Good Morning! I've just been reading Uglow's post "Crying", and really find it difficult to understand various people's replies about "walking therapy". I used to walk three miles almost every day. I can barely walk from one end of my house to the other now (I live in a little old Welsh cottage). It seems like my legs just don't want to support me, and my hands are shaking so much I'm finding it difficult to type this post, having been a touch typist all my life.
Now on 12mg/day, planning to drop to 11mg on Friday. Diagnosed a year ago.
Many thanks for any and all comments.
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ChrisinNam
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I couldn’t get up and down the stairs when diagnosed. It took me a while to be able to leave the house for a small walk 50 steps to the end of my cul de sac, I just built it up very slowly and often had to ring hubby to ask to be collected in the car. I can walk for half an hour now especially if there are benches or walls!
Hi Koalajane, I seem to be exactly the other way around. When I was first diagnosed I could still walk my three miles! And I continued walking for some months. Just these last three or four months it seems to have become very much worse. I did try the "little bit further every day" way, and came a cropper. I know that my legs are losing strength. But yesterday I was able to get a post out of the ground that has been bothering me for years. How does that work?
I wonder if you’ve developed some muscle weakness due to Pred use? Your walking limitations seem a bit unusual to me. Hard as it is, make sure your doctors know. That garden stake would definitely have defeated me though. I bought a little peddle set to strengthen my legs - I’ve gone a bit wobbly but I can walk, on the flat, quite well.
Hello Chrisinam. I'm so sorry to hear of your difficulties.I am bothered by the fact that it is a year since your diagnosis and that you still have these mobility issues. I'm also concerned that you are intending to reduce your dose while you are in this situation.
Were you ever pain-free after diagnosis?
I've read some of your earlier posts and will say that your GP has very little/no understanding of PMR. You really need to be seen by a rheumatologist who will hopefully set you on the right path. It's within your rights to ask for this and if your request is refused I strongly urge you to change your GP.
By the way, the nurse practitioner was correct in saying you should taper slowly, but any reduction should not happen until you are at the very least seeing a 70% reduction of pain and stiffness.
Exercise is an important aid to recovery-or remission in our case- and the longer you go without the more your muscles will weaken. It is a big mistake to try to do more than your body can cope with and any exercise should be built up slowly over time. Over-exertion will set you back without doubt.
Many thanks everyone for your replies. Strange thing is I have little or no pain now. I've just come back from the library. I parked as close to there as I could (still awaiting a Blue Badge) and managed to get there slowly up a very slight slope, but getting back to the car was an impossibility. My legs, in fact my whole body, was/were shaking so much I was in danger of falling. I shouted and a lady came over an helped me. My intention was to call in at the library on my way to get an eye test. I've had to cancel that now. I have phoned the surgery and am awaiting someone to call me back. But I almost feel like dialling 999.
You could call 111 if you don’t get a quick response from your surgery. I’ve had wobbles/ shakes myself and I know what it feels like - horrible. My feeling is that you need a medical check ASAP - it may be nothing to do with the PMR.
Take care of yourself and let us know how you get on 😊
Nextoneplease xx
If you’re really worried, do call 999, it’s what they’re there for 😊
Yes - a rollator might be a good idea. - not that many of us like the idea, but something like this might help keep you safe for the moment. Also are you wobbly indoors? Do you have bath rails (I do) and bannister rails etc (ditto, I couldn’t manage without)
Dropping to 10mg, not sure…..although I guess it won’t do any harm at least for a day 🤷♀️ Really it seems to me you need thorough investigation - don’t be fobbed off with vague answers from your GP.
All the best and I hope you’re feeling a bit better now x
Are you trying to do too much for a start? Sometimes it works if you start with just a few minutes - say 3 mins out and 3 mins back. Rest next day to see how you are. Next day add 1min each way, rest and assess the next. If it was too much go back to the previous level and work on that until you feel good with it and then try 1 min each way extra again. But you DO have to start with a VERY small amount and you DO need to rest on alternate days.
Hi again ChrisinNam 😊Do go to the GP tomorrow and fully explain your difficulties if you can (though it may be a nurse taking bloods so you may need a GP appointment when the results come back).
I think it’s difficult to know what your plan should be until you know what is making you so shaky. So while you wait for results I’d say stay safe, don’t overdo anything, eat well and be rigorous with taking your pred. Then when you have test results you can come up with a rehab plan…..
In the meantime do you have any help at home? Have you ever had an occupational therapy assessment? OTs are very good at coming up with aids and adaptations that keep you safe and promote your independence. Their aim is to enable you to do the maximum you can, and to that end in the NHS at least, they often work alongside physiotherapists.
I wonder whether your GP would refer you to one?
Otherwise, sit tight and take care. Thinking of you 😊
Thank you, Nextoneplease. No, I have no help at home, my husband died eight years ago, and I've been alone since then. Also no near neighbours. Nearest family is five hours drive away. Or six thousand miles! I think I might ask the GP tomorrow - if I see him, that is - for a referral to an OT. One came for my husband when he was finding it difficult to walk. But Cancer is treated very differently from PMR, isn't it?
Hi - at some stage you may like to check out Lifeline or your local council equivalent. I too live on my own and recently broke my hip. For a small monthly subscription I wear a bracelet with a button to press should I fall or experience another emergency. It puts me in touch with an operator who will contact medical services/neighbours/ family and get me the help I need. It’s a 24 hour service. I was surprised at how relieved I am. If I had been on my own at the time of my accident I could have lain on the floor in a lot of pain for hours. It also relieves my children’s anxiety on my behalf. lifeline24.co.uk
ChrisinNam Hi. Firstly your muscles are very definitely weak and probably at the cusp of proper support. Have you looked at my mobility and exercise post? It tries to explain and address precisely the issues you are facing. I can feel and see the muscle disappearing from my legs and need to put it back. That takes effort and the energy to do that is missing on my level of pred and sounds like your gp making you drop is dong the same because you can't cope. The balance between exercise to enable and sustain our current and hopefully improving level with the need not to tire ourselves and risk a flare is different for us all but we must try to find it or we just continue to get weaker. Sorry to say this as it isn't easy but I think that is the nub of it. Worth a shot though to improve. you have to make it possible to improve and that means you have to make the joints and muscles ready to do the necessary work to strengthen them. I would think like me you have lost a lot in the thighs and that is the powerhouse of support, balance and simply getting in and out of a seat.
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