Greetings people. I read on here so many times about people going for short walks, long walks, more walks, less walks, all kinds of things about walking. How come I can barely walk at all? Walking from this chair to the loo (about twenty yards, I think) has me tottering, legs like jelly, and exhausted once I get there. My Rheumatologist isn't 100% certain that I do have PMR (she said), so if not, why on earth can't I walk? Up to 14 months ago I was walking three miles a day, every day except weekend sunny days in the summer when there's too much traffic, and there are no pavements. I was given anti-depressants because I was getting so miserable, but they don't really help all that much. They did for the first month or so, but not any more, so I've given them up.
Can someone PLEASE tell me what's wrong with me??? And many thanks in advance.
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ChrisinNam
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I have to say I could hardly walk for some time, the prednisolone helped but I built my walking up really slowly. A few extra steps each day. I use a 2alking stick which helps, in fact I started with a Zimmer frame and then a Walker with wheels!
Do you use walking aids? I find using crutches makes a massive difference to how far I can walk - and once you can walk that bit further, it does improve over time. I'm using them for tendinitis problems that have really impaired my walking over the last 6 months so hopefully temporary. However - when I decide I need them for longer I will get a rollator - my husband struggled to get around the flat but did better outside with the rollator. The biggest plus is you always have a seat to use when it gets too much.
I have experienced this too and the accompanying depression. Lockdown really didn’t help. It made me a bit agrophobic and fearful about going out. I didn’t trust my balance and felt awkward and wobbly at first, with “ use it or lose it” ringing in my ears. I made myself go for little walks round the block on my husband’s arm. I got stronger quite quickly and this was a surprise. You need someone to help you at first. Once you get going it cheers you up. I make it a rule to go out every day. I have Norwegian walking poles and a little peddling device but I managed without either. I wish I was there to go for a little stroll with you. It’s scary at first, then it isn’t anymore and it’s lovely.
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Morning ChrisinNam All these replies are most helpful in managing where you are but they don't answer your question. ."what's wrong with me"? In truth no one can tell you but we can speculate if we have had it. I have been experiencing something similar these last few weeks. Wobbly, unbalanced, unable to make the normal walk with my dog, out of breath, no leg strength. I think it is multi causal. Firstly the fluid in feet, ankles, legs make it feel like walking on sponges and definitely affects your balance and normal reactive correction to balance. This is real and you need to be wary of turning fast. You should adjust to the slower reaction. Then there is loss of muscle which affects how capable you now are of supporting your normal activities and weight. If you have put some on like I have then the less capable muscles are working harder. Not a good combination. thirdly, the pred is still affecting this degradation. Fourthly, the condition PMR and GCA are still affecting the way your muscle is able to work. I'm trying to unpick all these and find answers, but at the moment I am limited in what I can do and trying hard to improve this limited ability. I am hoping it's just a phase I am going to get through. Increasing cardio vascular activity is important and also deep breathing to extend the lungs to their maximum capacity is important. I have found the lungs gradually lose their capacity and gradually increase retention of fluids when you don't make them work through your gradually lessening activity. So getting out of breath in a controlled way through exercise which doesn't unreasonably load you is a good thing. Keep a check on BP and heart rate and recovery. Choose a method that suits your ability and physiology. Make sure your muscles are properly conditioned and responsive before you do this. My exercise regime is an easy approach to this. Hope this makes sense. Good luck and don't worry. It's just another problem to think through and adjust to.
I think you may have it.Copied here the essence of a paper on it . In layman terms we see: Changes in muscle fibers, including atrophy (shrinkage), lipid (fatty) deposits, necrotic (dead) areas and increased interstitial (connective) tissue between fibers. Severe damage to the muscles may have occurred while the muscles appear normal in size[2]. Corticosteroid induced myopathy: Occurs through both catabolic and anti-anabolic mechanisms. Catabolic mechanisms - corticosteroids upregulate proteolytic systems, this increases the proteolysis of myofibrillar proteins by dissociating actin from myosin. Corticosteroids also induce myocyte apoptosis.Anti-anabolic mechanisms - corticosteroids inhibit protein synthesis and myogenesis. Additionally, corticosteroids with high mineralocorticoid activity lower serum potassium and phosphate, which may contribute to muscle weakness[4]. Muscle biopsy, if performed, reveals atrophy of type 2b (fast-twitch muscle fibers), with less loss of type 1 (slow-twitch muscle fibers). The preferential atrophy of type 2b fibers, which have high glycolytic and low oxidative capacity supports the predominant involvement of extremity skeletal muscles rather than respiratory muscles[4]. Presentation Includes: Increasing intolerance to exercise as muscles start to weaken with use and pain increases. Muscles most affected are those in the arms and legs and the pelvis in symmetrical fashion.[2]. Patients may present with several complications of chronic steroid use including: Cushing syndrome stigmata (eg moon facies and fat redistribution); metabolic complications, including obesity, diabetes, adrenal insufficiency, hyperlipidemia, hypertension, skin, and bone disorders, including osteoporosis and avascular necrosis; and increased susceptibility to infection, gastritis, cataracts, glaucoma, and mood/neurocognitive side effects.[4] Treatment Reducing or stopping steroids is the only effective treatment although exercise to tolerance may increase muscle strength. If stopping the steroid is not possible, changing to a different type of steroid or altering dosage (every other day) may help reduce symptoms. Fluorinated glucocorticoids such as dexamethasone should be replaced with nonfluorinated glucocorticoids such as prednisone. Other experimental treatments may be tried such as IGF-I, branched-chain amino acids, creatine, androgens such as testosterone, nandrolone and dehydroepiandrosterone (DHEA), and glutamine[3]. An adequate protein intake is helpful in preventing rapid acceleration of symptoms[5]. Physical therapy, with both resistance and endurance exercise, taking into account baseline functional status, is recommended to help prevent and treat glucocorticoid-induced myopathy[4][5] Physiotherapy
Useful in preventing and treating muscle weakness and associated problems e.g balance, in patients receiving glucocorticoids. See section in Myopathies Prognosis Corticosteroid-induced myopathy is reversible, with improvement in myopathy within 3 to 4 weeks of tapering corticosteroids, although recovery can take months to a year. Complications of corticosteroid-induced myopathy include the morbidity and subsequent mortality associated with chronic muscle weakness. Patients experience decreased quality of life through the inability to perform activities of daily living and are at increased risk for falls and injury. Physical therapy attempts to prevent these sequela.
Please don't beat yourself up about it. I have felt quite bad reading how much other people manage to walk. The result is that I always make myself start to do a short walk every day, and it always turns out to be a mistake. I did that yesterday and tomorrow and now can hardly keep awake! You're obviously not sitting around because you're lazy, so you have to do what you can within what is tolerable, remembering that if you do too much one day, it will catch you up the next. The advantage of the exercises people have posted is that you can do a very little at a time. Don't forget to feel virtuous afterwards!🙂
Oh, I also have not been able to walk with PMR. It all began with not being able to stand for very long, the not walking very far followed quickly. Every now and then I take a walker on wheels with a seat to try some mobility. I do not go too far and sit down frequently to prevent later pain. I am very cautious not to start pain up as that in itself is the most discouraging. I was quite the walker before PMR, walking 3 to 6 miles everyday, swimming for an hour many days, when biking always over 10 miles… this immobility is quite the change, but for me part of my journey with PMR. You are not alone… be good to yourself and I wish you the best.
Very many thanks, Janetknit. It's really good to know that other people have, or have had, the same problems. My family is very far away, elder son in Nammibia, younger in Hampshire, which is a LONG way from North Wales. Thank goodness I can still drive. Don't know what I would do if I couldn't!
Glad to know driving is still on your abilities. I also depend on the car for getting about. Hard when family is far away. Hopefully there will be a chance for them to travel to see you. Thoughts are with you… hang in there!!!!
I can’t walk either I have to use a mobility scooter when I go out and a Rollater around the house. 12 months ago no problem then gradual decline to not able to walk round the house. I am having tests now starting with seeing if it’s nerve damage or long term steroid use on my muscles making them weak. Or just arthritis made worse by PMR and steroid use.
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