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Living with Polyneuropathy CIDP, GBS, & CMT

What I wish people understood


#1
  1. I will use every bit of my strength and determination to appear normal to you. I at be exhausted and weep later, but to you I look okay.
  2. Please don’t forget about me.

#2

That statement is so true to me. Especially when I park in handicap parking and don't use my wheelchair to wakl in to get a bx of cereal.

Of course those who know me want to know how I manage to be so pleasant and happy with every going on.

Thank you for putting it in words. And know that you and we will not be forgotten. There are others to turn to.


#3

Thank you.


#4

I tell people I have CIDP and usually I get the "deer in the headlights" gaze of confusion and duce-isity. I then tell them it is ALS-lite, or the evil twin of Multiple sclerosis. Oh, this suspect really makes me mad, as I live on an island where all the physicians seem dumbfounded concerning this disease!!!


#5

You know I was told I am in remission, but then got referred to the Mayo Clinic by the doctors at KU medical. So now not only do I still have pins and needles but to a lesser degree in the arms:). But I am becoming quite nervous about my upcoming appointment. As my local neurologist wants me to ask the Mayo Clinic to rule out things that make CIDP sound like a picnic.

And I get the same reaction from people who don't know me. I actually had someone harassing me because I took the last handicap parking spot. They did not stop until I got the rear of my suburban open to start unloading my wheelchair.

I never said a word to them, and can only pray for people like that. I have worked long and hard to get my PTSD under control, and will not let some ignorant stranger take away my control.


#6

This is so true! I work one day a week then I am down for the count, but on my work day I look good sound good seem ok to people. It is confusing for people around me. They go on how you look and sound. I guess it could be my responsibiltiy to let them know good day bad day but that in itself gets old and gets me down. Its hard to find the balance of how much to share with people. thank you for sharing your feelings so true!


#7

I am about 50 50 . Fifty percent of the time I hurt real bad and stumble allot and the rest of the time it’s better I stumble allot and hurt real bad. Physical therapy was leaving my body bruised so I started working out on projects around the home. Lots of water brakes lots of sitting down. At least I am on the top side of six feet under. Lol what else is there?


#8



Robert Martin said:

I am about 50 50 . Fifty percent of the time I hurt real bad and stumble allot and the rest of the time it's better I stumble allot and hurt real bad. Physical therapy was leaving my body bruised so I started working out on projects around the home. Lots of water brakes lots of sitting down. At least I am on the top side of six feet under. Lol what else is there?

#9

When I was first diagnosed, nobody could understand what the problem was. I looked fine and healthy, apart from the odd stumble, numbness and feeling like I was trying to walk in treacle! About fourteen years down the line it is now evident that I am disabled.I too, used to have a lot of trouble when parking in a disabled bay and have been challenged on several occasions, nobody bothers me now. My family and close friends do say that they dont know how I manage to remain cheerful... it is not always the case, but I try to be as positive as I can. My glass is still half full.


#10

My husband has CIDP and people thinks he looks healthy,they cant or don't want to admit there is something wrong.But I tell people till you have walked in my shoes you will not understand.


#11

Keep up the faith.You are the only one that knows how you feel.GOD BLESS.



bteeter said:

You know I was told I am in remission, but then got referred to the Mayo Clinic by the doctors at KU medical. So now not only do I still have pins and needles but to a lesser degree in the arms:). But I am becoming quite nervous about my upcoming appointment. As my local neurologist wants me to ask the Mayo Clinic to rule out things that make CIDP sound like a picnic.

And I get the same reaction from people who don't know me. I actually had someone harassing me because I took the last handicap parking spot. They did not stop until I got the rear of my suburban open to start unloading my wheelchair.

I never said a word to them, and can only pray for people like that. I have worked long and hard to get my PTSD under control, and will not let some ignorant stranger take away my control.


#12



nana said:

My husband has CIDP and people thinks he looks healthy,they cant or don't want to admit there is something wrong.But I tell people till you have walked in my shoes you will not understand.


#13



GREG M said:


I CAN UNDERSTAND WHAT YOU ARE SAYING PEOPLE ALWAYS SAY YOU LOOK LIKE YOU ARE IN GOOD SHAPE AND I ALWAYS HAVE TO TELL THEM ITS NOT WHAT YOU SEE ON THE OUTSIDE ITRY VERY HARD TO MASK MY PAIN AND DIFFICULTY I HAVE TO CONTEND WITH IN ADDITION TO HAVING DIABETES AND CERVICAL FUSION PLUS OTHER HEALTH ISSUES. I AM GLAD I FOUND THIS SUPPORT GROUP FOR PEOPLE WITH CIDP FOR SO MANY PEOPLE CAN BE RUDE AND INSENTIVE AND MAYBE I NOW CONNECT WITH PEOPLE THAT SUFFER FROM THIS AFFLICTION. GOOD LUCK TO EVERYBODY OUT THERE WE ALL KNOW EACH OTHERS PAIN.
nana said:

My husband has CIDP and people thinks he looks healthy,they cant or don't want to admit there is something wrong.But I tell people till you have walked in my shoes you will not understand.


#14

Even my neurologist told me I don't look "sick enough" to have CIDP when he met me. I'm so used to faking how I feel. I must be pretty good at it.


#15

I KNOW WHAT YOUR SAYING MY OLDEST DAUGHTER ALWAYS TELLS ME THAT I AM VERY GOOD AT HIDING MY PAIN AND OTHER PEOPLE HAVE MENTIONED AS WELL. THE PROBLEM I HAD FOR YEARS DOCTORS WOULD LOOK AT ME LIKE OH ITS NOTHING OR SEND YOU FROM USELESS TEST AFTER ANOTHER. FOR A LONG TIME I THOUGHT AND BECAME RESIGNED TO THE FACT I MAY NEVER KNOW WHAT WAS WRONG WITH ME AND STARTED TO QUESTION MYSELF UNTIL BY CHANCE MY NEW DOCTOR WHO IS GREAT AND LISTENED TO ME AND REFERED ME TO A NEUROLOGIST THAT WAS DEDICATED AND IS A EXPERT IN THE FIELD OF NEUROLOGICAL DISORDERS. EVEN THOUGH CIDP IS A TOUGH DISEASE AND I HAVE A LONG ROAD AHEAD OF ME I FEEL A LITTLE MORE PEACE OF MIND TO AT LEAST KNOW WHAT IS WRONG WITH ME .

JanD said:

Even my neurologist told me I don't look "sick enough" to have CIDP when he met me. I'm so used to faking how I feel. I must be pretty good at it.


#16

We went to my husbands neurologists this week for 6 month check up and he said he is getting weaker.Also our family dr has him on Lyrica for the burning and pain in his feet.I asked about the confusion and he says its caused by the Lyricia and to descress iT.Does anybody else have confussion with this disease,i thought I read somewhere that it could go along with it.It started long before he was on Lyricia,i know his age has a lot to do with it,he is 78.He is in a lot of pain and after descreasing this drug,its about unbearable..Pray that we can get some relief.


#17

I THINK MAYBE CONFUSION COULD BE MANY FACTORS. IN MY CASE SOMETIMES ITS MATTER OF FRUSTRATION, FEAR AND NOT KNOWING AT 57 WHERE THIS MAY LEAD TO ONE DAY. I HAVE NEVER USED LYRICA BUT USE LARGES AMOUNTS OF GABAPENTIN WITH ADDED TRAMADOL, ASPIRIN, TYLENOL. ITS HELPS MOST THE TIME BUT NOT ALWAYS. SO MANY PEOPLE REACT TO MEDICATION IN MANY DIFFERENT WAYS AND THIS CIDP FOR ME IS SO UNPREDICTABLE ON A DAILY BASIS AS IF I AM WIRED TO AN ON/OFF SWITCH AND SOMEBODY IS RANDOMLY PLAYING WITH IT. I BELIEVE AGE COULD BE A CONTRIBUTING FACTOR BUT I WOULD MYSELF REALLY PRESS THE DOCTOR FOR MORE OPTIONS FOR PAIN ISSUES IF NOT THEY MAY NOT TRY ANYTHING DIFFERENT. GOOD LUCK.

nana said:

We went to my husbands neurologists this week for 6 month check up and he said he is getting weaker.Also our family dr has him on Lyrica for the burning and pain in his feet.I asked about the confusion and he says its caused by the Lyricia and to descress iT.Does anybody else have confussion with this disease,i thought I read somewhere that it could go along with it.It started long before he was on Lyricia,i know his age has a lot to do with it,he is 78.He is in a lot of pain and after descreasing this drug,its about unbearable..Pray that we can get some relief.


#18

My husband had to go off the Lyricia because of a diagnoise of early dementi.He takes Advil now for pain and he hasn’t walked in 6 months.the drs say he has built his strength back and they want him to take theraphy but he refuses.He has had it all last year as an inpatient and at home.But he doesn’t want it anymore…His nerves bother him more then anything.He says he feels like his body is just shaking or trying to run away.The DR gave him Zanax and I give him 1 tb when needed and he says it helps.Does anybody else have this problem? and the problem of being paralyzed.


#19

Nana, I’m so sorry to hear that this is happening. I know it is difficult for both of you. This is a great place to unload and reach out for support, and I’m glad that you are here.
Seenie from Moderator Support