Wobbly legs and hands - is it the pred?

[CarrieP]

I am taking 15mg pred for PMR and have been for 6 weeks. Although the pain has eased of PMR my legs and hands are terrible and feel very wobbly. I am wondering if it could be a side effect of the pred as it seems to be getting worse and I have a terrible fear of falling over and have to have someone with me if I go out now.Has anyone else experienced this?

[Rose54]

Hi

Month before diagnose and while on preds for about 2 month I was so unsteady on my feet I was not safe to go out on my own .

My Son said it looked as if I was intoxicated as I wobbled from one side of the pavement to another .I could not judge if it was safe to cross the road and stepping of the pavement took ages.

Several times I had near misses with cars I felt so stupid, mornings where worse symptoms where improved in the evening.

I lost a lot of my confidence in going out and had to persevere to keep going out.

Happens occasionally now usually when I am tired but not anywhere near as bad as it was.

Best Wishes

Rose

[isabella2015]

CArrie P You have just reminded me that before I was diagnosed I had started very slightly to be unsteady and I did wonder if anyone would think I was tipsy, but it wasn't much so I'd didn't mention it to the doc. IT was before preds and now I don't know if it's stopped or whether I am used to it. It was much less than you by the sounds. I really hope it has subsided for you.

[CloudGazer6]

Hello CarrieP

Don't worry - it's not just you. I'm still very wobbly and off balance despite being on high-dose medication. I also get episodes of 'jelly legs'. I'm careful to stand away from the kerb when I'm waiting to cross the road when I'm outside.

In case it helps, various people told me about their own wobbly PMR 'lurch' experiences here. You are not alone!

healthunlocked.com/pmrgcauk...

[CloudGazer6]

There is also this thread about balance and wobbling:

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

As you see - lots of people identify problems with balance and walking. Part of the "new normal" I'm afraid. And it isn't necessarily the pred - my balance problems were worse before pred than they have been since taking it.

Some years ago group of ladies with PMR in the northeast of England participated in a Nordic walking course set up by AgeUK (I think). One was unable to walk without a zimmer to start with but found the pair of walking poles used in Nordic walking gave her the confidence to walk and after 6 months was able to dispense with the zimmer. The others all also said they found their balance improved.

I often see older ladies in town here using ordinary walking poles rather than walking sticks - the Nordic poles are slightly different because they have a strap that keeps them attached to your hand even if you aren't holding them which is useful. But the fact you are using a pair is better for balance and the poles allow you to walk in a more normal way - which in the long term is better. You also don't grip them so hard and your hands will thank you!

[Celtic PMRGCAuk volunteer]

Carrie, my balance was all over the place until about 6 years ago I saw an advert for a course of Nordic Walking sessions to which PMRpro has just referred. The sessions were run by Age UK in my area, and I was lucky enough to get on to the last of their free courses. I would recommend it to anyone, not only those with balance problems but also anyone who is concerned about their bone density - I met someone on the course who said her bone density had improved due to her Nordic walking sessions. Plus with PMR, once the worst of the arm and leg pain is under control, it is so much easier to walk with the two poles.

[HeronNS]

In my recent and limited experience, Nordic walking is a super activity for someone with a) PMR and b) low bone density. I've been using poles for several weeks and find that people are interested and ask me about them. One neighbour tells me that if I'm still using them in three month's time he'll consider taking it up too. I've found if I do too much in one day my shoulders (the shoulder blade area) get really really painful, but it does clear up in a day or two, and I must attribute it to lack of muscle strength in the area, which hopefully persistence in doing this activity will remedy.

Reading that studies show prednisone can affect bone formation at levels even below 2.5 mg., obviously there's an incentive to keep plugging away. So even if poles aren't needed for balance they are definitely worth considering. I've found Nordic walking to be a lot more fun to do than I expected, actually!

[Sallyaches]

Just to add the walking poles are not expensive, I bought mine from Go Outdoors or some similar shop and bought the cheapest pair for under £20.00. They are great if you are on bumpy ground and invaluable in slippy winter weather. I think anything that gives you confidence is well worth a try and being able to put a stick down on a step or kerb before stepping made me feel more stable. Good luck.

[casse]

My legs sometimes feel like jelly and they're going to give out also. But I think it may be because of diabetes drug induced from the prednisone and sugar related. Just a thought.

[isabella2015]

I certainly had jelly legs and often wobberly, and that was before the preds I then used a 4 wheeled roller, went over to a walking stick, didn’t feel safe, so back to the roller and abit on my own. Will find out about the poles and Nordic walking. I hope you improve and feel reassured by all the comments!