Fatigue Question

jasper, give in to the fatigue & rest. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi,
I am almost 7 years post GBS. Some days start slower than others, and if I do too much or don’t take a break once and a while I get Very exhausted. Getting Better Slowly is the first step, then continue to pace yourself. Doing too much too fast, even years later, can cause frustrating exhaustion.

Judy

Fatigue appears to be [I]the[/I] most common lasting residual. Each person has to find their own level of activity vs rest. Unfortunately that can change from day to day 😮 And most of us find that frustrating. It is difficult to plan to enjoy an activity because by the time it comes around, you may not be able to 🙁

We all wish for a magic pill but alas more rest is the Rx!

fatigue…ugh. I am 3 years post gbs and for the last couple of weeks i am totally exhuasted. all i want to do is sleep. sometimes i can’t sleep at night but then want to sleep all day and then sometimes i sleep all night and still sleep all day. i am almost craving a whole week in bed where i don’t have to get up for anything. i absolutely hate this feeling. i don’t think i am overdoing it but family and friends say i am. if anything i feel like i’m not doing enough. but fatigue has definitely set in big time.

Hi Stormy,

I’m 2 yrs 2 months post GBS and I too experience tiredness daily. I find the max I can go is 9 hours and then I need a 2hr rest. I tend to be more awake at night and sleep during the day. This is hard for my family. I find I need 9 to 10 hours of sleep before I can function. I hate this lifestyle because I used to be a go go go person. I too find it hard to plan activities because I’m afraid of being too tired. If I make a long trip somewhere I have to rest when I get there before I do anything. I think it is hard for others to understand what we go through. I’m 48 almost 49 and have three teens at home and I dont want to miss out. I still have nerve damage in my feet and they tingle constantly. Im on Neurotin and my doctor said to increase the dosage because Neurotin aids in healing. Is that so anyone? When I work which is sub teaching I’m up at 6:30 am and back to bed by 3:00sh when I get home. I wonder how long I can live like this. How do those who have had these residuals keep going and stay positive.

Blessings
Caroline

caroline,

neurontin can stop/decrease neurological pain. w/o pain your body is under less strain & therefore many believe, including myself, that the body can heal itself faster. take care. be well.

gene gbs 8-99
in numbers there is strength

You asked how can people with these types of residuals keep going on? Easy, one really has no choice. I am almost 5 years out, having residuals a lot worse than you do, but it is the fatigue that I hate the most. I am always having to explain to my family as well that I am just too tired to do things.

Having siad that, it seems that this type of fatigue comes with most autoimmune illnesses, I don’t really understand why. But it does help to remember all of the illnesses that are a lot worse than this one is. No a whole lot of consolation really, but we have no choice now, do we?

It is very hard to live with residuals. I try to build my life around what I have and not what I’ve lost. I take one day at a time-for me fatigue is bad but the residual pain is worse-and if I have a good day with little pain I enjoy the things I can do-the work I can do, the books I can read etc. If the pain is bad I take a percocet and try to enjoy lying around and reading in bed or watching a video. Whatever our limits are there is much to love and enjoy, but as long as we hang on to what we used to be able to do we can only have frustration. I have really learned so much about myself going through this and about compassion for others and I have learned that much of what I thought I had to do was just my ego. It probably sounds corny but every day has its own treasures, even if there are small ones. Jeff

Good morning Cariline. I have GBS and was blessed with a mild attack. My feet are numb. I am thankful for every day that I see improvement. I think about the ones that had it alot worse than I did. I am thankful that I can walk with and without my cane. I accept life and give thanks for the gifts that have been given to me. and above all I am thankful to be alive.
In your letter all I saw was I nothing you were thankful for, I have said a prayer for you and that you will be able to see just how blessed you have been May Gods blessing be with you always

Hi Pam H – you couldn’t have described how I feel after 7 years any better if I had written it myself – I’m just grateful that I can get around unassisted and take part in the day if not fully. To your reply, I say AMEN!

Well, I don’t aways stay positive, believe me, and sometimes you just need to vent. So, good for you for doing so!

What does help however is being kind to myself even if I hate myself for being the way I am, or doing something uplifting like making myself a nice meal (or a cup of tea, if that is all I can manage), even if I feel there is no point and nothing will help me feel any better. These things do help:).

I give lots of thanks that I can sit on the pot and wipe my own butt. It was terrible when I was bed-ridden and had to wear pampers.

Jasper,

I had GBS Jan 06 and could not walk for a while. Its was a life altering experience to be taken in a wheelchair to a rehab pool.

Fatigue was the bigest hurdle for me over the past year and I have had to listen to my body when it needed rest.

However, I dissagree with other posts that rest is the only answer. I think its a combination of rest AND regular excercise. I bought a pushbike and started cycling and combined this with meditation as the mental hurdle is tough and I needed assistance. I could not have done this without positive thinking and being motivated to get my life back. For this I used a hypnosis CD to treat memory loss, and focused by meditating about getting better.

I still need 9 – 10 hours sleep a day and regularly have 2 hour day naps, but excercise everyday and have found my core strength returning. Next week I am in a mini triathlon 400m swim, 10 K cycle, 4 km run. I dont expect to win it, just hope to finish it as I’ve never done one before. Over the past few weeks, I find I can complete my excercise and not collapse on the lounge as I am becomming fitter. It hasn’t been easy and I’ve had to really push myself, but have always listened to my body and only slowly built up my stamina over time.

My answer to fatigue has been excercise and increased mental discipline. Hope there is a light towards the end of your Dads tunnel. Stay focused and find excercise that is enjoyable.

Gibba.

It is difficult to answer a question about what to do about fatigue, or how to stay positive when our backgrounds are so different. Some of us are training for a thriatlon, while others are just grateful they can wipe their own eh…behind. In the first months or years after GBS your approach to improvement and your outlook on life may be very different from someone who is 20 years or more post GBS and having relapses…

I think everyone agrees there has to be some balance between exercise and rest, but again, what’s good for one person may not be good for another. After having had GBS I have never been able to run, let alone train for a thriatlon…
The resting part is stressed because many of us have experienced doing reasonably well while exercising, but were having problems afterwards. Sometimes the day after, sometimes really serious problems years after. The problem is: you can train your muscles, but you can do serious damage to your nerves while doing so. Focusing on training hard unfortunately isn’t the answer to getting better, at least not for most of us.

I do agree that meditation helps a lot. My experience is it helps me to listen to my body and it gives me rest, and I need rest!

eva, well said!. take care. be well.

gene gbs 8-99
in numbers there is strength

Eva,

Agree we all have varying degrees of GBS and after effects. For calrity, I can offer to others a description of the extent that I had GBS, a Miller Fischer strain.

Day one Jan 06, started with leg weakness and pins and needles. Thought it was DVT so had early medical attention as I had 24 hours on a plane the day before so was thought to have GBS but was not convinced as had MRI to rule out MS.

Day 2 my right eye could not focus properly and I had pins and needles in my hands. I had a terrible feeling of drunkeness. My mouth was numb and toungue felt fat. My speech was slowed and slurred. The doctor tested me by looking at my pupils and testing my reflexes. I had no refelxes in knees or elbows.

Day 3 began Introvenous injections of white blood cells. Not sure what its called medically. This was a 4 hour treatment and went for 5 days.

Day 4 – 5 I was feeling horrible and had lost the use of my right hand and had real difficulty walking. Could only go 50 meters with double vision and would need someone holding me. I was 37 years old with three kids at home including a 3 month old with special needs. This was the core of my motivation.

I never lost conciousness and never needed respiratory help. Its a shame there is not a universal scale we could measure to what extent we had GBS. I suppose this forum is as close as we can get.

From day 5 on, I was in the pool which I found excellent. My PT also gave me a stress ball to play with to tune my fine motor skills. I’d roll it between my fingers of the hand that had about 5% use. I remember not being able to hold a knife. My doctors told me I was very motivated to get better as I would excercise 5 mins every few hours.

Three weeks on I returned to work. I just wanted my life back. I took it easy and work were very understanding.

First three months of work were hard. There were stages where I would listen to people and hear words but could not understand what they were saying. I had memory loss and on many occasions had to bluff my way through this. I could not run as I would have fallen over as my toes would not touch the ground properly on my right side, felt like I’d need to trip over. I did no excercise during this period.

At around the 6 – 9 month mark I remember gardening for a few hours. It was overgrown and no one had touched it for a while. The next two days I was in bed with fatigue and slept most of it. I started meditiation around here as I realised there was quite a path to recovery.

PT gave me some mid section excercises with an excersise ball. These were low impact, more balance excercises which I found to be tremendous benefit.

My turning point was dec 06 where I bought pushbikes for my kids. I started of a short 15 min lesiurly ride. I initially did it for enjoyment not excercise, but noticed I got a passion for it.

This was very different to my collapse after gardening as one was play and the other was work. I began cycling at a lesuirley pace daily, probably 20mins /day for the first . I’d also find myself tired and needing to sleep shortly afterwards.

I’m now up to 50 mins/ day on the bike which is still at a lesuirely pace for the majority of it. I still need to rest for an hour when I finish. I also load up on multi vitamans and good food.

My current residual effects are:
– Right eye still not back to 20/20 ( not sure if this will return)
– Right ear does not work well on the phone
– My ankles feel weak
– I get lots of muscle twitches in my legs and my right eye twitches when I’m tired.
– I still need lots of rest of feel fatigued
– My memory is still not as good as it was.
– My reflexes are back

I suppose in summary, we need to listen to our body, thats for sure. But my point is that excercise for my scenario has been as important as rest in my battle of fatigue and I physically feel like I have made some progress.

I hope this helps.