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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP and CFS


#1

Hi guys…I am new to the forum . As i read through the remarks etc…i see a common denominator…i.e. pain . I have been living with CIDP and CFS since 2014 . Some days bad…some days less bad…but having been a person always boosting morale and positive wellness…changed after the onslaught that is CIDP.
Nobody wants to be a moaner and a burden and after a lifetime of worrying and caring for other people , i had to settle for being watched by my wife and daughter like hawks…my son avoids the whole thing…but does ask me every now and then how my arms feel ( he wants to go fishing ).
They don’t know when the next spasm might come ( me neither for that matter ) , although i do have some warning signs as to no or little sleep when the bad pains come .
At hospital , i was classed as difficult…even on paper…empathy was the last thing i received .
But in rehab…surrounded by people with Lupus…polyneuropathy… etc…i felt fine.
Nobody questioned when you weren’t at gym or leisure class…the mild pool was better than tge hot pools and the massages were to die for…dry needling was the worst thing i could ever say yes to and punished me for a month to the point of paralysis…would not suggest it to anybody…
I now…five years on…have weened myself off pills…taken to the "pain - gone -pen " and only take morphine when my body tells me to.
As of late , i have had this really nasty spells of…fatigue…droopy eyes and spasms . Arms that don’t want to hold my grandchild…let alone my fishing rod…even catching a fish ( even a small one ) seems to drain my energy .
Well…in short…that is my story and my life although i have dotted down every day of my life so far…something my GP reckons is not good…as he thinks it amplifies my symptoms…(a-hole…i don’t wish this on you) , but merely want you to know what my days are like .

For those of you who have not read the spoon theory…a must read to everybody around you …so they know what your days are like…
Many thanks for a empathetic group…
Sharing is caring
Good things happen to good people…i hope.
We are going to wake up one day and it will all be just a bad dream… just a nightmare - hopefully.


#2

Hey Leoquarius,
Although my situation is not CFS related many of your comments are very relatable. It is very easy for others to stand on the outside and pass judgement, especially the dr’s, but you can guarantee if they were in this situation they too would want an understanding from others. I too have been classed as difficult or a ‘Non compliant patient’ but when I’m in pain I’m like a bear with a sore head (no pun intended) but the lack of comprehension and understanding from the medical fraternity can be simply infuriating to say the least. I was told “…they operated, they fixed…” but this ain’t anything like ‘fixed’. When symptoms fluctuate so much trying to get a handle on things and function ‘normally’ is damn near impossible. In science (and let’s face it dr’s are scientists) A+B=C. Symptom A + Treatment B = Result C but with certain conditions A+B does not always = C and some dr’s have a REAL problem when their training doesn’t have the desired results. But rather than admit they don’t know or they don’t have the answers they put it back on us, blaming the patient. Which is frustrating to the extreme.
I say all of this because for many years I had told them there was an issue only to be discredited and had my symptoms written off as psychological, that was until they could do a test or a scan that showed there was an issue. But even now having a tangible diagnosed condition, some dr’s are less than willing to accept this reality. Me? I have no choice but to accept it, I have to manage it every day, to which the ‘spoon theory’ is VERY relevant.
I find it quite astounding that both of our experiences are not uncommon with many of the conditions on the Ben’s Friends Network, and I believe the best thing we can do is strive to support each other because, in reality, none of us have these conditions by choice but we can empathise and understand what others here are trying to manage day to day. And that understanding is worth way more than any dr’s diagnosis.

Merl from the Moderator Support Team