Pain and sleep

[Phillis]

Whenever I fall asleep or am about to fall asleep I have INTENSE pain (in my legs). WHY does this happen? It happens every night but also happens if I'm sleepy at work or traveling in a car etc. It's almost like as soon as I relax and drift towards sleep BAM here comes the clenching squeezing pain. Just wondering if anyone else has this? Or anyone has any thoughts about it? (Dejerine??) I'm sure three's no help for it but it's just frustrating! Thanks!

[ima2003]

Hi Phillis, me too, but in my hands and arms. It is an intense burning pain. I have often wondered what causes it. Hopefully we'll find out.

[Sue Pendleton]

I think it shows up when the distractions your central nervous system has during the day fade then the pain has more neurons to play with. This is why distraction is often part off a pain management program and why many pain specialists prescribe higher dose of NP meds right before bedtime.

[arndog]

I couldn't agree more with Sue Pendleton. You shut off the lights and lay down in bed, it is just you and your horrible neuropathic pain together without distractions. I have the same experience. Try taking more meds at night so you are covered before going to bed. Or if you take a sleep aid, take it before you shut the lights out. Have distraction like music, TV, iPad video, etc. just before going to bed. Forget the meditation crap. When your lower body is burning in a frying pain, I find people who recommend meditation to be people who don't have what I have.
Good luck !

[Phillis]

Thanks Sue and arndog. That's kind of what I figured but was hoping I was wrong. I'm finding it harder and harder to cope with my constant pain. You'd think after 13 years I'd be used to it. Doesn't help that I recently broke my femur which required surgery to put a rod in. I can ONLY imagine what that will do my neuro pain as mine has always been centered in my legs, but primarily my thighs. I understand why people stop fighting. Sometimes the struggle is just overwhelming! I'll try your suggestions and hope for the best!! Thanks!!

[Sue Pendleton]

Most of my remaining pain is in the soles of my feet. Not having the many layers of callous that even pretty feet have leaves all those nerve endings not liking freshly starched sheets or any sheet. I go directly to soft blankets or well washed quilts. At its worst I found Lidoderm patches helped at night. During the day the valium I take at night keeps the pain in check most of the following day. And the patches can only be used for 12 hours on before you must have 12 hours off. If your pain is specific to mainly your thighs you might ask your pain specialist about the patches for nights. You also cannot put these over incisions that are not completely healed.

I find reading on my Nook until the valium and ambien kick in helps a ton. I normally manage with just a lot of moisturizer on my feet every night.

[Phillis]

What strength of valium do you take Sue? I've never tried that.

[Sue Pendleton]

I normally take 10mg and none during the day although the prescription has always been for 5mg every 6 hours. Yes, my doctors know how I take it but with any schedule drug they really aren't supposed to prescribe PRN. After almost 17 years I still haven't accommadated to it and that is the worst problem with benzodiazapines the constant need for a higher dose.

[Phillis]

Hmmm....my doctor just gave me an rx for Valium but it is 2 mg. She told me I could double it but still... Wonder what dose others take. She did suggest taking it before bed for best results.

[McDuff]

I take nortriptyline at bedtime, it seems to have a good interaction with the gabapentin I take 3x a day, making sleep possible.

It's really weird, but when I am laying there trying to wind down(I have hell trying to get to sleep, like 1/2hour minimum, even after waking up to pee at night), my pain lessens, and when I get this weird floating/elevating feeling in my legs, I know that sleep is close to possible. Can't feel a damn thing in them, but when they "levitate" I know that sleep is near.