Couple of questions…

    • February 25, 2011 at 2:22 pm

      Hi all!

      Okay this started with my mouth twitching like mad when I tried to smile. Of course I avoid doing so now out of embarrassment.
      Now, my right thumb twitches like mad when I try to hold a pen/pencil, my mouse, a book, and sometimes it feels like it will start twitching ‘just because’ but doesn’t if that makes sense. Also my left foot—arch and toes—twitch like crazy. I have tried no shoes, shoes, just socks, nothing seems to make a difference. Eye twitches, and of course the all over body vibrations. What the heck?? I also have been getting horrible pain in my back right below my right shoulder blade that doesnt feel muscular or bone related. Not sure how to explain it, but I have had hubby rub ben gay on it and it doesn’t hurt to touch. He is unable to adjust my back (gently) because of how tight things are. I totally don’t understand. Hands aching, falling asleep, the other day my right forearm and hand and wrist were so weak and out of whack I honestly thought i was having a stroke. Was totally terrified things were coming back.
      I have an appt with a fibro clinic next week. Know it is ridiculous to go see my regular doctor because I don’t want more pills thrown at me. Right now I have been changed to Flexeril, which doesnt make me react negatively thank goodness, but it honestly doesn’t feel like I have taken anything. It does take the edge of the pain and I can relax but so many down days are really starting to get to me. I don’t even care about picking up my camera, and it has affected how I use my computer. I am having difficulties creating my digital art….one of the things that helped keep my mind off of things….and it is tearing me apart. Feels like I should just give up instead of pushing thru and trying harder. GBS Wins, you’ve finally taken away my motivation and the last things that were all mine. What more do you want from me?!

      Sorry just so depressed and don’t know what to do. Rest…if i rest much more I will go into a coma. I have been attempting to set aside time in the evening to meditate, listening to healing music, and zoning out. If nothing else, at least I can actually sleep but am woken often during the night because I am uncomfortable. One of the anti anxiety meds (Vistaril) causes dry everything. My nose is so stuffy and dry I can only breathe thru my mouth which causes dry lips and throat and such. And doesn’t do a heck of a lot for anxiety. But the shrink said I was taking too much xanax (was only taking 4 mg a day and saving them till night time and that was after being on it for about 3 years I think. I don’t think that is too much). Anyhow, any ideas?? Should I be worried? Should I just chalk it up to one more thing I have to live with?

      I really really hate this.

    • Anonymous
      February 25, 2011 at 5:16 pm

      The only thing I can suggest is to use a humidifier in your bedroom at night. That should help with the dry nose, lips, etc. I prefer the warm mist because I like to add the Vicks vapo stuff to it…I like the smell (I’m weird, I know).


    • February 25, 2011 at 9:13 pm

      Hi Fairly Odd Mother!
      Is the twitching new? If so something must have set it off.
      I don’t know what.
      Would some very light physical activity like a short casual stroll in the crisp air help to stretch out some of your muscle aches?
      Just do something easy and enjoyable.
      Sway to the music.
      I want to see you back to photography and digital art, your passion. I will happen don’t give up hope.
      Right now some of this may be just temporary and will go away with the weather.
      My thought and prayers are with you.!

    • Anonymous
      February 26, 2011 at 12:16 am

      F. O. M. I read your post and recognize the struggle and depression. It seems like we ‘adapt’ to whatever ‘it’ is and then it changes and we adapt again … and again. It takes a lot to get up again … and again and find that place where at least you feel you there is some level of gain, peace of mind, anything that works – even a little is a lot. When that little is threatened it is a lot. I’ve visited places I never knew existed and fought my way through them to achieve some level of stability, I’m tired, depressed, and hate everything about this weird dis-ease. Ever on the look out for that little something, the next peek around the corner – thinking just maybe this will help. I have pushed my envelope to the max more than I care to even talk about. Words don’t seem to match the reality and when I use one like ‘stability’ I can’t even define it. One of the good things about this forum is you are speaking to people who at least ‘have a clue’ and do care, a lot.
      I was watching TV the other day, a travel show about China and saw all the elderly people doing Tai Chi exercises and I thought – maybe something like that would help a little. Looked kind of ‘right’ to me and even though I can’t stand or walk unaided (crutches/my electric wheelchair – I love it) I snarfed around the net until I found a Tai Chi GongFa Video for people in wheelchairs and bought it. I tried it – not a pretty sight – Tai Chi requires a smooth physical motion, coordination and concentration – what was I thinking! But what the heck, its just me in a room, giving it my best try. Its turned into a bit of a challenge now and that sense of doing something positive is there. I can’t measure it and its actually harder than it looks. Interesting and more fun than loading up going to occupational/physical therapy or taking another pill.
      Anyway, your story moved me and is so recognizable. Sometimes you just have to tell it like it is and that (I know) is good therapy, but not a good life style. I hope you find that next spark – whatever it will be – and find some peace of mind and comfort.

    • Anonymous
      February 26, 2011 at 1:39 am

      I have no answers but want to send a huge hug to you!

      It is difficult to push through the touch times but I am going to push because I am not going to let thisGBS/CIDP win!

      Have you tried warm baths or hot packs? I have found that this sometimes help with my pain and twitching. Don’t know how or why but it helps.

      Keep your best foot forward and your chin up!

      Take care and try to find one small thing to make you smile, you can work through this rough patch, you are a strong person! 🙂

      Hugs to you from all of us,

    • Anonymous
      February 26, 2011 at 8:35 pm

      If so- do you think you can get a copy? Then look for the “*”s after any numbers – the *= either a too high or too low component.
      Two reasons why:
      1- many of our pain meds inhibit or leach our ability to maintain bone densities. Soo trying a combo of calcium citrate +magnesium+vite D can help you maintain, at least, what you’ve got and maybe rebuild bones. Many many other meds we are on can and do help us LOSE that bone and bone asorbtion as well.
      2- I’d been told by my diagnostic neuro that I mite have asorbtion issues in the future.. and I do. All due to the PN.. they aren’t autonomic yet? But there can be and likely is damage in some way in this aspect to me. Sooo I WATCH and try and adjust supplements and meds to accomodate actual and potential problems.
      Truly? Trying to adjust your critial blood #’s that can be helped w/ supplements? Is a lot cheaper and easier to ENDURE than going thru a long gastro workup!
      I’ve often teased docs about ‘paying attention/or not’ to those “*”ed #’s! I often get a sheepish look in response! Getting any test copies out of a doc tho is worse than pulling hen’s teeth! Or a fortune$
      Go look up what ‘calcium depletion’ does? Here are two examples…
      URL &
      Don’t let them scare you? Just look up the techy words…they’ll make sense then. Good luck? Takes about 4-6 weeks to work and settle in… Plus? Maybe a trip to and enocrinologist? But, in the end? It can be managed.
      Hope this helps? We have to feed our selves that which we can’t get ‘normally’ any more. Sigh. Hugs!

    • Anonymous
      February 27, 2011 at 11:32 am

      There is a short form of Tai Chi called Tai chi chih. When I lived in California it was becoming popular among the ‘older’ and slowly moving auntie generation around LA and San Diego. Some of the Rehab doctors were trying it as part of their practice. It might be difficult to find a teacher, yet the 19 movements are easy to do. And, you can probably just follow along on the video. The movements are very gentle and very slow.

      One of the aunties I know went to school to became a teacher and absolutely loves the benefits. Let me think, she’s old? How old- hmmm can’t tell can I?

      for info: [url][/url]

      As for the twitching, it’s tough. When I was at my worst most of my twitching was related to fasiculations and/or overuse. By overuse, I mean that I was limited to about ten repetitions of any particular muscle exertion.

      It’s so hard to remain positive. I really hope something will work for you.

    • Anonymous
      February 27, 2011 at 5:29 pm

      Fairy Odd Mother Baclofen is good for muscle spasm but if you are experiencing weakness go get it checked. Maybe you are tired and it is one way your body is telling you you are over doing it? When you go to your Fibro visit next week see if they can check your reflexes and stuff.
      I don’t want to worry you but could it be that your GBS has now turn to CIDP. It is just something to think of.


    • June 5, 2011 at 5:08 am

      Sorry I haven’t been around. I saw the fibro doctor who said I indeed have that on top of the GBS. Lovely but explains some things. Now I don’t know what is residual and what is fibro related UGH more to ‘learn’. She put me on neurontin because she said since i first tried it when I was new to the GBS, things might be different now. Okay so I agreed to give it a try. Wowzers!! I started hallucinating and was thrown into a full blown 3 week long manic! I tried to stick with it hoping my system would adjust, but I couldn’t handle seeing the bat-like black smoky things crawling on the walls and watching us and the manic was not a productive state, it had me spinning in circles unable to focus or catch a racing thought. Hubby talked to the doctor because I had taken pain meds my regular doc wanted me to try (Soma). The Fibro doc told him that I was not to take the neurontin at all, go off of it at once and she confirmed i did indeed have a manic episode. As if I didn’t already know that!
      So I am still dealing with the back pain. It will wrap around my side and chest and makes life miserable. But if i press and poke around under or below my ribs nothing hurts or feels uncomfortable. BUT my ribs feel bruised. *sigh* I dunno. I did start taking supplements and was put on a high dose of Vit D3 to see if that would help. I didn’t notice ANY difference. I am even taking magnesium and CoQ10 plus a full spectrum multi, changed my diet, am trying to be more active even when I don’t feel like it. Still going to counseling but the small changes I am trying to make don’t make a dent in the depression and hopelessness I find myself in. Put on a smile and push through because I don’t know what else to do.
      I will be making yet another appt with my regular doctor to make sure nothing is going on that would cause the pain in my back, side and ribs that I should be worried about. Last time I saw him the xrays showed nothing and the blood work…including extras for auto immune stuff just in case…all came back normal. I know if i go back to the fibro clinic the woman is going to tell me she can’t do anything for me. OH!! Almost forgot! I was given Naproxen to try for inflammation pain. I had put of trying it because of all the damn side effects I have had with others. Okay fine, broke down and took one. Within 2 hours my legs from the knees down and my feet felt totally paralyzed! Completely numb and I had to watch where I was walking because I couldn’t feel if my legs were even moving!!! I also had a very empty feeling in my chest, as if my chest muscles were not working properly. I was pretty freaked out but did not want to go to the ER in case they shot me up with something that caused some other nasty side effect. Pharmacist told me not to touch that again. What else is out there for pain??

      Things I have tried and either have not worked or have had bad reactions to:
      codeine products
      Ins wont touch Soma but it didn’t really do anything but knock me out and the pain woke me up.
      Robaxin-felt heavy chested and residuals flared up big time and no pain relief at all

      I am sure there are a couple of others, but I can’t think of them right now. I am so close to saying to heck with it and living in pain and saving my crying time for when I am alone or up late and everyone else is sleeping. Oh and we thought the back pain was related to my poor computer posture but my computer was down for over a week and I woke up with my back hurting. It doesn’t matter if I sleep in bed, on the couch, don’t sleep, use the computer, dont use the computer. It just is. I really don’t like whats going on. help??

    • Anonymous
      June 5, 2011 at 10:52 am

      Have you tried Lyrica? It is supposed to be the new and improved neurontin [without so many side effects] It didn’t work for me, but I though I would pass it on.

      My family doc has me on MS Contin 30 mg for pain. According the neurologist morphine does not work on pain caused by nerve damage. Well guess what, in my case it appears it does to some degree.

      Each of us appears to respond to meds differently, so many be Lyrica or MS Contin might work for you.

    • Anonymous
      June 5, 2011 at 10:53 am

      When I was put on Pristiq for my depression I found that I didn’t need to use as much Lyrica. So Pristiq helped with my depression and some of my pain.


    • Anonymous
      June 6, 2011 at 2:22 am

      Lori – I’m sorry for this “drama” chapter in your life. I, too, just discovered how awful neurontin can be! I became very angry and “wanted to kill someone, any one!!!” It wasn’t that way until I went from 700mg/day to 1900mg/day. The pain control was better but . . Now I’m way back down to 600mg/day and things are better. Anti depressants sometimes help but they,too, mess with brain chemistry. There are 12 known neuro-transmitters and as my doc says “when you mess with one, the others have to change in response 😮
      I truly do understand your questioning about “is the fight worth it” and having to cry alone. Only you can decide that – which is better to do when you are having a good day – ha! The only thing I have to offer you is remember how to eat an elephant – – – one bite at a time!!:D 😀

    • Anonymous
      June 6, 2011 at 11:21 am


      Sorry to hear of your troubles. Wish I could help. I have been having a lot of back pain too and I think it is related to the fibro or maybe a disc problem. It wouldn’t hurt for you to get some xrays or maybe an MRI to rule out something else.

      I wanted to comment on the supplements. It takes a while for them to take effect. I have been on the supplements for a year and it is a gradual process. The vitamin D raises slowly over a few months. My bloodwork has all shown raised levels of vitamin d and B12, so I know it is working. It just doesn’t work overnight. This will definitely help with the depression. My vitamin d was low and I bumped it up to 2800 IU a day and it has helped immensely with depression and anxiety. I would cry all the time and I have not cried in a long time now. I was on Xanax, and since I have stopped, strangely my anxiety is better. I think that the Xanax was actually causing anxiety!!

      One thing I have added in is ALA, and I have noticed a lot less nerve issues and twitching. Just a suggestion. Hang in there girl. Never give up….


Couple of questions

    • Anonymous
      February 20, 2008 at 2:53 am

      Lately I’ve noticed a funny cramping in my hands where my fingers almost try to pull sideways…has anyone else seen this?? :confused: Also I think I’ve managed to pinch a nerve in my back because I have one leg where the thigh goes almost numb sometimes and I’ve noticed the last couple days that in that thigh I get a burning so bad my leg feels like it’s on fire and even the fabric from my pants hurts when it touches my leg. My question there is whether or not it’s safe to have a chiropractor look at it and possibly adjust my back if needed with CIPD. Thanks for any advice anyone might have.

    • Anonymous
      February 20, 2008 at 4:57 am

      I’d be cautious about assuming that you’ve pinched a nerve. I get the same symptoms in my upper thighs (periodically) and it’s the CIDP – demyelination. Sometimes it is only obvious in one thigh, sometimes both. My demyelination symptoms can include all or some of these: hot, cold, numb, twitching, spasms, weakness, paralysis.

      In addition, I have nothing against chiropractors in general but I had one tell me she could “fix” my curved back by mashing on my spine and proceeded to introduce me to a series of ruptured disks that plagued me for 20 years. 😡

      I don’t have problems with my fingers going sideways but I do try to stretch out the tendons every day – they contract very quickly (for me) and if I don’t keep up with the stretching I can quickly find my fingers in unnatural positions.


    • February 20, 2008 at 10:33 am

      Yes, when having a “relapse” of CIDP I sometimes have my fingers do that and it feels just like a cramp, pain and all.

    • Anonymous
      February 29, 2008 at 9:27 pm

      I can relate to cramping in the fingers of both hands.
      There seems to be no pattern or explanation, but once or twice a month my fingers will cramp and deform into a state that I could not duplicate if I tried.
      My ring finger will close tight to my palm, while my pinkie and thumb will bend and deform in strange positions. I have learned by now that after a couple of minutes, my fingers will slowly relax and return to normal.
      This condition will come on suddenly, and once while attempting to drive, I had a spasm and I was barely able to pull my car off of the road until the spasm gradually relaxed.
      I spoke to my neuro, she seemed quite confused as most of my symptoms affect me from the knees down to my feet.
      These finger cramps are very sudden and quite painful.
      Just another odd symptom that I have experienced since the onset of CIDP.

      Good Luck, Barry