• March 24, 2009 at 7:01 pm

      Got a ?

      Lately I have been achy. My hands…the outside pinky area and wrist, even palm….ache. They do not hurt to touch, nor are they swollen. It doesnt hurt to move them either. But, they ache severly. It is severe while I sleep and wakes me often, slow throb/pulse type ache during the day. I have tried Motrin, Aleve, Advil, Tylenol and nothing helps. Also the elbow area (not the elbow itself though, more like a muscle pain) of my left arm hurts. If I lift something a little heavy (what isnt heavy these days?) it really hurts. I havent seen a dr because of $. Should I be concerned or just ride it out as a residual. Its just a new one to complain about. Oh and occassionally my feet will hurt in the same pattern. Outside, ankle, sole.

    • Anonymous
      March 25, 2009 at 1:23 am

      I have found that using a hot pack can sometimes help.


    • Anonymous
      March 25, 2009 at 1:23 pm

      Have you tried alternating hot and cold packs? Sometimes that works for me. Hope you feel better.

    • Anonymous
      March 25, 2009 at 2:06 pm

      I have the exact same ache that you describe. Mine is mostly in my hands but can be in my feet or anywhere from the knees down.
      I think I get it in my hands most b/c with my job, I am on a computer and adding machine alot. I have CIDP tho…
      sorry I cant help you but I can tell you, I know exactly how you feel.
      I have yet to find anything to make it stop hurting. It comes and goes and when it’s here, I bare with it. The hot/cold does help but doesnt take it away.

      good luck.

    • March 25, 2009 at 7:23 pm

      thanks all…I use a heating pad at night and tuck my hands under it or put it on my feet. It helps only to comfort, but even that is good. I managed to get some decent sleep last night, woke up this morning…actually dreading opening my eyes and coming fully awake because I didnt want to deal with the usual pain. But, nothing was there!! My hands feel totally normal! Elbow area still a bit off, but I’ll take that over the rest of the pain! I will add it to my long list of residual pain.

      Could it be perceived pain? I just dont know what is real and what isnt anymore. When something new crops up, I tend to worry a lot.

    • Anonymous
      March 26, 2009 at 12:34 pm

      I am suffering from the same pain right now. I have a deep ache that radiates from the outside of my right elbow to my shoulder and down to my wrist. It is like a toothache. I have been getting this off and on for years. Three years ago I had my foot x-rayed because of pain on top of my foot that woke me up at night. They could find no reason for it and a foot doctor thought it was nerve pain. I take advil and use heat. Also I find that rubbing the affected area with Ben-Gay or Vicks helps. Usually the ache goes away in a few days to a week.


    • February 6, 2008 at 2:59 pm

      Hi all

      I know I have asked this before but I am getting desperate. My throat was affected and I dealt with it being numb and/or tingling while I was sick. Then the muscles felt as if they were choking me. I could swallow, and all that, but it was tight and annoying. I was very glad when that resovled itself. I still have a little bit of numbness and a tiny bit of tightness but at least I dont feel as if I am being choked. I am unable to see a dr since I have no insurance anymore so that is not an option. The problem is, since getting sick I have started snoring. It is very embarrassing and I know causes sleep problems….especially when my hubby pokes me to roll over or stop. I have tried Snore Stop and Breathe Right strips. But he is complaining and losing sleep and I am frustrated and embarrassed. I have explained that I believe it is due to nerve damage in my throat and he agrees with the possibility. Thankfully he is understanding, but that wont last much longer and I am going to start sleeping on the couch to save us both. Has anyone else experienced this and how did you deal with it? Does it get better? What can I do besides seeing an ENT doctor? And am I correct in thinking it is nerve damage?


    • Anonymous
      February 6, 2008 at 6:16 pm

      I’m there with ya Lori!!! I have found that by using a firm neck pillow on top of a firm kingsize pillow running lengthwise ontop of a medium regular pillow running widthwise(pillows end up looking like a cross) it raises my upper body at just the right angle to lessen my snoring. I now have sleep apnea and lung/breathing issues and found I can breathe a smidge better when slightly elevated. My nose is affected by my nerve problems also, I can barely breathe through it-air moves just fine but isn’t nearly as powerful on inhaling as it once was. My swallowing was affected, throat still has some places that are affected as well. Have you tried simply saline before going to bed? I haven’t used it because I just can’t stand to spray anything liquid into my nose now, but I make my hubby use it(dr highly recommended it to him after his surg a couple yrs ago) and it helps him snore less and quieter.;) Take Care.


    • August 22, 2006 at 9:22 pm

      Hi all

      for a couple of weeks I have been feeling much better. In fact the past several days I have had virtually no weakness and just a bit of tingling in my feet and hands. Last night I noticed my neck was once again feeling odd and I had weakness and “tightness” in my lower legs and a bit in my arms. It is most uncomfortable and irritating. It hasnt gotten worse and seems to “get better” then “the same as before”. Is this normal? It has been 6 weeks since this all started and I guess I was hoping I would continue to feel better. The only thing that has “cahnged” is that I started my monthly. Which is wierd because when I was hospitalized I was about to start as well. Have any other women of child bearing age noticed that “that time of the month” has a negative effect on your symptoms? I would be more or less okay if my face and neck didnt get involved. I absolutely HATE that feeling.
      Tonight my feet and arms are really warm, tingling, no pain though and I can move everything okay. Just wondering if this is something that is “normal” (is anything normal with this??) so I know not to freak out or get overstressed.

      Off to do more praying

    • Anonymous
      August 22, 2006 at 9:56 pm


      having ups & downs during recovery is normal. if too many downs you need to rest more lying down. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • August 23, 2006 at 4:23 am

      thanks Gene…I have to remember that it has been short time in the grander scheme of things. Fortunately I am able to rest as much as I need to and do so. Heck I am even able to not feel guilty about it now…whew!

      hugs and love to all

    • Anonymous
      August 23, 2006 at 11:18 am

      Hi Lori,

      As gene said, rest is always good. It’s something to understand and hard to explain, but the body will always know before you do, that it’s tired. Beings that you are still in the early part of this, getting to know those body signals a lot earlier, or when the body first starts to send you a message, is quite a learning curve. Not so easy as it sounds, and after 7 years for me, my body tricks me, or I trick myself really, thinking I have energy I don’t have. Right up to the point something smacks me in the face. The hardest part is keeping oneself in check. The other aspect here, that hasn’t been discussed, is when healing, a single residual, staying the same for awhile, will change in feel, texture, pain, and so on. Same residual, but because it doesn’t feel like you’re used to, it can be precieved as a new residual.

    • Anonymous
      August 23, 2006 at 11:43 am

      I havent noticed any difference at the time of my monthly. I was hospitalized a week after it and still havent gotten it since this all started. One of the first things they checked for was pregnancy which I am not, so I am guessing it is just the stress. One thought is that because of your body going through this then maybe you are just getting different menstraul symptoms than you are used to, like the lower back pain and headaches. It does make sense when they explain to me things like how I cant straighten my legs because they either hyper-extend or go to a bent position because my body is just confused and needs to be retrained. Or like having to watch your feet when going on steps because you have no idea where you legs and feet are in spacial relation.

      Take care and hopefully this helps out a little anyways.

    • Anonymous
      August 23, 2006 at 9:43 pm

      My menstrual cycle has changed tremendously since gbs and i have also developed what appears to be pre menopausal symptoms. I have an appointment with the doc in two weeks to find out. just one more thing to ad to the list. 🙂