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My friend has extreme pain from post-polio syndrome! Is it common for this condition? Few days ago he suddenly got first symptoms of this illness. His doctor says that he has a good treatment and that he will be fine. Still I’m worried. Anybody who knows something more about post-polio syndrome?

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Post-polio syndrome often causes significant levels of pain, sometimes in specific muscles or joints, and sometimes body-wide. Usually it’s muscle and joint pain. I know that because my cousin had post-polio syndrome and I remember that he was complain about strong pain all the time. He was taking certain medications to relief the pain.
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i HAVE POST PIOLIO SYNDROME.
THERE ARE SEVERAL SITES FOR INFORMATION ON THIS, ONE IS LINCONSHIRE iN ENGLAND
ANOTHER IS HARVEST CENTER.
aNOTHER IS AT SCALLY.NET

I HAVE HAD INCREASING LEVELS OF WEAKNESS & PAIN FOR THE LAST 8 YEAR. A GOOD POST POLIO DOCTOR CAN HELP,OFTEN "POST POLIO' STREATCHING HELPS SIGNIFICENTLY.
DO NOT GET REGULAR DOCTOR STREATCHING EXCERCISES,THY GIVE PAIN, NOT RELIEVE IT.

MOST POST POLIOS, SAY 70%, HAVE SOME FORM OF SLEEP APNIA.
mOST POST POLIOS, SAY 50 %, HAVE RESTLESS LEG, i HAVE A FORM OF THIS CALLED PERIODIC LIMB MOVEMNET.i KICK ABOUT 30 TO 60 TIMES AN HOUR WHILE i SLEEP.

REQUIP/ GABBAPENTINE/ ZANAFLEX/ & OLTHER MEDICATIONS CAN HELP.


GO TO THE ST LOUIS (POST POLIO.ORG?) WEB SITE TO FIND A POLIO DOCTOR IN MOST COUNTRIES & STATES

dANIEL hAAS
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I have terrible pain and i've tried everything I can find to relieve it with no success. PLEASE, can you recommend something I can relay to my doctor that may be of help? I can't go on like this, I just don't know what I;m going to do.

Thank You

Ronald Carriere
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What kind of 'good treatment' did your friend's doctor prescribe?
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What 'certain medications' did your friend take to relieve pain?
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contact dr. richard l. Bruno at th polio institute on internet. He himself has had polio and is suffering from Post Polio syndrome. All you have to do is put his name in the search line of your search engine and his organization will come up. He answers all his email quite fast and his frineds who have PPS call him penis. I have PPS and have a lot of pain and cramps but through his advice over the last few years he has lessened it for me. Many meds cause the muscles to atrophy and along with it comes joint pain. your frined must list the meds he/she is on and what treatment they are receiving as well. I have battled the disease for 12 years since the results of what poilio did to me as a child and Dr. Bruno (penis) has helped me thru them..........

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PAIN RELIEF:  APO ankle brace and Ultram (Tramadol-generic)

After developing sever pain from post polio syndrome, I went to the post polio clinic at Ranch Los Amigos Hospital, Downey, CA... and was advised to go into a wheel chair.  I declined.  I was fitted for a APO ankle brace which gave me greater support and lessened stress in my back (I believe that had I worn this brace earlier in my life, I would not have developed any significant back pain symptoms). The brace was helpful, yet, my activities continued to be significantly restricted and I continued to experience debilitating pain.  Then, 15 months later, I went to a GP for a routine annual physical.  I had not seen him before; he asked about medication; I was not taking any... none was ever offered or even discussed during my year long visits to the clinic.  The GP prescribed Ultram (I now take the generic Tramadol)... it was a god-send.   It's a mild pain med that, for me, has absolutely no side effects.  That was 10 years ago.  I now exercise regularly and play golf several times a week (I'm 68), without any significant level of pain.  I take one 50mg tab daily and usually that is sufficient.  I am, however, careful to stretch and warm up before engaging in stressful physical activity.  I was told that pain from post polio syndrom is a bio mechanical problem.  In my case, the pain was muscular in my low back, right side secondary to walking with an altered gate for my entire life and carrying, for 20 yrs, a heavy briefcase in my right hand.  I hope this is helpful suffering pain.

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Ultram (Tramadol-generic)... see my post below.
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After developing sever pain from post polio syndrome, I went to the post polio clinic at Ranch Los Amigos Hospital, Downey, CA... and was advised to go into a wheel chair. I declined. I was fitted for a APO ankle brace which gave me greater support and lessened stress in my back (I believe that had I worn this brace earlier in my life, I would not have developed any significant back pain symptoms). The brace was helpful, yet, my activities continued to be significantly restricted and I continued to experience debilitating pain. Then, 15 months later, I went to a GP for a routine annual physical. I had not seen him before; he asked about medication; I was not taking any... none was ever offered or even discussed during my year long visits to the clinic. The GP prescribed Ultram (I now take the generic Tramadol)... it was a god-send. It's a mild pain med that, for me, has absolutely no side effects. That was 10 years ago. I now exercise regularly and play golf several times a week (I'm 68), without any significant level of pain. I take one 50mg tab daily and usually that is sufficient. I am, however, careful to stretch and warm up before engaging in stressful physical activity. I was told that pain from post polio syndrom is a bio mechanical problem. In my case, the pain was muscular in my low back, right side secondary to walking with an altered gate for my entire life and carrying, for 20 yrs, a heavy briefcase in my right hand. I hope this is helpful suffering pain.
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Have a look at "Living with Post Polio Painlessly" by Agata Pascoe. It has helped me to get rid of post polio-related pain!.
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I got dengue fever and polio on a trip to Mexico in late 1960's,  came home a week later and went into a 3 day coma, my girlfriend and a volunteer doctor put hot towels all over my body, day and night, and finally I came out of it and was temp paralized in rt lower leg..after 3 years of exercising, I led a somewhat normal life, but now 45 years later I have full effects of post polio syndrome, both legs from knee down are now 80% numb, including my ankles and feet, except for skin touch, circulation is good especially when I sleep, however, I am gradually losing any real foot control or balance in both legs.  I am fighting to stay out of a wheelchair or braces too, but braces may be inevitable. I use a walking stick for balance now, but cannot walk past 600 feet without taking a rest.  Forget mall walking. I have always been very active athletically, surfing, snow skiing, fishing in rivers, prospecting, all taken away by this insideous disease.. I was given the polio shot in early 1950's, and the sugarcube  polio treatment in late 1950's, yet I still came down with enough disease to temp paralize me. I am staying away from doctors as all I have gotten from them is big bills and no solutions to helping me in any way shape or form.  Yet I have been told that a doctor must prescribe a visit to the people who actually measure and fit braces.  I am now 72, and the future is not too bright for my walking ability.  I am now occassionally experiencing Dysphagia, which is a swallowing disorder where you regurgitate your food, with the possibility of inhaling these food and liquid particles.  It can cause pneumonia as the lungs can fill up with thos foods.

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I have PPS and have been suffering extreme pain in my muscles and joints for a few years. I live on a coctail of pain relieving medication; paracetamol, anti-inflamatories (ibuprofen) and, most effectively, Gabapentin. I was also prescribed anti-depressants as a form of muscle relaxant, but I don't take them because of the side-effects. Pacing yourself, where you do a little, rest and do a little more, will help regulate the pain and the exhaustion.Do go on to the Lincolnshire Post Polio (UK) site. It's amazing and has every piece of research available on it's database. I know it's hard. Try to get as much help around the house as you can and don't feel guilty. Good luck. Fiona

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I also suffered from persistent, chronic pain due to Post Polio Syndrome and resisted having to take painkillers on regular basis. The methods described in Agata Pascoe's "Living with Post Polio Painlessly" have removed the pain completely. 

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If you have mostly back pain and leg pain as I did, you might consider an implanted intrathecal morphine pain pump from Medtonics. It literally saved my life!
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