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Living with Polyneuropathy CIDP, GBS, & CMT

Snoring / Fatigue

A bit of background: I was diagnosed with GBS in Nov 2013 and have recovered by about 85%. I was completely paralyzed requiring ICU and two courses of IVIG. I still have some issues with numbness and nerve pain in my lower limbs and feet, hands and right lower face but the biggest thing is the fatigue. I don't sleep well, sometimes taking hours to fall asleep. I often wake tired in the morning and tire easily with activities during the day.

Ever since I was first in hospital with GBS I have snored though not before then. I didn't think much of it and my husband never said anything but a few months ago I went away with my daughter for the weekend and we had to share a room. She complained bitterly that I kept her awake all night. Again I didn't think much of it.

While chatting with my GP about my fatigue levels I mentioned this to her. With all the hype in the media about snoring and fatigue levels she decided to do sleep studies saying there was a chance the GBS may have affected the way the muscles work in my throat etc . It turns out I have severe obstructive sleep apnea in all sleeping positions and actually stop breathing and wake up to 108 times an hour! They are going to try me with a CPAP machine to see if that helps.

I am not sure if this will completely solve the fatigue issues but sure hope it helps. I was wondering if anyone else has had trouble with snoring after getting GBS. If they have tried a CPAP and if it has helped to reduce the fatigue.

I got gbs 31october 2013 was in itc for 6months paralyzed from top to toe . I was put on a vent. Had the ivu treatment when I woke up I couldn't move. 14months I was in hospital. But I cannot walk i!m wheelchair bound. I have started having nightmares and wake up crying. I also have started talking in my sleep. I am on 3inhalers and a nebulizer machine I have been left with a bad chest. I feel so alone, but I don't like talking about it I start crying. Ow I forgot I get fatigued as well

Hi, I was having fatigue issues prior to GBS. I was waking 130 times a night. I was put on a CPAP and it helped tremendously. 2 months later, I was hospitalized with GBS well I still get to fatigued, it is not near as bad as it was before I was on the CPAP machine. I no longer was up exhausted. I hope this helps.

Ow thank you il mention it to the Dr. It's so scary gbs isn't it no one really understand s do they what we've been through. My husband left me through it, we are getting divorced. We have just sold the family home. He kept my car. Because I'm in a wheelchair u couldn't keep my dog. Feel like iv list everything through gbs. What part of the country do you live

I too have obstructive sleep apnea but was diagnosed with that about five years before I contracted GBS. I wear a CPAP every single night and per my husband, I no longer snore nor do I wake up exhausted. I didn't know that I snored like a freight train and my sweet husband didn't want to make me feel badly by telling me. It was my primary care physician who suggested a sleep apnea study to help diagnose my fatigue. It's been about 11 years since I started wearing the CPAP. It takes a little bit getting used to but now I can't sleep without it. Good luck to you, I sure hope it helps.

Hi Moo - thanks for replying. Sounds like you have a little more than fatigue. One thing that people tend to forget is the emotional and psychological side of GBS. I was undergoing treatment for Breast Cancer at the time I contracted my GBS - they are still not sure if one of the treatments triggered the GBS. I was crying all the time and so frustrated with where I was in recovery etc. I ended up seeing a psychologist who has helped me a great deal. Both my doctor and he feel that I have Post Traumatic Stress Disorder as a result of it all. Might be worth talking to your doctors about it. PTSD can occur with any life threatening situation - its not just a military diagnosis. There is a huge psychological side to GBS that needs to be addressed along with the physical. They say it just takes time to recover but no one can tell you how much time and the journey along the way is pretty crap.

Know you are not alone in this. Please take care and as another person on this site says "Stay Strong and keep a Positive Attitude"

Moo said:

I got gbs 31october 2013 was in itc for 6months paralyzed from top to toe . I was put on a vent. Had the ivu treatment when I woke up I couldn't move. 14months I was in hospital. But I cannot walk i!m wheelchair bound. I have started having nightmares and wake up crying. I also have started talking in my sleep. I am on 3inhalers and a nebulizer machine I have been left with a bad chest. I feel so alone, but I don't like talking about it I start crying. Ow I forgot I get fatigued as well

Thanks all for the positive words. I am hoping the CPAP works to help decrease the fatigue, I will find out after the trial. I am amazed at how many people actually use one.

Thank you for your reply deb.

Hi deb, I have still been crying at night it wakes me up ,I hurt my bk yesterday and it kept me awake last night its been very painful. I don't think people who haven't had gbs pain don't understand . when you have pain how much it makes you cry. Xxz

Hi deb just thought I would see how you are. I did something the other day I booked a cruise, me and a friend are going. Hope your OK . moo.

Hi Moo

Slowly getting there - hopefully get my machine soon. That sounds like a wonderful thing to do. I love to cruise. They are so relaxing and help to take your mind off everything. Hope you have a wonderful time. Take care Deb

Moo said:

Hi deb just thought I would see how you are. I did something the other day I booked a cruise, me and a friend are going. Hope your OK . moo.

Hi Moo, I'm going on a cruise too with friends. Never done one. I've been doing so much better for the last week after months of struggling with a relapse. I'm hoping things are turning around for awhile. I'm excited but nervous. I've been in a sick mode for so long that it's hard to step out.

Thank you for being there deb. Are you in England. Iv been left with a bad chest I have too have 3 different inhallers at bedtime iv got scaring at the top of my lungs because I had pneumonia twice. I really carnt wait for my cruise to arrive. Hope you are OK XXX moo.

I'm so sorry to hear of all of the people who have had lung problems. I was lucky in that sense, my problem is still my feet and sometimes my hands. I wish I could find something to wear on my feet that don't hurt. Some days I go through five different shoes and/or slipper and socks in an effort to find anything that won't hurt them. I am my husband's care giver, and I need to be able to move around. So I hope all of you are okay and I hope the C-PAP machines work for all of the people who wear them. -Carole-

Hi Carole my feet as well . my gbs started in my feet first but hasn't left my feet a bit deformed they don't bend or fit my shoes they look like a old ladies feet ?.gbs just dosent leave you with one problem it leaves you with a number. Hope your feet feel better soon. Good job we have each other to talk to.Take care.

I'm thinking about trying swimming again. I don't get out much now. So I'm glad iv got my tablet or I would be really bord

Hi deb ate you bk from your cruise. Hope you had a good time.



Moo said:

Hi Carole my feet as well . my gbs started in my feet first but hasn't left my feet a bit deformed they don't bend or fit my shoes they look like a old ladies feet ?.gbs just dosent leave you with one problem it leaves you with a number. Hope your feet feel better soon. Good job we have each other to talk to.Take care.

Hi deb have you been on your cruise yet, if so how was it. Hope you are feeling better. Take care . moo.

Hi Moo

I never went on a cruise just a local few days away. You were going on one but you didnt say when. I am doing well thanks, will pick up my cpap on thursday and hopefully that will make things even better. Take care. Deb