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"Tickling" sensation at night in hip joints (Page 1)

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I have searched and searched and have come up empty about this. Most nights, especially when I really want to sleep, I get this irritating "tickle" either in the right lower back, or left, in what feels like the sacralilial joint. This annoying sensation begins when seriously fatigued and I just lay down for rest. I am a 45 yom, with no other health problems and no signs of arthritis. My lower back has had a recent MRI that was normal.

This feels like a nerve thing, but I cannot be sure. I know it doesn't follow the orthodoxy of rls, but I do have to jerk my legs to stop it. It gets so intense sometimes that when I actually do fall asleep, the next morning I felt like I had a fight with someone - and lost. The bed is usually a mess and my back is sore, along with my larger leg muscles, which means I am still writhing around while sleep.

Anyone heard of this? I really don't believe it's RLS, i've read up on that until I'm blue in the noggin. I can't describe the sensation except for this deep tickle, inside the hip or sacral spine area...and it moves from left to right or is both (bad night)
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First Helper Chrissy23ang
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Users who thank cryinbrian for this post: Scrvydarg 

replied May 16th, 2009
Experienced User
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.
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replied May 16th, 2009
thanks
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
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replied September 30th, 2013
If it's the same tickling sensation as mine, I use night splints to push up on and stretch my feet while I'm sleeping.
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replied June 2nd, 2009
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
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replied September 10th, 2012
Legs tickling
Mine seems to go away when I take a really hot shower for about a hour then get out dont dry off all the way and then turn my fan directly on me with clean sheets blankets seem to make it worse.
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replied May 5th, 2013
Thankyou so much this REALLY helped me.
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replied June 2nd, 2009
Restful Legs
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
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replied July 21st, 2009
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.
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replied July 19th, 2011
Tingling feeling
I have the exact same thing, seems to come from my hip, also on the outside of my left knee. I have been going to the Mayo clinic and just had an injection last Thursday, it helped for two days but now that tingly feeling is back. Also feel like I am going crazy, some nights getting only 2 hours of sleep. I have tried everything to daignose it. Nothing has helped so far.
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replied July 22nd, 2009
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
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replied July 22nd, 2009
Experienced User
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!
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replied July 26th, 2009
Tickling back and legs
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
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replied August 10th, 2009
Deep-tickling nerve problem
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.
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replied July 27th, 2011
i'm so happy that i found this - i literally have exactly the same issue as what you're describing and sound like a complete fool explaining it to anyone. have you found any solutions or things that help with it? i find it hard to be intimate with anyone because of the crazy tickle and i have to constantly twitch and itch it.
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replied August 19th, 2009
Myelin sheath?
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.
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replied January 3rd, 2010
Nerve Damage?
I get a deep tickling sensation on my tailbone and lower buttocks region too. I've had tailbone trauma in the past and have assumed that it is nerve damage. I try to apply pressure to it with a back massager and heat. It temporarily relieves the annoying tickle, but then it comes right back again. Maybe we are just highly sensitive people.
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replied January 28th, 2010
restless butt syndrome
wow--I cannot believe others have this too. I refer to it as restless butt syndrome--symptoms do not fit exactly RLS. Mine starts in lower spine and deep in butt--keeps me from falling asleep or wakes me up for hours. Flexiril does not help. So no one has been diagnosed? I plan on going to a neurologist for a work up.
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replied March 10th, 2010
I have it in my right hip. A tickle. Also goes into my side up to my ribs. I have probs sleeping. If someone touches it, then I jump. I thought I was losing my mind. But it is nice to see some of you have the same thing and I'm gonna try to take vitamins and stretching
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replied March 10th, 2010
I have it in my right hip. A tickle. Also goes into my side up to my ribs. I have probs sleeping. If someone touches it, then I jump. I thought I was losing my mind. But it is nice to see some of you have the same thing and I'm gonna try to take vitamins and stretching
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replied May 19th, 2010
I sometimes get a deep tickling sensation on the bottom of one of my feet at night (it happens in irregular phases, and I'm in one now), sometimes on the ball of my foot, sometimes under the arch, and the sensation is excruciating. It feels like a slow drip of water landing on still water and spreading out in circles. I first experienced this awful thing about twenty five years ago and when I mention it to my many medical friends, they just look blank.

I imagine to myself (and I know my diagnosis is utterly off the beam) that a tiny nerve has got trapped under a bone somewhere and so to free it I vigorously turn and shake my foot and leg in every possible direction for a few minutes. The tickling then stops and I get off back to sleep. I hope that might work for others too.
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replied May 20th, 2010
ice
I have past tailbone trama and have been experiencing what I thought was RLS. I am going for a sleep evaluation ordered by a neurologist. My "tickling" is in my tailbone/butt/hip area, lower legs/ankles/feet/toes, upper side of my fore arms, hands and fingers. It wakes me as I begin to doze off. I've been up all night this past night. It is exhausting. I have discovered "sitting" on or somehow applying some ice (frozen peas) to the tailbone area brings great relief to me. Sometimes ibuprofen helps as well. Other times I just have to take something to knock myself out. Thanks for all the info here.
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replied June 12th, 2010
Inner tickle in toes
I don't know if my problem is the same thing, but somnetimes I get a deep tickle, sort of gnawing feeling, in my toes and feet...mainly my big toe. Once in a while, it travels to my legs. It's so aggravating, that I have to squeeze my toes with my hand, or I try to hit my toes and feet, so I won't feel it. Pain would be easier to take...sounds weird, but my feet feel 'helpless'. I do have Addison's Disease, but have never seen anything about this, concerning that. Driving me crazy!
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replied June 13th, 2010
Extremely eHealthy
the sensations you are having could be a sign of the low levels of hormones caused by addisons disease. i would first see your endocrinologist about this. you may have to take a low dose of a steroid to keep your body working well. keep us posted as to what doc finds.....pete
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Users who thank pete81241 for this post: Scrvydarg 

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replied June 14th, 2010
Thanks Pete!
Actually, I am on hydrocortisone for Addison's, and I think I'm getting enough, though I'll get the levels checked, soon. That's a good idea about talking with my endo. He might know something about it...if so, I'll let you know.
Take care,
Judith
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