is this the new normal?
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May 1, 2012 at 1:03 pm
HI All,
Diagnosed with GBS in Dec 2011. Was told at first I was luck in that they found out about before it got too far Only had numbness upto my knees. Have gotten used to the fact i cant feel much in my lower legs walk ok with a cane but still have to move slowly. Taking medication for thge nerve pain, only seems to deaded in can deal with it in legs and arms but when the back goes off I have to stop and just wait for things to calm down. Doctors at hospital released with no restrictions and set me back to work. Lucky for me my keyborad make a lot of noise otherwise I would not be able to tell if I am hitting the keys. Has anyone found anything that has helped with the nerve issues. Nurologist has stated there is mild to moderate dammage in entire body. Seems i got the variant that hits both the coating and the nerve itself. test show some pathways are not working at all. Been told things may come back but I need to get used to the that this is my “new normal”. I know I may not get back to what I was in dec but dont want to continue like this. Any advice would be greatly accepted. -
May 1, 2012 at 3:35 pm
Hey Zag. There is only one thing that I have found that helps. TIME. One day you will find that you are able to do something more easily and then you will find something else that seems to be working better. Eventually you will find more things are working better. There is no magic pill but I can just about guarantee you that you are not at your new normal. If you are not in physical therapy and occupational therapy you should be. Your nerves need time to heal but you need to help by keeping your muscles toned and ready to receive the signals. I found that exercise actually decreased my nerve pain. My legs used to bother me badly in the evening but if I walked a bit at the end of the day the pain lessened. Good luck in your recovery but don’t wait for it to come to you. Go after it.
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May 1, 2012 at 3:48 pm
Thanks for pep talk need that from time to time. As for the thearphy doctors have stated that since I am mobile and can take care of myself that therapy is not needed. All they tell is dont over do it. Every day its a test how far acn I push it today before everything falls in.Can deal with numbnes in legs and have learned to tune out the hands and arms. ( been rough since I spend all day at a keyboard trying to write code.) Main issue I have is when the back starts firing off it all over until that calms down. so far I have not bee able to tell what will kick it off. I know I am “one of the lucky ones” when it comes to this. unforuatly I am not one who likes to sit and wait for something. Hate that I cannot do what I did beforealso hate that with the Doctors all i get are more questions than answers.
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May 1, 2012 at 4:10 pm
csczag,
Do you know what the triggering factor was for you getting gbs? -
May 1, 2012 at 4:17 pm
Axonal damage is not unusual for both GBS and CIDP. It takes much longer to heal than demyelanation, but improvement is possible. Recovery is not necessarily 100%, although it can be. Time will tell. I am still improving very slowly more than one year out of the hospital. My attitude has always been to do the best I can with the hand I was dealt.
I, also, worked at a keyboard for long hours, and used to have serious back pain. Then I bought a good, executive-style chair with a high back and adjustable height and stiffness. It made a huge difference.
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May 1, 2012 at 4:37 pm
Also, I concur with dellpar that you should be getting regular exercize. If you can’t get professional physical therapy, you can still walk regularly and do exercizes at home with minimal equipment such as Thera-bands. But you should have a guide from a physical therapist — the routine will not be the same as a normal program for a healthy person. The newsletter from this foundation published a chart awhile back. The important thing is to find the right level for you. Get enough exercize of the right kind, but don’t overwork yourself.
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May 1, 2012 at 4:44 pm
As to what the kick off of the GBS was its hard to say. Had flu shot 2 week before, had high fever 3 days before, finished shots to protect from Hep c (office first responder) 3 weeks before, Camp cookout with chicken dinner 1 week before. Hit the top 4 possible causes and they stopped asking any questions after that. From what the Doctor stated I created the perfect storm for GBS to hit.
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May 1, 2012 at 5:38 pm
My position is that the specific trigger isn’t worth worrying about, because the most important factor is that you were susceptible to it whereas the great majority of people are not. There is no suspected trigger which causes GBS to develop in most people exposed to it, and no way to identify the trigger for any particular case of GBS, with the exception of Campylobacter, if that pathogen is found.
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May 1, 2012 at 6:28 pm
The way I look at I dont realy care about how or why I got it. Fact is I have it now all I want to know is how do I get rid of it 😆 or how can we make it so i can deal with it better than I am right now. I have a lot of people telling me it was nuts for me to go stait back to work after leaving the hospital ( released on Saturday back to 50 hour week on Monday), but the Dr did not give any work release or need for reduction. Trying to heal, work and just have some kind of life is a lot to deal with right now. Other factor is the stress of trying to find another job since my current one ends in July. all this stress cant be good for the nerves as they are trying to heal.
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May 1, 2012 at 7:00 pm
if you potentially got it from a vaccination you possible be compensated by the government. The dollar amt can be significant
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May 1, 2012 at 7:23 pm
Haynes if the Doctors cant tell how I got it I dont think I would have a case against anyone. They could easily blame it on one of the other factors. Since no one really knows what causes GBS its hard to prove anything.
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May 2, 2012 at 5:55 am
csczag -I, too, have the axonal variant of GBS. Mine started in Feb 2011. Different than yours, mine lead to paralysis with ventilator support required and months in the hospital. At my most recent neuro appointment, my doctor said it could be 10 years before the numbness in my feet is improved. This was very depressing to hear. The only good news is that I have incredible functioning given the lack of response in my nerves (still). Recovery seems so slow, especially with so much damage to the axons, that it does seem like a new “normal”. I welcome changes to that normal but am becoming accustomed to existing pain, fatigue, numbness, and balance issues that come with this syndrome.
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