After a bout with mononucleosis, my husband has suffered so much pain inside his body and no one can help him. He has developed IBS, and mulitple other problems which are Post Polio Apparently related. NO one seems to be able to educate themselves so its up to the caregiver to take charge. By the time someone is a caregiver, it is almost like waiting for the Grim Reaper to visit. A day with Post Polio Syndrom is another day of Torture. There is no cure and most places I look for imput I find people mostly complain about cramping legs or swallowing difficulty. pain and more pain but no help.
I have post-polio syndrome & in a wheelchair. I was in constant pain before being diagnosed. I retired from teaching & sought out a pain spec. I was put on Elavil & had good luck for about 10 years. But I gained over 100 lbs. on this drug. Now after suffering a stroke, I have got to lose the weight. I am on Effexor now for pain.
What is IBS? I see it in several posts but I don't know what it means.
If you don't mind telling me, what are you guys using for the pain?
Regarding the pain of pps = I've found that trying not to overdue helps alot with the joint pain. I know this is difficult for most of us polio survivors who were mainly type A personalities!! Remember trying to fade back into society after the initial illness and hoping no one would think we were different? We just kept on pushing ourselvese not realizing the damage we were doing to our remaining nerves. I sorta thought going through it once was good enough, but here we go again. In a way I think I am lucky rather than some one who never had it before as I remember how to move things and adapt to the muscles I have left. Both of my arms are near useless, my left leg will support me once it's up and locked. My right leg is my pride and joy as it works well - I guard it with my life!! Balance is what is scary and I have nightmares about falling and not being able to use my arms to catch myself (which I have done many times!!) Not always too graceful! We have a hot tub which we try to get into everyday which really gives alot of relief. I, too, have tried so many pain medications and have just about decided that the medicine is worse than the pain. I am already tired alot and the pills just drag me down. People ask me how I am and I always respnnd that I am just "fine" = positive thinking seems to help also. How many people really want an honest answer when they ask you anyway?? I use a scooter outside and my barefeet in the house so I can tell what I am stepping on. I'm much more secure of my walking without shoes on. I don't know that any of this will help anyone - I really work on the attitude and try to keep a sense of humor as much as possible! But know that there is someone out here who is going through what you are and have been through. The only thing that I really have anger about is lung function. I spent 4 months in a lung in the original bout and I am now down to 27% vital capacity but so far so good!!! I guess as long as I dont do too many cartwheels a day I'll be okay!! I started out writing this to see if any of you deal with insomnia? I have an awful time with that - maybe because I don't do enough to tire my body out???? Best Wishes! LaBirdy
Dear Babes: I contracted Bulbar Polio in 1953, it was so severe I almost stopped breathing. After recovery, I had a limp r. foot, trembling r. hand, eye focus problem r. eye, swallowing problems. For 40 years I denied, or detached myself from the pain - I jogged several miles a day, until the pain finally froze my muscles. The Doctor then put me on Parkinson's medicine, Selegeline, and Levadopa, this seems to help. I have a whirlpool bath that helps with the cramps, I take vitamin b-12, calcium, E, C, fish oil, one aspirin, and 2 iboprophins a day. My Doctor makes me rest far more than I like, I have relapses where I can only lie down for a day, then I can be normal again. Hope this helps - fellow survivor Nolan
Wasn't sure which one to post to, but selected this one as the last comment seemd to have 1 or more symptoms similar to my own. I am now 57 and contracted polio when I was 13 months old. As far as I know, it only affected my right arm (the muscle you use to lift your arm above your head) and the inside calf muscles on both of my legs. My feet are a little funny looking, but if I know I'm going to be on my feet a lot or exercise, I have orthotics I place in my shoes to help distribute my weight. I have trouble sleeping, but a very small dose of a sleeping pill seems to do the trick. Have a lot of Charley Horses in my legs. For some obscure reason they are worse if I drink a glass of wine. I had a benign brain tumor removed 2 years ago (from which I have pretty much fully recovered), but have an area in my brain that atrophied - so assuming the brain is compensating in other areas. The surgery left me with palsy on my left side. The surgeon advised me to join a fitness center and the palsy is gone plus I've lost several pounds. I'm still exercising, but not sure if I should considering some of the posts I've read about maybe damaging the nerves. Also, wondered if the surgury for the brain tumor was the reason I have trouble sleeping. So like I read in another post - how do you know if your symptoms are from PPS or from something else? Does everyone that had polio come down with PPS?
I have found that COX II inhibitors help with the inflammatory pain. Also, postpolioinfo.com has great suggestions for care and emotional questions, in addition to good reading to learn more. I am early in my PPS progression, but I hope that I can hold off the advance of symptoms for awhile. I found that diet suggestions at the site have helped. Good luck!! Stay positive!