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Living with Polyneuropathy CIDP, GBS, & CMT

21 years later

21 years later…

Hi all,

In early October 1994 I had a severe flu like illness. I was 17 years old and still at school. After a week or so of wishing I was dead, I was well enough to go back to resume my studies. A few days after that I was walking home one evening down a steep Hill, when I found that I was having difficulty walking. My legs wouldn’t bend properly at the knees and I adopted a zombie / Frankenstein monster walk.

I had recently passed my driving test, and when I got home my mother told me to drive to my sisters friend’s house to pick her up. I said that my legs felt strange but she told me to stop being silly and go and get her. I had a very strange drive where I couldn’t properly judge how hard to press the brake pedal!

By late evening I was trying to play my guitar, but I found that I couldn’t even fret the strings and was struggling to hold a pick. Even at this point, I still had no idea that anything was seriously wrong. I thought I must have somehow pulled some muscles and off I went to bed.

In the morning I woke up and tried to get up, only to find I couldn’t do any more than push myself up on my elbows. At this point my parents realised that something was wrong and called the GP’s surgery. As I couldn’t get out of bed, I had a rare home visit.

Amazingly, my doctor, a woman probably in her late 50’s at the time, just so happened to have done a thesis on GBS in her student days and gave an initial diagnosis immediately. It was the first case she had ever seen (she was quite pleased!).

Shortly afterwards, an ambulance collected me and shipped me off to the Royal Hallamshire Hospital in Sheffield. Unfortunately for me, there had been a bout of meningitis in my school year at that time, so I was given a lumbar puncture to check for that condition, which was one of the most unpleasant things I’ve ever experienced. I was also given some sort of electrical nerve stimulus test which was also very painful. The initial diagnosis was then confirmed and I was started on a drip of immunoglobulin. I found that made me shake badly as if I was very cold.

My lung capacity was monitored hourly and it eventually dropped to a level where I was moved into intensive care. By this point (around 24 hours after I had the first symptoms) I was paralysed from the neck down, bar some breathing capacity!

I was extremely lucky that I was not ventilated. I got very close, but managed to avoid it. After around 5 days in the high dependency unit, I was moved into a neurological ward to recover. After around 2 weeks I was thrilled to find I could move the big toe on my right foot. No one could see any movement, but I could feel the muscle moving. Over the next couple of weeks my movement came back and I was gradually able to start physiotherapy and occupational therapy. I went home for a night at Christmas and then was discharged to out patient care in January 1995.

Other than muscle twitches/tremors (which I still get), I felt I’d had a lucky escape and got on with my life.

A few months ago, my mother mentioned that she had heard an article on BBC Radio about GBS. In it they briefly mentioned that long term effects included fatigue. Over the last 21 years I’ve become fairly well known to my family for ALWAYS being tired. They (and I too, to be fair) just put it down to me being lazy. I will frequently take a nap during the day and I always wake up tired, no matter how much sleep I have had. I’ve frequently commented that I have never felt refreshed after sleep.

I’m a reasonably active person. I walk 45 minutes each way to work each day, I am capable of running more than 10km and I have two young children to keep me on my toes. But I do all of this constantly feeling tired. Today, for example, I slept for 8 hours overnight, took 30 mins to wake myself up enough to get out of bed and then on an hour long drive to a family event, I fell asleep (no, I wasn’t driving!). The second I woke up from my snooze I felt tired. I even tried to have a nap in a chair in the kids playroom at my in-laws house before driving home feeling shattered and then going to bed, where I am now, at 9pm. I’ve not done enough today to justify feeling as tired as I do.

I’ve done some Googling which has turned up a few articles linking GBS with long term fatigue issues. However, none of them give any clue as to what to do.

If these issues are related to my illness all those years ago, is there any treatment to stop me being so lethargic all the time?

Thanks for reading. I’d be interested to see if there is anyone else who has experienced similar problems, especially so long after having the illness.

Wow coldcuppatea! I got chills reading your story. I was 17 in 1982 when I first started this journey and our stories have other parallels. Crazy! Welcome!

Fatigue, and trying to avoid it, has been part of my last 30 + years as well. Until I found this group, I didn't know if what I had experienced all these years was GBS or something else. Now I believe that much of what I experience is directly related to the GBS.

If there's a treatment that can stop it, I haven't come across it yet. I just keep trying to find the balance between healthy active lifestyle and not exhausting myself. A challenge for sure, but it is the only thing that seems to help.

Thank you for sharing your story, be well!


Hi Charlotte -

I'm nearing my 3 years of GBS and too am experiencing fatigue. What about your core strength? or strength in your legs, knees or arms? Last week I had to do an training exercise that required me to use my strength and found out that I am no where near what I use to be before coming down with GBS. I guess what I'm asking.....is this lack of core strength going to be with me for the rest of my life? BTW, I'm 59.

Aloha


Charlotte said:

Wow coldcuppatea! I got chills reading your story. I was 17 in 1982 when I first started this journey and our stories have other parallels. Crazy! Welcome!

Fatigue, and trying to avoid it, has been part of my last 30 + years as well. Until I found this group, I didn't know if what I had experienced all these years was GBS or something else. Now I believe that much of what I experience is directly related to the GBS.

If there's a treatment that can stop it, I haven't come across it yet. I just keep trying to find the balance between healthy active lifestyle and not exhausting myself. A challenge for sure, but it is the only thing that seems to help.

Thank you for sharing your story, be well!

I'm new to this forum. I noticed your post "21 years later" Just had to read it.

Your story is so eerily similar to mine. It was 1993 when I was diagnosed with Guillian Barre. But I was 42 years old at the time. I was almost totally paralyzed. Could still talk and breathe but could not do so much as raise a finger. I was fortunate enough to live near to OSU. Their hospital, at the time was known around the world for their expertise with it. I had Plasmapheresis (don't know if that's spelled right). I had 7 treatments of it and was on a road to recovery, even went home from the hospital, then relapsed. They diagnosed me with Chronic Guillian Barre, but 23 years later without a reoccurrence. I too have constant fatigue. Over the years I have had several family physicians, all of which tried to treat the fatigue as though it was not associated with the Guillian Barre. I wake up in the morning just as tired as when I went to bed. I have had sleep studies, been put on antidepressants, worked out in a gym every day for almost three years. Nothing helps. Back in the day, they didn't have these forums and I didn't know if it was related to the Guillian Barre. I followed the doctor's advise. I like to never got off the antidepressant medication. Bad withdrawals. It never helped me at all. I googled Guillian Barre and ran across this forum. I was amazed that several have my same symptoms. While I realize that the symptoms are not same for everyone it is common for enough of us to allow me to know that it's not just me. I would do most anything to get my energy back. Maybe someone on here will post that they have found something that helps.

In the past few years I have been getting choked a lot. Went to an ear/nose & throat doctor that said I was having muscle spasms in my voice box. I've saw posts on here with similar issues.

Hi John,

Have you ever tried using a CPAP (Continuous Positive Air Pressure) when you sleep? I find I'm not as tired getting up in the mornings when I used them compared to when I'm not using them. But my fatigue sets in as the day progresses. I find my knees and legs are the first to feel it then it affects my core and then I just lose energy. It's hell during work since I need to be on my feet a lot. On weekends I'm pretty much spending my day in bed.



Spencer said:

Hi John,

Have you ever tried using a CPAP (Continuous Positive Air Pressure) when you sleep? I find I'm not as tired getting up in the mornings when I used them compared to when I'm not using them. But my fatigue sets in as the day progresses. I find my knees and legs are the first to feel it then it affects my core and then I just lose energy. It's hell during work since I need to be on my feet a lot. On weekends I'm pretty much spending my day in bed.

Thanks Spencer for your suggestions

I have tried CPAP. It didn't help me. I've also had a sleep study that showed no significant negative results. I don't get more tired as a result of what I do. I get up tired and stay tired all day, regardless of what I do. I can work hard all day and am no worse than if I sit in a chair most of the day. The fact that I don't have the energy just makes me not want to do anything.

I have CIDP and have been diagnosed with partial vocal cord paralysis. The doctor advised singing as good vocal exercises. So yes there is a link between CIDP and vocal cord challenges