Sleep

[LKB55]

my nephew has MS. He has a difficult time with sleep and RLS. Think he’s tried a lot of stuff. States not much to be done because some the lesions are in that area. Does anyone have any thoughts?

Thanks so much

[NorasMom]

I take Zzzzquil (or the cheaper generic equivalent) every night, but that only works for about 2 hours, then I'm up for at least that long. I don't have to work anymore, so I've adapted to what I call "yo-yo" nights and have learned to just go with the flow. Depending on whether or not the dog gets up with me, I'll either sit at the computer, watch TV, or do light housework. If your nephew still has an outside life, all I can suggest is to rest and nap whenever he can, trying to work it into a specific routine.

For the legs, when mine get bad I just smear Icy-Hot all over them. It doesn't really fix anything, but it eases the discomfort enough that I can fall asleep for a while.

[LKB55 in reply to NorasMom]

thanks

[CatsandCars]

I'm guessing his neurologist has had him try all the meds for that? There are many: mirapex and neupro (patch) are particularly effective for a lot of people, although thay can have some concerning side effects. Levadopa/carbadopa, gabapentin, Lyrica, clonazepam, and opioids have also been used. I have heard some people say a warm bath (if tolerated) or massaging the legs helped them. One person said a weighted blanket helped them, but for me using a yoga mat and stretching, lying down and waving my legs in the air (yeah, it looked weird), doing leg lifts, etc. gave me something to do until it would pass. Just walking around helps.

Restless legs can range from mild to so bad people just cannot cope. It's very kind of you to try to help your nephew. Maybe there isn't much to be done, but I would consider getting a second or third opinion. There are sleep specialists who are well versed in problems like this. Some people have pretty severe periodic limb movement disorder that yanks them from a deep sleep dozens of times an hour without them being aware of it; naturally they are exhausted all day. A sleep specialist will have him do a sleep study where they monitor his sleep with a lot of sensors to find out exactly what's going on (possibly in addition to what he's experiencing when he's awake) and develop a treatment plan from there.

They will probably do a blood test for iron levels and some other things, too.

I hope your nephew finds some relief.

[NorasMom in reply to CatsandCars]

I have a CPAP for severe sleep apnea, and while I sleep more soundly now, it hasn't helped with me actually staying asleep all night. I haven't noticed it making any difference in my tiredness levels, but I do recommend that people see a sleep specialist if they're having problems. It took a while to get used to, but now I feel lost if I try sleeping without it.

You waving your legs in the air reminded me that sometimes I rearrange the bed so that I can lay on my back with my legs straight up against the wall and then fall asleep like that. At some point, I'll wake up enough to move myself to a normal bed position, but it helps the aches and twitches a lot. It might not work so well with someone else in the bed...

[CatsandCars in reply to NorasMom]

Hi, Norasmom. That's an interesting trick. The next time I'm desperate to get some sleep when my legs are being difficult, I'll try that out in the spare room!

[Squirrel1270 in reply to NorasMom]

I just went through a sleep study and found to have sleep apnea. I'm supposed to get a CPAP machine within a week or 2. Just curious, were you diagnosed before or after being diagnosed with MS? I used to be able to sleep through anything, no problem. Not anymore. Just wondering if my MS had something to do with it.

[NorasMom in reply to Squirrel1270]

It was after, but that doesn't mean much. We think I've had MS since the early '80's. On the other hand, I'm pretty sure that one of my doctors told me that apnea is more common with people who have autoimmune disorders, just not specifically MS.

[LKB55 in reply to CatsandCars]

thanks I will offer your suggestions

[CatsandCars in reply to LKB55]

You're very welcome. Good luck.😊

[StacyHayward]

I take 1 mg of melatonin and a low dose of trazadone to help me sleep. I also use high thread count sheets to keep the temperatures lower, a fan running and the room super dark.

Unfortunately, I still have night where I toss and turn and I get up for the bathroom too often.

Sometimes a bath before bed helps too.

[Xvettech]

I have had success with melatonin. What works best for me, amazingly, are CBD gummies. I still have problems sleeping when I’m having a flare but I like that they are all natural as opposed to a pharmaceutical drug

[Mark1499]

My sister has bad RLS. She is the first one in the family to be diagnosed. She also has spinal lesions. Does he have lesions on his spine? I only ask because I ware a neu pro patch at night and it works. Her RLS is so bad she’s been on several different medications and still has it.

[LKB55 in reply to Mark1499]

He has lesions but not sure where they are. Sorry I can’t be more help.

[Mark1499 in reply to LKB55]

Not a problem. Hoping y’all get a good MS neurologist and get solid answers!

[ms23]

my elderly mom has had severe restless legs for at least 10 years. She was recently prescribed a medication for it that worked very well and allowed her to finally sleep through the night, but she stopped taking it due to daytime fatigue. I had purchased magnesium and vitamin B6 for her over the counter, and she said taking them was very effective! Maybe your nephew can try that for a few nights and see if he gets any relief. You’re very kind to help him!

[MarkUpnorth]

I too did the scripts for restless legs. I've had them almost as long as I've had M.S. (it's been decades with the M.S.). The scripts worked, each for a bit, but then stopped. I used a combination of them to help for a bit longer. They gave up on them. I noted that the restless leg cream was mainly magnesium? So I tried magnesium supliments. They seem to work. I take the recommended dose 1-2 hours before bed, along with a generous supply from natural foods. And it seems to have calmed it to at least the point where I don't realize I may still have them. My wife claims I still have them, but I wouldn't know. A new split king bed and she says she isn't bothered by them anymore. So all's good.

I started with magnesium citrate. And spit the dose between magnesium citrate and magnesium glycinate from reading..., works for me. Maybe not for my wife?

[CatsandCars]

When I replied to you awhile ago, I didn't realize there was a whole community on Health Unlocked dedicated to restless legs. A lot of the info looks fairly advanced, but it shows that a lot can be done.healthunlocked.com/search/p...