Apologies for more questions, but I'm at the beginning of this journey (3 weeks into preds). Whilst I now have very little actual pain (some stiffness) I find I'm like a battery that can't charge and loses power very quickly.
I've had muscle cramps and weird sensations that my muscles are going into slow involuntary spasms (arms, legs and face) and if I have to walk more than 500 yards, my legs are not in pain, but they 'lose power' and I just slow down like one of those battery operated kids' toys (no Duracell in me!) and it feels like my boots are filled with cement. It's an effort to keep walking. I'm not out of breath and no raised heart rate. I just lose power.
My doc did blood electrolytes yesterday which are all normal
Does anyone get cement legs?
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Daisyfield
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For me it was like someone had a sling around my thigh muscles pulling me back & l was trying to walk through mud!
Very common I am afraid. Think one of those deep sea diving suits with lead boots and brass helmets. It does get better and can vary across a few hours in a day. You adjust so it doesn't happen as often by pacing and planning. Although my face did have numbness ...you are GCA?
When anyone asks a question there's probably 10 people or more waiting to know what the "answer" is too so questions are good. ⚓
Thanks and also Mrs Nails...yes and it does vary...but seems to be no knowing...so I can walk 'normally' and then a couple of hours later struggling...but because I 'look' normal on the outside, I must look weird slowly creeping forward.
Try spray magnesium on your legs. As soon I hit an.incline it's like the batteries go dead some days. I had one on Monday but they are more infrequent and I have fibro which can do that too. They are my 5 step days.
I actually get “cement body”. I said in a previous post that I felt like a trap door on the top of my head is opened and a bag of cement is poured in. The only thing that helps me is a small nap. I am getting better so I don’t experience this much anymore. Just so you know, this too shall pass. Best fm
Oh heck! well I've felt like that a bit too..I'll try the nap...also have been catching up on some netflix series...I've never been much of a big TV watcher...but I guess this is a good excuse...more book reading too.
I hope to improve like you too...good to hear it can pass.
Daisyfield, are you in The States? If so, talk to your doctor about getting a handicapped parking sticker. My doc submits a request for a temporary tag for me every 6 months. I don't use it if I don't have to, but there are some days that walking from my car in the driveway to the front door feels like walking a football field with those cement boots on.
No I'm in the UK...doubt I'd get a blue badge and probably don't need one...and seems so ridiculous because I could be walking perfectly normally one day and then cement boots the next...I found myself almost stuck, wondering if I could get back to my car. But I reckon I'd look like a complete fraud. Hope we can both leave our cement boots behind!
Oh gosh, this reminded me of a time when this happened to me, but not until I'd been on pred for months and was down to about 4 mg. It lasted a while, but I seem to be okay now (at 2 mg).
I’ve had the opposite! I would call it jelly legs, felt like there were no muscles in them at all. Fortunately that too passed but it did prompt me to keep walking to find that muscle tone!
I called it jelly legs. Feeling like they wouldn't hold me up even though they did. Also girdle stiffness like I had a tight rubber band round the tops of my legs stopping me walking. I pushed exercise just a little beyond comfort to keep mobile. If I rested it got worse. In the end I got a second hand treadmill and did 3-4 five minute sessions a day. This was because if I walked far I got stuck and couldn't get home. I am GCA though not PMA. It was when I was between 60 and 30 mg Pred so if you are PMR it might be different.
Am PMR...mine doesn't feel like jelly, just really heavy and all the power in them defused. But I'm a bit concerned if I have to go far, in case I get stuck...it's a really weird sensation...and I was thinking if I carried a stick would it help...but I don't really want to and it wouldn't help me actually move forward.
My sister gave me a stick trying to be helpful and it made me want to cry . I didn't use it. I was working so my lovely staff helped me to and from my car and I hung on to OH's arm if we went out very far. My problem was high doses of Pred so I honestly just pushed on and tried to keep moving and it did get better. My Rhuemy gave me 6 free sessions of Pilates at the hospital and I stuck to it and found a practitioner who listened and moderated my movements to what I could do. Slowly I have got loafs better. I really believe in the need for movement without overdoing it.
I know..the thought of it makes me want to cry too...and having been fairly fit and very active...this is such a blow...but actually I've been thinking of doing Pilates or Tai Chi...for mind and body! Problem is, that it's another thing to fit in, in the day when I'm trying to juggle things and do less! And I know that for exercise I love to get out, not be stuck indoors. Great to hear you have improved and found soemone who listened to your needs.
My hubby does Tai Chi it is gentler than Pilates and he enjoys the spiritual side which I wouldn't. Some in his group are in their 80's and have illnesses and say it does them loads of good. I am too competitive so couldn't do the same as him as I would be trying to be better all the time. We even go to different gyms because we each believe ours is better. Mine is half the price of his. I was shy at first because I had never exercise d or been to a gym or classes I didn't even know what to wear. It us just finding your thing. Good luck
Lots of people have talked about a cement suit over the years! Or walking through treacle.
Part of the problem in PMR is that the blood supply to the muscles isn't as it should be and so not only is the supply of oxygen and nutrients to the muscles reduced, so is the removal of waste products after exercise. We talk a lot about exercising with PMR and say you have to train and you have to exercise and rest appropriately: so that means that you may have to slow down a bit, you can't walk at the speed you did, and that if you walk for a given time and then rest for a while you will probably manage more. That allows the available blood supply to do what is required and the rest allows time for waste to be cleared out while you aren't adding to the pile. Hills add to the load - slow down going up hill! Don't carry heavy bags - get a shopping trolley if you must shop.
You will find that as time goes on it will get better - 3 weeks is very early days - and the bad news is that you have to start "training" again. The good news is that it can improve. I told the story of a gentleman who at Easter 2 years ago was in a wheelchair and on 30mg because of a PMR flare - he could barely walk to the gate and back and was in despair. We set him on a "training programme" - for example, depending on how bad you are, Day 1, 5 mins out, 5 mins back, Day 2 rest and assess. If no muscle soreness, add 1 min out so 1 min more back. Rest. Rinse and repeat, adding 1 min to the outward walk each time. It sounds slow - it isn't, you will get to a half hour walk quite quickly. Then look for somewhere to walk where you know there is somewhere to rest for a while - a cafe, a park bench, even just a wall. Then I found I could walk twice as far. Mich was back to skiing in the late autumn, teaching kids all season. The following summer he was out on his bike riding with his friends. He is over 80 and lives in the mountains of New Mexico - it can be done. He has had flares and setback - but still skis and cycles.
Someone says they wouldn't use a walking stick - why not? You don't refuse to use glasses to see or a hearing aid to hear - it isn't any different. I started when I was on crutches for an achilles tendon problem to reduce the risk of falling while it healed - I would be seen walking around the village carrying them so I had them if I needed them! Here the hospital often encourages people to use the rollators for rehab - not least because they allow a more natural walking action BUT you also always have a seat handy when you need it and somewhere to carry your shopping. Don't refuse to consider one as a temporary measure to keep you able to get out and about and be independent. It is not giving in if it is allowing you to keep moving and not lose fitness.
Originally I also did Pilates and aquafit which kept me mobile for the 5 years I had PMR without pred - so I was permanently like you are now. They MUST be adapted for you - no high intensity stuff at first and only low level and restricted reps in Pilates until you have got better. Too much and you will feel worse not better and give up. I needed a warm pool or my muscles just cramped. But even with that - I was severely restricted in what I could do, if I couldn't drive to close to where I was going, I couldn't go. I found how how much I was unable to do when I was stopped from driving for a time (wrongly as it turned out) but after starting pred I did get back much closer to "normal" - but still a new normal. You need to bear that in mind.
Thank you for this reply...yes...I think it's a learning curve too of what I can do...and the stick thing...I know what you are saying but it still feels hard to accept needing one. We've got a pet miniature shetland pony...maybe I'll ride him around...more fun and might cause a sensation!
Getting cement legs is so unpredictable, that's the annoying thing. Doesn't seem related to how far I've walked. But agree...gentle, not overdoing it..building up, staying mobile is all good.
I started using a folding stick in my early 40s after back surgery. The pre-surgery nerve damage makes my left leg weaker than right so a stick helped my balance. I gradually moved to crutches but found I was better with one crutch. For me its most likely a life long thing. 17years later I use the crutch for support when my legs turn to cement. Going up hill is still almost a no-no and every 5 steps I have to stop and take stock. I can be found using my crutch as a prop for my whole body any day I have a bad time...usually with my forehead resting on my arm and crutch. For you a folding stick, or heaven forbid (😉), a shooting stick that allows you a quick sit if you have good balance would help. I will use anything that keeps me mobile. If I need a rollator I will get one, a mobility scooter ....I will race it.
You are only a few weeks in so you won't have even started to process what is happening. You are going to have days when your legs just say no. On your baaaad days if you have to go out and about take all the support you can....even your shetland 😂😂😂. I understand miniature horses are use as support animals more and more. I would like to see you take your shetland to the local shops. 🐎🐎🐎
Thanks Poopadoop and apologies as I've realised I sound a bit insensitive about the use of sticks..when many use them...as I might need to, too. I guess like any changes in life there is that moment of accepting one's own personal journey into it..and that comes with frustration.
Shetland pony vs mobility scooter? Ha! well, the former is better for the environment, provides food for your roses, far nicer to look at...and has the added thrill of bombing off in a completely different direction.
Not insensitive at all for me daisyfield. It is hard to see yourself differently from what you did only a few weeks ago. It's tough.
I am scared of horses. I did used to see a white Shetland called Belly because of...you guessed...her belly. Sadly no longer with us. They are probably called something else when white but I never got close enough for them to tell me. I could have grown pumpkins this year with good straw and manure. 😊
But that journey may not be one-way for us all. PdP knows hers is - but mine wasn't, it improved in the meantime and is taking a small dive at present. Using an aid of any sort may be the bit we need to keep us in the midst of relatively normal life but it doesn't mean it is a permanent fixture. My crutches didn't get taken back to collect the deposit, they are in the cellar and dug out when one of us needs a helping hand. But not always in use. I'm working on OH that he should get a lightweight mobility scooter - we use a campervan and that means great care in selecting campsites at present due to his restricted walking ability. A mobility scooter would be his version of the electric bikes so many people use and make our trips simpler.But he wouldn't need it all the time.
Re-the cement legs. I found that after walking (used to run and mountain hike)for about 20-25 minutes that if I sit on a bench for a few minutes doing leg stretches, I can walk another 10 minutes or maybe more. It also helps me to have someone wanting me to stop for a few minutes to just chat. Somehow the stopping and standing, although brief, helps me to continue. It really sucks doesn't it? I tell myself each day that am very fortunate to be able to get out of bed and continue some kind of meaningful life. Good Luck !
Yes...good advice, and one I'll try...and exactly...I can still do a lot and there is the potential to get through this...and have lost friends to really awful illnesses.
And slowing down does give you chance to see and chat...must be a good thing.
I have now given in to using a stick and it does help. I feel I need something to hang on to so on days I take out a shopping trolley I don't use the stick. It does make me feel more confident and has the added bonus that if I'm trying to cross a road some kind people will stop to let me across. Until a couple of years ago I was reluctant to use a stick but now, at 79, I feel justified.
Are you taking enough predisolone?The cement boots etc are a symptom,a sign that disease is active.Cant force cement,just keep chipping away!!I thought Id been transferred to another world with colossal gravity when I first started..thought I was going mad what with weird feelings and of course the PAIN.Its been a year now and at present settled and accepting of my lot with enough steroids to control it.However yes some days I get this hefty" planet Jupiter" feeling..just have to slow down because few days later it passes.also I didn't know that I was very anaemic never had anaemia before but found on hb blood test.Wise gp did not treat so it quietly resolved as P>M>R> was addressed.{Iwas carefully investigated for other causes first!]Anemia made me breathless,tired and again that heavy feeling Im sure you would have had h.b checked .Good luck!
Thank you...yes, slightly anaemic. I'm on 12.5 pred and don't have any pain anymore...so hopefully it's being controlled. I had this feeling before reducing so I don't think it's coincided with reduction.
I agree...hefty planet is a good way of describing it
Thank you everyone, I am new to this site but over a year into PMR and steroid taking, now down to 7mg from 20. The last 2 weeks have been awful with all the symptoms you have all been talking about reappearing again. Have just had more blood tests.
The pain in muscles across my shoulders is severe and affecting the use of arms etc. Tiredness is extreme and my toes seem alien to my feet. It is so good to hear from folk in the same boat,was starting to think I was a fraud, friends and family seem to think because I look normal (apart from gaining 3 stone) I must feel normal. No one seems to have heard of PMR, can't blame them for that I as was the same until it smacked me in the face. It is so so difficult not being able to cope with everything that was once a doddle.
You have obviously got to - and gone below - the dose you are looking for: the lowest dose that gives the same result as the starting dose did. You are not reducing relentlessly to zero - not the same thing!
Yes...I think when I get cement legs I must look like a slo-mo version of myself...but the next day I might walk fine...so I'm sure people will think I'm a fraud and putting it on! Hope you are feeling better without pain soon.
Can relate to this. I often just grind to a halt and have to lie down! It happened to me in Waitrose the other day- I had to prop myself up with the trolley 🛒 ! I just pretended to be overly interested in the cheese !
Thanks all, you make me smile......a lot. Have been back to Doc' who after a year of thinking I have PMR is now in doubt & thinking it maybe Fibromyalgia, I am going to up the preds to 20 (at present on 7) & he will ring me next week, in any event he wants a second opinion as my last blood tests don't show any inflammation just the same as a year ago. ????? xxx
Well I think thats why I have to take a high dose again, to see what happens.Last time ,a year ago I was utterly shocked at the results.Like a miracle pill. That result was what diagnosed PMR.
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