Can muscle be rebuilt in a polio affected area/limb?

I have been seeking advice on this very matter. Like your Mother I had Polio as an infant, I am now 58.

My legs are mainly affected, one completely flacid and the other about 60% weakened.

I realised that exercise is a good idea anyway so I asked my GP for a referral to a Rehabilitation Consultant who I thought would give me specialist advice on exercise for old-polios (as we are referred to in the medical world).

I was hugely disappointed to hear that I just need to 'exercise as any older person'. I was referred on to the local Disability Service who assesed me at home and gave me a list of exercises to address my main weaknesses.

My questions to all these professionals "can a polio-affected muscle be strengthened through exercise?" was never answered. The consultant sent a letter to a university professor offering me for research but nothing has come of that.

Reading widely on the internet it seems to me our problem is the destruction of the nerve cells in the brain to muscle connection. This is the bit that needs to be repaired. After the damage is caused by the polio virus to the nerve cells if there are any alternative nerve routes then these do develop and some use of the muscle is gained. This seems to be why we can use some muscles in a very reduced capacity. However these alternative nerve routes are overworked as they were not the intended nerves for that muscle and are probebly in use for other muscles anyway. My understanding is that PPS may be partly brought on by the eventual failure of these alternative nerve routes after a lifetime of working at maximum capacity.

My own opinion is that there is no possible treatment for improvement except nerve regeneration but I have not been able to find anyone providing any hope for our sort of condition, at present.

My own treatment that I find is helpful is to get plenty of physical rest in a comfortable position, for me that is on my bed, pillows supporting my back and legs and hips, an hour at least during the day. I use a bespoke pair of crutches to take the load off my legs as much as possible and try to stay active. Above all, the myth that exercise works only if it hurts is wrong and only damages our weakened soft tissues.

We should continue to seek advice and badger our doctors for their engagement with PPS. We are reducing in numbers but for me the fight is far from over.

Try to encourage your Mother, staying on track as an old-polio is a major challenge.

Good luck.

Hi Charles n Brianboy !

can you or anyone please guide me ,my sister 29years old has same problem you both shared but she is actively handling her full home ativities but now she has started joints pain I am very upset for her. she can't walk for mile even. she uses one crutch, she was asking me to have wheelchair for her that's made me sad i want her to walk without crutch. 

Thank you.

Hi, I know this was posted over a year ago but I thought I would add some info others as myself looking and wanting to share some info if it helps anyone.

I have polio on my left leg, but I can walk with a limp bcoz my parents pushed me hard when I was yopung (I got polio when I was 2 years old) e.g. riding bikes and playing with others at a very young age. So maybe that helped me. I find excersing does help allot, but never over do it (get in to a routine). Do it less but always keep at it.. Not using weak muscles can be really bad, and will lead to more problems. I have noticed my leg gain muscle from small excersises, and I even got a machine (SlenderTone) to help my nerves/nervous system. And it does make a differance, but can take time to see results and intially its hard to recover from tiredness after having used the machine.

The simple answer to your question is NO.

I have, over the years asked the same question. Surgeons and physiotherapists have explains that poliomyelitis is degenerative. After the initial attack, there can be a period of 'good years' where a patient will be able to function relatively well, as I did, but once pps is established that is it.

My personal experience has borne this out. No amount of exercise can increase muscle tone because the pathways have been destroyed. If I do too much on one day, I suffer for it on subsequent days with exhaustion, pain and soft tissue injuries.

It would seem, Charles, that we have to accept our limitations and learn to manage them as best we can. Eg rest up before a big day so that we can enjoy it. Don't over strain yourself.

I found this to be very difficult and fought against it for a long time. I have been used to an active, busy life. Eventually my surgeon told me to stop pushing my luck. I was actually causing myself harm, having broken my leg twice, as a result of bad falls. He said the "Be kind" to myself, allowing periods of rest, being selective about what I really want to do and what I can do without. Basically, doing what is necessary and what makes me happy.

I hope that you too can find your way through this. Good luck.

Hi, charles025 - your sensible comments inspired me to join this site. I live in Portland, Oregon, USA. In 1940, polio centered in my left leg, after 3 months in a cast, I came home with a weak, withered leg and so little energy it was tiriing to just sit up. When I finally went outside, kids on my block shared roller skates and scooters, and by the end of summer, I was moving quite well. By late teens, I was dancing the nights away and thought I was fully cured. At 44 racquetball became my first and last sport, and for five wonderful years I was on top of the world, but that ended. I'm now 81, and it is useless to mention post polio syndrome to a physician or physical therapist. They often don't know what it is, as polio patients in this country are basically quite old. An orthopedist finally explained that polio damage is degenerative and not reversible, that OVERuse actually uses up remaining muscle, so moderation is key. Keep moving as much as comfortable and rest when you're tired. Naps are a must for me, sometimes two a day, but part of that is probably due to age. Your mother might want to ask her doctor for arthritis med. I've taken it for 45 years, and it helps. Massage helps a lot, professional or personal. Aspercreme rubbed into sore muscles or joints does wonders. I read comics to start the day with a smile, as attitude is important. Some things cannot be changed, like being old or invalid, but as long as you have any working parts, there are some things you can do. Don't do more than is comfortable, no matter who doesn't understand; there are more of us out there who do understand than you may think. Ask for help when you need it; give help when you can. 

I have just come out of hospital, after having a 'repair' to my foot. Whilst there I was lucky enough to see an excellent consultant pharmacist who took the time to research pps.

I got the usual advice about 'protecting the mobility that I do have' and a new set of drugs.

I have relied on Tramadol and Pregabalin for pain relief for years. The pharmacist has now put me on Butrans weekly patches and Oramorph for breakthrough pain. He said it gives me a cleaner path to the pain

So far, so good.... I have been sleeping more soundly and comfortably. I no longer feel juddery inside and at odds with myself.

Hi: I am a victem of OPV polio from when I started grade school in the 50's. My first encounter with PPS was when my knees pained all the time. My GP diagnosed it as RA and wanted to put me on medication. I refused medication and consulted with my wife, who had found relieve from joint pain by managing her diet. She placed me on a "blood type" diet. This diet was developed by a doctor believing that our body responds best to the foods that is determined by our blood type. After three months on this diet for my blood type (A) I was able to walk without pain. If I cheat on the diet, I am in sever pain again, so I avoid cheating. The diet does not stop muscle fatigue and I have to rest for 1 - 2 hours during the day. At 68 I feel I am lucky to get around with no pain, minimum limp, and only leg fatigue. I also tried to build muscle through exercize to find I needed longer day rest time with no change in my leg muscles. Without the day rest, my fatigue causes leg collapse, with me falling to the ground causing bruises and cuts. Good luck to all and be careful.

I am from Nigeria I had polio since wen I was an infant.. at about age 3. I am 30 years old now and I feel severe pains after the end of each day at work. I would like to know if anyone can suggest an exercise or a way to reduce dis pain . Thank you

I caught Polio when i was 1 while in hospital for a

small neck abscess, it went unnoticed but I always

had pain and one leg was slightly thinner,

In my thirties I found out I had old polio.

One leg was shorter than the other "left"

I had Reumatoid Arthritis and needed a hip replacement, I have been on many arthritis drugs

over the years and had many ops.

Now at the age if 63 it has returned to haunt me. it has taken over the Arthritis and is very painful,

My husband was trying to massage my leg with a

massager and it felt good at the time but brought on a lot of pain afterwards! my advice would be leave well alone as it only gets worse. I am now on pregabalin for nerve pain and oxycontin tabs and liquid form to top up I cannot walk very far, have a wheelchair and a scooter to get around. hope this helps.

Hi

I am happy to join in group discussion.

Thank you for all your posts.which are useful to all.

Hello All,

Sorry, but excercise will not help any of us.  Swimming in WARM water is pleasant.  I have many muscle pains, and the pelvis in my back is often "out" and my osteopath yanks it back....great fun!

I am about to start on morphine as I have so much pain.  I am 73, had polio at 17 months, in 1945 and my left leg is very weak, not permanently in a wheelchair yet.

Fortunately I had a marvellous GP in New Malden who recognised my PPS 23 years ago. I now live in a bungalow in Cobham, Surrey and do visit the Lane-Fox unit in St. Thomas's.  Sadly there are few Doctors who understand PPS - we are a "dying breed"

Good luck to you all, Marion x