hand pain and swelling

    • Anonymous
      May 3, 2009 at 10:09 pm

      I was wondering if anyone had experience with hand pain and swelling during recovery? My mom has GBS/MF, which started the beginning of January. She is now in sub-acute rehab and working hard to regain movement. Hand pain and swelling are causing a huge problem. She is on Lyrica, 150mg per day, Fentanyl patch – not sure of dose since this was just started, 30 mg Celexa, 3000mg DHA and Percoset for break through pain. I know that the thought of her hands hurting causes great anxiety to the point of keeping her from even trying to move them. The anxiety causes more pain, etc. The problem with so many pain meds is that they cause side effects which can bring on more pain!!!

      This is so frustrating. Any feedback would be appreciated. Has anyone used beta blockers for pain?

      Thank you!

    • Anonymous
      May 4, 2009 at 5:24 am

      Hi Katie! I don’t have GBS but am pretty someone here will be able to help with your question. I will say prayers for your mom. I have the CIDP issue am my hand and feet both feel like I touched the stove with a frying pan. Hurts so bad at times where I feel like screaming. So I do feel your mom’s frustration and hope that she can pull through this and somehow get better. I have heard that GBS pain is far more worse than CIDP when a GBS patient first gets this. And it takes time for that pain to finally ease up. Some patients keep pain even those it does ease up some while others get back to normal and never have any problems. Each patient is different. But I wish you both my very best! Hugs
      Linda H

    • Anonymous
      May 4, 2009 at 8:11 am


      I had trouble with the hand swelling and pain for a long time after GBS finally released its grip on me. Spent 8 months in rehab in hospital and remember the pain being so bad that I would put my hands on the cool metal bars on the side rails of the hospital bed trying to get relief. The only pain meds that I ever got was Motrin during the day and a Darvaset in the evening. This was over 20 years ago and I am sure that things have changed since then when it comes to pain management.

      The swelling & pain went away when I was finally able to get the use on my hands back a little. The more I used my hands the less swelling and pain I had, even though it hurt bad in therapy. It is important for your mother to keep up with the therapy and to keep her joints and tendons loose in her hands as much as possible. So when the muscles start getting the signals to move from her nerves she will be able to move without pain. The pain of loosening her fingers up after they lock up will be much worse if she neglects moving.

      This is just my opinion and, of course, she should listen to her therapist. I wish her the best.


    • Anonymous
      May 4, 2009 at 11:40 am

      Hello Katie
      I had just the trouble you described. Keeping my hands elevated was a big help. That meant sleeping with my hands (arms) on big pillows – this in addition to pain meds & physical therapy. While setting in a chair a pillow in the lap for elevation was used, too. It worked! Try it. A nurse suggested this simple solution for me. Good luck.

    • Anonymous
      June 5, 2009 at 3:43 pm

      Hi Katie,
      I had and still have pain in my hands and feet. Also my extremities feel like they are freezing cold at times. Your mother must move her hands. She will probably lose a lot of muscle in her hands either way, but she can only regain function if she moves them. At first all I could do was pretend to play the piano until one day my fingers actually moved. Even if it hurts, open and close the hands, do the OT. If I can help answer questions, let me know. Your family is in my prayers. Good luck.

    • Anonymous
      June 13, 2009 at 2:09 pm

      I get lots of cramps now in my hands and fingers, as well as feet.
      I have to be very careful not to let my hands, arms, feet or legs get cold, because then the pain and tingling is constant, and the cramps get pretty bad. Same thing if the grass is wet outside, and my shoes or socks get damp spots. Within minutes, I get cramps, and the area is icy cold for hours, even days till things get better again. Dry and warm is the rule for me, and if I forget that, I suffer for it.
      I usually wear long pants and long-sleeved sweaters & tops and am altering all my nightgowns to have long-sleeves with ruffles draping over the hands, just because if I stick my hands out of the blankets at night, they are aching and tingling when I wake up.
      And in public, I don’t care if I look more dressed that other people do, I have to dress warmly to be comfortable, just to be able to manage this better.
      And there will always be someone who just got out of their car, and is wearing a T-shirt, and will look at me and say…”Oh, but it’s such a warm day”.

    • Anonymous
      June 13, 2009 at 3:05 pm

      I had bad swelling in my hands in 2007 I thought I had Renaud’s disease. But I didn’t I had Tendinitis. The pain was so bad in my hands I had to wear light gloves at times because of the cold and the pain I was having in my hands.

      That summer I was losing my hearing so I was given 2 weeks at a high dose of Prednisone and that took some of the swelling out of my hands. I wanted more prednisone then but nobody wanted to give it to me. I am back on prednisone but a lower dose because again I am losing my hearing. I go see my Neurologist on July 2nd and will find out if my CIDP is getting worse.
      So I now can assume that the swelling in my hands my hearing lost is all connected to my CIDP.