AnonymousNovember 6, 2006 at 9:50 am
For better or worse, you are not alone in suffering from tremblings when you want to use the muscles in your fingers. It is called intention tremors and can affect your wrists and arms too as it did in my case, and also probably your legs. My tremors started in the index and middle finger of my left hand and successively spread to the rest of my fingers and then up my arms as the demyelinization progressed. It was extremely annoying, but I had a lot of ways and means to help my situation, like drinking through a straw, eating pre-cut food with a spoon and using what I hope you call a “wrist-orthosis” too, to keep my wrist from twitching and throwing things all over the place.
When I got the correct diagnosis and hence the correct treatment, the myelin slowly but surely has been growing back and the tremors, though still there, have been remarkably reduced.
Hoping for the best for you 🙂
AnonymousNovember 7, 2006 at 7:04 pm
The so-called intention tremors in my hands seem to come and go, perhaps they are up and down depending on how long it’s been after IVIG treatments. For a while I would stretch out my hands and they would visibly tremble and pushing the buttons on the TV remote would be a challenge. Other times – like now – the hands are fairly steady. There is only a slight tremble when I push the button on the mouse. There also have been times when I felt a tremble all over inside my upper body. Not very pleasant.
It’s all very strange.
AnonymousNovember 7, 2006 at 8:49 pm
I think the trembling is very common. It comes and goes in its intensity for me. Right now it is making it hard to type. I also notice that whenever I am experiencing any sort of intense emotional feelings the tremors are worse. Alot worse. Some guy wrecked his car into mine the other day, and I couldn’t even manage to dial the police on my cell.
One funny thing, I was at Wal-mart looking for a car charger for my cell phone, and had to ask the electronic dept. guy if the charger was compatable with my phone…so I’m standing there, asking my question, charger in left hand…phone in right when i began to tremble badly. Both devices which I was holding flew up into the air and landed at our feet…He gave me quite an odd look…I thought it was amusing though afterwards.
AnonymousNovember 8, 2006 at 10:42 pm
I too have hand tremors. Sometimes it takes two hands to sigm my name or write a card. Other times it is rather calm. I find soup and cereal difficult to eat at times. Sounds like Allug has a very bad case of it. But the best part is we find remedies. We just can’t let these things beat us.
AnonymousNovember 8, 2006 at 11:56 pm
I have small tremors in my hands and they move from finger to finger. Right now they are only in my ring fingers of each hand. I see them when I spread my fingers. I have been doing exercises and I notice when I concentrate on a particular muscle in lets say my thumb because I was getting cramps there. I exercised that area to make it stronger. Once I get that tiny muscle stronger I can say good bye to the tremors. Remember mine are only little wiggles. I do still have that vibrations and when I have something happen and have to ask a sales person a question or people are yelling at each other like after a car accident. I have to get out of there I start to quiver. Noises really set my nerves off too! But that is getting better in the past few months. Kids screaming or yelling and jumping around also set them off. I have not avoided those things but back off a little and sit there trying to get used to them and the problem. Like now I don’t sit in the playground on the bench I sit on the outside of the fence around the playground. Then slowly introduced myself back into the area with good results. Last weekend I went into the pits at the races around all the noise! I did very well and was able to walk to watch the races. We did well we come in 16 out of 42 cars. I was able to move up from the first few rows in the bleachers too! But that is my fear of heights. Still paced myself the whole day in the COLD and took a nap as soon as we got back to the car. I am getting better slowly!
Using the water for resistance in the pool has really given strenght to those muscles in my hips and legs and back and shoulders and arms and especially my hands. I have always forgot to kick when in the water. I float and just tread water with my hands for stability. Since doing those upper body exercises with every tiny muscle I can think of. I am now about to move my arms in a very graceful motion…..the range of motion is coming back in all my joints. Be patient with your body but don’t give up!
AnonymousNovember 9, 2006 at 11:50 am
I used to have terrible hand tremors when I was on steroid infusions for two years, but now they mostly tremble when they are overworked or tired. I also get terrible cramps in my hands when I overdo it, especially during water aerobics. But I have been going to a class twice a week since May of 2005 & find I really need it for my range of motion & just to get some exercise. It does wear me out, but it is also a social thing, as I am not working anymore. But I do treat myself to the hot tub afterwards (mostly to visit with other people), & I find it does drain the strength from my muscles. But after I get home I do try & take a nap.
AnonymousNovember 9, 2006 at 4:24 pm
I do remember a post in the last year that hot tubs are a NO NO! How long after you have GBS is a good time to rethink about going back into the hot tub?
I agree it does help with no muscle pain after exercises and it does relax all your muscles. I take a nap just due to the exercise and being relaxed. A short nap and I am up and able to function much better. I get up without any stiffness…..which is a great way to wake up!
Glad this works for your too Pam! I do some kind of water exercises each day and then only do the circuit of machines every other day to let the muscles heal or rest! I am in an extensive exercise program that keeps me moving and building up my stamina slowly. Pain free!
AnonymousNovember 11, 2006 at 8:30 am
I just began developing tremors in my hands and fingers a few months ago. The level of intensity seems to vary – probably due to level of activity. Plus, fingers begin cramping and terrible pain. Difficult to type. Just had an ivig treatment yesterday so i’m waiting to see if it helps.
hot tubs? i thought those were a no-no! Of course, there are zillions of things that are no-nos for us but isn’t great to sometimes just throw caution to the winde and do it anyway! at my gym i like the steam room and the dry sauna. both are sort of deadly for me but they just make my muscles feel so great even though i’m absolutely fatigued afterward.
AnonymousNovember 11, 2006 at 12:58 pm
Dear Meadow and all,
Have you all had nerve biopsy’s? I was diagnosed with CIDP one year ago. Last week my doctor said he would like me to have one so we can nail down the diagnosis. I had 7 rounds of IVIG and it really didn’t do much. I stopped it for 2 months and am trying to decide if I should go back to it.
One of the problems I have is very high inflammation counts on my blood tests. Despite the IVIG, prednisone, Embrel shots, etc. nothing has worked. My doctor is really at a loss and so am I. Do any of you have a problem with inflammation?
Would you guys have the nerve biopsy? I guess it gives you a pretty good idea if you have CIDP. Any info would sure help.
By the way, I used to live in Overland Park, KS. That’s very close to Olathe where Meadow lives. Now I live in LA. YUCK!
Well, thanks so much.
AnonymousNovember 11, 2006 at 1:12 pm
i just started my water classes. i so love it. i too got in the hot tub afterwards to relax the muscles. i was nervous at first because i had heard that was a no-no, but i sat there for less than 15 minutes and loved it. i come home and take a nap, it seems the relaxing of the muscles makes for an awesome nap. this is the only time i get out of the house and i am looking forward to it 3 days a week. it has made me a happier person, so my family tells me. i feel as though i am accomplishing something that is important for me.
take care and easy swimming!
You must be logged in to reply to this topic.