@johnbishop
I am seeing a rheumatologist for my GCA/PMR.
Currently on Actemra injrction.
The most frustrating is the loss of balance. The fear of falling can be overwhelming.
@johnbishop
I am seeing a rheumatologist for my GCA/PMR.
Currently on Actemra injrction.
The most frustrating is the loss of balance. The fear of falling can be overwhelming.
@nor5501 Do you also have neuropathy in your feet or any other symptom? This may not be related to your PMR/GCA at all. Normally problems like this are due to nerve problems and/or muscle problems. What does your PCP say about this symptom?
I have PMR and Large Vessel Vasculitis plus neuropathy in both feet. Yes, my neuropathy is assumed to be caused by the PMR/vasculitis since it is bilateral and came on suddenly. So far I have not had Foot Drop. It is possible that the foot drop is not related to the PMR issues at all. I go to PT for balance training about 6-8 times each year and this helps keep me safe, possibly you can do this once they understand what is causing your problem.
Are you using a mobility assistance device like a walker or a cane? Possibly you should do this until then find and "fix" your foot drop. Falling is a big risk not worth taking as far as I am concerned. Personally, I use a cane.
I have years of training in balance. Training is what works. Balance is many things, one of them being a learned skill. Eye movement, timing, and focus are central. An expert needs to teach you.
Unless you have a medical problem that a med can solve, it’s hard to imagine any med that helps. You can’t take a drug to learn to shoot a bow and arrow well. Nor can most of us acquire the skills needed for balance by taking a pill. That is my opinion anyway.
As someone who has autonomic nervous problems (balance) I can certainly attest to the need for attention and focus. The autonomic nervous system exits the spinal cord at the lumbar region. And is subject to what is happening there. There are things that can interrupt the feedback loop that the brain has to have with the feet and the legs. No pill can help.
I used to joke about falling down all the time. I’d say “It’s just what I do!” I’ve broken both legs, twice broken ribs, and had two concussions. I wore bruises like badges that I would laugh off. My family threatened to wrap me in bubble wrap. None of it was funny, but because doctors told me it was my “age” (I was in my mid 50’s) and sent me to PT (years of it), it was apparent they weren’t looking for why I was falling down.
Once (self) diagnosed with PMR last year and put on 20 mg prednisone, I stopped falling down. It took bad reactions to prednisone before Rheumatology would even see me. Just a week ago my diagnosis was “upgraded” from PMR to Seronegative RA. And I’m back to 5 mg prednisone. My balance is MUCH better when I’m on pred, and I haven’t broken any bones in over a year! Big victory! For now…
Being a “fall risk” is frightening, and so dangerous as we age. PT was helpful, but overall ineffective to keep me upright. Maybe it was caused by inflammation in my body and my inability to catch myself due to muscle and joint pain?
Please be careful, use a cane if necessary so you don’t break anything. My thoughts are with you.
Terri
I’m 76 and feel for you regarding the balance I’ve had a balance problem for over two years. Many many sessions of therapy. I was on prednisone for quite a while and did not feel as though it helped my balance.
I was diagnosed with PMR/GCA May 1 of this year. Turned my life around.
I went from Predisone to Actemra. On Christmas. We’ll see 🤔
@johnbishop
I am seeing a rheumatologist for my GCA/PMR.
Currently on Actemra injrction.
The most frustrating is the loss of balance. The fear of falling can be overwhelming.
I used to joke about falling down all the time. I’d say “It’s just what I do!” I’ve broken both legs, twice broken ribs, and had two concussions. I wore bruises like badges that I would laugh off. My family threatened to wrap me in bubble wrap. None of it was funny, but because doctors told me it was my “age” (I was in my mid 50’s) and sent me to PT (years of it), it was apparent they weren’t looking for why I was falling down.
Once (self) diagnosed with PMR last year and put on 20 mg prednisone, I stopped falling down. It took bad reactions to prednisone before Rheumatology would even see me. Just a week ago my diagnosis was “upgraded” from PMR to Seronegative RA. And I’m back to 5 mg prednisone. My balance is MUCH better when I’m on pred, and I haven’t broken any bones in over a year! Big victory! For now…
Being a “fall risk” is frightening, and so dangerous as we age. PT was helpful, but overall ineffective to keep me upright. Maybe it was caused by inflammation in my body and my inability to catch myself due to muscle and joint pain?
Please be careful, use a cane if necessary so you don’t break anything. My thoughts are with you.
Terri
@rocksology Sorry you have this problem. I have had a milder version. My physical therapy has been life saving. I hope you have tried several therapists and methods. The work on balance takes years and is totally worth the effort, but therapists are very different in their approach. Osteopathic manipulation seems helpful and some ideas about eye movement are very good.
Vasculitis can affect the peripheral nerves. Make sure your rheumatologist is aware of the of the
problem. You may need an EMG to
find the cause. Are you also on prednisone?
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Hello @nor5501, Welcome to Connect. Sorry to hear you are having loss of balance problems. I'm sure the exercise is helpful to keep your leg and ankle strength up. Depending on the cause of your balance problems there may be a medication that helps. Mayo Clinic has some information on diagnosis and treatment here - https://www.mayoclinic.org/diseases-conditions/balance-problems/diagnosis-treatment/drc-20350477.
Have you seen a doctor about the problem you are having with your balance and foot drop?
@johnbishop
I am seeing a rheumatologist for my GCA/PMR.
Currently on Actemra injrction.
The most frustrating is the loss of balance. The fear of falling can be overwhelming.
-
Like -
Helpful -
Hug
1 Reaction@nor5501 Do you also have neuropathy in your feet or any other symptom? This may not be related to your PMR/GCA at all. Normally problems like this are due to nerve problems and/or muscle problems. What does your PCP say about this symptom?
I have PMR and Large Vessel Vasculitis plus neuropathy in both feet. Yes, my neuropathy is assumed to be caused by the PMR/vasculitis since it is bilateral and came on suddenly. So far I have not had Foot Drop. It is possible that the foot drop is not related to the PMR issues at all. I go to PT for balance training about 6-8 times each year and this helps keep me safe, possibly you can do this once they understand what is causing your problem.
Are you using a mobility assistance device like a walker or a cane? Possibly you should do this until then find and "fix" your foot drop. Falling is a big risk not worth taking as far as I am concerned. Personally, I use a cane.
-
Like -
Helpful -
Hug
3 ReactionsI have years of training in balance. Training is what works. Balance is many things, one of them being a learned skill. Eye movement, timing, and focus are central. An expert needs to teach you.
Unless you have a medical problem that a med can solve, it’s hard to imagine any med that helps. You can’t take a drug to learn to shoot a bow and arrow well. Nor can most of us acquire the skills needed for balance by taking a pill. That is my opinion anyway.
As someone who has autonomic nervous problems (balance) I can certainly attest to the need for attention and focus. The autonomic nervous system exits the spinal cord at the lumbar region. And is subject to what is happening there. There are things that can interrupt the feedback loop that the brain has to have with the feet and the legs. No pill can help.
I used to joke about falling down all the time. I’d say “It’s just what I do!” I’ve broken both legs, twice broken ribs, and had two concussions. I wore bruises like badges that I would laugh off. My family threatened to wrap me in bubble wrap. None of it was funny, but because doctors told me it was my “age” (I was in my mid 50’s) and sent me to PT (years of it), it was apparent they weren’t looking for why I was falling down.
Once (self) diagnosed with PMR last year and put on 20 mg prednisone, I stopped falling down. It took bad reactions to prednisone before Rheumatology would even see me. Just a week ago my diagnosis was “upgraded” from PMR to Seronegative RA. And I’m back to 5 mg prednisone. My balance is MUCH better when I’m on pred, and I haven’t broken any bones in over a year! Big victory! For now…
Being a “fall risk” is frightening, and so dangerous as we age. PT was helpful, but overall ineffective to keep me upright. Maybe it was caused by inflammation in my body and my inability to catch myself due to muscle and joint pain?
Please be careful, use a cane if necessary so you don’t break anything. My thoughts are with you.
Terri
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2 ReactionsI’m 76 and feel for you regarding the balance I’ve had a balance problem for over two years. Many many sessions of therapy. I was on prednisone for quite a while and did not feel as though it helped my balance.
I was diagnosed with PMR/GCA May 1 of this year. Turned my life around.
I went from Predisone to Actemra. On Christmas. We’ll see 🤔
@nor5501
I have the exact same problem. I do a lot of exercises for ankle strengthening and sit to stand.
I get around but VERY SLOW.
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1 Reaction@rocksology Sorry you have this problem. I have had a milder version. My physical therapy has been life saving. I hope you have tried several therapists and methods. The work on balance takes years and is totally worth the effort, but therapists are very different in their approach. Osteopathic manipulation seems helpful and some ideas about eye movement are very good.
-
Like -
Helpful -
Hug
1 ReactionVasculitis can affect the peripheral nerves. Make sure your rheumatologist is aware of the of the
problem. You may need an EMG to
find the cause. Are you also on prednisone?
-
Like -
Helpful -
Hug
1 Reaction