recovery or relapse?

    • Anonymous
      August 26, 2008 at 12:10 am

      I’ve been having that tightening around my ribs and back alot lately. And the tingling/buzzing/humming in my hands and feet is spreading up to my elbows and to my thighs. The Gabapentin helps but it is wearing off too soon. I called my neurologist today to discuss this, I’m not scheduled to see him til November unless I need to see him sooner. So he said the tightening around my torso could be muscle pain and he is trying me on Baclofen 10mg 1x a day for a week then increase it to 2x a day for a week, then 3x a day if needed. He stated that the humming is probably the nerve endings trying to come alive. But both the muscle tightening and the upward movement of the humming could mean recovery or relapse… He said to call him in two weeks after I’ve had a chance to try the Baclofen. You should have seen my hubs face when I told him my conversation with my neuro. I almost cried. ๐Ÿ™ Poor guy. Any thoughts or comments are most welcome.

    • Anonymous
      August 26, 2008 at 5:06 am

      I have had simular problems too. Took my neuro 3 weeks to do a referral for me to get into Duke. Have no idea what he placed down but am upset due to a waiting period at Duke. Seeing my regular doctor today and going to have a long talk. My neuro has not even done a spinal on me either. See him Sept. But am going to ask my regular doctor to get me in to have one early. I feel for you. Really do! He might be waiting to see if this medication helps. With this nerve damage stuff. Sometimes they play it by ear and see if improvement happens or relaspe. Keeping you in limbo! I know how that made you feel. Very hurtful to someone that is sick or has someone sick. I just don’t see any human compassion anymore like I used to! Go the the ER and did this past week and they came out yelling ” 385″ Number 385! I turned from Linda H into Number 385.

    • Anonymous
      August 26, 2008 at 10:23 am

      Hey there Smiley. I can appreciate your stress. I have no idea if this is a relapse or recovery. But I do remember having issues too and calling the physician in fear because the “symptoms” were returning. He was very reassuring and his first question was “Have you been overdoing it? Are you resting?” and of course with four young kids, you know what the answer was!

      Follow his advice and give the meds a try, but if you become concerned for any reason over the next couple of days, be sure to get in and see the doc. If you read some of the other postings, you will notice several people have mentioned the tightness around the chest. Some suggest it is due to being on a respirator. Not sure if you were. But those are muscles that can be affected as well and so they may be tired and such from just your day to day activities.

      Take care and keep us posted.

    • Anonymous
      August 26, 2008 at 10:53 am

      Thanks LindaH385 & jan’83, I am guilty of overdoing it… I get a burst of energy and want to be outside gardening. Or anywhere besides inside the house. Luckily, I wasn’t on a respirator. But I’ve been reading the posts about people describing the tightening band around the torso area and was surprised that they were describing what I have been feeling for a couple of months. I’ve been taking it one day at a time, will continue to do so. I didn’t see any difference in taking the Baclofen yesterday, might need to get it into my system a few days (like trhe Gabapentin) before I see some relief. Have a good day and thanks again!

    • Anonymous
      August 26, 2008 at 5:59 pm

      You sound like me! When I do get one good day I am running around my home trying to catch up on things. Then I get a relaspe of over pushing myself! I’m trying! I really am trying but when that body say’s no, it means no! So we have to listen to what our body says and go by the rules. Hard to do too! For I like to live my life and hate being sick! If I had my health again, I would be out helping others and doing good deeds. Hope you feel better soon!

    • Anonymous
      August 28, 2008 at 7:04 pm


      Every time I read a thread I see myself. I too get tightening around chest. Scares the daylights of me. Also muscles ache around ribs and in upper back. I have always had this to some extent since having GBS. I have come to the conclusion that GBS never really leaves your system. It flares up when you are tired, ill, stressed, etc. This is only my opinion but I have dealt with this for 32 years now.


    • Anonymous
      August 28, 2008 at 8:25 pm


      I’m with Susanne.

    • Anonymous
      August 28, 2008 at 10:45 pm

      Smiley, Rest,Rest and more Rest!!! Your body is talking to you, actually screaming to you, to slow down and let it rest. Relapses are brought on by over doing and not listening to the body. I should know, been there and keep going back all tooo often:o The band is tired muscles and nerves not working properly to keep up to the muscles. The buzzing is your nerves trying to keep up with you, your muscles aren’t responding correctly to the mixed up nerves. Those are 2 big signs that you are over doing. I’m not saying you have to stop everything, I wouldn’t listen to that stuff either, I’m just saying do it slower, take alot of breaks and drink plenty of filtered water. I am very similar, let me outside and let me go, until I over do it and end up on the couch not able to move for a few days. Its a limit thing, unless you are like me and can’t feel your limits until its too late. Find the point of when the band is really noticable and make a mental note of what you could do before that point. When you find that point the next day, you will know what your limit is for the time being. After you get to your limit, make sure you stop and take a rest, in a prone position, and see if you feel better after that rest. You can always test your limits(not daily, I advise against that;) ) to see if you can up your limits. Its better to take a little longer weeding your garden, than to have to stop, recover because you relapsed, and then have to start all over from the beginning a month or 2 down the line. Its really important to take into account all that you do from the moment you get out of bed to the moment you get into bed, to figure out your limits.
      This is the info that Gene shared with me during my first few months. It hasn’t failed me yet.:)

    • Anonymous
      August 28, 2008 at 11:53 pm

      I have been wanting to get physically fit since I had my back surgery in May and that too is hard to do! Hate not being able to exercise due to getting relapses or over exhastion. Right now I’m still trying to get well and have no idea how long that is going to take. Maybe some bed exercises and chair exercises. Will figure something out. Wish you good luck soon!

    • Anonymous
      August 29, 2008 at 8:57 pm

      Hey Cheryl, Susanne, Jan and Linda, [B]Thanks [/B]for the info and advice. I will try and rest more, I am guilty of “pushing it”. The Baclofen 1x a day has not helped. On Monday I can up it to 2x a day. My hub and I traveled to Bethany Beach, DE, Thursday late afternoon. He drove and I slept most of the way, went to bed at 11pm and then slept til 10 am this morning. I guess it caught up with me. I am feeling very shakey and buzzy in my limbs. It’s just so depressing to think I’m gonna be this way forever. I think that’s why I push myself, if I’m busy I don’t think about what’s happened to me and I’m happy. When I “give in” to my body and rest, that’s when I have time to dwell. I am also dealing with some stress, my mom is losing her battle with cancer. She is my best friend, sounding board and advisor. When I became ill, she started to lose the fight and is now bedridden and is unable to communicate much. I miss her greatly even though she is still with us. It’s hard to see her this way. She would absolutely hate to be the way she is right now. My dad and I were her caregivers before GBS, now my dad has the whole load and it is tearing him up…oh well. Maybe I can chart my limits, like a log book of my day. Gene gave out good advice, thanks for sharing it with me. Now who can I get to kick me in the butt to make me follow it ๐Ÿ˜€

    • Anonymous
      August 30, 2008 at 9:32 pm

      Your symptoms & pain are so familar. Its like I was writing your orig. post on this forum. That heavy band feeling is there especially when I have over done. But boy is it scary. The tingling/numbness I have all the time 24/7. It has never gone away. Sometimes at night the pain is so intense I just lay in bed & cry, is this ever going to end?:confused:
      One thing about the Beclofen, Do you also take Lyrcia? I know we are all different but when theY put me on Beclofen 2x day & the Lyrica I had a horrible reaction SO PLEASE BE CAREFUL!!!!!:)
      Please rest and listen to your body. Do you work. I have not worked since diag. 4/07. On SSD now and probasbly forever who knows!:(
      Hang in there & heres a big cyber hug for ya!:)

    • Anonymous
      August 31, 2008 at 12:11 am

      Hi Cathy, Thanks for the input. I am not on Lyrica. I take Gabapentin 1800mg a day and Alprazolam 1.5mg a day and now Baclofen 10mg a day but will up it to 20mg a day on Monday. I also have to take an asprin 325mg a day and started Plavix 75mg a day (I was on coumadin from Oct 07 thru July 08 bc of blood clots that started in my left calf that zipped up my leg to my lung) Is Lyrica similar to Gabapentin? I do have a sensitivity to meds, hopefully I will not have a reaction. I specifically said to my neuro what meds I was taking and he said Baclofen would not cause me a problem… I have not worked since dx 6/07 and was granted SSD 3 months ago. I am a secretary and I can’t type the way I used to, my hands don’t work well – I now hunt and peck. I also tire very easily. Social Security’s doc said I am as good as I’m gonna get. So I too may be on SSD forever ๐Ÿ™ Thanks so much for the hug. It was very welcome and I am sening a cyber hug to you! Take care!

    • Anonymous
      August 31, 2008 at 10:13 am

      It sounds like we are both in the same boat. My diag. was just 2 mo. before yours. The last neuro I went to for a second opinion, Dr. Kincaid @ IU Med Center, told me that I had the rare acute sensory neuronopathy and where ever I was at 18mo. post diag. is where I will be the rest of my life. So that will be in Oct. Boy! would I like to prove him WRONG!:p
      Try to listen to your body & don’t overdo. It is so hard I know. I was a constant on the go person. I sometimes worked 12/16 hr. days to or 3 days in a row & now I’m lucky if I can wash a few dishes without being blown away.:rolleyes:
      Good Luck Honey and take care of yourself.
      Heres another cyber hug for ya!:)

    • Anonymous
      August 31, 2008 at 1:22 pm

      Smiley, first off, I am sorry about your mom. It is so hard to see those we love suffering. I will pray for you. Secondly…let me be the first to kick your butt! ๐Ÿ˜€ And in return could you kick mine? ๐Ÿ˜ฎ

      I am like you in that when I am busy I don’t think about the zips and zings and tingles, and buzzes and whatever that are going on but sure do when I am quiet. So I get it that you push yourself. But I know it is not in our best interests… let’s keep reminding each other!

      Have a great day.

    • Anonymous
      August 31, 2008 at 1:51 pm

      Hmmm, I was outside trying to strip paint off two small metal milk cans and as I was bending over to rinse out the cans, BAM, I felt like I needed to sit down quick. Thanks Janet for the reminder, I must have felt that cyber kick in the butt ๐Ÿ˜€ I laid on the recliner outside for a few hours resting and soaking up some sun. We are having a beautiful day and I’m ready to go back out and enjoy it. I’m trying to rest,rest, rest but I’ve got busy-brain. Thanks for the prayers and well wishes Janet & Cathy, right back at ya! Hope you are having a good day!

    • September 5, 2008 at 2:17 pm

      Same here, I was not in respirator but this feeling is bad, I feelt it when I got sick and I was told this was one of the symtoms, and this have not gone away, always if I go over my limit it comes speacaly when Im lying down.


      Every time I read a thread I see myself. I too get tightening around chest. Scares the daylights of me. Also muscles ache around ribs and in upper back. I have always had this to some extent since having GBS. I have come to the conclusion that GBS never really leaves your system. It flares up when you are tired, ill, stressed, etc. This is only my opinion but I have dealt with this for 32 years now.


    • Anonymous
      September 8, 2008 at 6:38 pm

      was in the hospital a couple of weeks ago because the sympoms were returning. had a spinal.. no sign of virus so dr decided it must be a relapse did nerve conduction tests permanent nerve damage in my legs no test done on my hands.prognosis can have flare ups (ihad a stomach virus earlier in the week)and will have to wear AFO’s the rest of my life. what i have gotten back will probably be it still numb from chin down.needless to say i did not handle the diagnosis well spent the following week in the psychiatric part of the hospital and am now back into head therapy weekly and doing physical therapy with my afo’s. any advice?amy

    • Anonymous
      September 8, 2008 at 6:46 pm

      Amy, hang in there. We are all behind you 100%. Come here and vent any time. We have all been there, and know how hard it is to accept what we are given (or have had taken away!) by GBS. You are doing the right thing by getting help mentally. A lot of us have PTSD type symptoms and or depression following this illness. It is so hard emotionally as well as physically.

      Amy, when did you originally get sick? It takes a long time for some of us to recover. There are people on here who say two years later they are still getting things back. Don’t give up. Do you have any specific questions we can answer for you? That may help.

      Huge hug to you.

    • Anonymous
      September 8, 2008 at 10:29 pm

      Hey Amy, hang in there! I have a call into my neuro. I am still not feeling well. Feels like I have a corset on under my skin and it tightens and loosens, from my whole back and the left side of my neck to my front aroun the ribs. Usually by the early evening it is so tight it feels like between the bottom of my breastbone down is pushed out. Neuro had me try Baclofen and I’m starting week 3 and upping the dose to 3x a day. I sure can understand you getting head therapy (cute description). I feel like I could benefit from some also ๐Ÿ™ I’m a year out this past June and the great folks here have been dealing with it for years, don’t know about that… I know there is hope. Let’s keep the faith together!

    • Anonymous
      September 9, 2008 at 10:35 pm

      Hey Cathy, just re-read your post here and saw similar info on another thread about the “18 month” your as good as your gonna get dx from the neuro. When I went to see the SSD doc in March, I was only 9 months out and he said I was as good as I was gonna get. I cried and called my neuro from the SSD doc’s parking lot ๐Ÿ˜ฎ He called me back later in the day and said that’s good ๐Ÿ˜ฎ , the SSD doc is on your side but that doesn’t mean he is right. So, I take it one day at a time, sometimes 2 steps forward and 3 back. Sometimes a baby step forward with progress. But it’s quite depressing to hear the “good as your gonna get” dx ๐Ÿ™ !

    • Anonymous
      September 10, 2008 at 4:52 am

      I wonder what causes that buzzing, vibrating, tingling mess. That is what I get all the time. Wake up to it, go to bed with it. Is is nerve damage going on also? It just makes me wonder. But Smiley! You sound like me! I am constantly trying to keep my mind busy. And sometimes because I overdid it. I pay the price several days afterwards. ๐Ÿ˜€
      So sorry to hear about your mother. My father passed away 6 years ago of a brain tumor and loosing him just about killed me. I still moarn over his death today and doubt I will ever get over it! So I wish you my best and hope things get better soon! Hugs

    • Anonymous
      September 10, 2008 at 6:13 pm

      Hey Linda, thanks for the hugs and well wishes. Sending some back atcha:)
      I’ve really already lost mom since about March or so. She is bedridden and now doesn’t know me, even though I visit everyday during the week. She was a big football fan and every Sunday, she’d be watching at her house and I’d be watching at mine. We would call each other about 20 times during the game to cheer or moan about plays. This past Sunday, the Ravens (my team) played the Bengals and Flacco our baby QB started a beautiful reverse end around. I love dipsy-doodle plays. I picked up the phone to call mom to whoop it up and dad answered, just for that one sweet moment I forgot mom is no longer mom. Dad isn’t a football fan but did see the play and humored me a bit but said he was going outside, haha. After we hung up, I cried because although mom is still with us, I realized that special bond I had with her is gone, my best friend is gone ๐Ÿ™ So it really is a godsend that I found this website. It’s an extended family that informs us, supports us, urges us on and cries with us.

    • Anonymous
      September 10, 2008 at 6:58 pm

      hey smiley, beautiful story! I can tell how much you love your mom. It must be difficult. As I said earlier, will keep you both in my prayers.

    • Anonymous
      September 10, 2008 at 9:06 pm

      Thanks Janet, I surely appreciate it!

    • Anonymous
      September 10, 2008 at 9:51 pm

      Smiley, I can’t imagine what you are going through with your Mom. I only had to go through that cancer situation with my Uncle. I was close to him but its nothing like a Mom relationship. In a way I know how it is to lose someone close to you without actually losing them. I lost a close relationship with my Dad, he beat the odds this year by coming back from a massive heart attack, but he really isn’t back mentally like his ol’ self. Physically he is doing ok, still doing cardio rehab, but he probably will never get all his great personality back to 100%. I miss that alot. I’m not giving up on him in anyway, but just wish he could be back 100%. I’m really happy he cheated death and is still with us. My Prayers are with You and Your Family. Take Care.

      My Mom and I have the football thing also, I go to their house to watch the game, and we drive my Dad crazy, he always roots for the opposite team then us;)

    • Anonymous
      September 11, 2008 at 10:31 am

      Thank you Cheryl! Prayers and well wishes are sent to you as well.

    • Anonymous
      September 11, 2008 at 11:47 am

      Smiley, I am sending a huge hug plus that kick in the butt-Jan was the only one to give you.:D
      I think sometimes we tend to push our doctors to answers we want to hear and they just aren’t sure–goes back to that” you’re as good as you’re going to get.” Remember we all react differently, so do we get it all back? Probably some. Do we all overdo on a good day? You bet we do. Learning that balance act between overdoing it and rest when you’re tired, is what we all want for ourselves. The stress with your mom likely adds to your pain. I know my stress does. And yes I overdid it yeterday, so you can kick me in the butt too today.:) Take care Smiley…….Emma

    • Anonymous
      September 11, 2008 at 3:43 pm

      Geez Emma, I’m beginning to think those cyber kicks in the butt work. I was outside in the yard, bending over in the garden and doing too much, when bam I straightened up and came inside to rest ๐Ÿ˜€ Thanks for the reminder and here’s one back at ya!
      Thanks also for the bear hug, much needed. Saw mom at lunch time today, I’m sad to say I don’t know what to say to her. Her replies are almost non-existant or aren’t related to what I said or asked or you just get a “yep” from her. I picked up her hand yesterday to hold it for a bit and she said, that hurts ๐Ÿ™ But today when I said hi mom, she wasn’t looking at me but said hi babe, which is what she normally would say. It’s a sad thing.
      Wishing you well!

    • Anonymous
      September 15, 2008 at 11:23 am

      Smiley, Just checking in to say hi. And to see how you are doing. The stories about your mom are so beautiful, and this is probably the time in your life that you could really use a big hug from her. Let me and everyone else give you the hugs-just close your eyes and feel them……….and keep going to see your mom–she knows you’re there–that’s what counts. I was with my mom when she died–everyone else had left the room or gone home for the night, and I had tucked my feet under the bed sheets with her and said, ok mom, it’s just you and me now-just relax Mom. She died a few minutes later. I sat there with her a few moments and just let the tears come, and in a bit, I called the nurses and told them my mother had passed away. She and I had done so much in our lives, that it seemed right how it ended. And those will be memories you will have-things are not quite the same now Smiley, but she knows you are there and these will be your memories later. I’d bet your dad apprecriates your coming. So take good care of you so you can be there for them. More stress I know, but later on, you will feel good that you were there. Trust me, you will……Emma

    • Anonymous
      September 15, 2008 at 11:13 pm

      Hey Emma, thanks for checking on me. Thanks for the hugs too. You are right I sure could use some hugs and reassurance that only my mom can give. I’m doing ok. The Baclofen 3x a day is taking some of the muscle pain away. Thanks for sharing the story of your mom, very touching. I am hopeful for a peaceful end for my mom. She is at Stella Maris (Hospice care facility) for a 5-day stay. Medicare will pay for a 5-day stay every month. Dad called me today after seeing mom (it’s a 45 min one way trip) and running errands, groceries, bank, etc. He won’t let me help. He just says you take care of you and get better, we almost lost you. Dad said mom was out of it today and was very pale. I’m having work done on my car, hopefully it won’t take all day so I can go visit her tomorrow. Hope you had a good day and a better tomorrow. Hugs to you!

    • September 16, 2008 at 12:37 am

      I haven’t looked at this forum for quite a while. I also get tightening around my ribs and back which I’ve noticed every so often from the time I got out of the hospital. I sometimes get a tight feeling in my feet like something is squeezing them. It has been almost three years now since I first got GBS. I don’t think I’ve ever had a true relapse but I have been left with long-term nerve damage especially in my hands and feet. Also I get muscle cramps easily which to me is a symptom of nerve damage. I never go to the doctor anymore nor take any medication. That just costs me money which I don’t have to waste. My biggest problem from GBS at the present time is that my feet ache pretty bad especially if I stand a lot. One just learns to put up with stuff. In any case I don’t think the tightening around your chest should be too worrisome. It is just something left over from your bout with GBS. For myself I am just thankful that I can function more or less normally even though I am not as strong physically as before I got GBS. I don’t agree that GBS never leaves your system. I think what it is that once nerves are destroyed or damaged then you are not quite the same again or at least any improvement in nerve function is very very slow. I don’t think your immune system continues to attack your nerves after you recover because if that happened one would be in terrible shape and would probably have to go back on the respirator. I think that when we have a relapse it is muscle fatigue caused by pre-existing nerve damage.

    • Anonymous
      September 16, 2008 at 1:59 am

      H Robert, I am sorry to hear that you also have the tightening around the ribs and back. I never mentioned it before, didn’t think of it actually, but I also have lots of cramps, in my calves to toes but mostly in my forearms to fingers. Especially when I’m trying to grab or hold onto something for a few minutes. Thanks for the information.