AnonymousNovember 27, 2006 at 12:02 pm
my husband is 8 months out from the onset of GBS – he had a very mild case and is back at work full time. He gets quite tired still and we can handle that but I see other other things that worry me. He has developed several nervous habits (ie smelling his fingers, constantly rubbing his fingers on a cup or glass) This concerns me as he had 2 panic attacks in the hospital during his IVIG therapy and they were VERY scary.
He also has little interest in doing anything with other people even our family he just comes home from work and sits and watches TV
Does this sound like anything that anyone else has experienced or seen? Could it be a physical result of the GBS or an emotional difficulty dealing with the long term effects of the disease?
AnonymousNovember 27, 2006 at 12:33 pm
Hello Pat! I think you do have the right to be a Worried Wife. But because GBS also requires not just the physical healing of the mylin of the nerves which takes years to completely heal. It also does create the frustration from being tired. I don’t use that word with my GBS I use exhausted. I am drained. So not being active in the evenings after working full time during the day could be just from the GBS. Depression is also from that same frustration. Mentally you are wanting to contribute to the family but physically you are not able. Slowly ease him back into the family circle and get the children to ask him to join in. I might add that just watching children play or an action movie can be over stimulating and tire a GBS person out. Paying bills or working under stress of any kind during the day will wipe you out.
After only 8 months I think he is doing great! What does his doctors say? As far as the nerveous habits that maybe from the sensations he is getting in his hands and feet. You touch a terry cloth towel to dry off your hands and it feels like steel wool. You might get a wet sensation in your feet if you step on a bare floor. Step on a dime in the rug and it feels like the ceiling is leaking or the dog just peed on the rug. Touching the rim of a smooth cup or glass might give you no sensation. You can see the rim and see it is smooth but you can not feel it. Touch silk or the sheet and you can not feel it in your hand but you can see you are holding it. I am into my 13th month and I still can not feel paper money. I have a hard time counting change. My muscles vibrate as the nerves waste energy miss firing to the point I am not able to feel my cell phone vibrate. Noise can trigger this vibrating also. When you see him doing these behaviors you might just ask. Does it feel funny? I would bet he is still feeling some of these residuals. I put my finger tips up to my lips or up to my nose which might look like I am smelling them. But I am touching them as they tingle it seems to calm them down. The warmth of my breath seems to help also, but not when I put heat of them. I hold my fingers with the other hand. I almost feel like when I put my finger tips to my lip I should be able to feel them tingle. It is annoying to say the least. Some times they don’t tingle they feel like the skin is burning. Some times they itch so bad you want to remove the skin!
See what others say to your message and remember to open up the lines of communication.
Remember we are always here to try and help understand this illness!
AnonymousNovember 29, 2006 at 10:16 pm
What is great about this forum is that you read about how someone is feeling or what they are experiencing at different stages and it took some of the worry out of my recovery for me! Even the tiny feelings they experienced and shared. Like the past three days I have had no tingling in my fingers and toes. The are still some what numb but the needles and pins or tingling is gone. It is nice to have a break from little things like that. It was down to the last two knuckles on my fingers and only envolved my toes. Not having the distraction from something that is not really a pain that would require meds, was such a gift! It gave me some sense of getting better! I have had it happen before for a few days at a time, but each time I enjoy the relief of not having to deal with it. IT GIVES ME HOPE that it will completely go away some day! I am patient and can wait for that time to happen! Some days I can stand there and the the full sink of dishes done. Other times I have to to it in shifts. Causes back pain. I am working hard to strenghten my abs and hips and back to get past that kind of pain. It is getting better slowly. When I can stand there and do a sink full of dishes or get a chore done around the house…..I see it as a GIFT! Each day I get a different little GIFT here and there. Makes me feel like I have accomplished something and that I am getting better! Even at 13 months into this I still pace myself. If I do over do it I am reminded the next few days to go slow I am still healing. As I read from the forum I am about two months behind some of the others on here and what cramp or twitch they are experiencing. When it happens I am thrilled……weird to celebrate over a cramp or electrical like pain in a finger or leg or foot! For those GIFTS I say “Thank you Lord!” May he bless us all in every way! Give us strenght from which we can share and comfort each other!
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