Good morning lovely people!
Does anyone else have balance issues? I'm currently on 13mg pred, and find my balance is all over the place. Probably due to muscle weakness, but have plenty of strength in them in other situations. Stepping over things, getting up from kneeling, I sometimes only just avoid falling. Any advice welcome.
Hello there. The muscles that really destabilised me were the small auxiliary muscles usually to the sides of joints that are the first to go floppy when mobility is restricted. These are the ones essential to balance. The larger muscles by necessity still get some use but the little ones don’t necessarily. It’s like when people sprain and ankle. They do the exercises in a straight line but as soon as they walk on uneven ground they find they are not as strong as they thought because they rehabed on the flat. However, are you sure there is no balance problem in the head; is it totally body based?
I did suspect my ears at first, but no. Not in the head!
It does feel different when it’s head. I was really fit and strong before all this and I was dismayed at how much strength I lost and worse, my brain was forgetting how to move skilfully. I’m having to relearn that competence.
I think the muscle thing may be that the balance you have achieved over your life is slightly upset by the PMR effect on muscles - you know, like the judgement thing with dropping stuff/knocking things over that so many complain about? I dropped so much and broke glasses I'd had for years and could fall over nothing. That doesn't necessarily improve on pred. And of course, once you learn to walk/move "wrong", you have to relearn it, I think we need physio to do that ...
I frequently have a case of butter-fingers, but my hands are shaking terribly. Having given up caffeinated drinks many, many years ago, I'm finding this hard to deal with.
Me too, I have to put my arms behind my back and force myself to straighten up. Perhaps with me it is part of the aging process, but I don't like it.
I have found that with the muscles PMRpro. They don't respond quite as rapidly and so you stumble or fail to stop something falling. Was helping move sheep yestrday and one tried to get past. Went to run and stop it and fell over my own foot because it didn't move quickly enough.
I agree completely. I have to tell myself things like "walk straight, keep shoulders even, walk with purpose." Sometimes I think my shuffle/weak walking is becoming learned habit.
I find I often walk with a slightly bent back - which is not at all necessary. I have to remind myself "walk talk".
I make myself stride properly. Hip flexors hurt, also glutes, and hams and quads but they free up and allow. It's the muscle thing as PMRpro says. It's slow to respond and gets clogged easily but if the pred is working the lactic soon clears because the blood is getting to the muscle and the oxygen is getting to the blood and allows you to walk properly. It's an effort and sometimes "hurts" but it does get better if you keep doing it...not overdoing it. That's the balance I'm learning.
Have that too snazzyD hed thing balance. completely agree. Usually in afternoons. Not all day.
As you get more tired?
It could be. I'm still trying to separate out what I knew from what I now know . it feels like if I lean too far one way I'll tip over so nave to make sure I am upright or well anchored. Never had to think of that before.
Sounds like tiring muscles to me - your back muscles do a sterling job of keeping you upright!!!
maybe. .everything is skewed. There aren't enough words to describe what a sod this disease is. I still have to face the painful truth of what I will be able to do when I am able to reduce the dose. One day at a time. My natural instinct tells me to just push through it, my intellect tells me to be patient and work with what is the now situation. I'm literally fighting myself while my body is trying to stop/destroy itself.
I think that could be more my problem, it is quite unnerving at times.
I did also
All my life I've had to fight my corner, mostly against the odds and often without help. The one thing I could always rely on was me. Now I feel as if I have been betrayed by the one thing I thought was constant myself. I guess I just pushed my body too hard and finally it turned and bit me for not listening. Now it's taken all the projects and ideas I had and binned them and said adjust and in truth I'm angry, frustrated, impotent and it hurts. Intellectually I have understood but emotionally I am finding it unbearable.
I never thought my strong competitive runner's legs would ever let me down,, maybe other parts of my body, but never those legs
Do seek some bereavement counselling - it is something we often suggest, it isn't just you. You have been bereaved - you have lost your constant companion of lifestyle. It will almost certainly return if you are careful although it will be different - but it changes as we age anyway, this was just rather sudden.
Read Michdonn's story through his posts
healthunlocked.com/user/mic...
He was in a wheelchair for doctors appointments at Easter a few years ago - he couldn't walk to the gate and back. He started a slow increase exercise programme suggested by us and by the autumn was back skiing. He teaches small people to ski - and got an award as best instructor! I have also posted a few times about him and I'll try to find a couple of the posts if you like later but no time just now.
He got back to cycling in the New Mexico mountains around his home - and he is well over 80!
Read this and it may help to explain: 'Your Ears'.
The full report can be found be following this link rdcu.be/bOZXC
Clinical Rheumatology. Original Article:
Yet another marker my practice missed. I rapidly lost most hearing in right ear and went in. Severe tinnitus present. It has now improved but I have still lost some percentage Was referred to specialist who tested my ears and fitted me with hearing aids. Balance issues were a problem . No mention of GCA 8th nerve.
Thanks for this.
Hi
A few balance exercises from nhs site.
nhs.uk/live-well/exercise/b...
Or look on YouTube - balance for seniors….not necessarily for the age aspect, but the PMR!
I had balance problems at the start and still do occasionally wjhich is why I use a walking stick if on uneven ground or uphill!
Hi, When I first started taking pred on high dose 60mg, I too had balance problems, this went on for some time, I don’t know why this happened but it went on for a long time. Eventually when I get to a much lower dose it just stopped. Hopefully it will sort itself out. Don’t let it go on for too long, see your doc if it continues just in case it needs investing.
Take care.
I have had some balance issues - occasional falls and feeling wobbly when walking - I recently had a hearing aid fitted for one ear which seems to help - so may be have a hearing test ? - go private if you can
Yes I am on 13mgs too and I have intermittent balance issues.I saw an exercise physiologist the other day and I was really bad afterwards.Bit scary.It has settled down but I am careful.,Don't let anyone rush you.
Thanks everyone for your comments and help. Doesn't it make a difference when people know exactly what you're talking about? Very many thanks.
Yes, sure do! Balance is not good, I suffer from vertigo too. When I was on higher doses of Pred, I had real butter fingers and also quite shaky hands. That’s better now on a lower dose. I’ve started practicing standing on one leg, as suggested in Dr, Michael Molsley’s radio programme. I think it’s helping.
PMR really is the gift that keeps on giving! 🙄
It does sound like exercises would really help you. I was very 'clumsy' and a bit 'tottery' at times when I was on a higher dose but now, on 11mg, I'm improving a lot. I do balance exercises nearly every day now. Exercise is all part of our rehab. Wishing you well.
Having to rest so much has taken a huge toll on my muscle tone. Like SnazzyD said, it is the little muscles who are suffering. My overall conditioning is poor now. I can do yard work, but ask me to get down on or up off the floor and oh boy. Bending down at the knees is really tough. And every so often I find myself starting to tilt and can catch myself, but it is enough to notice that was not something that used to happen to me.Now, I do have vertigo and OA, but this is different. My docs say do yoga to strengthen. Physical therapy was just too painful so I am going to try yoga.
Wish you well!
Thanks for that.
Physical therapy with repetive exercises WILL be painful. There are ways if doing it that aren;t so painful - but you have to start with a VERY small amount and build up VERY slowly
echo PMRpro...pain comes with physical exercise when you are making the muscle work. Pain in that sense is good if you don't go too far. You can't build muscle mass without the pain and because this medication reduces mass through our lesser activity and its own active properties we need to exercise to retain as much muscle mass as possible. The aching pain could just be the lactic acid which builds in the muscle. Normally in fit healthy muscle the blood and lymph system clears this as we exercise only building to unbearable levels if you continue to push through it. Every morning after the pred has kicked in I walk the dog uphill from the farm 10% incline for 0.5km. I have to make the legs stride properly. Sometimes I can walk faster than other days, it varies. Then I rest at the gate and let the lactic clear. Then walk on another 0.5km slightly downhill. Rest briefly then return slightly uphill no rest and continue downhill to farm when the easier walking clears the lactic. That usually sets my legs up for the day and I potter through one activity after another until I have to rest and maybe have a nap in the afternoon. As a cyclist in events like time trials the object was to ride at just below the pain threshold where the pain was not debilitating. Too far into the red and it was game over the muscles just wouldn't respond and produce the power. That's extreme and what I was used to so for me the learning curve of dealing with this condition is steep. I cannot assume pain is gain. Yes to lactic acid because I can clear that if I moderate. No to pushing the threshold because that will actually set me back and will likely raise the inflammation levels if what I read here is right. I'm early days into this and learning fast.
Yes, years ago when I did Tai Chi I could balance on one leg with ease, nowadays I find that sometimes I shuffle through the house because I have the wobbly legs . I can get down to the low cupboards and the floor, but have to have something close by to help me pull myself upright and I am on 4mg. Before I was diagnosed on December, 12 , 2018, I was starting to take my daughter's arm when out crossing the street, going up and down stairs etc.
Observing comments regards PMR/autoimmune and Prednisone use, I read somewhere that Prednisone softens our ligaments. ??? Could this then be a problem when trying to improve our mobility regards rehydrating muscles/blood flow/nerve supply. I could hardly move when it was thought I had PMR. I was wobbly too in the first stages of taking Prednisone.
Recently, post Prednisone journey (2017-2019), I have discovered I had balance issues due to one leg being slightly shorter than the other. Over time my body has tried to adjust along with not being shy of being active in my life. My balance shift pulls my hips right to left.
All the clues have been developing over time. Referred nerve pain and muscle weakness have been moving around for ages in my lower body (20 years). I have had periods of improvement as I have been doing what I can throughout. Life happens along the way too ie an old neck injury. But there were some specific applications I didn't know about.
Now I am wanting to build strength on the lazy side to counter the stress to muscles on the other. Getting soothed isn't enough. Doing the exercises and stretches requires attention to the quality of movement (correct positioning) if correction is possible to alleviate pain and suffering.
Within four days my knees improved. Seems I have been putting stress on my back to pick up the slack, where glutes/quads/hamstrings need to strengthen. Also, I am working on hip flexion and rotation.
I don't know If this helps in your discussion.
I wish the best for you investigating options you might find helpful.
🌺
I too have had marked balance issues since having PMR - and have also had a marked loss of hearing. I feel my problems are in "my head" - or my ears - and I am encouraged by the suggestions here that to some extent the ability to balance needs to be relearned. I am trying to walk upright - everything falls into place and I instantly feel more in control.
You ought perhaps to mention the hearing problem to your rheumy - it is possible you have GCA or LVV that is affecting the blood flow to the ear.
healthunlocked.com/pmrgcauk....
Funny you should say that - I have literally just returned from seeing my rheumy! I mentioned the hearing loss to her, but she thought it was more likely to be anno domini ..... I have to say that I feel fairly good at the moment - my blood counts were all normal, and I am almost down to 4mg pred. I will bear in mind your article, which is very interesting - I might send it to her! Thank you.
Wonderful to have so many replies and suggestions. Really helpful. Many thanks.
Hi thereI had balance issues. Turned out to be B12 deficiency. Was diagnosed around the same time as pmr.
Yes. I have had it for several years and until your post never thought it was Pred related. I can no longer ride a bicycle, ie 2 wheels, I have to ride a tricycle, 3 wheels. I ride a recumbent tricycle which I enjoy, but they are more expensive, heaver and cannot go in some places that a bike can. I also generally use a stick to steady me for walking, or else I sometimes do a little 'dance' as I lose my balance and spin round to avoid falling. The only query in my mind is that I am now down to 2.5mg/day from 15mg/day with no change to my balance.
I was diagnosed with PMR in 2019, I am presently on 11mgs Prednisilone and I have the same problem. Not only do I lose my balance in the house but also when walking my dog, I have just lost my big lurcher and when I got a bit wobbly I used to put my hand on her back to steady myself. Anyone walking behind me would swear I was drunk in charge of my dogs. I too would like to know how long this lasts for.
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