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Living with Polyneuropathy CIDP, GBS, & CMT

Fish Out of Water


#1

I can never get a good nights sleep. I can only stay in one spot a short time before I become uncomfortable. I flop around like a fish out of the water all night, and have to keep my feet and lower legs uncovered, and let them stay in the cold air. I take 600mg of gabapentin, and one and a half tablets of Tylenol PM every night to sleep. Does anyone else have these issues? Jack


#2

I had the same problem, I had to sleep in a different bed than my wife because I flopped around so much. My feet are sometimes cold as ice or burning up. Nothing helped, made it hard to sleep and wake up for work. I took 2x600mg of gabapentin at night for awhile and that helped a little.


#3

I can remember having so much trouble with this. The weight of the covers would make my legs fall asleep. And I had so much twitching in my legs that I couldn’t sleep too. How long have you been dealing with this?


#4

I just got used to taking Benadryl, take it thirty minutes before you sleep. It is the same drug in Nyquil ZZZ. Magnesium can also help with increasing melatonin production in the body and act as a musile relaxer.


#5

Me too.
My Doctors do not like long term use of Benadryl (diphenhydramine) or anything that has it as an ingredient (any of the -PM’s). I also have Parkinson’s Disease.
Where am I now? At bedtime: Mirapex for Restless Leg Syndrome, Amitriptyline (sleep/pain), Vicodin (pain) and CBD oil (sleep/pain). This is the only Vicodin I take during a 24 hour period. I use CBD oil several times a day.
There is a CBD oil group on facebook:
https://www.facebook.com/groups/cbdoilusersgroup/.


#6

One thing I don’t have serious problems with is sleeping but every 2nd day I change my Fentanyl transdermal patch and that night isn’t good sleep so I take 4 unisom and it helps me stay asleep.
I’d either take a higher dose of what you are on since it’s not working or switch to another sleep aid maybe a script for one.


#7

Tarhealing, I’ve been struggling for years. I’ve recently bumped up my gabapentin, and it has helped a lot.


#8

Williams Scott, thank you for the advice. I’ll talk with my doctor next week when I go in.


#9

I too sleep in a different bed than my wife. Toss and turn every hour or so but can usually go back to sleep. I take 800 mg of gabapentin 3x daily and it helps me. Neuro Dr. made up a vitamin cocktail which helps alot. I’m 73 and I’m accepting the fact that a good nights sleep just isn’t in thecards anymore. I’ve had CIDP for 12 years. My prayers go out to all.
JDU


#10

I have had (been diagnosed) CIDP for 6 years & have IVIG treatment every other week. I can’t stand it when the blanket or sheets touch my feet. I wear socks and try to relax my feet until they stop bothering me. They feel like cement blocks. I have never been a good sleeper, and as I have aged (I’m 70) it’s gotten worse. One of my doctors said something to me that helps me a lot. However, you need a good sense of humor for it to work. He said, “sleeping is like practicing to be dead, do you really need the practice.”
I don’t mean to make light of your sleeping problem and I suffer too. But it does make it easier for me to have a positive outlook. I hope you all stay positive and smile as often as possible.
Warmest regards,
Ron


#11

Ron, thank you for your post. I’m not too worried about not sleeping. I too will sleep when I’m dead! Thanks for your sense of humor!! Have a great day, Jack


#12

Yeah, I’m at 900 x 3 gaba and 21mg of immovane to get sleep, between CMT and RLS and 20+ years of shift work, sleep was near impossible.


#13

Wulf, that’s a cool profile picture! I know what you mean about shift work. I drove truck for almost 30 years and I still haven’t figured out if I’m coming or going. I hate taking Tylenol PM every night with my gab, I know it’s not good for us. I see my neuro on Thursday and will ask her about some good drugs. Thanks for the reply, and I wish you and everyone on here peace, rest and healing! Jack


#14

i started with 3.5mg of imovane, over the years we’ve had to creep it up for it to work. as my doc says, I’m not happy that we have to do this, but, we have to do this if you want to sleep. I’m now on disability, so the exact time of getting to sleep isn’t as important, so I want to try and wean myself back down again, or change meds for sleep to start at lower dosage. If they tried to shoot me with a tranquilizer dart I think they’d need one set for a buffalo!! LOL Take care and only sleep when not driving a truck. :grinning:


#15

PS, thx for props on avatar, I’ve used it for more than a decade, but have recently been given a gift of my own personal hand drawn Wulf avatar that a young girl gave me. I’ll have to swap it up here. I had zero artistic talent when my hands worked well, so I’m in awe of what a young teen can produce.


#16

I haven’t driven a truck in years, and hope I never stick a foot in one again. I’m trying to get on Social Security, just waiting to hear back. I will ask my Dr about Imovane on Thursday.