February 28, 2018 at 3:02 am #113960
Has anyone developed restless leg syndrome after GSS?
I know that I am extremely fortunate. I caught my GBS early and spent only 5 days in the hospital receiving IVG. The doctors sent me home and I’m just working through the symptoms of pins and needles, unstable walking and poor fine motor skills in my hands. I understand that this can take a while and I am humbled by how lucky I am compared to many others.
But this restless leg problem is so difficult. I wake up two to three times a night and have to spend an hour or so walking around to calm them down. Then I’m lucky if I fall asleep for for a couple of hours before it starts all over again.
Anyone else suffering from this? What do you do?
LisaFebruary 28, 2018 at 6:56 am #113962
I had this I feel like light massage and definitely time helped me. It’s so hard to recover when you can’t rest! When did you get GBS?February 28, 2018 at 11:28 am #113963
I’m almost embarrassed to talk about my GBS, as I read about what so many in this group are going through.
This past Feb. 14, I went to work after experiencing several days of increasing weakness and numbness. To get to my classroom on the second floor, I had to hold on to the bannister with both hands to make it up the steps. Just the day before I walked up with little thought.
A colleague of mine had GBS many years ago. She was telling us about it as we all talked about the severe effect the flu was having this year. Her experiences sounded similar, so I got onto the computer and looked up the symptoms. It was what I was going through, exactly!
A colleague of mine drove me to the emergency room and within 12 hours, I was X-rayed, MRI’d, spinal tapped and hooked up to my first course of IVG. I was given a room on a step-down unit where I was closely monitored and assessed every two hours. They also encouraged me to walk a lot, which was not easy, but necessary to keep my muscles strong. Every doctor, nurse, therapist etc. who came in told me how fortunate I was. Believe me, I am extremely grateful and humbled.
It’s now 14 days later and I am home after just 5 days in the hospital. Walking is hard, and my hands don’t work very well, but I realize how much better off I am than so many others. From everything I read, recovery takes a while. I really don’t feel much stronger, but definitely not worse. Being patient is difficult though!
Asking questions on this forum makes me feel almost guilty. GBS is so much milder with me than with most others. But if anyone can give me some ideas, some suggestions, I would really appreciate it. How do you decide when you can drive? Go to work? How hard should I push myself? There probably aren’t any definite answers to these questions, but I’d love to get ideas about how others have worked their way through this.
LisaFebruary 28, 2018 at 7:28 pm #113970
Definitely follow a healthy “diet”. WebMD says to get enough magnesium. (I had severe RLS as a child for whatever reason…being underfed? Anyway, I can relate to people who have it. It hurt so bad I cried…)
Your doctor should be able to help you with some of those questions. You’ll need to have them sign for a legal special parking permit to use until you can walk safely in public parking areas. I didn’t always use mine (saved it for bad weather or severe fatigue days).
Dr. should (maybe a nurse practitioner, etc) have input on work restrictions and any accommodations needed. Start working partial days depending on type of activity (sitting at a desk vs operating heavy machinery).
Fatigue has so many variables! Push yourself harder on days when you know you can 1)get home safely, 2)recover the next day (as in do little more than eat and sleep). You’ll get an idea of what you can tolerate, but keep in mind that no two days/weeks will feel the same, especially so early on in recovery.
Drink water. Stretch.March 1, 2018 at 2:16 am #113975
Hey Lisa. Don’t be shy to ask. Everyone is different but in the end its GBS even if you are lucky it’s not as bad as another. I thought mine was bad but I have read cases much worse then mine.
I have had RLS for years, before this GBS thing. Nothing really worked well for me but to get up and walk around. Now with GBS and being paralyzed that’s not so easy. My pain meds I’m on for GBS help some but not totally. I hope someone else can give you a better answer.March 1, 2018 at 6:51 am #113976
I’ve been taking Ropinirole for over 5 years for RLS. I began with 1 MG per day which was helpful but still left me often with a lot of discomfort. The dosage was increased to 1 MG twice per day. That’s worked for me. I still have an occasional uncomfortable night, but nothing like before.
EricMarch 1, 2018 at 11:28 am #113978
Thank you both. I’ll ask my neurologist about Ropinirole. A friend suggested adding electrolytes to my drinking water so I’m trying that too.
Terry, I am so sorry to hear that you are paralyzed. I hope you are on your way to recovery.March 1, 2018 at 11:34 am #113979
Electra, thank you for the great advice. You really helped me better understand how to work through this recovery.
Lol about the magnesium! While unable to sleep due to RLS, I’ve been researching supplements and spent way too much money online ordering magnesium, B vitamins, melatonin …….March 1, 2018 at 12:51 pm #113980
Over the last 2 years or so I’ve been taking 400 MGs of Magnesium per day. Additionally I’ve been drinking diet tonic water throughout the day, for its quinine for muscle cramping. Its been helpful but not to the extent the Ropinirole is for me for RLS.
I seem to get cramps in bunches. I’ll go 2 to 3 weeks in good shape, but, then a couple of days of countless ones. I think colder weather is a negative factor but I’m not sure. This has not been the perfect solution but it is much better than anything I know.March 4, 2018 at 6:37 am #113986
Thank you Eric. I went out and bought tonic water and a sleep supplement that contains magnesium. Hoping that it helps. I’d like to go back to work in a couple of weeks, but if I don’t get sleep, that just won’t be possible.
The next neurologist appointment is in 3 weeks. I may call before then about the Ropinirole if I have to. RLS is no fun.March 4, 2018 at 2:14 pm #113987
I am a wheelchair bound paraplegic since 2008 thanks to CIDP. The CIDP gave me a bonus form of restless leg syndrome. It’s a twitching, squirmy feeling in my legs. It is not painful, but extremely irritating. It can keep me from sleeping at times. My neuro had me on Requip (Ropinirole) for my RLS but it didn’t help me and I was experiencing some of the side affects from that drug, so I went off it.
What I found that works for me is a low cost over-the-counter homeopathic item called “Restless Legs Relief” from Magnilife. This works wonders for my RLS symptoms and usually starts working in about 30 minutes after taking it. There are always some that would say this is not a medicine. But, as far as I’m concerned, if it helps remove and/or reduce RLS discomfort it IS a medicine of sorts. I take it daily and it has worked consistently for me for a few years now.March 4, 2018 at 3:35 pm #113988
I looked for the product online. Do you know if they changed the name to “Restless Leg Relief”?
I’m sorry to hear that CIPD effected you so severely. How are you doing?March 4, 2018 at 6:41 pm #113990
Lisa, Magnilife changed the name to Relaxing Legs. I compared the ingredients to my bottle, they are exactly the same. You can get it on their website here:
https://www.magnilife.com/product/magnilife-relaxing-legsMarch 5, 2018 at 11:56 pm #113991
Thank you Jim. I just ordered a bottle. 🙂March 13, 2018 at 2:12 pm #114006
Honestly I take melatonin and it completely relaxes mine. I have also heard magnesium and tonic water help.
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