Increased left leg weakness and foot pain - I wonder if post-polio - please, help!

Yes, I got polio when 1 year old in 1953 and had many surgerys on both legs and feet one of the surgerys was to fuse both ankles. I started falling in the early 80's. Up to that point I drove big trucks and rode motorcycles all around the country.when my leg gives out, I go straight down onto my feet which is insanely painful. I have been on pain meds since 1993 and had to retire. I take 60mg of morphine three times a day and 10 mg of hydrocodone three to four times a day for break through pain. I've been in pain for as long as I can remember but never took even an aspirin nor went to a Dr. But it did get worse and I have learned bfrom talking to other people like you that it doesn't get any better. I've been to a few specialists with all saying same thing that I've had all the surgerys and there isn't much left to do. My foot is swollen right now from another fall two days ago . So I am thinking seriously about not walking anymore . I have appt today at pain management and last month when I went my foot was swollen and bright purple. This time I still can't walk but swelling is substantial. Not a happy camper . So good luck with your issues. I just saw a device called upwalker which I think would help me tremendously but I can't afford it and it's not covered by Medicare. I'm thinking of starting a go fund me page. I don't know how you feel about marijuana, but I use it to help with the pain and it works. I think it kind of distracts my brain from the pain. So I grow my own for personal use which I have grow and use permit. Well, take it slow my friend. I hope it doesn't get too much worse for you. Jack

Your situation seems very much like mine.  I get about the house but now use a wheelchair outdoors.  I hate it but have no choice.  I’d love to be pain free, but I can’t seem to achieve it unless I zonk myself out on meds, which isn’t much good.  I have never heard of an upwalker but will look it up.  Thanks for the info.  As for cannabis, I’ve never even smoked a cigarette, never mind that.  I don’t think the permit that you mentioned is available in the U.K., anyway.   Are youin USA ? I’ve recently read about the medicinal oil ... Cbd I think?? There are also pills available.  I might try them.  If they work, I’ll post on here.  Like you, ive had lots of surgical and procedures, over 30, in fact.  Other than ‘repair jobs’ there’s little else than can be done to help me either.  Most of the time, I’m quite happy, as like you, I guess I’m used to my predicament, but it can be very frustrating.

i miss my independence and my biggest fear is that when I’m older, I’ll end up in a care home.  I’m now 63.  I really don’t want to have to leave my home in order to manage.  

Good luck to you, Jack.  Take care of yourself.  I hope that we speak again.  It’s lovely to have someone who truly understands. 

Hello Marion,

I saw your comment to jwolf and agree with you. I was born in 1952 and just as I began to walk I got polio and after several surgery's, ankle fusions I was taught how to walk again. I don't remember not having pain from the time I had my first surgery to present but never went to Dr for pain, I just adapted using hot baths,foot and leg massage and other methods to ease pain. I drove tractor trailers for a living learning how to shift gears without using clutch and rode motorcycles unless it was raining or snowing. Then in 1984 I started falling but not very often but as time went by, it became more frequent and I also noticed my legs were getting weaker so I had to retire. I rode my motorcycles across the entire USA twice but even riding got harder to keep feet up so I sold my collection of Harley's and stayed home raising my children. I was put on pain meds in 1993 to present time and at this moment I fell for second time this month so am on the couch foot too swollen to stand or walk. I don't know if you have noticed but many doctors nowadays don't have much knowledge about polio much less PPS. And also Dr's are starting to get nervous prescribing narcotic pain medicine. I go to pain management so they understand chronic pain thank God. That being said, I have had to tell Dr's a few times that what they prescribed was too strong until they finally found what worked without knocking me loopy. I hate to say but PPS doesn't get better, it gets worse as time goes by. In the beginning there was long periods of time between falls but I am 66 next month and it is worse than before. I hope like myself you have gotten use to adapting when possible so life is as good as possible. Peace....Jack

Hello young man!!  What an interesting message, and what an interesting life you have led.  I have never had any operations for my polio, I was offered one on my good leg to stop it growing when I was around 13, but I remember saying - I have one bad leg, don't want two!

I took strong painkillers for years, then last year was put on pregablin, and the difference it has made is just wonderful.  I have very little pain now - just hope it lasts.  I started it last September and it is still working, fingers crossed.  I am nearly 74, and was not bothered about my polio until I was 50, when I had to retire.  I played tennis when young and went up and down stairs with no problem, but not any more.  Walking is really difficult, but I am so very lucky not to have that awful pain, which completely wipes one out.  Thank goodness this PPS did not affect us when we were really young, although you have been through much worse than I have.

So sorry about your falls, I do a lot of that too and it really shocks you.  Please take great care Jack.

Go well,  Marion x

 

Hi Richard,

I have medical records going back to 1953, which is when I turned 1 year old and contracted polio. I was treated by one of the top surgeons of the time in children's hospital in San Diego, Calif. I was wondering if you also had polio or special knowledge of it. Walker's would not keep me from falling because when my legs buckle,i go straight down on top of my feet. Braces are being considered but I recently saw a type of Walker I think I could use called UpWalker. All I need to do is save the $600 to cover cost.

Hi Richard,

Thanks a lot for your comment. I am starting to use an AFO in my left foot which helps a lot. I am planning to meet with my primary physician and see what he suggest and next tests. 

Yes, Jack. I also had polio in 1953. I was in an iron lung for about six months. I had a good recovery, but remained visibly disabled. In 1984 my "30 year warranty" ran out. I now use an electric wheelchair and have a tracheostomy. I am President of the Polio Survivors Association: www.polioassociation,org

Can you please tell me what an AFO is?  I’m interested in trying anything that will help me keep my independence. 

I have looked up AFO and it isn’t suitable for someone like Jack and I who’ve had athrodesis. 

Interestingly, JACK, I also looked up the UPWALKER. You mentioned $600 . In the UK it is only £59.99. (about $60) The company selling it claimed to be the leading supplier.  It might be worth investigating for you.  Good luck. 

Wow,

$60 US is really a huge price drop and I will certainly get online and locate a website for that company. Thank you.

I am trying to find a link for that UK company selling the upwalker but having no luck. Is there a chance you could send a link to me? It would be greatly appreciated.

it's a cheap one from ebay as temporal (I just starting using it):

I am planning to have one fitted through a Dr prescription for the future.  I hope that helps. 

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The link I found is: The price seems a little steep.

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