New and just starting life at home

If you have too much trouble with backsliding, then you could possibly have CIDP, the chronic form of GBS. But you are still so early in your GBS, many don’t even peak with getting worse until after 4 weeks. I would look at recovery in terms of months, not days or weeks. At least your upper body is doing well strengthwise. You just need to be patient, believe me I know how hard that can be.

Hi Claire, Welcome to the board. There is a lot of information posted and help for our questions here. This is a great family to give support.
Most sickness experience has short recovery compared to GBS/CIDP. It is true that some recover very rapidly from GBS but there are many on this site where that has not been the case. Some have said that GBS — Getting Better Slowly. While each case is different, all need to listen to the messages our body sends us. Take care and my you be blessed to recover well.

Hi Claire, welcome and glad that you found us. You are really early into this illness and you are trying to do way to much. You really need to take it easy and see what you are able to do and still be able to recover from in 12-18 hours. We all have experience with backsliding because we also have had to find out what we can do and recover from. I am 3 years plus since my original onset of CIDP, and I am still learning what I can and can’t do.

I am not trying to scare you I just hope you listen to your body. Take care and ask lots of questions.

Jerimy

[quote=santafe]First I want to thank all of you for being on this board. It has really helped.
I am a wife and mom of elementary school boys and normally an athlete. I was diagnosed on Dec 10th, spent 4 days in ICU with the wonder drug avoided the vent barely and was in rehap until Tues when I returned home.
I have had progress and backsliding. Last week my core was so strong I could easily lift myself with my arms and do 300 crunches daily (still no functioning in my lower legs or grip strength in the hands). By Friday afternoon, I had a low grade fever and couldn’t turn over by myself. I can now turn over, type a bit, but can’t sit up tall, use my arms well, or even sit up on my own. Thank goodness for my loving and helpful family and friends.
Has anyone else had experience with backsliding?
Many thanks in advance,
Claire in Santa Fe[/quote]

Hi Claire, welcome to the family. as jerimy and others have said, you are pushing yourself way too hard, you will continue to backslide until you take it easy and get alot of rest. It is really hard for us moms and others to listen to what our bodies are telling us, but if you want to recover faster you will have to just listen to your inner voice and stop and rest often. i have the relapsing/remitting type of gbs(chronic) and have been paralyzed over 10 times since aug 05, yes i have 2 kids that i always want to do things with also, house work and life that is calling me, but if i over do things and don’t rest enough i can go down within minutes to hours. it isn’t fun, and it isn’t easy trying to find your limits when you can’t feel things until its too late, so please take time to rest and you will see you might have a good chance of recovering rapidly. i have had rapid recovery like you are experiencing, i just seem to take advantage of it and one thing leads to another and before i know it i’m down again, its not worth it to push the envelope soo fast. please ask all the questions you have or just vent or tell us your little BIG recovery news.take care and please get plenty of rest.

Welcome to our networking family. Sorry you have to join us but use this site to your advantage. You will read and we can warn but being human as all of us are, you will have to figure your body out for yourself. I can tell you that you will have the fatigue as a residual but it gets better slowly you will feel you are doing better. Then we have a tendancy to over do it on those good days and slide right back to a level that reminds us to listen to our bodies. Build up an exercise program. At first work on stretching and range of motion and all that easy stuff. For our bodies it might not seem like much. We still use our memory to tell us what we used to be able to do. Now we have to again find a comfortable place to start over and add to as often as you feel you are getting the amount of sleep your body needs to rest. Remember you have responsibilitys and I am sure you are keeping a busy schedule with children around. Housework and routines that we can not drop. Tend to those and get help if you need to….the rest will come! You will find soon enough we will look good to others on the outside and they will tend to back off from helping us. They will not see the mixture that is going on inside as our bodies heal slowly. Relaspes are not pleasant but they serve a good purpose to remind you that you are going to have to put YOU first! Are you receiving any kind of rehab? Welcome HOME!

Hi Claire,

I will echo the others who have said that you are doing too much exercise too early. Overworking causes setbacks and can delay your recovery.

Muscles need some work, but your nerves need a lot of rest in order to heal. Take it easy.

Suzanne

taryn,

neither ivig nor pp can heal. each has the possibility of stopping further damage. and yes, your immune system may stop producing the bad gbs antibodies all on its own. in either of the above 3 cases healing is the same. but pls remember that the faster the antibodies are stopped the better & faster the healing process will be. take care. be well.

gene gbs 8-99
in numbers there is strength

hi claire & welcome,

more than likely you are doing way too much. as said by jerimy, you must recover in 12 to 18 hours from an exercise or it is too much. listen to your body. yours is telling you you way over did it. take care. be well.

gene gbs 8-99
in numbers there is strength

Claire,

You have to remember, as I had to constantly remind people around me when I came home, that you are still ‘sick’—you are just not sick enough to be in the hospital.

The other thing that I battled with once home was the house was always my responsibility. Guilt can become huge STRESS. Stress is energy consuming. You and others have to remember that in the hospital just about everything was done for you (laundry, cooking, cleaning, etc…) by people who’s job it was. You have to learn to let things go and not feel guilty about it.

Energy management is a must and rest can never be stressed enough. Even if you don’t feel tired you need to rest. By the time you feel tired it is too late and it will take much longer to recover. Not only do you have to watch your physical activity you have to be aware of your mental activity, it can be just as exhausting.

As in any recovery you are going to have good days and bad days. One step forward and two steps back. You are in control of this now and will have to learn when enough is enough. You are still in the early stages of your recovery.

The best thing that you have done is finding this website. There is such a wealth of information from everyone here. We have all “been there and done that” and know EXACTLY what you are going thru.

I wish you the best.

Angela

Angela I love your post it was great! Great Advice and well written! I like this phrase you used too! I have heard of “Stress Management” but your post about: “[B]Energy management[/B] is a must and rest can never be stressed enough. Even if you don’t feel tired you need to rest. By the time you feel tired it is too late and it will take much longer to recover. Not only do you have to watch your physical activity you have to be aware of your mental activity, it can be just as exhausting.” Will be quoted often too! 🙂