It might be neuropathy. I kinda felt the same thing in my feet and legs (it wasn't RLS), almost like numbness (sometimes it was numbness), but sometimes a creepy-crawly feeling that would go away temporarily if I moved my legs. Are you having any other symptoms? Did anything bring this on (it can have many, many causes)? Change in medication, injury, anything?

Have you been to a neurologist? They can do nerve conduction tests to see if you have neuropathy and the tests can sort of narrow down the causes. Nerve pain/anti-seizure medication (like Neurontin, Gabapentin) helped me. They're better than other pain meds because they are specifically for nerve pain, rather than anti-inflammatories or something like that. Exercise sometimes helps these problems, too.

Try going to a neurologist, if you haven't already and see if they can help.

Yeah,

I thought about having a nerve test done, but not sure. I want to see if someone really has an idea of a siatinct diagnoses here first. Thank for the info, though! Makes me feel I'm not the only one.

CB

I am experiencing a very similar problem. My deep tickle is right on the lower spine, right above the sacrum and it's driving me insane. It comes and goes, always in the middle of the night and wakes me up. I've been getting up, stretching, and walking around which seems to help for maybe 30 minutes and then I'm back where I started.

Today (after being up with this little problem since 4am) I went to see an acupuncturist. She did not have any particular theory as to what was causing the problem, but the acupuncture procedure gave me enough relief that I was able to go home and get some deep sleep this afternoon. However - the damn itch is back six hours later and I'mn not sure what to do next.

Cryinbrian: one theory in my case is that it is yet another symptom of the Lyme disease that I'm experiencing. Is there a chance you might have Lyme?

If you get any answers from *anyone* that relieves your symptoms, could you PLEASE let me know about them. I promise to do the same. In the meantime, I sincerely wish you a restful night.

cheers,
papercarver

What you described sounds exactly like my problem. It is so good, yet so regretful, that I'm not the only one. I do not have lyme disease...of that I'm sure. I have been in a few car crashes(as passenger mostly), and I have fallen once and fractured my tailbone...but this tickle has been around for a while. I'm 45 now and it has gotten worse. I did find something at Wal-mart, though...it's called "Restful Legs". You dissolve a couple of the tablets under your tongue. It doesn't taste bad and doesn't interact with my other meds. It seems to work, as long as I do it early enough.


I say, if it works and don't hurt, use it.

Thanks for all your replies.

Brian

I have the same symptoms, i get it up my spine and in my shoulders aswell as my hips, pelvis, lower back and thighs, mri has shown nothing and have been diagnosed as of 2 years with rls but not found any of the treatments beneficial (mirapex, ropinerole, gabapentin, seroquel and 2 others that i can't remember the name of) i have slight peripheral neuropathy and chronic back pain which I am sure have at least some responsibility for the rls type symptoms/deep tissue 'tickle' (i describe almost like the feeling of a really really full bladder) but the docs don't seem to think so, still trying to find an alternative diagnosis and after a recent xray it turns out i have some kind of hip problem and am now awaiting for an orthopedic referal. I found that canabis helps relieve the symptoms but not a miracle cure and a good deep massage, i sort of 'kneed' the top of my buttocks and lower back also helps if its in ur hips and lower back, other than that it's up and down and in and out of bed all night, most nights untill 0500.
If having a sleepless night is not bad enough anyone suffering with this to any degree is tormented and teased by it, its almost like having someone next to just tickling you but from the inside out except you can't stop it or ignore it you have to move, even if you try and not move you just have to because the sensation is unbearable, it goes away with movement but returns anywhere up to a bout 20 seconds, it has driven me to the point of several nervous breakdowns due to the obvious side effects that come with lack of sleep, stress and anxiety, that whatever this condition is causes.
I hope you can feel better knowing there are others out there with similar symptoms, it has certainly eased my mind to find others that get this 'rls' type of feeling in other areas than the legs and i will repost with the outcome of the hip investigation.

A follow up:

My itch/tickle went away on its own, after about 7 days and was chalked up to what is called a Herxheimer reaction (as the antibiotics kill the Lyme beasties they release a toxin that exacerbates the Lyme symptoms - in my case neurological symptoms). I pray that this condition will never return for me and I pray that you will all find relief soon - what a nightmare of a condition!

I want to make another pitch for the acupuncture: it *did* deeply relax me enough to sleep. Might give you some respite.

GOOD LUCK everyone!!!

papercarver

ive had it & believe it is relative to a mineral deficiency,A B complex executive formula should help as it has calcium, magnesium,which are for muscle function & rest, all B vitamins which help with nerve function. anyone who wants to learn about this & nutrient interaction can start at ithyroid.com & study every page & sub pages as it is important to correct suplimentation & good health!

To the first person who posted the question: I had the same symptoms as you and they were indeed Restless Leg Syndrome. My legs jerked when I lay down like they had little electric shocks and tickles in them. I casually mentioned it to a girlfriend and she had it too and told me to get on her drug. It is called Miripex, and I wouldn't live without it EVER!
Miripex is actually for people with Parkinson's disease, but I take it instead of the usual Restless Leg drugs that you can find, because it has no side effects for me. I LOVE it!!
I came on this sight now, however, because my lower back has a tickle almost constantly. I was wondering what that was. I don't know if it's part of the RLS or what, which is actually from the brain, I guess, not the spine. Good Luck-Nancy

I thought I was the only one in the world who had to deal with the deep-tickle problem. It sounds so silly when I tell people, like my parents or doctors. They have never heard of it and don't understand how annoying it is. My sensations are brought upon by water trickling by my ear, deep voices (I thinks it's the vibrations of the sound), touchin gmy skin, or people breathing close to my skin. I feel like such a freak, but I'm glad to know I am not the only one experiencing these symptoms.

I've recently begun to experience similar "tickling" that seems to be located in my lower spine but seems to travel all the way up to my shoulder blades. I'd experienced a similar tickle in my upper arms and near my shoulder caps a few years earlier. When I told an orthopedic doc about it, I was told that the myelin sheath around some of the nerves in my arm actually had "slipped" and that this is what was causing the tickle.

He showed me a few stretches which eliminated the tickle right away. I'm wondering if it's a similar issue with my back? Hopefully it is (and is as easily recitifed).

The other thing I've recently discovered was that sleeping on the floor helped me get a full night's sleep for the first time in about a week.

It's certainly no diagnosis, but it may help in the meantime. Or even just give you something to talk with your doctor about.