Night time is tough

This is still all so new but I’m finding the night particularly difficult. Lifting my feet is still really difficult so the process of climbing the stairs in the evening even with hubby’s help is daunting. As soon as I lay down, I’m more aware of the deep ache in my muscles and then the “shocks” start running in my legs. I have such a hard time getting to sleep and wake up often to physically change my position.
I know this sounds like moaning but I am very grateful that I’m in better shape than some.
Did it take others a while to get a nights sleep?

thanks for sharing. you don't sound like you are moaning at all.

Yes, hi, my name is Victoria Bischert and I also have GBS I go to sleep but my hand and arm wakes me up in the middle do the night so I know what you mean lol, I am 22 yrs old and I also have a twin sister but she doesn’t have what I have, I take Tylenol for it but, nothing seems to help right? Well if you take a heating pad with you at night and sleep with it, it helps because not only that I have it in my hands have it all over my body and my legs kill me at night too. But I hope that helps…

From kitkatt… With love

Thanks Rob



Scott Orn said:

thanks for sharing. you don’t sound like you are moaning at all.

Thanks Victoria, I will definitely try a heating pad, it also really helps knowing I’m not alone in this :slight_smile:




kitkatt said:

Yes, hi, my name is Victoria Bischert and I also have GBS I go to sleep but my hand and arm wakes me up in the middle do the night so I know what you mean lol, I am 22 yrs old and I also have a twin sister but she doesn’t have what I have, I take Tylenol for it but, nothing seems to help right? Well if you take a heating pad with you at night and sleep with it, it helps because not only that I have it in my hands have it all over my body and my legs kill me at night too. But I hope that helps…


From kitkatt… With love

November will be the two year mark for me since being diagnosed with GBS. I never crashed but was out of work for 4 months. Night time is the worse for me now. It does get better - the pain eases but it's still there. I have not had a good night's sleep in two years except when I take an OTC PM med which I try to avoid. My nuero said I have Carpal Tunnel Syndrome in both hands. I had hand surgery in July 2013 and the EMG in Sept showed 'severe' carpal tunnel in both hands. Go figure! The pain is actually worse in my hand with surgery than before. Anyway, the hard hand braces have brought much relief at night. Can't do anything about the burning in my legs, but I wear the hand braces at night and it helps a lot! The hand brace is labeled for CPT. That may help your hand pain.

Your welcome, and I understand completely because I have had GBS since I was three and it has gonna stronger so I know a little bit bout trying to control it



Elizabeth said:

Thanks Victoria, I will definitely try a heating pad, it also really helps knowing I’m not alone in this :slight_smile:




kitkatt said:
Yes, hi, my name is Victoria Bischert and I also have GBS I go to sleep but my hand and arm wakes me up in the middle do the night so I know what you mean lol, I am 22 yrs old and I also have a twin sister but she doesn’t have what I have, I take Tylenol for it but, nothing seems to help right? Well if you take a heating pad with you at night and sleep with it, it helps because not only that I have it in my hands have it all over my body and my legs kill me at night too. But I hope that helps…

From kitkatt… With love

Thanks so much for the information Nana, where did you get the hand braces?



Nana said:

November will be the two year mark for me since being diagnosed with GBS. I never crashed but was out of work for 4 months. Night time is the worse for me now. It does get better - the pain eases but it’s still there. I have not had a good night’s sleep in two years except when I take an OTC PM med which I try to avoid. My nuero said I have Carpal Tunnel Syndrome in both hands. I had hand surgery in July 2013 and the EMG in Sept showed ‘severe’ carpal tunnel in both hands. Go figure! The pain is actually worse in my hand with surgery than before. Anyway, the hard hand braces have brought much relief at night. Can’t do anything about the burning in my legs, but I wear the hand braces at night and it helps a lot! The hand brace is labeled for CPT. That may help your hand pain.

At my local pharmacy, but I'm pretty sure Wal-Mart, Rite-Aid, Walgreens, CVS would have them. Near the sports braces, but I asked the Pharmacist for help. I meant to say they're labeled for Carpal Tunnel Syndrome (CTS). It's hurts to type;)

Thanks for the info. And for making the effort to type, I really appreciate it :slight_smile:

Hi Elizabeth,

It's not moaning but a way to express feelings that you're sick of the aches.

Night time can be difficult but I found I can get some sleep and relief in a reclining chair. That seems to take away the aches to a point. My GBS initially required someone to turn me from side to side. I would lay at a 45 degree angle with pillows supporting my back. I found that this position relieved a lot of the aches so I could get some sleep.

The biggest thing for me now is a feeling in the legs that feels like I'm wearing too small support hose or someone has wrapped duct tape from my knees to my toes. I'm having more good days than not so good days now. Its been a year since the onset.

Hang in there, you will improve.

Pete

Thanks for understanding Pete, it’s wonderful to hear that you have good days now. I’m going to try a back pillow for support. The sensations are very hard to explain to others that haven’t felt them, your explanation was very familiar, I’ve been saying that I feel like I’m wearing too tight pantyhose with a few ants stuck crawling inside. At least I’m home in my own bed now :slight_smile:

HI ELIZABETH, STAY STRONG. I HAVE A HARD TIME WITH MY MUSCLES. My arms are weak, my muscle that hold up my head are weak. I am able to do little things, then I must rest. It has been last of Feb 2013. I never crash and was in the Hospital. In face the Doctors thought I had a Stroke. Every day is challenge. So stay strong. Don't let this win..

Preacher August was one year from my onset of GBS and my progress is slow I can walk long distances with my braces and walker. My legs still feel like like I'm wearing ace bandages tightly bound and my hands feel like I squished them in butter then put on latex gloves. My hands also feel the way my body felt as a child when we swam in a pool for several hours. Nights have not been a problem for me but hope these issues disappear soon. Feel free to write me and know you have a new friend here on Long Island.Thanks so much for allowing me to share.

Elizabeth said:

Thanks for understanding Pete, it's wonderful to hear that you have good days now. I'm going to try a back pillow for support. The sensations are very hard to explain to others that haven't felt them, your explanation was very familiar, I've been saying that I feel like I'm wearing too tight pantyhose with a few ants stuck crawling inside. At least I'm home in my own bed now :)

Thanks Preacher, I plan on kicking its butt as soon as I can lift my leg high enough! :wink:

Thanks for sharing that Sunny, you described much of how my limbs feel.

My wife had this pain at night also before we left the hospital they made changes to her meds. She was on nortriptalyn and they up her dosage. She took one pill at night and we also had lydacain cream to put on when the skin started to tingle and cause her pain. One other thing we tried with some success was pain therapy CDs and some relaxation music. I put this on my MP3 player and she used my ear buds. In the hospital she would wake up in excruciating pain and the only way to help was oxycodone and other drugs. My job was to lightly massage her legs and put the lydacain cream on. I would talk to her about things we had done and would do with our new grandson. This took her mind off the pain and help her to focus on other things. I will say that talking to the doctor and getting the right strength and meds really helped at home. All of the doctors we dealt with had patients that had GBS so this helped.

Hope this helps,

ike

I believe that part of our sleeplessness occurs from not really being physically worn out. Let me explain. Throughout the course of the day the actual fatigue we feel weighs heavily on us mentally from the neurological things going on in our bodies. Not to say the fatigue isn't real, it most definitely is, but if you can do as much physical exercise as possible, it will really help with your sleep. One of the positives (often viewed as a negative) of GBS is that it doesn't take as much physical activity to be get a workout. A bath, a shower, a short walk, stretching on the floor, laundry, cleaning, etc... (I have an exercise bike that I can pedal from behind in a chair or while laying down) The key is short intervals spread throughout the day. I guarantee this will help...Also, I take 3mg of otc natures bounty melatonin tablets from CVS or Walgreens before bed, that really helps me.

Thanks for the advice TJ and Dad. Things are starting to even out now a bit. Both of you have great suggestions that I will try!