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Old 04-05-2008, 03:42 PM   #1
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Location: Leroy,NY,USA
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Janet W. HB User
Pain and Fatigue

Cheryl - I am glad you are getting some help. OMG, moving also, glad you have some help, though....

So glad to hear you have that extra insurance for disability..But please try and not wait until you cannot move to see Dr. Bruno or some Polio doctor - Try and save what muscle(s) you may have left.. I hate to sound so bossy, really I do- but if you wait too long you may not have anything left- Live life my friend, live life -

The pain does move around- somedays I think I am crazy and other days I know I am - LOL... I take pain meds, have to took me awhile to realize I need them.. they break the pain down some and I am hoping when the weather gets warmer here, maybe I will not need to take as many. Pray! Wish we could get something for the fatigue, it is so hard to explain that feeling to non- PPSers unfortunately they just do not understand.

Hope you enjoy your new digs.- Cheryl...

Huge Hugs Janet

 
Old 04-06-2008, 02:47 AM   #2
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tazkc1 HB User
Re: Pain and Fatigue

hi janet...if i ever ended up needing a wheelchair,my new house would allow for that,whereas,my own house would never allow that as it is way too small...my son moved back home to be able to help me out,so this gives us both more room and privacy also too...i have been taking that pain blocker(Neurontin)just like i'm supposed to,and i'm the worlds worst on taking medication like i'm supposed to,so i'm definitely in pain when i take medications...i take the Darvasets when i'm in real bad pain for the pain killer...but if that Neurontin is supposed to block the pain,it sure dont block all the pain,and still need to take Darvasets on bad days...i also noticed one of the side affects of the Neurontin is it could cause tiredness,and here i already got fatigue??...working with a bunch of men,they dont really understand this,so i've got to act like i can do anything...man,when this PPS hits,it started out so gradual,that i didnt realize it,but now its like there's not a day that goes by that i dont have pain now...the fatigue hit first,which i didnt associate it as being fatigued,just tired from working so hard,and then it was the pain later that got my attention...and then i find out about this PPS,and its like my whole world is changing...and no janet,you're not being bossy,i understand you've already been there,and you're trying to get me to see how far i can get,if i dont do something before that point...and i really do appreciate your concern,because i know it is out of concern...so keep on me janet,lol...well got to go to work now,and i hope you're doing well janet...cheryl

 
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Old 04-06-2008, 06:55 PM   #3
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Janet W. HB User
Re: Pain and Fatigue

Cheryl - It is so weird how it comes on and how it can progress gradually or boom. I was also taking the Neurotin for pain- it helped like you say some- but it made me so tired and God we don't need more of that. When I seen the PPS specialist he suggested My reg. MD take me off that- Neurotin is more for Diabetics with Nerve Pain and having the side effect of tiredness did not help the situation. So I stopped taking that.

I have a muscle relaxer when I get spasms and I now take pain meds daily- in hopes that I can not need the pain meds when I get my PC...

Good to hear that this new house for you will be wheelchair friendly if you ever need to go into a chair... That is great also your son is going to stay with you.... None of us need to live alone if we can help it.

Hugs Janet

 
Old 04-07-2008, 02:22 AM   #4
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tazkc1 HB User
Re: Pain and Fatigue

good morning janet,and hope you are doing well...what kind of medication do you take for pain?...my mom has a cousin who had polio and she had heard that his polio had come back on him,not really understanding that at the time,till i started having problems now,and he's the same age as me,51...she just found out he uses a cane,and is back in a brace again,and that is exactly how i'm heading too...i guess there was an article in the newspaper there on this post polio and she's sending it to me...had you heard about this PPS before it happened to you janet?...i was never aware of it before now myself...i know one thing,if i make it thru my apprenticeship,which is another year and a half,if they send me to a shop that i dont like,i'm going out on disability then,lol...when i'm ready though,i'm going to go see dr. bruno...well i gotta go to work now...cheryl

 
Old 04-07-2008, 11:59 AM   #5
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ronnie53 HB User
Re: Pain and Fatigue

Hi Everyone: Pain and Fatigue is something we with pps live with some more sivere that others. Today is one of those days for me, sometimes the pain goes to feels like the center of my bones and no amount of pain meds. can help. Cheryl I hope you read this, When I was sent to Shepards Spinal Center in Atlanta Ga. and they told me I had pps and stoped me from working I was bitter to the point I did not listen to anyone. Not my Dr.s, my wife or any persons close to me. I went right on working or trying to with little and no sucuess. The word got out I had pps and people whom I had worked for many years would not even let me sweep floors. I thought these people were just trying to keep me down, but they were only concerned about my health. I wish that this support group was around then. I had no one to turn to or talk to no one could understand what I was going through. Sounds like you got a winner in Janet she is only concerened about you because she knows what you are going through. If you listen to her and let her help you one day you to will realize that everything she has told you is in your best outcome. If I had continue to work I might not be able to do and go places with my family.
There is no new cure for us my doctors will not ever think of any surgurys because they are sure of one thing, if they cut on me they could kill off nerves that are supplying me with the little mobilety I have. So take care of your body because it's the only one you got. Don't mean to sound cruel just stateing the facts as I know them. Ronnie

 
Old 04-07-2008, 03:00 PM   #6
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Janet W. HB User
Re: Pain and Fatigue

Cheryl - Ronnie and all.

Cheryl, the pain meds I take is Lortab- I am allowed up to 6 a day and I do take at least 5... But pain meds just mask the problem and when the pain gets like Ronnie says 'Feeling down to the bone' - I don't think nothing helps.

When I get that type of feeling and try to push myself- the fatigue sets in and it is like you hit a wall- like you cannot continue on... This is not good to keep doing this to your body, you are doing more damage to your already damaged neurons. The fear I have is ending up paralyzed to the point where I would have to go into a facility. So I am begging you, STOP now while you can still walk some, breathe, talk and move some.

As far as finding out about PPS- I did not here of this until 2006- at this time I was off work on STD for chronic pain, depression and panic attacks. The doctors told me I had a melt down- Please do not get to this point. Listen to others and most importantly turn on your body so you can listen to what it is telling you.

Everyday, I can actually feel what you are doing as I read your posts and you have to run off to work- do not let your body shut down the consequences could be tragic... I just am so concerned about you, my dear. Please if you can get to the Dr. Do It now - don't be the 'Polio Survivor' that wished you listened sooner- you want to enjoy Life - you have kids and I do not know if you have Grandchildren- But you surely want to enjoy what you have Now while you have it.

I read something once that sticks in my mind - from a Vietnam Vet who has PPS - " PPS is like Guerilla Warfare - you never know where it will strike next." This is so true...

Please get on STD, see Dr. Bruno and apply for SSDI while you still have the ability to get out of bed.

OK I said enough - out of Love and concern for my 'Polio Survivors' I know it is a Very Hard Road, I fight with it everyday- but I have become more and more in tune with what my body is saying- No one else can do this but ourselves...

Hugs Janet

 
Old 04-08-2008, 06:19 PM   #7
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tazkc1 HB User
Re: Pain and Fatigue

hi janet and ronnie...hope you're doing well...yes ronnie you are very right,i got a winner in janet cuz she's been here for me from the beginning of my finding out about this PPS three months ago...she helps me out a lot...and i do hear what you're all saying too,and i too hope i dont wait till its too late...i guess part of me thinks maybe i can hang on a little while longer,and the one place i feel needed,is my job ya know...

hey janet,got me an appt. with an orthopedic doctor for thursday,going to see about getting a leg brace made for me,but also too,hope he's familiar with this PPS,but if not,maybe he can recommend someone who is...at least i'll get a leg brace anyway,and see how that helps me...been a long day today so need to get to bed...cheryl

 
Old 04-09-2008, 09:08 AM   #8
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crochetqueen HB User
Smile Re: Pain and Fatigue

Good morning everybody! It is blessed day even tho its cloudy and 60% chance of rain. Ronnie, when I read your post it was like the words were coming out of my own mouth. I have always said instead of "why me", "why not me". I'm no better than the next person to be struck with an illness or disability. I also too thank God every morning for being able to walk those few steps from the side of the bed to my power chair. Janet have you got your PC yet. If not I hope its soon. I think you'll love it. Cheryl, I don't have a PPS Dr. and have never been diagonosed with it but I've done enough research and know my body that I feel it is nothing more than PPS. My body is simply wearing down and the only thing that keeps me in somewhat comfortable lifestyle is stop pushing myself, take pain meds, and rest, rest, rest. The nights when I'm going to take a hot bath, which by the way feels so good to the legs, is don't overdue that day because I have to pull my body up and to the side of the tub with my shoulders, arms and hands. Some times its all I can do to accomplish that. Please listen to your body and don't keep pushing. You will break down whats left of your strength or maybe take a bad fall. We love you and are already in that place and don't want you to get worse sooner than maybe if you slow down it won't be so rapid for you. We are all sooo hardheaded as Ronnie testified too but oh well. When we were younger would we have did anything much different.I am blessed with a son and daughter ( two natural childbirths) a husband of almost 40 yrs. and my parents are still living. And number 1 is my Lord and Savior is my best friend. Everyone have a great day and I think of you all often. Phyllis

 
Old 04-09-2008, 04:41 PM   #9
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veronne HB User
Re: Pain and Fatigue

hello janet and everyone....

my good leg, which has carried me fo the past 49 years, has been giving me a lot of problems for the past few years now.... i have had cortisone shots in my knee, but it the effects didn't last that long... anyways, my doctor is trying something new with my knee... it is a treatment of three injections in the knee, (once a week for three weeks) called ORTHOVISC... it is a fluid that is supposed to help with the loss of lubrication on the knee joint so that helps with the arthritis pain....he doesn't guarantee it will work 100%, but i was willing to try the treatment...
(they use the same thing for horses...)

has anyone had this treatment done? i am on my second injection, and so far, it has eased the pain in my knee...

and yes.... thank you janet for being so supportive to all of us who are going through pps.....

veronne

 
Old 04-09-2008, 09:37 PM   #10
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Janet W. HB User
Re: Pain and Fatigue

Hey all- Don't thank me - thank all of you that have reached out... it is so important to have others.. Not feel so alone and keep ourselves locked up.. We all need each other.. Just so thrilled there are so many and hey, look at what we all have done with our lives that God gave us. We surely pushed our bodies and sometimes to the limit- But we are alive and still have our minds and so many stories to share.

I am still waiting for my PC- I guess it takes awhile for the insurance, etc. I have not heard of those shots in the knee But gosh if it helps = Go For It... Everyone maybe a little different on what works- But we helps us all is knowing we are not alone and Smiling.

Hugs Janet
Cheryl - Good luck with that brace, I surely hope it helps some... It can't hurt and maybe helps save some energy... Us Polio survivors should have tee shirts that Say" We are still here and now we are Green- "Conserving to Preserve our Bodies"

 
Old 04-10-2008, 05:33 AM   #11
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tazkc1 HB User
Re: Pain and Fatigue

hi janet,veronne,phyllis,and everybody who is yet to come...wow phyllis,that amazed me when you said how you have to get out of the bathtub,cuz i have to swing my bad leg over the side of the tub and lift myself up with arms and shoulders to the edge of the tub to sit on...and i am a bathtub person,like to soak in that hot bath,and like you said,it helps the leg when it hurts...but now in my new house,the bathtub is opposite,so i have to do the opposite and thats harder on me to do too...was just mentioning this to my son last nite even,and he says cant i just stand up and get out,told him no i cant and also take a chance of feet slipping in the tub and falling and break something then...and it was just the other nite even that i looked at the tub and felt like i just didnt have the strength to go thru that this time,so took a shower instead that nite...i need my hot baths though...and like you phyllis,i dont have a PPS doctor either,hadnt been diagnosed with PPS,and not sure yet even if my family practice doctor has diagnosed me with PPS neither,since i just went to him about this a couple weeks ago,but when i first found out about this on the computer,it was like everything made sense on how i been feeling...only,what i didnt know were "symptoms" before,i found out were "symptoms"...my bad leg is in pain every day,and one day the pain can be in my upper leg just above my knee,another day the pain can be in my knee,the past two days,the pain has been in kinda on the side of my leg up around my hip,and i get considerable foot pain whenever i get up to stand on my feet allll of the time...and this pain blocker(Neurotin)is not taking away my pain neither,so if i dont have any luck with this orthopedic doctor today,i'll be going back to my family practice doctor again...

and yes janet,you do deserve all the thanx cuz every new person that comes in here,you are alwaysss there for us...i may have to go to work for 8 hours every day,but when i do get home,i do rest cuz i just cant do much then...the guys at work tell me to get a life,but they just dont understand,i am done in when i get off work,and in so much pain by then too...it takes a lot just to make me something to eat...i myself dont see how a leg brace helps,but am willing to try it now,where a year ago,i wouldnt hear of it...give me time,and i will probably realize its time to call it quits,cuz even i have my limitations and endurance level,when i say no more...its just that 3 months ago,i had no knowledge of this PPS whatsoever,and often wonder had i not gotten on computer when i did,i would still be clueless as to this PPS...and sure wasnt prepared for all this,thought the worst case scenario would be that i'd end up with osteoporosis and arthritis earlier than most...sure didnt take my leg tiring out more so now,as to leg weakening more...and the fatigue,never associated my being tired as being fatigue,took it more as it being my job wearing me out and my leg tiring out causing it too...see,i always had a reason or an excuse for everything...and now here i am...

thanx guys and love reading your posts,knowing i'm not alone in this...hope everybody is doing well...cheryl

 
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