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Living with Polyneuropathy CIDP, GBS, & CMT

Newly diagnosed and have Q


#1

I have recently been empirically diagnosed with CIDP. My journey started with a flu that would not go away. 4 weeks later I had pain in the deep muscle of my right leg and severe fatigue. This went on for about 2 months. It eventually seems to drift away and I had no symptoms for 6 months. Then I hurt my back doing too much yard work and had another episode that followed a similar pattern. After a 3rd episode (again hurting my back), I found a specialist that agreed that my symptoms were probably from CIDP. I still deal with mild fatigue but haven’t had an episode where I had other neurological symptoms like facial flushing, tingling, pain in my hand and feet etc. it’s mostly fatigue. My question is when would seek out a treatment like IVIG treatment. My doctor didn’t really give me many answers. He wanted to do an EMG but I was afraid that might cause a new episode so declined. At this point I don’t feel like I have any treatments available. Even yard work seems scary because I don’t want to do too much and I don’t know what too much is. Any help would be appreciated.


#2

It takes some time to realize that each day you have a certain amount of energy to ‘spend’ before fatigue shuts you down. The hardest part is to convince others that this is the case and not understand why sometimes you have to just lie down not do something. It’s a learning process. Many of us live with this and never go to the more radical treatments needed in more severe forms. One thing I’ve found very helpful is cannabis but in the form of CBD or Canabidiols. Not to get high, but I’ve found a tincture of high CBD helps immensely when the tingling and pain starts interfering with life…


#3

Hey j-dog and Wolfgar,
Not knowing how much is too much is not an uncommon symptom for many conditions. An explanation I have found that ‘sort of’ explains it a bit is the idea of ‘spoon theory’. If you Google ‘spoon theory’ you’ll find a few sites that explain it much better than I can. But in real basic terms, each spoon represents an amount of energy. Each day I have 6spoons. Getting out of bed, I use 1 spoon, having a shower and getting dressed that’s another spoon. Getting breakfast uses another spoon. My actual day hasn’t even started and I’m already 1/2 way through my energy/spoon supply. If I choose to clean the house that’s my last 3 spoons for the day gone. Now I can use tomorrow’s spoons if I choose, but in doing so I know that I’ll have to reduce what I plan for tomorrow because I simply will not have the energy/spoons to complete as much.
For many of us this is a case of daily management and personally trying to explain it to others is near on to impossible, using ‘spoon theory’ makes the explanation a little easier. Some get it but still some don’t and probably never will until they are in something like a similar position.

Merl from Moderator Support


#4

Wow, The spoon theory is right on! I do the same thing but I still have to go to work after using up my spoons