Helga
Your Replies
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November 12, 2008 at 6:26 pm
Im on neurotin 3600mg but I found out other way to ease my pain in my feet and hands, I take Calm from [URL=”http://www.petergillham.com/product-line/peter-gillhams-natural-calm.php”]http://www.petergillham.com/product-line/peter-gillhams-natural-calm.php[/URL]
this have had a wonderful affect on my pain, speacialy in the evening when Im so tierd and my hands and feet hurts like hell. I learn this from a guy that lost his finger and he has constant nerv pain like us. It is like the magnesium has good affect on this, if Im bad I take 3 tsp but I try to take one in the middle of the day to make my live little better when Im working.
Hope this can help some oneSeptember 6, 2008 at 6:04 ammuch milder, I did not paralized then I one was weak in all limbs, I think how quickly they gave me the IVIG saved me.
xoxooxoxoSeptember 5, 2008 at 2:22 pmI got it two times with one year between, it maby was relaps but I was on IVIG the second time too. and the doc said please not more of this 😀 enough is enough, Im the first pathient in Iceland that have been having this 2 times, but then we are only 300.000 that live in Iceland;)
xoxooxooxoo[quote=crlyn324]It is sooooo rare to get it a 2nd time. Lucky me….
I am scared to death of getting it a 3rd time, I really wish more studies could be done about GBS!!
It really is a scary syndrome![/quote]
September 5, 2008 at 2:17 pmSame 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.
xoxoxooxoxox[quote=boomerbabe]Smiley,
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.
Susanne[/quote]
September 5, 2008 at 2:06 pmHi 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 😀 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.
xoxoxoooxoxoSeptember 4, 2008 at 6:22 pmIm with out words, you are so wonderful man and so full of inspire for us all here, I miss you alot. Love and hugs from Iceland
September 4, 2008 at 6:15 pmIm working my ass of like always but now my hubby tell me to stop and I put some remind in my cellophone when to eat and take pills:D
Im learning to use my feet and hands as they are. It is balloon walk with needles and pin and somtimes very much pain in my joints. I think it might be my osteoarthritis but who cares:D pain is pain.
I have travel alot this summer and loved it a lot, here is picture´s of my traveling this summer, here is the link [URL=”http://www.tofraljos/ferdalog/”]http://www.tofraljos/ferdalog/[/URL]
I had great wist here in Iceland, one of our member came to Iceland and I met him and his wife, his name is John and his wife is Sandy, it was wonderful to meet theim and I did not feel so alone seeing and talking too theim both. My hubby likeded much to see theim, and we wish we could have more time with theim. This was one of best time I have had since I got onset, I wish I had meet some one while I was sick, becouse you feel so good to have some one near you that have this same thing and have done so well through the years, even though things are not like it was before onset.
well enough of the babling, I have been reading the forums and I welcome all new members and hope they can find some help in this wonderful forums that have help me so much getting through my GBS
xoxoxoooxoxoxSeptember 4, 2008 at 5:57 pmYou are overduing your self, I know it my self from my exspirent that if you work tomuch you get this pain and you dont know how to keep on. Im on gabertine and it take the edge of the pain I have in my feet and somtimes hands. But my doctor gave me sleeping pills so I sleep at least 4 hours at nights. before I got it I only sleept for 2 hours max, and worked as much as you and was trainging also. My hubby try to stay on time that I dont forget my self and over due my self. I run a candleworkshop and somtimes I forget time. Now I did put in my cellophone time to relax and eat, and do little walk or some exercise. I feel lot better with this. Evening and morning are worst part of it. Going to sleep with the cramps and the pain that makes my body go in waves, and going up in the morning feeling the pain when you put your feet down. But never give up, every day is new hope that things get little better.
xoxoxooxoxxoSeptember 4, 2008 at 5:42 pmWell it is almost 2 years now since I was onset of GBS and I still have needles and pin and I also feel like Im walking on balloon so Im always like Im little drunk when I walk. I use crutch when Im in crowed so I dont fall over. I have not good balance. It have not change since June so I think it will not be better, I think when you get older your body dont have the engery to repair it better. But Im glad Im up and going. I think that when your grandma gett tierd then she feel this concreat feeling, I do somtimes and then I just go and rest. that is the best way. I hope you grandma gets little better each day, she and people around her may not notice but in long term you learn to use what you have and after few months you will see that she is better then she was.
June 10, 2008 at 4:26 amIm waiting for my balloon under my feet goes away, I was not given any hope after my last relaps, but my numbness have gone to the middle of the calfs so Im pretty sure I will heal more. but if I have to have the balloon under my feet, then Im just going to enjoy it 😀
June 10, 2008 at 4:19 amI have no feelings for if I get cold in my feet, my son say somtimes that Im colder then the frigerator. so I cant give you any addvise about this, I get feet pain when Im tierd and dont get my 10 – 12 hour sleep, and now Im not getting this sleep, becouse of somthing I dont know what, maby the earthquake that we got 29 of may have couse that I sleep only few hours, most 4 hours at the time.
But for the nerve pain in my feet I use neurotin, and it works fine for me.
xoxoxoxoxo
HelgaJune 10, 2008 at 4:12 amIm starting to feel better and my numbness in my feet is from middle of the calfs. and my hands are still numb, but I can walk, I have to think each step but Im starting to get faster and that tells my my mind and feet are starting to talk together.
I got some stumac flue in begin of this month and dont seems to get over it, doctor´s are scear I get relaps from it. my feet have got havier but what a heck if I cant get little flu, my hubby is on his neddles and pins, very scear about me. I try to have as normal life as I can but somtimes Im so tierd that I cant work like I want to. And doing all the fine job in my candlemaking makes my nuts, my hand is so clumsy, but with practise I get there somday.
Like we say one day at the time, it seems to me forever, I did not thought when I got GBS first time it would take such long time to get normal again, but Im still not normal and I think maby I have to stay like Im forever. But if that is the case I will learn to live with it and respect that and make life beautiful with me like I´m
here is a link to a album about my family if you are intresting in what life is in Iceland
[URL=”http://www.skrifa.com/bill/album/index.html”]http://www.skrifa.com/bill/album/index.html[/URL]xoxoxoxoxo
Helga from IcelandFebruary 14, 2008 at 2:49 pm(((((((((((((((((((()))))))))))))))))))))) from Iceland, I understand you so well, I could do this same, 24/7 we hardly see sun at this time so why bother go up.
xoxoxooxoxoxoFebruary 14, 2008 at 2:44 pmpgilroy, lucky bastard *LOL*:D Im a gym rat too but Im still dealing with all kinds of residuals, but Im getting more and more strength, but pain and heavy legs and arms are well comon in this home. I try to exercise at least 3 times a week at the gym I have work out things here at home, I have not used that much since my last relaps, My time to recover between exercise is around 24 hours and that is too long, Im very stubern and I go always out in the limit, when I want to throwup up then I know Im on my eged. And that heppens alot, why I want to get better and I know if I dont keep on nothing will gain. But this is too much and I would not say this was the right way, and my body says this is more enough. My hubby is very cleaver when comes to keeping me home when I have over done my self, then I sleep alot, and he dont wake me up until my time with the therapy is over, and say sorry dear I just forgot you had a session today *LOL* so he save me.
February 9, 2008 at 10:35 amI could not be more agree what you are saying ghostbear. Im only just one year old of GBS and I got relaps in Dec last year. And I was back to same spot as I was many moths ago. I have my drop foot and I have trouble with my balance, I throw the crutch away as soon as I could, use theim only if Im in lot of crowd. My therapyst wanted me to hold on to theim longer but I dont see any improvment if I use theim. I try to have wall or somthing that I can depend on if I feel that Im falling, see if I fall I cant stand up I have no reflexion to help me up. I have no reflexion in hands or feet, what I try to make better is my back, and legg muscule to help me. I think we have to find out our self how we can deal with life with our resudat, nobody can help you there, and one day at the time is the best way. Sorry I could not help you Vicky but this how I does my things, And I throw the Abs long time ago, they was only to hold back on my progress.
xoxoxoxoxo
Helga
