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Old 11-24-2007, 08:15 PM   #1
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amanda1315 HB User
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I am not shore if I am doing this correctly or not this is my first time on a board. I was diagnosed with pps in november of last year. I have been looking for somewhere to go and talk. I do understand how the pps works but i don not understand what is going at certain moments. Such as when i am working i get very tired, a lot of pain, confussion, and depression (very bad lately). I have been off of work for a week now because of thanksgiving holidays and i am feeling pretty good. Is this the post polio making feel this when i am at work and feeling better when i am off because i am getting my rest.

 
Old 11-27-2007, 12:30 AM   #2
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Janet W. HB User
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Amanda, I am no doctor but I surely think your body is telling you to slow down and yes, resting as your were off is telling you also. It is so difficult and like an emotional roller coaster we are on and I can tell you from changes in me over the last few years, it can be scary. But reach out to other PPsers and clinics that do Post Polio- there is so much to learn and know- I have read 4 books and am always printing info out and have made my own PPS folder- there is also some controversery on exercising and NOT exercising- little seems fine but in a trained environement and know to stop before pain or fatigue.

Listen to your body that is the most important thing and Pace and rest.

Hugs Janet

 
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Old 11-27-2007, 09:20 PM   #3
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amanda1315 HB User
Re: new member

Thank you for replying. I am still young (46) and it is hard to stop doing what you are used to doing. I hope this board stays active because it feels good to be able to be in contact with someone going through the same thing. I do see a doctor who treats pps patients but he is about 2 - 3 hours from where I live. So to go or call every time I want to know something is difficult. I do not know how quickly the muscles deteriate but I do rest a bit when I get tired. I have to continue working to pay off a house note so hopefully muscle weakening will not happen to quickly. I was not stricken with polio as bad as other people that I am luck and am greatful for. Well that is enough about me. Again thank you for responding.

 
Old 11-29-2007, 04:14 PM   #4
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veronne HB User
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hello everyone... my name is Veronica... i am 48 years old and i am so glad my husband found this forum.... it is so nice not to feel so alone with this PPS crippling hassle....

my polio afected my right leg... as of today, i am quite frightnened because i am experiencing a new kind of pain...(been in pain forever..as you all know..)
i had minor back surgery about 4 years ago to help me with the sciatic nerve pain that was not allowing me to walk...needless to say, the pain came back with a vengeance....i have been seeing an acupuncturist now for the past 4 years, and he has given me quite a lot of relief for my general pain.....

i am still quite active, hide my pain, and pretend everything is ok in my world...(does that sound familiar???) kinda embarrassed to talk about pain that no one understands.....

lately, i have been having new pain down my good leg, and it has been affecting my knee also....kinda scary the thought that eventually i really might not be able to walk or do the things i enjoy the most.....and yes, kinda scared that i might not be able to work and i need to work for financial reasons...

it's really nice to know that there are people out there that are as frustrated as i am....

 
Old 11-29-2007, 07:02 PM   #5
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Hi to both you new members!!! You all are so young- I am 51 years old and was just dx'd with PPS earlier this year- although I sort of thought that was what was happening to me as I was researching Fibro and came across people that had Polio were now facing the after affects. I can honestly say for myself my Polio Bout was not like many of the survivors- I had a mild case at age 4 which affected my left leg. But Now with these new symptoms nothing like the Polio-

The pain is so hard to describe and try and talk to non-survivors- I know they try to understand but at times make us feel well like some of it is in our heads- I had to stop work in 2005 and now I am on SSD. I think my wake up call was last year when I tried to go back to college full time to get into a different field - I could not walk well and my concentration was shot- 1 week and I hit the wall mentally and physically. I could not handle it!!

My greetings again and yes, it is so good to be able to talk to others and there seem to be more and more of us survivors with problems as time goes on. At least we are not alone and hopefully can find ways to get pain free and be able to continue.
Hugs to all Janet

 
Old 11-29-2007, 08:38 PM   #6
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amanda1315 HB User
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I wonder how quickly problems with pps will take over. In 8 years i can retire from teaching. I hope i can last. My polio was mild also. I was not a year old yet when i got polio. Most of my problems are on my right side. I quess having a mild case did not stop me from doing a lot of things growing up. I played basketball, baseball, all kinds of running games,and a bunch of other things. I could do just about anything. I think the only thing i couldn't do was a cartwheel. Maybe that is why i am already showing symptoms of pps.

good bye hope to here from someone soon.

 
Old 12-02-2007, 06:38 PM   #7
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iammee HB User
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Hello to all: i am Bev, 57 year old female who had polio in 1952 and now am experiencing lots of the same things everyone has posted. Was feeling a little alone and isolated, but thankful a friend reccommended posting on this site.
I feel a little humbled to think I was in pain and thought no one could imagine how much it was taking away from my ownself worth and now to find many have bigger burdens to share. My left leg was mostly affected. Had surgery in 1956 and now my entire left side is weak . I am going to have aknee replacement on the right knee as it has been stressed for so long and now
needs some help. Thanks to all who share I really feel better just reading about you all. Thanks again

 
Old 12-03-2007, 04:52 PM   #8
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Janet W. HB User
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Hi to all, it is amazing how many Polio Survivors are really out there... As far as PPS and the progression- there is no way to really tell and no drug to help at this time. The best medicine is REST as much as activities and STOP before pain, fatigue and weakness begin. Try and find easier ways to do things by saving your bodies energies. I am on this journey and it can be so trying.

The greatest thing is that we are not alone.

Bless Yah Janet
PS learn as much about PPS as you can- and there will be controversy when it comes to exercise so the best advice I can say is get in touch with your own body and listen.

 
Old 12-06-2007, 10:50 AM   #9
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amanda1315 HB User
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Hi,

I hope your days are going ok. I was telling some of my go workers and family how it is nice I found this site. It makes me feel like I belong and not alone.

I have been taking an antiflammatory for a few months for arthitis pain. I hate taking medications like that for a long time so, I told my husband I was going to stop taking it for awhile. I was off of it for a day and I was in such pain in just one day. When I was diagnosed I was not working so, I was able to rest a lot. So, I did not feel all this pain (joints & muscles). But I started back on the medicine again after one day of being off and now the pain is not as bad. It now just feels more tired and aching. So, as this illness progesses I do not look forward to what life will be like.


Good bye for now
Amanda

 
Old 12-07-2007, 06:19 PM   #10
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veronne HB User
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hello everyone... it really feels good to know that we are not alone..like you said Janet, a lot of people who do not know what we are going through think the pain is in our heads cause we can't describe the pain!!!!!

i was started on a muscle relaxant, and a nerve medicine to help with the pain... seems pretty good...but i feel a little "goofy" with the medicines...

this support chat room is so comforting...

i hope you all have a great holiday season...

veronica

 
Old 12-16-2007, 04:12 PM   #11
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Janet W. HB User
Re: new member

Veronne - Hi, I know what you mean on the muscle relaxers!!! I take them and I am zonked- so I only take them when absolutely necessary.. When nothin' stops the spasms...

I take Pain Meds for the pain- IB would not even touch it and I tried Tylenol Arithistis- no way... So I am on a low dose of Vicodin for now.

May we all find some relief from this pain...

Hugs Merry Christmas Janet

 
Old 12-18-2007, 01:57 PM   #12
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danal84 HB User
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My husband found this message board for me so, hi everyone, my name is Dana. I am very young to have polio, I am only 23 I had it when I was a baby. Only my right leg is effected, it is smaller and very weak, I wear a brace to walk but I can still do mostly like everyone else. My husband helps me alot and we have 2 children they are 3 and 1. Next week we are all going to CA to visit my grandma and grandpa, I admit I'm a little worried about the airport security and maybe they make me take off my brace. Anyway I hope everyone is good and getting ready for Christmas.
Dana

 
Old 12-18-2007, 05:07 PM   #13
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veronne HB User
Re: new member

hello dana...gosh....i thought polio was eradicated long before you were born!?!?!?! don't worry about going thru airports.. when i travel, i indicate whith the airlines that i am handicapped..so, they make it very easy for me to travel... request for a wheelchair, and they will "baby" you till you get to your seat on the airplane...i have found out that the airlines are very friendly to handicap people... how i wish medicines/doctors would be as friendly to us who are suffering from this crippling desease.....

by the way, janet, amanda, and everyone out there, how do you make your mind accept what is happening to our bodies? i am going thru this denial phase and i can't seem to accept the fact that i have to slow down, etc..etc...etc....

and yes, the drugs are "numbing" the pain a little bit...makes my brain stupid....if you know what i mean.....

have a very merry christmas everyone!!!!!

 
Old 12-18-2007, 05:10 PM   #14
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veronne HB User
Re: new member

hello...have you had your surgery on your knee? how are you?

 
Old 12-19-2007, 06:25 AM   #15
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danal84 HB User
Re: new member

Well basically what happen is I got polio from the vaccine. I'm sorry your having pain from the polio Veronne. I guess I must be lucky I don't have any pain most of the time, the only time is when I walk without my brace. It's ok a little bit like around the house, but if I do to much I get pain in my knee and my back. When I was 16 I did this for almost a year, I moved from CA to GA and somehow I thought I would look more "normal" in my new school if I didn't wear a brace. Of course I was in pain all the time and I'm sure no one thought I look normal the way I limp and my knee bend back. Anyway after I met Kevin and we get to be friends he asked me all about my leg and I told him about the brace, and he said well if you have something that make it easier and less painful then you should use it.

I hope you have a Merry Christmas to!
Dana

Quote:
Originally Posted by veronne View Post
hello dana...gosh....i thought polio was eradicated long before you were born!?!?!?! don't worry about going thru airports.. when i travel, i indicate whith the airlines that i am handicapped..so, they make it very easy for me to travel... request for a wheelchair, and they will "baby" you till you get to your seat on the airplane...i have found out that the airlines are very friendly to handicap people... how i wish medicines/doctors would be as friendly to us who are suffering from this crippling desease.....

by the way, janet, amanda, and everyone out there, how do you make your mind accept what is happening to our bodies? i am going thru this denial phase and i can't seem to accept the fact that i have to slow down, etc..etc...etc....

and yes, the drugs are "numbing" the pain a little bit...makes my brain stupid....if you know what i mean.....

have a very merry christmas everyone!!!!!

 
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