View Full Version : Post Polio And The Mind Game

04-11-2008, 07:17 AM
Hi Janet, cheryl and everyone. When I first started seeing Dr. in 1996 there were many sceptics as I got polio in oct. 1955 the vac. came out in april the same year. The local Dr. told me that in no way never in a million years that what I was going throug had anything to do with polio so loose that thought right now. I saw a number of neurologist who did every test known to man, if i as many needles sticking out of me as they put into my body checking every nereve they all came to the same place, I had no reaction when they tryed to use the shock waves my nereves were dead. But still they told me it had nothing to do with polio. The mind game continued for a while. When the orto.dr. finialy made an appointment for me at Shepherds because they had no clue as to what was going on with me. When I went to the appointment and was called back I walked down a long hall at the end of that hall was a lady watching me walk they took me into a exz. room and did all the things like temp., blood pressure, normal thing. Then this lady that I saw at the end of the hall came in her name is Dr. Hannah Snowball she never ask me if i had ever had polio she told me that I had polio and now I had pps, and that at that time there were thousands of people with pps. They stopped me from working and I had to go back into braces again. The mind game begins. I was taught when i was younger I could do anything i set my mind to and i did just that. For 27 years I did construction worked hard every day as we all did. Now when I found I could no longer work I had a mental block against pps. I wanted to keep doing and going just as hard as I always had done in the past. It's not hard to have a mental block when you have worked all your life to get what you have and don't want to loose it. I put this out of my mind and try to work with pain, getting tired real fast, not benig able to keep up, so i ended up seeing more dr. When they sat me down and showed me what was going on, not just telling me but showing me through hundreds of cases that had seen and had been working with for many years before me, well the light came on. It's easer to have a mental block, rather than to say I have pps. Because it is easer to say it's not happenning to me I know thats what I did. By not listening to the Drs. and my own body I not only did i do more harm to me but also to my family. As I have said before I am hard-headed stubborn, but i know i have to slow down just to have the strength to do the little things. Now when people ask me how ya doing well I just tell them I am enjoying bad health, because that is what I have physcial bad health. So everyone please listen to the people here because we have been where you are right now, and are going through it with you. As we get older it gets harder to get around and when it get cold man every joint in my body hurts. So listen up, parts of our bodys that were not effected when polio struck can now be, I remember people in the iron lung saw many when I went to Warm Springs, now I know of at leat three who never had problems before but now they are on oxygen for the rest of their lives. So don't let a mental block come between you and pps. It can hurt you very bad. I know first hand. So talk to the people here or if you need to talk over the phone let me know i will be glad to because i'm not going anywhere. Ronnie

Janet W.
04-11-2008, 07:00 PM
Ronnie - You have put it in great words.... So glad you have posted this. It is a long journey we all have- but we can do it. Just like you must know sometimes your mind Does play games and you think this is not happening to me.

When I went to see Dr. Bruno, I said to him - I only had a mild case of Polio- He told me he did not think there was a mild case of Polio- Polio was/is Polio. I think now I truly agree what he said to me.

So- it is so crazy, like today- I had to cancel a doctor appt. and been staying in bed off and on... I just did not have that energy to get dressed, drive to the doctors and such- so I stayed put. It just hits yah like that and you have to learn how to except it. So I am going to lay back down- cause even sitting here typing gets me weak and pain.

Hugs to all Janet (May sunshine fill your days)

04-11-2008, 08:11 PM
hi ronnie,janet,and all...i really understand what you're saying ronnie,and hope i know when enough is enough,before its too late...knowing what i Need to do,but Cant do yet,makes it even harder yet too...everybody here has been through the process of actually getting diagnosed with PPS,and i am just in the beginning stages of trying to get diagnosed and documented,so when the time has come for me,i hope to not have unneeded hassles in trying to get on disability,having to get a lawyer...its not so easy to get on disability,and like i said in my last post,so far none of the doctors have even mentioned the possibility of going on disability to me...and too,i dont think i'm denying that i got this PPS,just trying to go as long as i can,if i can,and yes that means working with this pain i know,as i have been so far...i'm trying to build up a social security income to be able to live on,with the time i might have too...but no,i definitely dont want to do this when its too late neither...

janet,when you were going back to school,what were you going to school for?...my daughter is trying to get me to go to school to become a medical transcriptionist,soooo that i can get out of this work i do,and work from home instead...she is going to do this,so she can work from home...i think i would rather do this if she were doing this too,as she could help tutor me when i need it too...my question is,would i be taking on more than i can handle?...its not like i have to be in classess several times a week,i do have to put in 15 hours a week for the first month,but can do a lot of this online too...i'm just afraid of getting in over my head,but would be a way out for me and still have an income too,and could get away from this physical labor job that i do...well its been a hard day and gotta get to bed...cheryl

Janet W.
04-12-2008, 10:18 PM
Hey Cheryl-

I was going back to school to be a Medical Secretary- but I thought maybe learning the transcript part I could maybe do some from home- instead of working in an office. I lasted 1 whole week in college-But I was full time and already had so much on my plate with my husband- that is what I called my wake up call- new something was really going on. I could not function not only physically but mentally. PPS can also affect your brain so my concentration is not good..

But that might be something you could look into and take courses from home- I thought about maybe taking a course at a time- but right now it is not in the cards. I am a caregiver to my husband who has been awaiting a transplant for over 4 years now- so we have our days.. But take day by day.

Hugs Janet;)

04-29-2008, 01:05 AM
Hi ronnie53,'guess you can tell Im another newbe,I don't yet know how all this stuff works,but I'll make it like always.
I had polio when I was only 3 monts old. My dad said they wouldn't accept us at the hospital where we lived, he had to take me several hundred miles to the othr end of our state. I guess people were scared and who can blame them?
i've used crutches all my life, undergone God knows how many surguries, braces, and a world full of ignorant people.
I'm not being mean or acusatory toward them, it's just that that they don't understand. All of that, now I just a few days ago discovered what has been happening to me.
It's the first I heard of PPS. It is an awful shock to someone who, like you has always been almost unstopable when you find you can't do it any longer
Although I had to use the crutches, I've always made my own way. Now that is getting more and more difficult.
I guess I'll see what happens next, this is like a war, you never know what's next or where it will come from.
'Guess I've spouted off enough for now, but I'm really glad to have found this site so we can shre our stories,rants, worries,curses, and even blessings with others who know and understand.
Bye for now------------Phill

Janet W.
04-29-2008, 01:55 PM
Welcome Phill- thank you for sharing your story... So sorry you had to go through so much... I understand what you are saying about the ignorance of Doctors- makes a person not even want to go. I feel that way and I never went through the things you did as a child.

Knowing there are so many of us out there, kind of eases the mind. We are here for you and Do understand what you are going through. It is a definite shock to us when we find out about this PPS- It still shocks me. What hurts the most is family member and friends seeing how we have changed and are changing- does not make us less of a person.... But when you are used to doing just about everything and then down to trying to learn how to do things not to cause more pain or weakness- well it can be very emotional.

Welcome again and Hugs

04-29-2008, 02:47 PM
Hi Phill, Janet and all: I had to find a new Dr. because the one I was seeing was no longer practicing any more. I wish he was because this one I see now is really something nuts. He want give me the meds. my other Dr had me on and I can tell because I don't do anything now. I forgot about a blood test at the lab and this guy cussed me out, told me if i did it again to find anothe Dr. and he was not going to right me any meds because I forgot. I blew my top let him have it with both barrels asked him who he thought he was and to tell me just what he really knew about pps, his answer it's not real. We are all just a bunch of babies who try to get Dr. to write meds. for something that don't even exsit. I went back home got my old files and records and took them back to this quack told him if he were just a freckel on my old Dr. butt he would read my files and get back with me to discuss this futher or he could talk to my lawyer, either way it didn't matter to me because one of the judges here knew me when I was a child he and my dad hunted together, He knew what my family went through during that time. Well I am looking for another Dr. It's a real shame that people don't understand what we go through everyday or they just don't want to. I think the CDC should go on record that pps is real and it has affected more people in the past few years than AIDS. Well that just my thought. Keep fighting this battle and I am going to win. People must know about us stop pushing us aside and start doing right by us, we are not asking for a million dollars, but just to be treated fair after all we are still human and have feeling to. Well guess i have said enough for now. Thanks to all of you who we can draw strength and courage from God bless Ronnie

Janet W.
04-29-2008, 06:17 PM
Ronnie - So sorry to hear that you had to go through that!!!! Some of these darn doctors out to be fired.... At least we can fire them.. PPS is real and is listed in Medical Books.... The National Institute for Neurogical Disorders is (NINDS) and has been running different tests to find maybe a cure or something we can take to ease some of these symptoms.. Some have even looked into Stem Cells, etc.

I think Polio was just so Political(they made it that way) since they figured they had found a cure(which they are not God) they choose to ignore it... There are just so few doctors to treat us - that is why if we find a good doctor maybe give him/her information about PPS- if they read it-great... I did give my regular PCP some info. / see her next week and I will bring some more information.

Anyways, I would be fuming, too... Thank God we have a place that people understand- Hang in there...:cool:

Hugs Janet

04-29-2008, 06:50 PM
Thanks for the welcome, Janet W. I konw know how it can be with Doctors also-hope Ronnie finds a GOOD one.
Can someone tell me the difference between a "quote" reply and a "quick" one? I 've never done any of this before.
Thanks & my best to you all----------Phill

04-29-2008, 09:01 PM
Hello everyone! Boy everyone has been busy today writing about your experiences. We could write our own books, huh? The other night when I welcomed Bob to the board, I meant to say welcome Mugs. My brain doesn't work so good somedays. Must be my age. lol Anyway glad to have you all here and to share. I hate what most of you went thru with school and the mean kids but believe it or not being in a handicapped school we all made fun of each other at times. My best friend from there for 15 years, we lost contact, was born without any arms and did everything with her feet. I remember she had real pretty legs and mine were all crooked. Wonder what she was thinking about me having arms and hands? Yeah these Drs. are something else. Hooray for sticking up for yourself. That kinda sounds like what I would have done. Most of them are just pill pushers and don't know doodlee squat. Really at this point in my life the only ones that really seem to understand what I go thru is my Mom and Dad. I don't even think my husband of 39 yrs. understands completely. Maybe some of it is my fault because when we married I wanted to be this great wife who could do it all and believe me for the most part I did. Now I just can't but still try in my own way. He calls me "Wonder Woman". Oh well, live and learn. Gonna turn in. Have a good night. Love you all, Phyllis Welcome aboard Phill

04-30-2008, 04:03 AM
hi everybody...had my second PT yesterday,and wont be doing that again after work...he even backed off on some of the exercises,and to try them maybe just once a day or every other day...dont know if i had it from work or after some therapy,but i had a knot above my knee,and even showed it to him,and this morning the knot is still there too...kinda hard to tell how much therapy tired me when i worked all day,but i had an ice pack on the knot,and heating pad on the backside of my leg by 5pm...working with a bunch of men,is a mind game for me every day,because i have to do what they can do...i am the hardest worker in this shop,and they push me the hardest too...well i hope everybody is doing well...cheryl

Janet W.
04-30-2008, 12:34 PM
Hi Cheryl- Sounds like maybe this PT is not for you(especially since you are working and already using your tired muscles) - the knots sound like you are having maybe spasms in that area- that is when the muscles tend to contract, etc. and then they knot and spasms occur. That is what goes on in my shoulders- Started about 5 years ago when i was working- those where the muscles I was using the most at that time- Hurt, Hurt...

I go in awhile for my 2nd PT and one of the exercises I am doing - is making my shoulders hurt worse than they do- so I am going to let her know. They need to know- because with us it is not the phrase "No Pain No Gain" - Pain can lead to more muscle weakness and God knows we do not need that....

Please take care- rest when you can Why do we feel we need to compete? Sounds like you are still pushing yourself- we all have done that - and now back on my soap box, sweetie - you are doing your body more harm than good.... Please start thinking about slowing down- before this PPS puts you right down flat on you back- Please listen - Your body is screaming at you.

Hugs Janet

04-30-2008, 10:12 PM
Cheryl I total agree with Janet and this PT your doing. Does not sound good at all. From what I've experienced those weak muscles are not going to get stronger with exercise. They will continue to break down. I was told I couldn't have knee replacements because of the strenous PT after the surgery. I have no upper leg muscle and no lower so how could I rehabilitate? See what I'm saying. I know you must have some good muscles left but like Janet said your body is screaming out to you or you wouldn't come home from work dragging and in so much pain. I don't want you to feel we're ganging up on you but it is out of love and concern. We've been where your at to some degree and we want you to have some guality of life before you break down completly. Please be careful. In my case and probably so many others no one told us to slow down. Whats the saying Janet, "reserve to preserve". I think thats right. Have a good nights rest all and tomorrow will take care of itself. Love, Phyllis

05-01-2008, 05:33 AM
hi janet,phyllis,and all...ya know,thats exactly what that physical therapist said when i showed him that knot,he said thats how i'd get muscle spasms in that area...and when i have gotten muscle spasms before,thats the area where i got them too...i cant go to physical therapy but once a week,my day off,so i'm just going to do this until i go back to the physiatrist,which will just be one more visit,to prove to them,i cant do this...if i'm so tired and in pain after work,how can they think i can even do this anyway,even at home...i got me an appt. with my primary care doctor again,to see about trying differrent medication,but cant get in to him for three weeks,so i wonder if i should continue this Neurotin till then?...the physical therapy is supposed to strengthen my hip,as its the cause of my knee instability,but like i told the physical therapist,the knee is not my pain...all my pain is in my upper leg...i think that knot has gone down some,but it still feels tight in that spot too...and ya know phyllis,i sure didnt think about that,till you mentioned it,how could we go thru hip replacement,when the therapy would be too much for us...but yet,i've seen people on here,that have had knee replacements,hip replacements,and have wondered then,if that was something we'd end up having done too...this last time,i asked the physical therapist about a brace,and he too,thinks we should wait on that,thinks i dont really need one yet,unless i get worse...i am so trying to make it another year and a half,to get my 20 yrs. in,but i'm not sure i'll make it...well i see the neurologist this morning,so will let ya'll know how that turns out...cant even rest on my day off cuz of doctor appts now...love ya'll and thanks for caring and understanding,because nobody else sure does understand...cheryl

05-01-2008, 06:22 PM
hi ya'll...well i saw the neurologist,and she seems to think its not so much as post-polio syndrome,as it is the deformity of my leg and foot and all the surgeries,thats causing me all this pain...but she did say,that i cant do this work much longer,and asked me if there was some way i could sit down,and there's no way...so i told her i'd rather go out on disability,as i'm in a union and would get a disability pension,than find a differrent job making $8 an hour...and i told her i'm trying to make it to 20 yrs since i'm just a year and a half from it,and she told me,she didnt think i'd make it much longer than that...she told me to check on an early retirement or disability to see which would benefit me,and she would wait on making her report out,because she will support me in this,but she has to word things just right though...and i'm to see her again in 3 months...she is having me get an EMG done by someone else and says he's more familiar with this post-polio than she is too,so i wait for an appt. on that next...and she said i am not taking near enough pills,so she upped the Neurontin,to NINE pills a day,three pills three times a day...at first i thought she was just upping it to three pills a day but when i got home and looked at the bottle,it said three pills three times a day,so does this sound right to ya'll??...i thought the orthopedic doctor told me a maximum of 1200mg a day,which would be just 4 pills a day then...i'll see my primary care doctor in a couple weeks,so i'll take this dosage and see if it helps between now and seeing him...this neurologist was very serious when she said i cant do this work much longer,but i think because she sees i have no problems with my arms and other leg,that she thinks it might not be post-polio,but if i keep doing this work,i will eventually lose it there...when i'm off work,or on vacation,i have no pain,so its the strenuous work i do and walking and standing,thats causing me all my pain...and everything is connected together,the hip,the knee,the leg,the thigh,and its wearing out...i came home from my appt. and spent almost my whole day off in bed today,just didnt have any energy to do anything...well i hope everybody else is doing well...cheryl

05-01-2008, 09:49 PM
Cheryl are you serious! Nine pills of neurotin a day. That sounds like a lot to me. I would check with the Dr. and make sure he didn't make a mistake. I tried to take Lyrica which is like neurotin and it had too many side effects for me. Please check that out before you take nine tomorrow. Hope you can rest tonite. I had a bad day. Get so depressed when I try to do anything and give completely out. The biggest thing I tried to do unsuccessfully was hang a picture. The nail kept falling and by the time I picked it up three times I didn't have the energy to use the hammer. Maybe tomorrow will be better. Have to go shopping. Maybe I'll buy me something pretty and feel better. Take care Cheryl. Don't know what your schedule is but hope you don't have to work on the week-end. If not get a good book, lots of chocolate and REST, REST, REST. Love ya, Phyllis

05-02-2008, 04:13 AM
good morning phyllis,and all...i have a pharmacist in my store so i think i'll ask her if taking this many pills of Neurontin sounds right...on the note the dr. wrote for me,said to gradually up to 3 capsules 3 times a day,so i'm trying to figure out what she meant,or if maybe the pharmacy made a mistake...i read the side affects and can cause dizziness,and should use caution when having to be alert,or using machinery,and i really have to be alert when i'm using that saw ya know,and i really dont want to let my boss know this neither cuz of the last time...it may cause dizziness,but it might not neither,ya know...and side affects can go away too,once you start taking regularly...so i dont want this to be a big deal with my boss,if it need not be ya know...but the ammount of pills in this prescription (270 pills), would add up to 3 pills,3 times a day though,for a 30 day supply...dang i hate taking pills,and now i gotta medicine cabinet full seems like...and yes i work weekends phyllis,thursdays are my day off...weekends are hell on me too cuz this is the busiest store in our company...i am taking vacation the middle of june and cant hardly wait because i need one now...well i hope you're feeling better today phyllis,and everybody else too...love ya'll cheryl

05-02-2008, 10:39 AM
HI Cheryl, Janet, Phill ,Mugs, Phyllis, and everyone. cheryl I take neutontin also 3 300 mg and it dose help me it's about the only meds this quack will order, but I take them at bedtime, this may be the rreason I don't have the same systoms as you. You might ask your Dr about taking them before bed time this may help. Ronnie

Janet W.
05-02-2008, 04:17 PM
Hi Cheryl Phyllis, Mugs, Ronnie and everyone Jan, etc....

My gosh Cheryl, 9 pills does sound like alot- I was on Neurotin last year and was only taking it at night also. But not that much..... It makes you more fatigued than you probably already are????

Anyho- Dr. Bruno wanted my doctor to take me off that because it is more for people that are diabetic with the nerve pain. So that is what we did- I think also if I remember I was getting some side affects- but can't remember for sure... Be careful what you take with other meds- each doctor needs to know what you are on and not have you strung out in lu lu land- .. although sometimes I feel I could go there - LOL...

Sounds like you are on the road to either changing jobs or maybe going on SSD- this is good- your body will love you.. You my friend need to take a Long Rest....

Cheryl, it is so difficult for our loved ones or others around us to understand what is happening to us.. I think that is one of the most trying things for most of us PPSers... The best one that gets my goat is when every muscle, nerve hurts all in different places and it at times feels like it is right in the bones and they reply -"But you look so good" - Agggghhhhhh!!!!! Somedays I can do things where other days I cannot do that same thing or I may start out doing tasks and all of a sudden BAM - yah hit a brick wall- this PPS stuff is something else- but to have a life we do need to "conserve to Preserve" Phyllis that is the saying.

Has anyone else read Dr. Bruno book? It is written so easy to understand and not just for PPSers but people with other problems can benefit... I highly recommend this book...

Cheryl, you are on the right track - Oh - why does the doctor need to do an EMG? You already know you have PPS- just to warn you it can be mighty painful and lordy girl sounds like right now you have enough pain... Just wondering - I have not had one down and really guess there is no reason - Anyone else here have an EMG?

Hugs to all Janet

05-03-2008, 04:22 AM
good morning everybody...well i asked the pharmacist yesterday about this dosage and she looked it up in her book,and she says normally 6,anything more than six pills wont make you feel any better,but it did not say you couldnt take nine pills a day neither...she did recommend i gradually increase up to that though,because yesterday i was kinda not actually dizzy,but was like i was kinda swaying around when i'd be walking...so instead of taking 3 in the mornings,take one pill,then two in afternoon,and two at nite at first...they say side affects can go away once you've been taking them regularly...i dont know if it was that i wasnt in the cold too much yesterday,or if its the pills,but i wasnt in the excrutiating pain like i usually am,so made a note of that,and will see how today goes when i'm in the cold all day today...janet i really dont know why they're doing an EMG,but when i read something on the internet,it said an EMG is done when a diagnosis is in question...so if they have any doubt,i dont mind doing this EMG then because i have no doubts...i have heard too that these EMG's can be uncomfortable,but i hope its not too painful...if i can control this pain,it will sure help me to make it this year and a half,and maybe even a little longer if i'm doing ok then...but,at least i know i've got a way out now when i'm ready...this pharmacist that i got that Neurontin filled out at CVS,he said that too that they use this for Diabetic's,and i guess he took it too and said it caused a lot of dizziness with him and he stopped taking it...my primary care doctor said he uses it to treat fibromyalgia patients,so i'll take them till i see him in a couple weeks so i can let him know if its working by then...but i know just taking two pills a day wasnt even touching my pain though...i'll do the increasing a little at a time,like this other pharmacist suggested though...
i sure hope i'm on the right track here janet,but didnt agree much when this Neurologist said she didnt think it was so much as post-polio,as it was that my leg and foot have a deformity and all the surgeries i've had,would cause me these problems...but yet then too,she says if i do this work much longer,i will lose it in my arms and my good leg,and to me thats part of this post-polio...by the time i see her again,i will have seen my Physiatrist again,gotten the results of this MRI,and have this EMG done too,so we'll see what happens then...well i hope everybody is having a good day today...cheryl

Janet W.
05-04-2008, 02:14 PM
Cheryl - I guess than an EMG would be good to have- this way it can rule out other possibilities... But do not make them a ginnipig out of you... You been through enough already...

Today, I got to say- I am dang gone whipped, I think the last few days finally caught up with me.. Driving really bothers me alot. I have been laybg down more than I am up- hate days like this.

Hope everyone is having a nice weekend.. Signing out now, my figures are even giving me hell-o today.

Hugs Janet

05-06-2008, 03:35 AM
hi janet,and everybody else...i get this EMG done thursday,so i dont have long to wait on that...the MRI and the EMG should be the only tests i need to have...i dont know why,but the last 3-4 days,i have not had the excrutiating pain,just a tired leg,at the end of the day...dont know if its the Neurotin and the increase,because i still worked the same at my job...so the other nite,i tried some of the physical exercises and a couple of them last nite,and they do tire out my leg even more...maybe its cuz this neurologist sees i dont have problems with my arms and my good leg,is why she tends to think its not post-polio,as much as its the deformity and surgeries i've had,but did say i would lose it everywhere else,if i do keep up this work i do...i hope i find out the results of this EMG,because its 3 months before i go back to see her again...i read too that after an EMG,you'll be sore for a few days,so working is just going to compound this too...well i hope you're all doing good...cheryl

Janet W.
05-06-2008, 08:44 PM
Hi Cheryl and everyone- Cheryl wish you luck with your tests. That is good news that your pain has lessen - hopefully the Neurotin is helping. Pray, pray.

Hope everyone out there is doing good and pain free as you can be...

Bless Yah all Janet

05-07-2008, 04:55 AM
Greetings All. I read some of the back posts since I haven't been on for a few days. I'm having skin integrity issues so I've been down for the last few days. I finally went to the doctor and they gave me diflucan and it seems to be working. I like the idea that you only have to take one pill. Love that.

Cheryl, I've read the posts for this week and it sounds like you are on the right track. I'm just sorry that getting better has to feel worse in the beginning.

I must be brain dead because when I've had my EMG's, it was a little irritating but I didn't experience anything much. Hmmmm. Maybe I got lucky. It's the test where they hook you up to a machine with wires in different places and the machine sounds real static-y?

Not much else going on around here. The weather is still not warm enough for me even though the sun tries to lure me outside. I'm feeling this winter the cold more than before. It just takes a minute or 2 and if it's cold, I immediately feel it in my bones. Have you guys had any trouble with it? Also, I've been waking up choking. It's like the barrier between the nose and throat is open and my saliva runs down my wind pipe and makes me wake up choking. I am going to the Dr. on the 14th and this will be one of the things we talk about. I've just raised the head of my bed so gravity is my friend.

Well, it's 3:53 AM so I'd better get off my hiney and try to sleep a bit before I have to get up. Hugs to you all. It's good to chat with you. Jan