Numbness and Pain discussion with my doctor

    • February 14, 2011 at 11:08 am

      My case : 2 years and counting. Questions and answers with my doctor for sharing with the GBS community.

      Numbness and pain are different. Agreed. So what causes the numbness (the feeling in your legs and feet as being asleep. Answer: nerve damage. Can medicine help. Answer: no. Medicine helps with pain. You have to find the right dosage for you.

      Numbness for me is described as follows: Before you got sick you can remember your leg falling asleep as can happen to everyone. When you first put that foot down on the ground you don’t know quite where it is??? But when it starts to wear off you start to feel a numbness with pins and needles, but you know where your foot is. I am locked in at that level. The numbness and pins and needles never fully resides. And never has in the past two years. The feet, ankles and lower legs never come down to zero normal. This will not happen until major nerve healing occurs.

      Share with me your experience. Do you still have that numbness with pins and needles? I have it in the hands as well, but to a much lesser degree.

    • Anonymous
      February 14, 2011 at 11:52 am

      I am a year and month out. My feet are still numb. I know or I have learned to know the feeling that my feet have hit the ground but if I step on a rock, garden hose, dog poop etc I really don’t feel it and I stumble a little. I have a diffricult time make a 90 or 180 degree turn and have to look at the ground to accomplishment this. I can walk a straight line fine but my eyes are now on the ground in front of me to watch for, holes, rocks or bumps. I have difficulty walking on and standinging on a slope. On a slope when standing still I am always looking for something to hold on to. My wife feel that I should take my cane when out in public. A unintentioned bump or if someone stops quickly in front of me causes me to stumble. I have a problem using the cane. I was so proud of the day I stopped using it so I have not taken her advise.
      Now, I am not complaining you asked and I responded. I am proud of what I have accoplished so far and as far as I know I am winning DU olympics with an 18 inch standing broad jump. I am not working, I have tried, went back fulltime and became a living zombie. I still need a couple of naps or rest a day but you know. I AM OK and I HOPE YOU ARE TOO.

    • Anonymous
      February 14, 2011 at 12:52 pm

      [QUOTE=Hedley LaMarr]My case :

      Share with me your experience. Do you still have that numbness with pins and needles? I have it in the hands as well, but to a much lesser degree.[/QUOTE]

      Hi Hedley,

      At times, I don’t want to respond to these type of questions as there are so many variables when dealing with GBS or CIDP and I don’t want anyone to feel their experience will be the same as mine.

      I’m almost 20 years post GBS and though the numbness and tingling subsided a great deal, it has never left, I got used to it. Sadly, as I age the frequency of the numbness, tingling, pins and needles have increased. It could be many reasons for this; I’m overweight and though I exercise, I’m not very flexible and I’m limited with the exercises I can do.

      Like Harry, I have to watch every little bump in the floor, rocks, dips, etc., or I will fall on my face (or rear) and I use a cane. I finally started wearing an AFO for my right foot as I was damaging my back severely by doing the “high step” to prevent myself from falling (really bad foot drop).

      Hope this helped and didn’t discourage as your experiences may be different.

      Take care,


      Btw, I rarely have the tingling and numbness in my hands which is a blessing as I type for a living.

    • Anonymous
      February 14, 2011 at 5:32 pm

      Hi Hedley
      I started having pins and needles, numbness and severe pain in my both hands 3 months back. Initially i never noticed any major weakness and my GP told me that this is carpel tunnel syndrome( a nerve compression) and send me to neurologist for nerve conduction studies. There i was diagnosed with CIDP and within a week same numbness and tingling started in my both feet which is still there and if weather is cold it is aggravated.
      Now on immunosuppressants . Tingling in hands is decreased but at the cost of complete numbness in fingertips specially. Got my fingers burnt when i picked up a hot plate from oven a few days back. So you have to adjust to it and i am still trying to.its extremely difficult for me to touch even a cold object or take anything out of freezer– the tingling strikes back with maximum fury.
      My family is full of doctors and my sis in law who is intensivist even asked me to discuss about gabapentin with my neurologist but i am too afraid of its side effects.
      So still trying to cope with numbness and sleepy hands which is now becoming a daily routine. I think we are in same boats.

    • February 15, 2011 at 5:56 am

      Harry, Tina, Adnan: Thank you for sharing. Sometimes I feel isolated when it comes to knowledge about my symptoms. Harry, I have problems with declines on the street and it is too dangerous for me with just the cane because I live on a San Francisco type hill which is not too severe but yet a risk. So if I travel alone I leave the house with the walker for maximum safety.
      Tina, thank you for sharing. I wear AFO’s on both legs because of severe drop foot. This is the most distressing part of the illness. It gets me down. I lay awake wondering if they will ever come back or if I will have them the rest of my life.
      Adnan, thank you also….I take Gabapentin although I have no real pain. I went down to just 800 mg per day from 2400mg and felt no different. My doctor allowed me to raise it to 1800 per day. I am experimenting. I wanted to go down to zero and stop, but while I’m still doing physical therapy, I decided to continue because I do sometimes get pain, but it’s rare. I have no side effects from the medicine to speak of. Some day I will wean off altogether to see what happens.

    • Anonymous
      February 15, 2011 at 8:36 am

      Just rereading my post. I wish there was spell check for the forum. Another symptom of GBS for me is brain fog, and sometimes I think I have hit a key and I haven’t or I hit it twice. I’m sure you all understood what I wrote here but some of post make me feel like I am not smarter then a third grader.

    • Anonymous
      February 15, 2011 at 9:22 am

      Hi Harry,

      I would hope anyone posting or reading isn’t overly concerned about spelling, etc. I didn’t notice anything off about your post. We’re just here to share and learn.

      I understand and recognize brain fog. I’m a paralegal (scary, right?) and because of the brain fog, I proofread my work a gazillion times and still do a much better job than the majority of my co-workers. So, though I’d like to put my best foot forward when corresponding on non-work related issues, sometimes I’m already tapped out.

      Have a wonderful day!!! 🙂