I was diagnosed with PMR three years ago and prescribed 40mg Prednisolone because there was a possibility that I had GCA - thankfully I didn’t - and have eventually managed to reduce to 6mg. I have been on this for about four weeks and have felt ok. No typical PMR pain, just a return of the arthritis in my neck and back from an old injury. However, I’m now suffering with balance problems. I have started taking short walks again each day, following the relaxation of the lockdown rules, but I’m having great difficulty in even walking in a straight line. Thankfully I’ve not actually fallen but I very often have to hold to something to prevent this happening.
I’ve been searching through previous posts, trying to find some advice, but it seems that most balance problems are associated with dizziness and I don’t suffer with that.
If anyone has experienced this or has any advice, I’d be very grateful.
Thank you
Jan
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Janann25
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Hi janann25, it may be a bit of muscle weakness. I have a gammy leg that throws me aside a bit. I know you may not want to consider it but a rollator might be useful just while you build up the strength. My friend had a fall and was one-sided so I made her get one and she is off at great speed. I haven't seen her since lockdown but she said it was so helpful and helped her start to walk properly again. Hopefully as your muscle build up you will be fine but for a while try not walking and looking side to side or upwards while moving ....that is impossible for me. 🌻
Thank you - I have a walker in the garage which belonged to my father-in-law so I’ll give it a clean and give it a try. It’s not a rollator but it has three wheels and handles so it may well help me. Watch this space!!
I too have the wobbles from time to time find a simple cane or walking stick(s) useful. I keep a collapsible cane handy in the car for shopping or traveling.
The trick with these problems is finding what type of balance problem it is. Here are a few questions. Can you tell if it is because the ‘world moves’ and you are having to play catch up or your legs don’t do what you ask? Do your legs feel wobbly at the joints or weak so that if there is any change in ground level, like a bump, your muscles can’t compensate? Are your eyes happy about focussing on your surroundings as they move by? Are you ok in the house but not outside or are both the same? Does this happen every time or just in episode? Cant say I’ve got the answers but it helps to narrow it down.
Ok, I’ll try to explain. The world doesn’t move, I just find myself feeling as if I’m about to fall. Yes, my legs are definitely not as strong as they used to be and sometimes appear to have a mind of their own. But they’re still strong enough to be able to do my Pilates exercise routine. I’m better in the house and garden and it’s definitely worse when I’m out walking. Hope this helps and thank you.
Youve got some replies to help here. At low levels Of Pred I felt a bit more wobbly than before probably due to low adrenal function and long term muscle weakness from Pred. I think the muscle bit was largely due to all the small muscles that hold things together being weak, the stabilisers. Have you ever taken supplements like magnesium, B vitamins and vitamin D? I needed a little extra salt after low salt with higher doses too.
Keep and eye on your neck and do little and often walking with an aid, if it makes you feel more confident. Years ago a practitioner of some sort said to me that it is better to walk slowly but properly than faster with the wrong gait.
My hobby is line dancing. A few months after being diagnosed with GCA I felt a bit better and went back to classes, I noticed that for no reason at all, I would almost lose my balance. I never found any reason for this.
I have arthritis in my neck, Cervical Spondylosis, it can certainly cause balance problems at times. My mum in law even used to black out with hers. Tell your doctor. It may have progressed a bit
Yes, I wonder whether the arthritis in my neck and back is contributing to the problem. I broke two bones in my lower back when I was in my thirties so this probably doesn’t help! I would normally try to see a doctor - any doctor! - but of course that’s not possible at the moment..........
Your neck won't help at all. Thats why I can't ride a bike and haven't been able to since all my neck issues start. ....
I remember walking with a friend a few years ago and realising that if I tilted my neck to the left I walked much straighter. But it was more painful. Sods law.
It is perfectly possible to see a doctor - my nurse daughter was holding forth on this the other day! What you CAN'T do, they WON'T do, is get a f2f appointment on demand as you did before lockdown. You must call and get a telephone appointment. If the doctor decides they need to examine you then they will arrange that.
I had have two telephone appts with my surgery since day 1. Both times was better than a f2f and one call from rhrumy and went to blood test drive through as you know. I have felt better about my medical care since the lockdown than I have in years!!!
I also have balance problems - not due to dizziness. Mine is certainly to do with arthritis - and also to age.
My husband has to walk me round the flat every morning to kick start my circulation and loosen me up.
I don't know how old you are, but if a rollator is a no-no for you try nordic walking sticks (or even a walking stick). If you fall and break something you'd be in real trouble.
I was about to suggest nordic walking poles too they helped me a lot. Then this image of you having to do a rolling start to get going in the mornings made me smile. Thanks constance I needed a smile.😉
I’ve been on Pred for six years, reduced to 3.5mg and stuck there at the moment. I did lots of aquacise which really helped my mobility but with lockdown it’s not been possible. I started going out for walks and my balance wasn’t great at all. I now have a walking pole which has helped give me more confidence and as I’m now walking every day I’m feeling stronger. I also started chair Pilates classes via Zoom and I think this is strengthening my core. For me I feel it was muscle weakness and slowly that’s beginning to improve. Taking things slowly and having a rest when I need it helps. I agree with SnazzyD that you need to find the cause of your balance issues and can then work to improve them.
Thank you for the link which Ive just read - but I have to admit I found it a difficult read. I have very little medical knowledge and I’ve been told I don’t have GCA so I’m not sure how this applies to me. And again, sorry to bother you but what exactly is the “eighth cranial nerve” please? So sorry to have to come back to you but I really would like to know more about this.
The most likely cause is a combination of long term PMR and a couple of months doing very little physically has really gone for your old injury. Our back muscles do a fantastic job of keeping us upright - it is a constant balancing act of all the muscles in your back and any one (or more) of them being a bit out of sorts is enough to make your balance off. You say your neck problems have returned - that would be enough.
Either walking poles or a rollator will help your balance while you build up general muscle strength - either is preferable to a walking stick as they allow a more normal waiking gait - and as someone has said, slow to start is also better as the gait is more normal. You can build on speed later if you want to.
I was on 40ml prednesiolone for over 10 years. I am now suffering with arthritis badly, balance dreadfully. So it seems it is all part and parcel of the dressed steriods💊 sadly.
I had/have balance problems. I use a rollator or walking poles. I had hearing problems early on when diagnosed with PMR. I did wonder at the time if they were linked. My GP thought so.
Now my hearing is ok. I have recently tried to ride my bike. My balance is still not good. Its been three years since I last rode and gave up as I came off it. I would love to cycle again. I also have arthritis and walking is difficult. Also have it in my shoulders and neck. Interesting that the replies linked cervical arthritis with balance problems. Thanks, I think I will ask my Rheumy about that when I have my telephone consult.
Hope you get to cycle soon. Thanks for raising this issue as its been helpful to read all the replies.
I have balance issues also. Plus, my spatial ability is gone. My elbows look like a war zone. Much worse since vertebral fractures and resulting lack of physical activity. Even in my home, I tend to walk and touch handy furniture, and I walk sort of “spraddle legged”. 😒. I am using the walker outside. Just pushing it in front of me( not leaning on it). Really gives me security. Am hoping all will improve as I build up muscle again. Now that’s going to take awhile, as am one of the oldies. 😁 My best to you.
I've only been doing route marches round the flat and fleeting visits to my downstairs garden in the past two months but when I used to go for normal walks I found a walking stick was useful, more for the feeling of security than for actual support. Only exception was when I would wobble on the edge of the kerb before crossing a road then I did need the support.
I’m lucky to have a garden so I have been getting a bit of exercise since lockdown but I’ve only just started to have a walk. I still have a walking stick somewhere so I’ll try that and if that doesn’t work I’ll try the walking thingy which I’ve mentioned in another reply.
Yes, I have a BP machine - bought one after having a scare with my BP - and I’m pleased to say it’s behaving itself at the moment. So pleased to say that there’s something still working ok!!
Hi there, I had problems with my balance as soon as I started Pred and the symptoms of PMR were masked. I walked with a stick when outside and had to put up with the Rheumatologist looking at me as if I should be sectioned when I mentioned the problem. My sense was that if I strengthened my leg muscles, I would improve. I bought one of those small, mini exercise bikes that you can sit on your sofa and pedal while you watch TV or listen to music. It did the job and eventually I was able to give up my walking stick.
Hope you can get this sorted - PMR knocked my confidence and feeling unsteady made me doubly concerned about getting out and about on my own.
Hi Jan, I recognise what you are saying. I don't get dizzy, no headaches. I do have heavy feeling legs and can no longer walk in the natural way people do but the stagger as I walk along is different. People can look at me and think I'm drunk. I've been referred to neurologists but so far they have no suggestion or solution. I was offered a Lumbar Puncture to test my spinal fluid but it was such an awful experience they did not manage to extract anything, so no results.
So I am afraid I have no solution but just posting so you know you are not alone and I understand and recognise your experience. I also do gentle foundation Pilates, and can manage most things apart from balance on one leg.
Only thing Physio has suggested is looking straight ahead and standing on one leg to help practice my balance.
Prior to PMR I was an active walker and tennis player.
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