very twitchy

    • July 28, 2008 at 12:18 pm

      Hi all

      I have been doing wonderfully and have felt darn near normal for a couple of months now. For two days now, my feet are buzzing and I have lots of twitching mainly in my left foot (first part of my body hit and hit hardest) and both legs. And a slight burning sensation in both. I got so spoiled feeling so great and am wishing this away like crazy. What can I do about the twitching? And getting everything to calm down? I am trying to think what could have triggered this, but the only thing that has changed is I got excited about picking my kids up at the airport.

      *sigh* trying to remain positive and remember, I will feel better soon. Was just hoping when I said that last night, that it would be this morning that I felt ‘normal’ again. Oh, I am a few days into my 2nd year with this and hope twitching and such means healing of some sort.

    • Anonymous
      July 28, 2008 at 4:04 pm

      Try applying heat to the area and see if it calms down the twitching
      It seems to help mine or at least make it feel better.
      Is there pain?

      Rhond from Canada

    • Anonymous
      July 28, 2008 at 4:08 pm

      Hi, I know what you mean. I think it is all just part of this whole illness. I had GBS 25 years ago and I still get twitchy spells. They usually are when I am over tired and have overworked myself. Were you extra busy the last few days in anticipation of the kids arriving? I know when my kids are coming home, I tend to rush around getting things together, extra cooking, cleaning, shopping etc. and then I have spells of twitching. The other night my hubby said I was twitching and jerking all night.

      I hope this doesn’t concern you too much but if it does, please see your dr. Who knows, right? As each of us is different, it is hard to tell what is “normal”:confused:

    • July 28, 2008 at 4:47 pm

      I was actually less physically active since I had gotten everything done in advanced…wasnt a lot to do. I am trying to stop smoking, not going as well as I had hoped but I have noticed a change in my blood pressure. Which both freaks me out and makes me feel better. I was at 113/73 and now it is at about 100/70. the bottom number has been as low as 64 resting (is that okay?). The only thing that scares me about the BP thing is not knowing how much GBS has affected me in that way. and since I dont know, what do I do but keep a check on any dizziness or fainting or other such things? Hope I am not too confusing.

      As for pain, just mild. More annoying than anything. Burning sensation, vibrations, that sort of thing. I guess it is just a “phase” since nothing else seems out of whack and it hasnt gotten worse. In fact, trying to compare it to what I have experienced just a few months ago, even this “down time” is better. I forgot my list of essential oils to try for a massage before bedtime so I will have to pick those up next time I am out. I have used a foot bath the past couple of nights with some epsom salts and that helps relax me. I didnt even need a xanax for bed last night even with all the twitching πŸ™‚

      GBS sure does mess with more than just your body.

    • Anonymous
      July 29, 2008 at 4:50 pm

      Fairly odd mother, Did you have low blood pressure before GBS? And no, the 64 for a resting bottom number is fine. Actually it is great. Under 60, would maybe be a concern. If you have any of that dizziness, fainting, etc. see your gp. Are you on any blood pressure medications now? Emma

    • July 29, 2008 at 5:05 pm

      Nope no meds other than xanax when I need it. My blood pressure has always been on the low side, even when I was pregnant it was low which the dr’s seemed worried about but I figured it was a good thing. The only time I feel lightheaded is if I dont eat (found out my non fasting blood sugar is only 98 so I can only imagine what it is when I fast…again, always been on the low side), or I dont drink enough during the day. Of course I deal with fuzzy headed syndrome occassionally, but have been since onset of GBS. But, over the last few years smoking and not working out had upped my BP a bit. Still within normal range though so that was good. I guess I wont worry unless I start having dizzy spells or fainting or other problems. My total cholesterol has dropped too! Been working on that one though. It is just under the optimal, LOL JUST barely. But an improvement from being [I]slightly[/I] elevated.

      Still trying to “recover” from the bad days. Just feeling muscle fatigue and some pain…like I over did something and of course still a little twitchy. Oh the joys of GBS. :p

    • Anonymous
      July 29, 2008 at 7:07 pm

      I too get twitchy feeling also. But not diagnosed yet with what they think is causing it. My lower eyelid went for two months doing a twitching. Drove me nuts. My leg muscles do that and arms and sometimes the torso. It stinks! I hope it was just the over excitement and nothing else. Will keep my fingers crossed for you!

    • Anonymous
      July 29, 2008 at 8:35 pm

      I hate to even mention this-feeling like they are swear words-but I reread all your posts and 1. if you have always had low blood pressure then what’s normal for you is low and that’s ok unless you start with the dizziness,etc.-would love to sneak in during the night and see what your BP and pulse are when you are sound asleep.:) but 2. the burning and the twitching-could that be cidp now-I hate to even ask, but I live with burning, twitching(more like stabbing pain), and numbness in my legs, low esp. and right more than left but my EMG showed more nerve damage in the right leg. I agree with Jan though about your kids coming-even excited and ready ahead of time is stress too-a good kind, but heck our bodies are screwy now, so if that crap persists, yell for your doc-I know, I know, I hate going in any more than I have to-they should have a frequent flyer reward for seeing doctors-I’ll meet you in first class. Just take care, OK? Emma

    • July 29, 2008 at 11:37 pm

      When I was in the hospital with GBS my BP was 99/60-something and stayed that way even when I was freaked out. I agree it would be interesting to know what it is when I am fast asleep.

      Also, the idea of CIDP has been on my mind. Originally it came on rather fast and peaked at 4 weeks. Improved and kept improving with periods of feeling crummy. But never has gotten bad again so I just always assume it is residuals since I havent dealt with anything worse like when I first got sick. I had a lot of twitching when I started getting better, then it got to the point that if I didnt twitch at night I almost missed it…as if!

      I would like to know if there is a good neuro in the Nampa/Caldwell Idaho area. I know there is a liason somewhere near here, but I dont have the contact info. I have decided to break down and see another neuro. I havent seen one in over a year and really would like a “professional” to look me over and let me know if I am okay or what. A “security blanket” I guess. Not sure how much it will cost since I dont have ins any longer and dont qualify for any that isnt over $400 a month because of GBS. If I turn to the state they will count what little I have to live on against me. I’ll figure it out even if I have to make payments a little at a time.

    • Anonymous
      July 30, 2008 at 10:44 am

      I looked up the liason contact info for you:
      Mr James Mertz
      14072 Sunnyslope Rd
      Caldwell, Idaho 83607
      (208)459-7141
      Hope this helps, Emma

    • July 30, 2008 at 11:40 am

      Thanks Emma! He lives not too far from me πŸ™‚
      I gave him a call but no answer, so I will try again later.

      I called a neuro in town and was not encouraged at all. The person who took my call had never heard of guillain barre *sigh* but would talk to the dr and find out what he knew and have him call me back. I really really dont want to travel too far from home since driving too much is difficult on me right now and I am the only driver in the house (hubby hasnt gotten his Idaho DL yet….long silly story). It takes a lot for me to even consider seeing a dr since I always feel so much better in a few days. But, this time I just need the peace of mind I think…and of course who can resist that nagging feeling deep inside, the same one that prompted me to seek out the forum in the first place. *smile* hubby says I pay way too much attention to my body and need to relax. I say it can be a good thing that I am so in tune…it also drives me nuts.

      *edited to add* the dr is familiar with GBS and has treated patients. The first opening in at the end of aug or so…he happens to be the only neuro this side of town and the only sleep dr as well so he is rather busy. Of course i also know if things get too bad, I head to the ER armed with info and an attitude I didnt have 2 years ago, and of course records from my former dr’s.

      Thanks again and I will let ya know what happens.

      Lori

    • Anonymous
      July 30, 2008 at 1:55 pm

      Lori,

      I am glad you at least have an appointment. Take good care and head to the ER as you say if you get the least bit concerned. I still get worried when something happens and I had this 25 years ago:rolleyes:

    • July 31, 2008 at 12:46 pm

      Called another dr that the first one suggested and got a much sooner appt…aug 7th! And everyone there is familiar with GBS so that is a comfort.

      It will be interesting to see a dr armed with knowledge and personal wisdom instead of going to see someone not knowing what I do now. I sure hope he is open to such things, other drs seem to have a huge problem with patients who self educate, but hey how can you avoid research and educating yourself if ya have something like this? And of course there is the load of personal experience that may or may not be in text books πŸ™‚

      Still feeling crummy, but not exactly feeling worse. Which in and of itself is a good thing so I am counting my blessings. I broke down the other night and cried in front of hubby…told him I just wanna be “me” again, I miss what I was and who I was, and I just want to recover so I can stop telling my kids I dont feel good. That part hurts so much. And then I really lost it when I realized I wanted my mom and I can’t turn to her anymore because she passed away last year. Ouch. Even the thought right now makes me tear up. *sigh*

    • Anonymous
      August 1, 2008 at 12:24 am

      Hey Fairly Odd Mother…here’s a huge cyber hug for you. It seems we never stop wanting our mothers *sigh* I know what you mean about saying you don’t feel good. My family gets tired of hearing it and I clam up and don’t say anything. They think I am a hypochondriac….How supportive is that? But at this point, I know what I feel and I take care of myself the best way that I can.

      I am glad you got an earlier appt. to a neuro and one with experience! How lucky can you get? Hope you start feeling better soon. The appt. is only a week away, so hang in there.

    • Anonymous
      August 3, 2008 at 12:49 pm

      Hi Lori-just checking in to say hi, give you a hug, and ask how you are doing? Hope things get started for you on the 7th-let us know how things go.
      Emma

    • August 3, 2008 at 4:01 pm

      Thanks Emma. I started taking my “anti inflammatory” supplements again and, it may be a fluke, but I am feeling better than I was. Still going to the neuro just because I think it is important to see how things are going/coming along. I appreciate the hug :):) and send one right back to ya!

      Last night I did a foot soak in epsom salts and my dog thought I was weird. He was sitting there watching the foot bath with his head tilted and his forehead all wrinkly. So I said “if ya think its weird now, watch this….” and turned on the bubbles. He jumped back, tilted his head almost completely sideways and snuck forward to peer into the footbath to see what the heck was going on. He made me laugh. Silly golden!

    • Anonymous
      August 4, 2008 at 10:57 pm

      I had GBS over 30 years ago and get twitchy feelings in feet, ankles and calves. It is “restless leg syndrome” from nerve damage. I mainly get it when I am tired, stressed or under the weather. Really not too much you can do about it. After a while, you get use to it.

      Take Care. boomerbabe

    • August 6, 2008 at 10:32 am

      I went to the chiropractor the other day because my back has been sore…yep it is “out”. He looked at my arms and asked me if I was left handed, I said no. He told me I had atrophy in my right arm and being right hand dominant, it was odd. I knew I wasnt crazy. I had noticed this a few months ago. My left leg and right arm are still my main problem areas. It will be interesting to see what the neuro says tomorrow. I just pray it isnt anything horrible!

      The past couple of mornings I have woke up with my lower legs stiff but they have done that occassionally since I got sick. Used to be really bad, but had gotten better. I havent done anything out of the ordinary and have been resting in the evening reading. I guess I got too used to feeling great and my body is reminding me that it isnt 100% *sigh* But hey the twitching is much better, almost gone!

    • August 6, 2008 at 10:37 am

      [QUOTE=jan’83]Hey Fairly Odd Mother…here’s a huge cyber hug for you. It seems we never stop wanting our mothers *sigh* I know what you mean about saying you don’t feel good. My family gets tired of hearing it and I clam up and don’t say anything. They think I am a hypochondriac….How supportive is that? But at this point, I know what I feel and I take care of myself the best way that I can.

      I am glad you got an earlier appt. to a neuro and one with experience! How lucky can you get? Hope you start feeling better soon. The appt. is only a week away, so hang in there.[/QUOTE]

      My mom used to complain daily of not feeling well. Headaches constantly, her diabetic neuropathy, aches, pains, fevers, sore throat, you name it. At one point I joked that if she heard of the Ebola outbreak, she would “get it”. The doctors never could find anything wrong with her—although they had her on a handfull of meds a day to treat whatever ailed her. My son recently told me I sounded like her because I was telling him that some days I just cant participate the way I would like to, and other days I feel fine. It really hurt my feelings, and it especially hurts because hubby doesnt know what to expect. Do I clam up? Keep it to myself and deal with it? Put on a happy face and struggle thru it as if all is well? Like you, I know what I feel and I know what I deal with. I’m certainly not one to fake being sick and who would want to fake any of this (how could they?). Hugs to you!

    • Anonymous
      August 6, 2008 at 6:41 pm

      Fairly Odd Mother…that is exactly how I feel too. Do I shut up, or what. It is hurtful. No one wants to be sick and if they are “faking it” then they are still sick only from a mental perspective and it stills needs to be treated. I’m like you. I had a great weekend and was busy, active, on the go and loving it. Yesterday I felt weak and today it is an effort to put one foot in front of the other. How do you explain that to some one who sees you looking the same on the outside as you did a few days ago when you had energy to burn?

      I think that my family wanted this to go away when I came home 25 years ago after 4 months in hospital. I let them all think that every thing was okay and I did do well for an extended period of time. But as I age and over exert myself, I feel the residuals intensely. If I think back, they were always there, but mild and I was able to ignore them. Today, they drive me nuts!!!
      The buzzing, twitching, tingling, burning, stabbing pains, etc. are getting worse all the time and they don’t want to hear that. They want what they had 25 years ago., but she is gone…..

    • August 6, 2008 at 7:51 pm

      *hug* Janet, you need one of those. When I broke down recently and cried, I told hubby that it wasnt fair. None of this is fair. I even asked what did I do to deserve this? And after I had my cry, I remembered that I am not all that bad off. That there are others who are worse off than me thinking that it isnt fair and they dont deserve what they are going thru. I felt guilty.

      I am trying to change my way of thinking from what used to be…for me it was only 2 years ago…to what is now. It is hard! How can you just toss out something that you miss? When I was cleaning out my mom’s house, I wanted to keep every little thing, all the memories, all the feelings attached to the items. I kept telling myself that I couldnt keep everything. I would hold something and close my eyes and allow myself a moment to let the memories flow through me. I cried, I laughed, I smiled. I let it go. I want to be able to do that with this as well. I want to be able to remember, to laugh, to smile, to cry and let it go. I am not the same person I was 2 years ago. I am different now, but the same. I want to be more active but there is only so much I can do and for only so long. I need to accept that and embrace it, enjoying the moments I do have a spring in my step and a song in my heart. Do what I can without exhausting myself, have fun with the kids, and be happy. Whatever comes tomorrow or next week will be dealt with the best way I can, and I will look forward to the next moment I can dance and sing and live the way I remember living…only a little differently.

      Now to totally convince myself that all of that is possible and go for it πŸ™‚

      Huge hugs because we each need more than we get each day.

    • Anonymous
      August 6, 2008 at 8:01 pm

      The night the ambulance came to take me to the hospital my BP, top and bottom numbers, were both over 200 each. It was so bad the ambulance refused to move me any farther, until my BP came down. It surly is affected by the GBS. It has been a long time for me and I still have the twitches, mostly, when I lay down to rest in the daytime, or when I go to bed for the night. It is not safe for anyone to sleep with me, unless they want a kick, or hit in the face with my flailing arms. F.O.M., this happens to me anytime I try to rest…with or without pain, it seems to always happen, or so I am told. lol πŸ™‚ Really not funny tho, as I don’t like sleeping by my self. πŸ™ . I hope things calm down for you.
      Your GBS Friend,
      Drummer

    • Anonymous
      August 7, 2008 at 7:47 pm

      Mother and Jan,

      I know exactly how you feel. I never feel “good” anymore. No one seems to understand. I wish I could go back to feeling like I did years ago, but I know that is probably not going to happen. Even doctors don’t understand. So many of them were taught that GBS just goes away. Oh how I wish that was true. I know I am lucky to have survived and to have walked again, but the problems that have come back in the last few years seem like a cruel trick. God Bless you and all those who have to deal with this cruel and misunderstood syndrome. To know that I am not alone in this helps.

    • August 7, 2008 at 8:05 pm

      Neuro appt went well. He relieved me by saying that there is no signs of CIDP or a relapse! I almost cried! He did say it seems that I am left with residual problems…yes I know this much…and may or may not improve with time. I am hoping I do. I go in for a nerve test in a couple of weeks and hopefully my records will reach his office by then so he has something to compare it to. SO that is where I am at, good news and that is basically what I was hoping to hear.

      Now for the questions. He wants me to give Cymbalta a try. I have read such awful things about it and how difficult if not near impossible to wean off of it. So do I deal with the pain and roll with it or risk side effects (which I hate!) and “cymbalta hell”? I would love to be ‘normal’ again and stop having so many down days. And be able to go for walks and clean the house without depending on the kids. I want to be active again! I don’t know what to do. This whole round of residuals started when I tried Zoloft. I was in such pain that I had to go off of it, and still havent fully “recovered” from it. It scares me to try anything else even if there is a promise of relief.

      Any and all input is greatly appreciated!

      ~Lori

    • Anonymous
      August 8, 2008 at 11:15 am

      hey fairly odd mother, you raised a question for me. I went on Zoloft about 8 years ago. I had some residuals, but not a lot and not disruptive to my life. Over the last 4 years or so they have increased substantially. Could this be Zoloft related? HMMMM:rolleyes: I did go off the Zoloft after about 2 years, but don’t remember if that was exactly when things started…

    • Anonymous
      August 8, 2008 at 3:42 pm

      hi fairly odd mother, I wanted to check in and see how your visit with the new neuro went. I saw my gp Mon and he started me on Cymbalta 60 mg a day—really really tired and sleeping a lot-have to wonder how I will do with the added tiredness of the ivig Mon and Tues. Also have nausea- am taking Compazine for that. Can’t stand the smell of coffee now-at least today-and I am a one pot a day drinker. Am also seeing a new neuro next Thurs., so will get her input on the Cymbalta. But I have to admit the constant throbbing from my knees down has lessened. Side effects of no appetite and weight gain–a wacky combination. Wonder if the lyrica wouldn’t be better for us?
      Good luck on those nerve tests. I’m glad you got to see the neuro…..and got the good news you needed to hear. I’m so glad to hear you don’t have cidp. Maybe your down time is because you push too hard during your good time? Here’s a huge hug.
      Emma

    • August 8, 2008 at 7:53 pm

      The Cymbalta so far is okay. No side effects except the usual sleepiness. I am ony on 30mg, the dr said it that works great, if not we can try 60. I am hoping 30 will do it, seems that side effects and such kick in at 60 and get worse higher up. But, I am feeling less pain today than I was yesterday. I just hope the sleepy/slightly dizzy/empty head thing goes away FAST!

      Emma- it is good to hear you are seeing a new dr. I sure wish you luck and hope things get better for you (for all of us)

      Jan- one of the side effects of zoloft is muscle pain and weakness. I assume it would hit early on, but then again ya never know. I had tried zoloft years ago and I did great on it. But not after GBS.

    • Anonymous
      August 9, 2008 at 9:14 pm

      Hi! to all and a hugh hug to all. Fairly odd mother I am sooooo glad you got good news at the Dr. and are starting to feel better. I know I read it has been only a little over 2 yrs. since your diag. Is that true? Are you able to walk on your own and have you always been able to? I walk with a rollator, I cannot drive and have to depend on others to go anywhere.

      I too feel like all I never say is how bad I feel and I know my family gets tired of hearing it. When I’m out & see friends, they say you look GREAT! :p Don’t I wish they would have to walk in my shoes. I’m sorry if that sounds bitter but you all know exactly what I mean & how it makes me feel to hear “you look GREAT!”:rolleyes:

      I take Zoloft & who knows if I have side effects! I am on so many meds the only thing I have noticed is the weight gain, sided effect of lyrica & emuron.

      I am really enjoying reading all of your posts & can so relate to you all & wish you sall well.

      Cathy:)

    • August 9, 2008 at 10:39 pm

      Hi Cathy

      Yep, only 2 years since I got sick. I stayed on my feet somehow the whole time. Even when it felt like I couldn’t lift my feet, I somehow was determined not to let it take that from me. I even drove short distances when I felt up to it…probably shouldnt have, but I was taking care of myself, 3 kids, hubby and my mom so someone had to get things done. I used daily activities like dishes and cooking and showering (not sure how I did that even!) as my own form of physical therapy and remember when I realized I couldnt do it all myself. I cried when I finally had to ask for help.
      Other than pain, discomfort, fatigue, and occassional weakness I am more or less fine now. I get discouraged and feel worthless sometimes, and it is hard for people to understand what I deal with. I mean, for the most part, we look perfectly normal. And, some days I can go like a bat out of heck cleaning and having fun with the kids and doing errands. The next could be a totally different story, or I could have a few good days in a row. It’s a crap shoot really.
      The doctors input really put me in a different place mentally. I am feeling more positive now, not worrying about a relapse or the chronic form. I also don’t fully accept that this is all there is, I still am mentally concentrating on healing. We will see how I stand next year at this time. I know that things may very well change the older I get, but at 38 I hope that is a long way off. I want to play with grandbabies! This whole journey and experience has changed me…and not exactly for the worse. I have come to realize that my family adores me, that I don’t have to be superwoman to prove my worth, and that slowing down is a good thing. I miss some of the things I was able to do before I got sick, I miss being able to run around and be active with my kids. But, I am able to do the household errands (do look forward to my oldest son getting a car and his license so he can drive me around when I need it), walk up and down our stairs (sometimes it is a chore, but I manage to do it), keep things clean (kids help by doing chores), take care of our small garden, go for an occassional walk, and enjoy the beauty of life through my camera. I am blessed in spite of my residuals. I am also very glad I can come here to vent on bad days, offer advice or opinions to others, and share with my family. Because everyone here totally gets it and totally understands.

      This is my 3rd day on Cymbalta. Only a small amount of pain and have enjoyed it. The only problems I have still are a little dizziness, a little nausea, and am intensely thirsty!! I did have a hard time getting to sleep last night, but not sure if the slight dizziness will be okay for day time use. Hmmm….
      I also had some chest pain but it hasnt reoccurred. Will call the dr on monday and ask about it. Oh and the twitching is only slight now! Is it too soon to think this could be actually working for me?

      Lots of love and more hugs for beautiful days.

    • Anonymous
      September 1, 2008 at 12:32 am

      The cymbalta 60mg worked for me the very first day I tryed it. Yeah, I too was surprised at how fast it started to work…No question about it. I take a 60 in the morning and a 60 at night. It has been about a year now since I have been on it. No side effects as I can tell. LOL I am like someone said here earlier…..”I am on so much medicine I would not know what is causeing side effects and what isn’t”. Well, maybe not the exact words , but the meaning is the same. lol. God bless all my friends on the forum.

      The Drummer

    • September 5, 2008 at 2:06 pm

      Hi Lori, if Im very tierd then I get this twisting thing, in all my body, we are on same age in onset so I think we are still getting better it takes time as we know, and every set back can make us nut. But somtimes I think it is just to make us remeber that we have got this damm thing and it is warning us to take care of our body πŸ˜€ Im starting to work full hours now and I have hard time sleep becouse of all the twisting and the burning pain I get when I slow down. Over the day Im like Im in tied socks on my feet even though Im not in any socks it all.
      xoxoxoooxoxo