Hi, Hopetobefree! I can't say that I have the same spine tingly thing you have going on, but I do know what you mean by creepy crawly sensations. I'm new (like in the past 5 minutes I joined this support group) but I've already noticed a lot of people, unfortunately, have pain associated with their symptoms. I do not. Just that terrible creepy crawly-ness in my arms, legs, and a little bit across my upper torso (front and back). It tends to not show up until I've already been sleeping for a few hours and it wakes me, keeping me up for hours.

Have you seen a doc about it? I just wonder because perhaps an issue with the spine and the nerves around the vertebre is more easily treated than RLS of unknown cause. But you've been dealing with this for years (me only a month and a half or so) so I'm sure you've already looked into everything possible.

Hope you feel better and I wish you hours upon hours of uninterrupted and restful sleep!

You might need a change in meds Requip did nothing for me . Mirapex may work better for you.I just join the RLS group and have had RLS for twenty years.Good luck to you.

Have you had your iron (needed for Oxygen transport), Calcium and Potassium checked(needed for nerve impulses and myosin/actin cross-bridge function activating muscle movement)? This might be a good idea. Until you get test results you could try rubbing "BioFreeze" lotion on your legs it can give you temp relieve tho you may have to re-apply.

Best wishes to you,
EP
http://www.ramswebsite.net/Eczema___RLS.html

I didn't know I had RLS until I mentioned to my Dr. that one night I was lying in bed and this strange feeling came over my legs like someone was pulling on my legs and then this creepy feeling that something was crawling on me. I started to move my legs and it felt better.

I use to be able to sleep in one position but now I have degenerating discs, scoliosis, Fibr. osteoarthritis, osteoporosis and when I wake up in the morning my bed is a total mess.

I have also noticed that I am moving my legs more when I sit because of this weird feeling in them.

I went to a specialist last month who told me I have Fibro and arthritis and asked me if I have RLS and after telling him he believes I do.

So I am new to all of these new things that are going on throughout my body. Just never knew my body hated me so much.

I am new, and I just took my first pill 4 hours ago.(Clonazepam) for restless leg. I don't feel tired and my legs are moving. How long does it take for it to work.thank you for the help.

I suffered with RLS and restless arms for three years, medication worked somewhat for 2 years then augmantation (requip) or in Norwegian Ardatrel. The last year was shere hell falling asleep while wandering around at night nothing helped. Then as faith would have it i developed acute pain along my whole spine, my doctor said i was anxious!!!! This is a doctor i have been using for over 20 years. I found a new one and was sent to 3 MRI's.

4 slipped disks 2 in my back and to in my neck, degenerative dis disease and Syringiomyelia and Syringobulbia.

Now on Valium and Codein (killed the RLS for the most part.
Zolpidem Actavis and Lyrica for neurological pains.

Do any of you know if RLS can be triggered from spinal injury, also had a compression fracture at T8.

Regards

Bjrn Eriksen

As I posted in another discussion, I have ALWAYS felt that my RLS starts in my spine. I broke my back at the age of 14, and have had RLS ever since. I can feel it start in my back, and then it goes to my legs and arms. There are studies that just came out a couple of months ago that measures "spinal fluid excitablility" in RLSer's during sleep studies, so that finally supports my theory for ME. RLS can be the same, but, yet so different as to what can cause it, but I KNOW mine starts in my spine, for sure.

Hi everyone
I had RLS for few years. I did not realize that my sleep study told that i have RLS. wow i am right. yes i have sleep apnea but dont feel that way while i slept.

Hi, I just joined this group myself. I actually didn't know some people experienced pain. My experience, and those of other in my family who have it, are limited to that strange sensation we're all familiar with that demands that I move my legs. I learned a couple of years ago from my doctor that it's related to my neuropathy. I take Tegretol and Elevil (just got off Lyrica) for that condition, plus Topomax for migraines, so I don't think I want to add any more medication. & my doc didn't seem to think it would be a productive move.

My symptoms come and go, but in the last year they come more than gone. Any time I'm lying down for a period of time, the feeling starts to come over my calves and I need to stretch and move them. But that's the extent of my symptoms.

m

Hello Hopetobefree,
I am a nurse and have heard of these crawly sensations that grow into that unpleasant need to move and walk. Patients suffer with this. I am a herbologist in Chinese Medicine. Patients that I have also tell me that they often get unsatisfactory results with Requip and have trouble sleeping like yourself or wake up during the night with the sensations. Chinese medicine is diagnostic based and we use signs from the body including the pulses to get info on a condition. I have found that the Liver pulse is often weak with RLS. Based on that and other characteristics of the syndrome, I have developed a Herbal Formula for my patients with RLS that has worked very well. In fact, they usually can discontinue the Requip or other med and achieve much better results including sleep at night. I have tried finding support groups to bring this formula to their attention. I am in Santa Barbara, Ca and I can't find one in my local area. I would like to do a clinical trial or some sort and see if this remedy can have broader help to others. Best of luck to you and if you have any suggestions, I would appreciate it.

i'm looking for an alternative to mirapex. i don't like the side effects. how long has the herbal medicine worked on patients? are there any side effects of the herbs? mirapex has greatly relieved my symptom, other medicines have,not worked. i really hope there is something e
lse out there. mirapex and requip causes compuselive behavior symptoms in me in never had. i'm turning into someone i don't know. its affecting my marriage and work life. need help badly.

Dear Hopetobefree;

I'm a newbie to this site. Very impressed so far. I've had RLS for 35 years and have developed symptoms similiar to yours about 10 years ago. I'm taking a combo of mirapex and gabapentin which has started to rebound on me. Requip totally freaked me out. One thing that helps me is to walk around the house for a few minutes before (trying to) go to sleep. I still get serious leg movement and have to get out of bed, but the duration of the sensations has diminshed quite a bit. My wife has a mild form of RLS and uses an oil called Leg Calm, which she applies to her lower spine. I believe it is sold by nature's remedies. Hope this helps.

I was in a car accident at 13 and injured my neck. Not long after that I believe is when I started having trouble. But I don't believe it's the cause as every woman in my family has RLS, I also get the feeling in my spint before and during an Rls episode,

I've had this disorder over 35 years.

I have had RLS for years, finally started on mirapex and vicidon, that really helped, but still could not sleep....now it has avanced so it has taken over my whole body, my stomach jerks, my legs twich and jerk, my hands shake. It comes at all times of the day and night....I now take mirapex, vicidon and xanax when I feel it start, which is usually every time I try to lay down and relax. I am 73, and I get tired easy, so I try to rest often, then I have to get up and take pills, wait for them to work before I get any rest....My dr. says it's also anxiety, so I try to live with anxiety, RLS, and fibromyalgia, and I just had surgery on my shoulder....I'm a mess....any hope out there>>>>Janet