Coping with Symptoms at night

Hi everyone! I'm new here and have had MS for 40 yrs. Am now 80 and still fighting

the battle. Exercise 2 times a wk. at the Y and still very active. I have difficulty

sleeping at night and am wondering if others are bothered. Restless legs is a

killer for me at night and am taking Baclofen. Any comments? Also neck spasms.

Is anyone else having them?

22 Replies

  • Wish I had some ready answers for you. I was just diagnosed in August. I'm impressed that you have endured for 40 yrs of this and at 80 still going strong.. Welcome to the group, I hope you find some answers and new friends here. They've been so helpful to me. Lynn


  • Thanks! It's always nice to talk with someone in the same boat because

    you know they really understand. I hate it when people tell you how

    good you look . Oh if they only knew what we endure!!!

  • Yeah, what's that saying about the tough getting tougher?!?! That's us.

  • Hi, I admire you, 80 and still fighting, you are an example for all of us. I am 60 and have suffered with restless legs since I was in my early twenties. No one would recognise that was what was wrong with me, I even took a book about it in to my doctors and still they wouldn't diagnose me with it. I had to fall off my horse, have a discectomy before they would acknowledge that I both ms and restless leg. I take Pramipexole for the restless leg, and as long as stay on the low dose I am ok, I actually sleep at night rather than wearing a patch out in the carpet. Talk to your doctor as I don't know if you can take it with the ms medication. I don't take anything for ms, as the RLS was so bad I made a choice and I choose the medication for RLS. Hope you get sorted soon and keep up the good fight, cheers Jimeka

  • You must be doing something right,Keep on keeping on . I too also go to the Y 2 times a week and seams to help.what can I say you do what you got to do .God bless and have a great day

  • Sleep? What's sleep? 😉

  • Legend says, When you can't sleep at night, it's because you,re awake in someone else,s dream.

  • And I'm going to track down that guy and punch him.

  • I had my first attach in 1977, we are both "Longtimers"!

    I have muscle spasms in legs and arms some nights and cannot sleep. Had a new flair last month and have had more than usual, actually nightly, lately. I take a muscle relaxer but sometimes it helps and sometimes it doesn't. I have the electrical shock thing in my neck and shoulders, is that what you mean?

  • Hi Morllyn! Yes, I guess you could say its like a shock. Sometimes lasting

    20 seconds. Get mostly at night and several in a row. Take Baclofen

    and sometimes it works and sometimes it doesn't! And then I might

    not get them for a couple days. Then they come back with a vengeance!

  • It might be Lhermitte's Sign, look it up if you do not know about it. I have it sometimes, even though mine does not exactly meet the definition. Sorry getting tired or I would look it up and copy/paste it for you.

    Be well.

  • I too am a "long-timer." We seem to have some similar symptoms. This is the first time I am replying to a post, but I am curious to know how or what you do when the spasms come into the night.

  • I have Baclofen a n Methacarbomol (which are both muscle relaxers but, they do not work well, so I get up and watch TV or play on my iPad. I am going to the local MS specialist next month and see if he has anything better for spasms.

  • My symptoms seem to get worse at night too. Makes sleeping a real challenge. I am allergic to Baclofen, but I take Klonopin to help me sleep. When my legs start twitching, I take extra Neurontin and some "magic fudge" (infused with MJ) to help calm them down, but nothing works quickly. In my case, I have decided that it is not restless legs, but little spasms in my leg that pull my foot up. It drives me crazy (er). Good luck to you -- I hope you find something that helps you get some rest. Linda

  • 40 years is a long time to have this MonSter !!! I notice my symptoms are worse when I'm tired and I seems more disoriented after wake up or when tired. I think I am that way in morning b/c I cant go to sleep at night and I take my Ned's at night...Many meds.

  • Thank you all for your replies and answers. I do not take any ms meds but

    others to treat the symptoms...a lot!!! I also had a hard time being dx but

    finally changed to a new doctor and he sent me to Charleston,SC MS clinic

    in the hospital there. I had read an article in the paper that stated many

    symptoms that I had and was told I was too old to have it. Then after my

    trip to Charleston and many MRI's and spinal tap was confirmed I had ms.

    I had had it for many years before but nobody would believe me. I made

    up my mind early on that I would not give in and let MS take over my life.

    All of you that are not give up. You will survive it better if you

    focus on what you can do and not on what you cannot. It worked for me

    all my life. There are good times and bad times but if you let depression

    take over it will be harder. Believe me I have had some bitter days but

    pick myself up and move on. Now if I could just get some sleep!!!!

    Nice to know I am not alone!

  • My daughter did one of her nursing rotations at MUSC. Small world as I believe the MS Clinic is affiliated. She worked at Summerville for many years before becoming disabled herself. Just a couple of suggestions that might help the legs, there is an over the counter cream called "Eucerin-calming cream" a massage before bed might help, I think it has chamomile or eucalyptus in it. There is also something called Ryland leg cramp pills that you dissolve in your mouth. I uses them and they seem to help a little. When I lay down to rest, I get what I call electric shock wave from my feet up. No pain, just uncomfortable. Lynn

  • I have had many issues sleeping-getting to sleep, staying asleep, leg spasms and cramping at night etc. I recently purchased a weighted blanket. Believe it or not I have and several nights of actual sleep since starting to use it. It hasn't been every night but I have been grateful for the nights it worked:)

  • Thanks! I'll have to think about that. Maybe give it a try.

  • If you are crafty you can make your own or they have kits. I wish you luck and of course, a good night's sleep.

  • Here's a link I found that has some useful info:

    I don't know if lavender oil on the soles of your feet help, but it smells nice anyway. A sleep diary may help you figure out when it's worse or better, for you.

  • Yes, my legs spasm and at times will cramp from my arch to my groin. I have been taking Trazodone to get a good night sleep. It works great for me and has made everything else more bearable. Getting sleep has improved my health considerably.

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