unstable walking

[Rose8950]

Over the past three weeks I have dropped from 27,5 to 26 with only slight numbness in my arms.

Over the past few days I have tried walking around my neighborhood, My steps are painless but unsure, unbalanced, not dizzy but not my usual sure step. I get tired very fast and have to firce myself to continue walking, Inside the house I don’t notice it as much.

I spend my winters in Florida so I want to be outdoors enjoying the beautiful weather and staying active, My PMR is behaving well except for the fatigue at the end of each afternoon when I take time to nap. Is the fatigue causing this weird effect on my walking ? Hoping to get advice from other members, this as come about only since my last flare up in December.

Thank you so much !❤️🚶🏼‍♀️‍➡️

[DorsetLady PMRGCAuk volunteer]

You do seem to have had a bit of a chequered start with your PMR requiring you to go up to 27.5mg.

Dizziness can be side effects of Pred -as can weakness in legs.

How far are you trying to walk? .. and real forcing yourself to do something beyond your capabilities is not a good idea.

Many have found they really need to reevaluate what they can and cannot do.. Exercise is good, but PMR affected muscle need building up slowly.

Maybe have a look at this link -which also includes a link from the charity website on a recent pamphlet re exercise and gently build your muscles up again before you try too much of a walk outside. Maybe try Nordic poles or similar to steady yourself as well

healthunlocked.com/pmrgcauk...

[Rose8950 in reply to DorsetLady]

What I don’t understand, is prior to my flare when an attempt by GP to have me go from 20 to 15, everything was going so well. No pain, no trouble walking.

The minute I had to go up to 25 and then 27,5 extreme tiredness and labored walking. Is the culprit Prednisone .

[DorsetLady PMRGCAuk volunteer in reply to Rose8950]

Is the culprit Prednisone .

Could well be -and if it is then it should improve as you reduce. But, as very often say there’s a trade off - you need enough Pred to control your PMR -but higher doses may bring more severe side effects.

It’s early days for you, so you have to learn how your body reacts to both the disease and the meds.., and you can’t always know that until you are in the midst of it.

Message as always is - listen to your body and do what you can - it may not be perfect -but at least you are mobile and not in extreme pain.

[Rose8950 in reply to DorsetLady]

Exactly what I think ! I’ll continue reducing by .5 every two weeks and go easy on the exercise . A 15 minute walk a couple of times a day to see how it works. As you say pain is not the object here it’s the fatigue so I’ll have to deal with it with plenty of rest. Thanks for the sound advice !

[PMRpro Ambassador in reply to Rose8950]

I found I did much better if I had a target halfway-ish with a seating opportunity - a bench or a cafe. Then I could walk much further - we walked to a local restaurant, a good 3/4 hour and uphill at the end. After a 2 hour lunchbreak I was able to walk back as well. Otherwise, I'd probably not have managed an hour in total.

[PMRpro Ambassador]

It MIGHT be the pred - but you can't always blame the pred entirely. I have said before that you are at a VERY high dose for PMR pure and simple.

The question has to be whether that flare when you tried to go from 20 to 15 was really a flare due to such a big change in dose or whether the underlying cause of whatever you have was actually ramping up to a higher level of activity. That could also potentially worsen your systemic symptoms including fatigue which may be added to by the high dose of pred.

And as DL says - how far you can walk is affected a lot by the disease as well as the management with pred. And overdoing it once or twice leaves its marks for subsequent days because your muscles aren't having a chance to recover between, Rest days are as important as exercise days.

[SnazzyD]

I don’t know if it applies to you but I found about 3 months in, Pred effects really seemed to blossom. I started on 60mg for GCA not PMR. I felt weaker, wobblier and my eyes were all over the place. The effect on my focus made it such that my eyes struggled with keeping tabs on moving things which included close scenery as I walked. Walking across a wide open space was ok but as soon as I walked, say along a path through trees or a fence, I felt dizzy because of the movement past them. Mu focus couldn’t keep up and I would feel woozy and weird. At home it was ok because I didn’t move fast enough or for long enough. My muscle loss and weakness in small, stability muscles made me feel like my joints were held more by elastic bands than muscles and ligaments.

Tiredness can be from the Pred and your autoimmune condition still trotting along in the background as you are in the early months.