What’s Wrong With My Arms When I Sleep

    • Anonymous
      January 10, 2008 at 3:47 pm

      Hello Family,
      This has been an on-going problem with me for about three years. The only positions I can try to sleep in are on my sides. I can’t sleep on my back, which would help me the most so that I could stretch out legs/arms after sitting in wheelchair or sofa all day. If I lay on my back, I’ll moan, make puffing sounds with my lips or snore. My stomach used to be my most comfortable position, but to even try that, is intolerable. So that leaves my sides as the only way I can lay at night. When I lay on my sides (toss/turn), one arm has to be placed on top of the other arm and that makes me feel like I have no cushioning in my arms, or bone is pressing against bone. A pillow between them eases the same feeling in my legs, but a pillow or anything else I’ve tried for my arms, doesn’t help. I can still feel that bone against bone sensation. My sleeping patterns have changed so many times since I’ve had CIDP and I do believe that since I am a highly stressed person, that has alot to do with it. If I go to bed too early, it will take me three to four hours to finally fall asleep. Right now, I go to bed about 1:00am because if I let myself get very very tired, I can fall into a restless sleep in two/three hours. I feel that extreme tiredness in my eyes all day. My family doctor suggested a sleep study, but my reasons for not sleeping are physical and all a sleep study will do is show how restless I sleep. It won’t give me a solution!!

      I need something that will cut into the physical sensations I feel. This is not CIDP pain that keeps me awake, it’s mostly the physical side effects of stress, so neuronton had no effect. DO YOU THINK ANOTHER KIND OF PAIN MEDICATION COULD CUT INTO MY PHYSICAL SENATIONS? DO YOU THINK SLEEPING PILLS COULD DO IT? I WOULD NEVER TRY SLEEPING PILLS BEFORE BECAUSE I HAD TO BE ALERT TO MY MOTHERS FALLS, BUT NOW THAT SHE HAS A LIVE-IN CAREGIVER, I CAN TRY THEM. I FEAR THOUGH THAT SINCE MY HANDS/FEET/LEGS ARE SO NUMB, I COULD BREAK A FINGER/TOE IF I AM SEDATED.

      DO YOU THINK MY ARMS BOTHER ME AT NIGHT BECAUSE OF MUSCLE SPASMS? MAYBE TRY A MUSCLE RELAXER OR MAYBE EXERCISE THE ARMS ALOT MORE TO WORK THE DAYTIME KINKS OUT.

      I’d feel so much better and I could start moving forward again if I could only sleep.

    • January 10, 2008 at 5:58 pm

      Liz,

      I know the exact sensations you are feeling. It’s such a nasty circle of fidgeting to get comfortable – but the fidgeting kept me from getting quality sleep.

      Now I take 1 or 2 50mg capsules of Nortriptylin (Pamelor) with my evening meal so that they are awash in my bloodstream when I go to bed. This is a really inexpensive, old drug that helps with nerve pain, is a sleeping pill and an antidepressant. My Lyrica has my day time discomfort well under control – I just need help getting relaxed enough to sleep.

      It did not work immediately so give it a couple of weeks. It is not a heavy duty sleeping pill so once you are used to it there shouldn’t be any problem if you are needed in the middle of the night.

      Sweet dreams,
      Flossie

    • Anonymous
      January 11, 2008 at 7:52 am

      Liz,

      I can relate to your sleep problems…not so much to painful positioning but just a good nights sleep in general. My body jumps or twitches like and it wakes me up. It’s not just my legs…which maybe that could be the restless leg thing…but, it’s my arms, too. I wake up from it. I wouldnt be surprised if I wake my husband up. I dont know why that is…I never was like that before CIDP. I’m sorry you are having this on top of everything else.
      My mom always told me life was so much easier to handle with a good nights rest.
      She’s right.

      Please let us know what you do for this.

    • January 11, 2008 at 9:30 am

      Hi Liz,
      Kevin had trouble falling asleep for about 12 out of the 15 months he has had cidp. Sooo. regarding the falling asleep, I assume you have tried all the basics, no caffiene, no visual stimulation ie computer, tv, etc. 2 hours before bed. Eating by 6 pm. If all of those have failed, how about ambien? You CAN worry about yourself now, since you no longer have to be alert for your mom. If sleeping pills worry you, what about a good old fashioned zanax (spelling) I bet you are right, alot of the problems falling asleep are stress related. The zanax does not have to be a everyday thing, only as needed, I just convinced my mother in law to have our family doc come to her house for a visit (she has been house and bed ridden for 8 years now with no outside contact) she too suffers from sleep and stress and pain related anxiety and the zanax has worked a miracle. She especially likes that she controls when to take it. When Kevin is anxious about returning to schiool after missing a week every month because of treatments, he has a difficult night the Sunday before he returns to school on Monday. Now he is having anxiety about his needle coming out of his port while he sleeps. We do back tickles and talk, since he is too young for meds.

      I also noticed Kevin has to have a pillow between his legs and arms, we have a body pillow and he cuddles it. This never happened pre-cidp, so there may be a connection between your cidp and this pattern. It seems as though others before me expressed the same issues. How about a water bottle (warm) slightly filled between your arms or maybe a heating pad or a tempurpeadic pillow. Is your mattress ok regarding sleeping on your back? Or how about a Tempurpeadic pillow positioning your head and neck for back sleeping? Another thing the doc suggested for my mother in law regarding pain she has on pressure points (elbows,knees when she sleeps) is a gel pad between them. Is there a hospital supply store near you you can call to see if such an animal exists? My mother in law did not want one, so I have not investigated it. Best wishes for sweet dreams tonight!
      Dawn Kevies mom

    • Anonymous
      January 11, 2008 at 5:46 pm

      I found I was having panic attacks in the middle of the night, which sounds like what you are having. Paxil in the a.m. and Trazadone before bed takes care of it. Its an unforgiving cycle in which insufficient sleep compounds everything bad in your life, both physically and mentally. Choose sleep — I don’t mean to make light of the struggle, it took me a while to understand what was a panic attack is and to accept that I needed a little additional help.

      eta — I also use pillows to protect my arms or they continuously fall asleep and that wakes me up. Doesn’t happen as often with my legs. I’ve learned to sleep on my back most of the time.

    • Anonymous
      January 12, 2008 at 4:36 am

      Ugh, I know just what you are going through – can’t sleep on my back, don’t breathe well, I can sleep on my stomach when my abdomen isn’t swollen but that’s only about 1 weeks of the month so I sleep on my sides too. My arms go to sleep, they ache, they feel like the bones are grinding together – I could go on but you already know what I’m talking about. I haven’t found a total solution yet but here are some things I’ve tried with varying success:

      1) air mattress – I don’t blow it up all the way so that it has a decent amount of “give” to it, the mattress tends to flow up around whichever side I’m lying on and give support to the floating areas. My arms are no longer smashed against a hard mattress and the bursitis in my hips appreciate the relief too. This has been the best thing for me to get a good night’s sleep and since I don’t sleep on it on the weekends I can tell that it makes a huge difference.

      2) puffy clothes – in the beginning it was worse for me so I would pad my joints with ace bandages, extra puffy polartec shirts or socks wrapped around if it’s hot. I tried using those little air pillows they pack electronic stuff with nowdays but they were too tightly packed with air and didn’t help, plus a little scratchy.

      3) epsom salt bath before bed – if I’m already sore and stiff this helps relax my muscles before bed so they aren’t quite as spasmy (I know that’s not a word… humor me) because the spasms tend to draw my arms and legs into unnatural positions which I rarely notice until I wake up in the middle of the night aching and sore.

      4) I tried a hot water bottle but OOPS I must not have closed it all the way so I woke up with my bed wet – not a big deal since it’s an air mattress but who wants to wake up feeling like they peed on themselves?

      5) A heating pad didn’t provide much help either unless I have spasms due to cold but it doesn’t help with that bone grinding feeling.

      Since I turn into a kung-fu fighter in my sleep, tossing, kicking, spasms etc – neither my husband nor I gets a good night sleep when we sleep together in the “rock bed” (as I call it). It’s too hard for me, I don’t sleep well and consequently kick my darling HB all night so he doesn’t sleep well either. We are now comfortable with only sleeping together in the rock bed on the weekend when mental acuity isn’t as important. Having this as a basis of comparison I can easily tell that my body rests much better on the air mattress. Emotionally it took me awhile to adjust to not sleeping with my husband in a real bed but getting a good nights sleep regularly made a huge different in my relapse rate and since we’re both less grouchy we adapted to it.

      One other thought – I’m not sure if your pain is from your joints or not but I know many people (and 2 of my dogs) who take glucosamine with great success. Personally it tears up my intestines so I don’t take it but I know people who have avoided surgery and permanent impairment by taking regular glucosamine.

      Julie

      P.S. I got my air mattress at Target for $17.95, and the electric pump was another $10 but obviously worth it unless you’ve got lungs the size of Kansas.

    • Anonymous
      February 17, 2008 at 7:53 pm

      Hey everyone….as i am reading about the different sleeping pills you guys are taking. I too have a hard time sleeping at times and was wondering if Advil PM is o.k. Also if you take sleeping pills alot do you need to cycle them so you do not become addicted or is that not a worry…..

      Thanks Again…….
      Ericc

    • Anonymous
      February 17, 2008 at 9:41 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]Eric
      All of the PM OTC sleep preparations contain Diphenhydramine which can interact with some of the common medications we take for CIDP.
      The easiest way to check it out is to try Drugs.com
      Yes they are addictive. I used to be addicted to them, or at least i needed them in larger and larger quantities to get to sleep no matter how tired i was.
      I now have Restoril (Temazepam) to take as needed but i find i don’t need it so much.
      Was given Ambien once in hospital, had scary nightmare and nurses found me wandering and crying in hallway, so if you try it, be sure you are not alone, and throw your car keys in the bottom of the pool 😀
      Hope this helps
      V [/SIZE][/FONT]

    • Anonymous
      February 17, 2008 at 9:58 pm

      Liz,

      I really feel for you!! I know you said you don’t want a sleep test, but it does more than just show how poorly you sleep. You mention that you snore, etc. when you sleep on your back. This could indicate a breathing disorder. I recently had a sleep test to verify that I have sleep apnea and the test found that I stop breathing about 40 times an hour, which means I wake up that many times, even though I am not aware of it! I now have a breathing machine (C-Pap) which provides a flow of air to keep me breathing properly. And I now sleep on my back!

      Being able to get to sleep is a problem I also have, and I haven’t found an answer for that yet. However, once I am asleep I’m now able to sleep through for up to 6 hours!

      Best Wishes ~

    • Anonymous
      February 18, 2008 at 8:47 am

      My wife and I bought a “Sleep Number” mattress. Honestly, it’s more for her than me. However, choosing a different number helped me get the correct firmness. And it has reduced back pain for me and hip pain for her.

      You may want to check out buying a new pillow. They have “specialty” pillows for the type of sleeper you are. Some are designed for people who sleep on you back/front/side.

      This mattress and pillows aren’t cheap. But it maybe worth looking into.

      When I get those jittery feelings, I do have a script for Lorazepam. Calms the nerves and knocks me out.

      Good luck! And try to sleep well!

      dennis

    • Anonymous
      February 19, 2008 at 9:53 am

      [QUOTE=oldbat][FONT=”Comic Sans MS”][SIZE=”2″]Eric
      All of the PM OTC sleep preparations contain Diphenhydramine which can interact with some of the common medications we take for CIDP.
      The easiest way to check it out is to try Drugs.com
      Yes they are addictive. I used to be addicted to them, or at least i needed them in larger and larger quantities to get to sleep no matter how tired i was.
      I now have Restoril (Temazepam) to take as needed but i find i don’t need it so much.
      Was given Ambien once in hospital, had scary nightmare and nurses found me wandering and crying in hallway, so if you try it, be sure you are not alone, and throw your car keys in the bottom of the pool 😀
      Hope this helps
      V [/SIZE][/FONT][/QUOTE]

      Thanks Oldbat !!
      Ericc