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Living with Polyneuropathy CIDP, GBS, & CMT

So over it already


#1

ok for me anyway it has got better. I had a mild form of gbs and it for me was the most sick I ever been. I spend six day in hospital, never totally paralyzed { thank you god}. yes three weeks pt. the hardest part for me is the fatigue, I have always been so very active. my hole life has changed due to illnesses. my gbs started we believe from a tick bit, erliclyiouses, couple weeks after the tick infection bam surprise yep gbs. now I also fight on going lyemes nasty stuff just will not leave my system. and r.a. witch I knew I had before gbs, I have found an herb call tumric and it has been a blessing. I also take vit b complex, and lyrica. I also no longer eat red meats. and let me tell you this has been a very hard thing cause I love a rare steak. I am almost 4 yrs. post gbs, i still have little pings and neuropathy pain but nothing real severe. I do have fears of repeat, of gbs, but I think we all do. it has been a slow sometimes painfull recovery, and believe me I wanted to be well quickly. it is a long drawn out syndrome. I have been mad , depressed, just plain done with it all and I am sure I will have many more emotions to over come. and yes the why mes. but now every morning I wake up and think hey I can walk , talk. sometimes run, I have a great supportive family, I have a couple great drs. that have been of great help to me physically and mentally. I am shoting for100 per cent mark, and hope and pray I get there. my other saying I live by is a moving body is a happy body. hey enough from me. get your rest, and listen to your body it will speak to you, there is hope, I hope all have a very healing day, week, month, ect, ect, ect.


#2

Hey kel there is a lot of wisdom in this post. I like “A moving body is a happy body.” It is incredible how resilient we really are when we put our mind to it, isn’t it? Thinking of you, and hoping you get to that 100% mark soon.

CG


#3

Love this too, “A moving body is a happy body.” Moving was the best thing for me although it was tough. And I had to accept not being able to move very much for awhile until I could slowly work my way back. I am so thankful to have recovered so much after 2 & 1/2 years. It’s amazing how much the body can recover from this with time and persistence. I can still feel the effects from this but I am living my life again, running and working out. The big thing is not to get too discouraged and focus on the positive, no matter how small the accomplishment.


#4

Thank you much for the reply just wanted everyone to know there is a light in the tunnel of gbs every small accomplishment is a mile stone we have all been there some not as sever. This site has been a god sent to me I have learned so very much. Thinking positive thoughts for you and all who follow this. May we forever continue to improve


#5

Thank you for reply. I was never completely paralyzed but still unable to get around very well. Walked with walker for awhile then a cane balance issues. I was hospitalized for six days Givin two rounds of get well juice, ivig. My right side has been effected more, I still have some of the numbness and tingling hurt mostly at night I as well exercise, stretching is my favorite fell good exercise, I do walk alot . Running is not a good thing as for my joints, have other issues there . Hope life is good keep up the hard work. Believe me it is a day day struggle with this syndrome we that have been there know full well… of the see my dr. Today for the lyme issues. She is a great dr. Very wise late hugs to you and all