I was diagnosed in 1999 with symetrical, axonal, sensori-motor ployneuropathy. So far, the meds and suppliments I take have allowed me to live a relatively normal life. I work full time and am able to keep up with my home and family. My neurologist says my neuropathy is advanced but it does not seem as advanced as some whose stories and issues I read about here. I asked my neurologist about the motor part of my neuropathy and he said it would be gradual and I probably wouldn't notice a chance for maybe 20 years. Well is is only 8 years later and I notice my ankles are becoming stiff and my wrists do not rotate to carry like a cake in each hand and bending has been more difficult. The muscles in my calves and forarms always feel sore or bruised. They always feel better when my husband rubs them.

So, I was wondering, would physical therapy be of any benefit. I sopke to my primary care doctor and he said the best thing to do was exercise. But since I cannot feel the "burn" I overdo and them my legs hurt worse.I couldn't get him to undertand so before I pursue it further with the neurologist..is it worth it? Will the muscles benefit from PT?

Dorothy

If your insurance pays for physical therapy, why not go to the physical therapy place, explain EXACTLY what is happening when you exercise, then they can devise a therapy plan geared just FOR YOU!!!

They should be the experts, so they should have a fairly good idea how much you can do and how much you SHOULD DO!!!

Kind of like when Alan had to go to Cardiac Rehab after his stent. They knew what he was capable, and how far to push him.

This way, you talk to the therapy experts before you just go and do the machines. They'll tell you, "you should do this, it won't be taxing on your legs, etc. etc"

Wishing you luck.

Melody

I have benefited everytime I have had PT. It's painful and hard but it does keep things moving. Ask your neuro to please send you for PT to rehab a little. Maybe they can design a home exercise program to help you.

Billye

Dorothy,
I also have an idiopathic mixed sensorimotor, axonal, polyneuropathy with more small fiber character than large. By all means try PT if your insurance will pay for any portion but a note of caution - ask a lot of questions before you start - it's really important. My first encounter with PT was through the PT department at our hospital and the therapist assumed I could do more than I really was capable of - foolishly I tried harder, failed dismally, and long story short I wound up somewhat worse for wear.

I spoke to the head of the PT department, changed therapists which helped somewhat but it wasn't until I found a PT group that specifically dealt with my type of back issues that I ever made real progress - the group is independent and not associated with any particular hopsital. I've gone back to the same group at different times over the past 3-4 years for both back problems and PN and while it does hurt initially, it has helped me over time.

I'm fortunate that I've had the same therapist each time who is really skilled and both knows and understands me and my problems. She has designed several different types of home exercise regimens for me and has upgraded them if necessary. She's compassionate but not a push over so it has never been a cake-walk for me but also I've never regressed from anything or program she's suggested or implemented. She's "hands-on" and will literally walk me through anything and not just show me, until I develop the proper technique to benefit from the exercise. She is very knowledgeable about anatomy and physiology so I discuss neuro or orthopod reports with her and I've learned from her over the years.

It is well worth the investment in time and money and can pay off with both short long term benefits that you'll see in time. I hope you find a really skilled therapist to work with you and design a program specifically to address your needs and capabilities. Good luck and much success.

Alkymst

Dorothy, I am a retired physical therapist, and I thnk that a therapy referral would be of benefit for you. The pain in your muscles is probably PN pain and can't be helped (except temporarily) by PT, but the stiffness you describe could certainly be alleviated. They should also be able to make up a home exercise program for you. When a nerve to a muscle dies, no amount of PT can make the muscle work, but a PT can help you strengthen and maintain the muscles that are working. They may be able to recommend some assistive devices if needed. Definitely, yes, go.

That was a really cool little button I just presses. Thanks to all who answered but I have a question for Dakota or anyone who knows.

When I see my neuro he always makes me walk on my toes and on my heals. The toes are no problem but the heels are hard. I have a hard time lifting my toes up from the floor very far. Since my last visit about 5 months ago, I have been practicing and I seem to have gotten better. Thats why I thought PT would help. I would like to stay active and mobile for as long as possible. My PCP is not very quick with referrals and my insurance requires one. I am not sure the neuro can refer but he can reccommend in his notes to my PCP that I should have PT. What are the right words to convince him this is necessary?

Dorothy

Dorothy:

Simply say "please write me a referral to a good physical therapist who can help me be more mobile and who can ascertain my health needs".

That should do it!!!!

And if your primary care guy (or whoever needs to write the referral, refuses to do so), get yourself a new doctor.

I mean, really, you want physical therapy, you ABSOLUTELY DESERVE TO GET THE BEST PHYSICAL THERAPIST YOU CAN GET!!!!

So get crackin. You'll do just fine.

I used to go for my frozen shoulder.

Actually felt kind of good when they put the tens unit on and a hot pack, then they gave me massages.

But when they walked me over to where I had to act like a bicycle (with my hands), well, I looked perfectly ridiculous but it worked.

Then I walked over to the weights and I had to bring the weight all the way to the right and back again to a count of 10.

I really should go back.

I need to work on my shoulder again.

You take care,

Melody

My son does both PT and Massage, he doesn't live in my State but i'm
sure his would say yes. That's what he said to me,and he came down
to watch. I feel so much better,just the stretching excercises alone
are worth it.

I just think it odd about the 20 yr. thing your neuro said,i really hope for
you that's true. Go for it Let us know how your doing Sue

I went to pt once but don't sound as far a long as not really doing daily life so had a bad experience. I have heard positives though from some people. I do know they did do massage like you talk about with your husband on me but tried to find more specific areas. Have you thought about swimming? Everyone keeps talking about that I have seen. Its easy on the joints but also may help relax muscles.

Swimming would be great and I know it exercises lots of muscles. There is only one embarrassing problem...I can't swim. When I was a child, my parents thought it was important to learn to swim. I went ot swilling lessons every summer and every summer I would fail the class. I tried as my younger siblings attended and passed the class. I have to tell you that I am 53 yeas old and I stil cannot swim..not even to save myself. We had a sailbaot and would go out on the Chesapeake Bay. I Always wore my life jacket!!

I will see what my nuro says and let you know because doing exercise on my own is probably not going to happen. I hate to exercise.

Dorothy