New to this forum – question about restless legs.
AnonymousJune 27, 2006 at 6:59 am
I am so glad I found this Forum and am able to read so many wonderful stories of recovered GBS patients. It really means a lot to me.
I am 20 years post GBS and must say I recovered very well although I had a bad case of it. I was totally paralyzed and on the vent for 10 days but I recovered very quickly. 6 months after the onset I went back to work full-time and I could carry out all my former activities!!
2 months ago my mother was diagnosed with GBS Because she saw what happened with me 20 years ago she immediately told the doctors she was sure it was GBS. Therefore they could start the treatment immediately and she could leave the hospital after 2 weeks!!!
The only thing which annoys me is the fatigue and the pain in my legs.
I was adviced by my GP to go to a sleep clinic to have the quality of my sleep examined. The diagnosis was that I get no deep sleep because of contractions in my legs, they measured up to 300 movements per night. These movements cause you to wake up and explain the fatigue.
I will now be given a drug to treat with these problems.
I was just wondering whether any of you post-GBS’ers are also having this restless legs syndrom and what you did(do):) about it?
AnonymousJune 27, 2006 at 8:39 am
Welcome Annie! Congratulations on the 20 years. And we are glad to add you to “The Family” 🙂 Neurontin made the difference for me. The first few nites I slept like a baby! Also, I do acupuncture and that combination makes a world of difference. Since each of us presents with little differences, it seems to be mostly “trial and error”. Good luck.
AnonymousJuly 1, 2006 at 10:52 am
Hello: It’s been almost 8 years since I had GBS.
I too have the “restless legs” thing going on. So much so at times my wife has to sleep on the couch.
I told my GP about this and he perscribed “Sinemet’
I was told this is a drug used to treat Parkison’s diease.
AnonymousJuly 1, 2006 at 1:26 pm
Hello Annie…good to meet you 🙂 I’m Jenny from Everett, Washington.
I am also… new to the site.
I also had GBS a while ago (1989)…kind of like you…..hospitalized……12 days on vent….3 mths in the hospital. I amazed the Dr’s….after giving me the last ….(I call them “shock” treatments) they said I would not walk for 18 months to two years. Well I have the “Great Physician” (God) he had other plans for me. 😉 I was starting to walk (with the help of a walker) about 6 mths after onset. PTL!!!!! and He will NEVER leave me!!!
I had no idea there was support for GBS….I wish I would have researched years ago…..but, did not have a computer then.
I too suffer with restless legs at night….mostly from over-doing. Standing too long for long periods. I have also had problems with feet swelling… on and off. Noticing more lately…..even up into the leg. Do you have anything like that? This is a very strange “Syndrome” ….It left me with some things I still have to work with…..like numb feet (broken some toes…from walkiin’ into things) I have to watch where I walk. For exercise…I do better on a treadmill…than walking outside.
It is good to have all this info…and support….even after all these years.
I have not taken any of the meds they have mentioned in other posts on here….but I so get up and take a couple Tylenol. My feet ache…most of the time. A good foot massage ….works wonders 😀 ….if I can talk one of my family members into it 😉
God bless and keep you
AnonymousJuly 1, 2006 at 2:38 pm
Just to add something here, through my years of experiance with this, just because a leg is restless at night, does not make it a RLS diagnoses. Nor, in some cases, even comes close to connecting to RLS. I first look at what might be causing these movements. When sleeping, obviously the body is still being controled by the subconcious. What I discovered was that is was pressure causing my legs to be restless. Roll over to side and now have one leg on top of the other, as an example, at first it feels comfortable and painless and I get to sleep, but a half hour later, because just the one leg on the other, over time, brought out pain in those areas, subconciously, my legs were being moved around to rid said pain, and not finding it right away, woke me up numerous times during a night. If you were to put a camera on it all night, it would look just like RLS. Now, I’m probably more sensitive to pressure then a lot, but if there is pain in the legs already, then it could be degree, or length of time, bringing this stuff to the surface. I feel pressure pain in under 10 minutes when a body part is resting on another, but someone else might take 2 hours to bring that to the surface, waking them up, and then feeling they can’t find any position to make their legs comfortable. Consiously, you’re looking for a comfort zone, ie. legs in motion, then asleep, subconciously, the same thing continues. Once the body has been on pain meds for awhile, there will always be a level in your system. You can take them throughout a day to maintain that, but one way I found to help the sleeping and leg thing, was to take my morning intake, then hold off for any more until 1 to 2 hours before bedtime. I noticed no increase or decrease in discomfort during the day, and by getting that maximum stength dose close to bedtime, it started getting me more sleep, until I was sleeping all through the night. Something to think about before you subject yourself to office visits, tests, and time and financial hassles. Which usually all boils down to ‘take this’ and see if it works. As Jenny stated, just the standing, and basically using of legs for us that have greater residuals to deal with, will tighten and cramp up muscles no matter what is done, which contributes to this issue. Whatever a person does, if relief is obtained, then that’s the only bottom line.
AnonymousJuly 7, 2006 at 3:27 am
I have to say in the 17 years that I have been living with it I have never had any restless leg problems. I just can’t say on one side or my back for to long because everything goes numb and I have to wake up and move to get the feeling back, and that is something that has happened ever since I got GBS. Would rather have the restless leg to tell the truth.
AnonymousJuly 24, 2006 at 7:34 pm
I am was also diagnosed with GBS in 2006. I still have balance issues and can easily be knocked off balance. I have broken my foot because when I start to fall I can’t recover my balance. Tow years ago i mentioned to my primary care doctor that I was having problems with my legs and couldn’t sleep. she sent me for a sleep study and I was diagnosed with restless legs sydrome. She prescribed mirapex which is a drug for involuntary movement and is used for Parkinson patients. It works but I have to keep increasing the dosage. When I went back to my neurologist he mentioned the connection with GBS. I also am starting to have problems with my jumpy legs during the day. I try to stretch and sometimes it works, and other days it doesn’t. When I need to fly I take ativan and it helps. At least I am not alone, it seems like many of us have this condition and thanks for all the ideas.
AnonymousJuly 25, 2006 at 7:07 pm
Welcome! Glad you are doing so well.
I was interested to hear that your mother also had GBS recently. Do you or your mother know what was the trigger for either of your GBS episodes?
From what I’ve read, it is fairly rate for first degree relatives to both get GBS.
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