Balance problems

[Sorop]

Hi does anyone have a problem with balance? I now have to walk with two sticks or a trolley. It is worse since I had to increase my steoids to 35mg because of a gcapmr flare. It's pretty scary thinking this is not going to improve. My legs also feel dead weights. Any thoughts anyone.?

[Bittebitt]

I had balance problems when I was on high dose prednisolone for ITP, another autoimmune condition that I have. Started on 100mg, but tapered faster than is usially done with gca, for example. Was down to 60mg within ca four weeks. I got dizzy spells, and my thigh muscles faded away quickly, but now that I am on 12,5mg they have come back almost completely. I am still a little bit dizzy at times, but I have found a way to pace myself so that I avoid falling. Dizziness is a very common side effect, but you should have tested your BP, to be on the safe side.

[1Purplecrow]

Just to reassure you, the balance issue is scarey,, but it does improve with time. It might be helpful to try some balance exercises, but most definitely, use the sticks/trolley anytime you feel the need.

The lead weighted feet and arms is another experience that passes with time. I found a brief rest ( lie down) often helped the feeling pass within a few minutes. Then I was able to resume my task at hand.

As you know, a fall could result in broken hip, etc., and would be far worse.. ....so we just use the equipment as we use any other medical necessity! Hopefully you pass thru the worst of this phase soon.

Kind regards, Jerri

[Rosedail]

I had trouble with balance even at lower doses of prednisone. I worked on it on a bit with a trainer...things like holding on to a chair with one hand and leaning over to pick up things off of the floor...over and over. I held on to the railing even to go up one step. I had PMR, eventually weaned myself off of the prednisone, and no longer have balance problems. It's not likely I'll ever be as agile as I was before the PMR, but the balance issues seem to be behind me. Best to you!

[Hindags]

I have had the wobbly weak balance issues from time to time less Pred dose related than time of day. Late afternoon to early evening is when that tends to hit, especially if I've been sedentary at work. It usually is better later in the evening, before I take my daily Pred. at ten PM.

Nothing in the morning even though I haven't been walking around at night.

I started doing squats and other exercises to rebuild muscles, though I do have to be more careful with exercises now that I'm at 10.5. I seem to injure more easily these days. But for all I know I could be in protoflair mode. Time will tell.

It remains a mystery to me.

[SheffieldJane]

There is no reason at all that this common side effect of Prednisalone will not correct itself once your dose comes down. My balance problems have all but disappeared now I am working towards 6 mgs. I can even hop on the sofa to pull the blinds down and carry a toddler on one hip coming downstairs. Seemed impossible a few months back. Courage and patience, Courage and Patience.

[Sorop in reply to SheffieldJane]

Thank you all for your advice and encouragement and I will try and have courage and patience in future. I was reading a book about a lady who loved her garden which was unfortunately invaded by bindweed. She could not dig it up or put weed killer down so she put in pea sticks to support it. She says sometimes even though you do not wish to have to deal with something you have to respect it and get along side by side. I feel that pmrgca is my bindweed and guess have to find ways of living with it. Best wishes to you all.

[SheffieldJane in reply to Sorop]

That's an inspiring story and exactly what we begin to do when we stop the denying and the fighting it.

It applies to me supporting my daughter, husband and my two beloved grandchildren in their preparations to fly off to Australia for a year. Sometimes feel like I am helping build my own scaffold. " Why can't you come granny"? Aargh!

[Hidden in reply to SheffieldJane]

Take it as the massive complement it is. 🌻

[Hidden in reply to Sorop]

I never thought of doing that with the invading bindweed. We learn a lesson in everything. 🌻

ps and I have obviously gone to soppy end of day lol

[Patience_1]

Oddly, I have not had balance problems until the past fortnight (I'm now about 18 months into pmr, nearly 1 year post diagnosis and currently on 10.5mg). So, am getting dizziness on a relatively low dose. It happens when I lie down, and if I get up too quickly; also when I bend over. My blood pressure is ok, so I've put it down to yet another perk of the pmr or pred, and am waiting to see if it passes. If not, I guess I'll need to get checked out as it's not following a logical pattern of being the result of higher doses. It is reassuring, though, to read about others' experiences - thanks to all for sharing their information.

[PMRpro Ambassador in reply to Patience_1]

Is your BP really OK? You may have postural hypotension - just your BP is slow to adjust when you change position.

[Patience_1 in reply to PMRpro]

I've only done self-readings so far. My pressure is always slightly on the low side, and no different now. The wooziness goes away within moments, and I suspect your suggestion is right. What's a bit puzzling to me is - why now, at this particular stage? Will keep an eye on it and get myself to the doctor if it worsens.

[PMRpro Ambassador in reply to Patience_1]

Why not now????

[Patience_1 in reply to PMRpro]

Because I'm not back in the UK for another 6 weeks and don't want the hassle of going to explain things to a different doctor; also, I'm pig-headed; and also I have always preferred going to the dentist to have teeth pulled rather than visiting the doctor! I know I really will have to bite the bullet and go, though, if it doesn't improve ;-))

[PMRpro Ambassador in reply to Patience_1]

Didn't mean that - you said "Why now?", I replied, "Why NOT now?"

[Patience_1 in reply to PMRpro]

Cross-purposes - must be one of my muddle-headed days! Why now because I'm thinking it could be a side effect of the pred, and yet I'm now on the lowest dose I've been on since starting it. But, I know the body is a complicated mechanism and it could be some other change in my metabolism that's sparking with the pred. I'm doing nothing different - eating, exercising, resting etc. If it goes as suddenly as it came it will remain a mystery!

[BonnyQuine]

I had balance problems before diagnosis, so maybe related to GCA. ?? Used to be particularly good at balancing - one of the early signs that something was amiss was falling off a ladder. Pred, with its weakness + wobbliness, did not help. (Started 40mg last Nov; now stuck on 10.5.) Not only do I no longer balance well, but have become clumsy - movements less precise + tendency to drop things, etc. Time of day makes no difference. I v much hope that it will improve as the Pred dose decreases.

Fingers crossed.

[PMRpro Ambassador]

Lots of people have complained about poor balance - some have found using Nordic walking poles helps them improve their balance.

[SheffieldJane]

I can tell that I am a lot better. I remember you advising me last year to get Nordic walking poles because we were going to Hydra and our accommodation was in a windmill on the top of a cliff reachable only by a winding stoney track and some steps. I managed really well with them! I am not exactly a mountain goat but we are returning this year and it doesn't daunt me. The view at the top is just heaven. I will take my poles if only for my OH.