Walking and balance

[Sheribrim]

Diagnosed for second time with pmr. Has anyone found that steroids have affected their balance or walking? I'm on 17 mg and reducing slowly. it's like my brain has stopped telling my legs what to do.

[Rose54]

Hi

I had this before being diagnosed so before steroids and while on them

Could not walk in a straight line

It was embarrassing as I am sure everyone thought I was inebriated as wobbled all over the pavement when out.

It has gone now/

Best Wishes

Rose

[Polylinc in reply to Rose54]

Hi Rose54

I have had this feeling too for almost 15 months and immediately following my 2014 flu and shingles vaccines but ...

Appeared again with a vengeance following 2015 flu vaccine along with (one month later) a diagnosis of PMR !

So I cannot attribute my feelings of unbalance when walking to either steroids or PMR but I absolutely feel that the vaccines were instrumental in my unbalanced feelings.

I wonder does anyone else have similar symptoms following vaccines ?

[Lottieonline in reply to Rose54]

I use a electric scooter, or wheelchair if someone to push me

[PenelopeVita-Finzi]

Yes! I am still very weak and wobbly although I am now down to 6 mg for GCA. I walk with a stick as the last thing one needs is to break a limb or hip. I have kept walking, doing Pilates and physio excercises as I felt it was important to try to maintain some muscle tone. I have found that swimming makes me more flexible and, if I did it regularly, might help with the muscles. But I am finding it very frustrating to continue to be so weak. Until this started 20 months ago, I was a serious walker and hiker.

Good luck!

[Cemmein]

Yes definitely, I have become very wobbly since going on steroids many years ago and feel as though my feet don't know where to put themselves when I walk. I tried physiotherapy but this made no difference so always use a stick now in case I trip and case a hip fracture.

I seem unable to pick my feet up high enough without thought if I meet a small obstacle like a stone or raised slab on the path in front of me. My GP had no answer as neuro tests at hospital were normal.

I am back up to 17. 5 mg due to a flare up but the unsteadiness remained even at the lowere doses. It is very embarrassing!

[Sheribrim in reply to Cemmein]

Thank you for replying.it is comforting to know that I am not alone with this but I just hope it will improve when I eventually reduce steroids. I really don't want to use a stick but as you say all your efforts go into remembering to lift your feet.

[Cemmein in reply to Sheribrim]

Good luck!

[maria40 in reply to Cemmein]

I described the sensation of not being able to lift my feet to adjust to different pavement levels to my daughter who said 'it sounds as though your suspension has gone'! which just about describes it. I've tried different shoes etc. but noticed no difference. I'm currently on 11.5 reducing but have been on steroids for 16 years altogether but have only noticed this sensation in the last two years or so. Very puzzling.

[Hidden]

Hi Sheribrim , sorry to hear your pmr has returned.....must be devastating for you. I too have problems with walking, especially with gradients..stairs....high kerbs etc . Before I was diagnosed (2 years ago) I would have walked 3 miles every day with my dog, now at 7 mg pred and doing 1 mile is a good day! So wish to get back to normal......as we all do!

[Celtic PMRGCAuk volunteer]

Sheribrim, what rotten luck to succumb to a second bout! There are a couple of people on another PMR forum who experienced PMR for the second time and I hope it gives you a bit of a boost to hear that they have both also recovered for the second time and have been PMR-free again for several years now.

As for balance problems, yes I did experience this both during my undiagnosed, therefore untreated, days, and for most of the years on steroids. I didn't actually fall down at any time, apart from when the slightest trip would find me on the floor due to non-responsive legs, but I often found that doors attacked me because the opening didn't turn out to be as wide as I thought! Plus the door handles would end up in my pockets and pull me back! So not just a balance problem but a space awareness problem for me too. Once on the lower doses, I seemed to get my senses back but definitely put this down to both a period of Nordic walking on a course arranged through Age UK, and joining a Tai Chi class - the first obviously helping due to the walking with poles, and the latter just to good relaxing, stretching and balance techniques.

I do hope that at least the steroids are working well for you the second time around - out of interest, how long did your first bout of PMR last, and how long were you in remission?

[Sheribrim in reply to Celtic]

Thank you for this. First bout took just over avyear to get to zero steroids then a bout of flu at Christmas triggered it off again.simple thing but it just reduced my immune system and off i went again. I learned to just increase steroids til I zapped pain but I never experienced balance problems first time around.!

[Celtic PMRGCAuk volunteer in reply to Sheribrim]

Ah yes Sheribrim, a dose of flu would be quite enough to stir things up again, especially if occurring within a period of up to a year after coming off steroids the first time. Our bodies need a year or so to completely return to normal after PMR/GCA/Pred - there are so many hormones that have to get themselves sorted out again after the onslaught of steroids.

You were very lucky to get over your first PMR bout in just over a year - unfortunately, we do seem to hear of more relapses in those who have such a fast 'journey' to remission. However long this bout takes, hopefully there will be no flu germs around to upset the applecart this time around! Good luck!

[PMRpro Ambassador in reply to Sheribrim]

As Celtic says - the evidence is that people who get off pred in under a year are more likely to relapses at some point.

I think it is because the activity of the underlying autoimmune part of PMR cycles - fading for a while and then reactivating and that this can go on for several years. During a quiet phase you can reduce - but then it may get stirred up for some reason and wallop - another dose. If you were still on enough pred at the time you don't notice, if you have been able to reduce below the required amount you get a flare. I think for at least 75% of patients they do get off pred eventually but it takes from a couple of years up to maybe 5 or 6 years and a lot has to do with how you are reducing your pred.

Something a few people have found helps is walking poles, as used by hikers. They help the balance better than a single walking stick - and over here in mainland Europe you see many elderly (and not so elderly) people using them even in town. So you feel less that it is a sign of advancing age...

[Hidden]

With very many thanks to health unblocked.com, I am now taking prednisolone at night, which helps considerably with the wobbly walk! I was diagnosed with p olmyalia approximately six years ago.Starter dose of prednisolone was40 mg , I am now at 10 and seem to be unable to reduce further. This seems to be the sticking for many of us. All the best. Wendy

[Sheribrim]

Thank you I will certainly try this as I'm taking at 8am now but I will gradually get up to 8pm not sure how but worth it as I don't like the balance problem.

[PMRpro Ambassador in reply to Sheribrim]

You could try just taking half your usual dose at night and the rest in the morning the first couple of times - the little bit extra on that first day won't matter, you may have one better day I wouldn't leave a morning dose out - but that tiddly bit extra won't hurt at all.

[rodenski]

Re-assuring to hearing I'm not alone: unsteadiness, difficulty walking in a straight line without concentrating, a curious lightheadedness. The symptoms are sporadic, so some days I'm pretty well OK. The symptoms are accompanied by a swollen feeling around the eyes and all too often a really strong wish to go to sleep, even after just getting up after a good night's sleep. All the symptoms since November 2014, when I started out on 20, then 15mg steroids. Now down to 7mg and heading for 6mg (using the super-slow taper - this after having a relapse when I stepped down without phasing the change). Over the last month, the symptoms have begun to ease noticeably, so am crossing fingers that will continue with the 6mg.

My other intrusive symptoms have been aching muscles round my middle. Towards evening these can get so bad I have to lie down. The moment I do that, the ache stops (so no trouble getting sleep).

The rheumis have only been able to express puzzlement and sent me off to urologists, X-rays, etc. My PMR started out with doctors and specialists all saying the PMR pains only occur in the neck and shoulders and are always bi-lateral (mine were uni). As the months go by and by comparing notes with other PMRers, it has become clear that this is a pretty narrow interpretation of PMR. There seems to be a wild array of different symptoms in all kinds of places. Why the hell don't they acknowledge this and we could then all of us stop worrying and get on with defeating the thing?

May I suggest everybody who contributes to this site tells us their age. There could be some interesting correlations with symptoms. Meanwhile, I hope the specialists visit this site and start learning about the real world. Good luck everybody!

[manjan in reply to rodenski]

'wild array of symptoms' is just about right! I have all the pain in my legs, especially the tops of thighs and knees. I too have had lots of problems with steadiness which lead my rheumy to suspect other causes, but since going to a wonderful physio who gave me loads of gentle exercises I have greatly improved. I had problems both before and after pred.

[Rose54 in reply to rodenski]

Hi

I get tenderness down both sides of torso also in breast .I have been twice for breast screening and a ultra sound and nothing sinister shows up;

Strange old illness I am sure GPs despairs when I go asking for a explanation for all my symptoms.

Ranging from top to toe

Rose

[Ida-June128]

My spatial awareness has gone to pot.....keep chipping cups and glasses when taking in and out of the dishwasher and my toes catch on the slightest raised surface. Brain and hand don't seem to co-ordinate any more. Comforting to know I am not alone but my sympathy is with everyone else.

[PMRpro Ambassador]

I broke so many glasses in the 5 years of PMR pre-pred I thought i had turned into my aunt who also had a penchant for breaking anything she laid hands on! And I tripped over anything, catching my toes on things especially.

Yes - there does seem to be a common thread of difficulty with spatial awareness and being able to lift feet! I remember hating driving on the rather narrow Brenner motorway here when there was a stream of heavy lorries in the inside lane going at 60km/hour or even less - I always felt claustrophobic but that has improved dramatically now. So I blame the PMR.

[Nap1]

Yes all that and then some. Keep moving muscles will come back and so will balance.

[judam9]

i had a cat scan about a month and a half ago. and they used dye injected into my blood .the next day and days after it was like my legs were running off of two different brains. and neither one knew what the hell the other one was doing. and i was moving to fast for me to get them into control. if i had my uggs on i would have bl;amed them, but i still had my "combat boots" on and they were all over the place. it lasted close to a month but not as severe. and slowly went away. but now my sciatic nerve in the left leg goes all the way to my foot. instead of just to my knee, . and i do lose my balance here and there. don't know if that would be from the dye or just Parkinson's moving ahead.

anyone else.

[HeronNS]

The comment about using walking poles (Nordic walking) is a good suggestion. Recently I met a woman using them and she did not look as silly as most Nordic walkers (to my eye) look, because she was just sauntering along, not forging ahead as though trying to escape the end of the world. I stopped and chatted with her for a few minutes, as I am thinking of taking up this sport, and she told me she wasn't using them for exercise, but because she has balance issues.

[michelle3]

I too have had serious balance problems since taking prednisone for GCA. I have been off it for a few years, but my balance issues continue, although I don't have the severe dizziness I used to get. I am 75 and get around with a shopping cart.

My doctor says the prednisone has nothing to do with the balance issue--it's just anxiety!

[PMRpixie in reply to michelle3]

I disagree. I feel it's definitely the prednisone. I am not anxious but have awful balance issues. Never had before !!

[BonnyQuine in reply to michelle3]

Speaking personally, is definitely not anxiety. Think mine is a combination of GCA + Prednisolone. But now I wonder.

How are you now?

[Nannie-C]

I'm so glad I am not alone in having balance/ leg lifting issues. Suffer too from mid back aching if standing/ walking too long but don't know if connected to PMR, steroids or arthritis. If I'm on my own I take a stick, with my husband it's his arm and in any shop, no matter how few things I'm buying, it's a trolley. I too am so worried about falls, used to only worry in the ice and snow but now it's anywhere. have always taken my prednisolone in the morning but think I will give it a try taking it at night, can't make me feel any worse!

This site is so good, much more info that GP ever gives! and in answer to rodenski I'm 68

[PMRpixie in reply to Nannie-C]

I've tried taking it at night several times. Unfortunately when I take it at night I can't sleep. Always go back to mornings