D

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Just don't try a Michael Gove submissive expression...

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What, Me? Submissive? And / or Impersonate Michael Gove? Perish the thought. Even I have Principles.. ;-) :-D

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I've been terrible for this! For around 10 years I wouldnt carry my glasses in my bag and only wear them in the house.

My daughter says 'mum you'd look far better in your glasses than squinting and doing the trombone with your phone!'

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I can't see the person sitting opposite me without - never likely to find me without my specs! Take them off to read now though.

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So sorry to tell you that I have just started my third year exactly as you describe. Have just reduced to 15 from 20 for the umpteinth time. On 20 l feel much better. I have PMR , RA and lupus plus others.

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Try a slower reduction. Use DSNS method to go from 20 to 19 mg Pred. Stic there for a while then if no return of symptoms go down to 18mg. Dr should prescribe 1mg tablets. Good luck. Let us know how you get on. Valerie

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Hello everyone

Hope you are all are as well as can be. I was diagnosed with fibromyalgia 18months ago but my symptoms seem so much like what all of you have. Any advice would be appreciated

Thank you . Love and hugs Lynne xxxx

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Hi Lynne, do you find that the painkillers you have been given for fibromyalgia work OK? It is just that only steroids really work for PMR. Fibromyalgia and PMR symptoms are quite similar.

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No, they don't work, hence why I'm still awake!! Take care. Love and hugs Lynne xxxx

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Quite possibly it is PMR then. You really need to have a week’s trial of steroids if you could get your doctor to do that??

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Thank you, I will ask her when I next see her xxxx

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Diagnosed with PMR 3 years ago, put onto a 2 year research trial. Given 15mg prednisolone, and had muscle strength tests. Even after a year of no excercise pre PMR diagnosis my muscle strength was 85. After 6 months on prednisolone aches and pains had declined but muscle strength now down to 35. Two years later I am down to 4mg of Pred. Have tried to reduce below to 3mg but all tiredness symptoms come back, so back to 4mg. I can potter around most of the day, visit galleries, meet friends. But I cannot sustain a walk. A 10 min walk takes me 30 painful minutes very slowly. I need frequent stops and rests. My legs still feel heavy, I have chronic back pain, and even with limited excercise and Pilates once a week, I cannot manage to rebuild my muscle strength. Before PMR I could have done 15 miles and play tennis twice a week.

No PMR medic has yet explained this link between steroids, muscle strength reduction, and the inability to rebuild it, nor provided a solution to overcome it.

Linnetbird

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My 79 year old mother was fit and independent until she developed PMR three years ago. She now struggles to walk with a three wheeled stroller and is unable to go out alone. Rheumatologist does not think her balance problems are related to her PMR but reading this thread has lead me to believe otherwise. Maybe I need to find her a new Rheumatologist?

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I must admit I am not so sure of myself balance wise nowadays. I am not sure if it is PMR or not. I find that all the rheumatologists I have seen have not been that brilliant. I am not sure if I really need to see one anyway.

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I was diagnosed with PMR about 3 months ago. Started on heavy dose of prednisone, but have actually weaned myself off it as it is detrimental to my eyes and heart. Pain has returned but with taking Tylenol and watching my diet very carefully, sugar is the #1 cause of inflammation, I have got to stage where pain is manageable (here, I have to say we all different and have varying pain toleration levels) With Prednisone my walking was awkward and still is now I am off it. On level ground I tell myself, " concentrate on good posture." Hills are a problem. I do believe mental attitude has a lot to do with how well we cope with the pain. I hope you have a good support group.

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