I was just diagnosed with rls today because for the past 2 weeks my feet have been so sore and feel as if they are getting pricked by needles. The one thing that is scarying me the most tho is the fact it feels like someone is pushing cold water into my veins. I can feel it from my ankle to my knee. It's like the insides of my legs are freezing cold. I also have anxiety and it's causing my anxiety to get worse. Does anyone else get this cold rush in their legs? It's starting to worry me

17 Replies

  • Welcome to the club. I don't have the cold rush sensations that you have; mine are more like little worms crawling in my lower legs. You might want to buy the book Clinical Management of Restless Legs Syndrome, by Lee, Buchfuhrer, Allen and Hening. It is a comprehensive book covering the main issues that we sufferers deal with.


  • Hi

    I don't get this sensation but always have cold legs- rest of me is warm but am always in front of the fire warming legs and feet. Try not to worry too much - stress definintely makes things worse. Try to get your GP to try some medication, which may take a while to kick in but go with it. There are lots of us in the same boat - you are not alone which has helped me a lot in the past- particularly in the middle of the night.

    Good wishes

  • I hope your doctor has been thorough in his diagnosis since those are not what I consider typical symptoms of RLS particularly if you only had this for a few weeks. Do read the book, and consider getting a second opinion.

    I would caution you in starting any of the dopamine drugs typically perscribed. At some point they could make your symptoms worse.

    Has you doctor checked your iron levels? That should be the very first step if he suspects RLS.

    Best of luck

  • Hi Morgs40 I'm with gretakmac - between what seems like an extraordinarily fast diagnosis and symptoms that don't quite match - I would be seeking a second opinion.

    What did the GP check to rule out other things, (what blood tests, etc)?

  • I had those sensations when I first had neuropathy. Has anyone suggested that to you including your doctors? You have the two classic symptoms. Prickles on your feet and feeling like you feet only are suddenly in some kind of deep freeze. Yes,

    that is PN

    You may also have some restless legs as I do.

    Anxiety like I have is terrible to live with. I have several things that cause it

    and no way to shut it off yet but I am working on it. Paxil USA Drug helps

    a lot. Maybe you can check if your pharmacy carries it or has another name

    for it. SSRI drugs must be available there. It would be classified as a Anti

    anxiety drug.

  • I also was thinking neuropathy does not sound like rls

  • You may have both RLS and Neuropathy. You are going to need the help of your doctor to get it treated properly. It's best to start dealing with the neuropathy in your feet first (assuming it is that) and the type of doctor that you really need to see is a neurologist. Lucky for you, they specialize in both RLS and PN.

    They may even have some trouble so they usually need to do some tests to find out what's what. A nerve conduction test will help to tell for sure. The physical exam might be enough to give you a good answer too. Good luck.

  • Thank You and yes I do have neuropathy and rls

    and yes its very hard for me But they put me on 12 mg patch of Fentenyl and it actually works Thank You

  • I do have both as well. I was doing Lyrica and my job is to get off of it now to switch to topamax. I want to break the pain cycles too Lyrica worked excellent but I found myself doing strange things in the middle of the night (or others found me doing them so I'm done with it as soon as I finish the weaning.

  • Paxil is an SSRI drug, on the usual 'no no' list for us. For 99% of us, this class of antidepressants CAN make your RLS worse. There are always exceptions.

  • You might also want to check side effects of any meds you might be on. Statins cause all kinds of trouble with leg pain and neuropathy and doctors are all too ready to treat side effects with more drugs. Just a thought. If you should be taking statins, check out spacedoc.com for more info.

  • You're the first person I have read about with your symptoms. My husband is a type 1 diabetic and he has severe neuropathy in his feet and those are the symptoms that he has. I also JUST read here on this website that RLS isn't really associated with pain, that there is an underlying problem. I have had RLS ALL over my body which goes by another name, but I have never had pain of any kind. To be diagnosed with RLS so quickly doesn't seem like a good diagnosis. Have you been checked for diabetes? Diabetes goes hand in hand with neuropathy, also your doctor should check your blood circulation. I don't have much more to offer, but there are many people here on this website that are very knowledgeable and offer a lot of help. I hope someone comes up with a good response that will match your symptoms. I have learned so much from being here and everyone is more than willing to help. Good luck and I hope you find your relief as best as possible.

  • Everybody will describe the way their RLS feels to them, whether it is prickly, wiggling worms, pins & needles etc, and it can be a painful aching type feeling. But my doctor said rls sufferers will all describe it as creeping up their legs from the feet.

    Only having the sensations for 2 weeks does seem quick, fingers crossed for you that it may be a temporary problem. RLS sufferers should have their iron serum checked as this can be the cause. Get your Dr to check this for you.

    I haven't had the freezing sensations, more the opposite in having 'hot spots' as i call them, Where it feels like heat radiating in a patch! or the sudden need to stick hands in cold water when soaking my aching prickly legs in a hot bath!

    Hot bath & hot water bottle on legs at night works best for me.

    Good luck

  • Some people do get pain with their RLS, i know i do, i get that painful aching feeling. Pain is now reconised as a symptom of RLS these days. :)

  • Morgs40, if you had each person who has RLS describe all the sensations, where they start, how they react to whatever medicine, you'd get a different description from each.

    The one thing that seems common is the urge to move is so strong that one feels that if they don't move they will go insane.I just finished treatment at Mayo Clinic in Az and one of the interviews was with a neurologist who only does restless legs treatment. It almost seems as if the patients are smarter than the doctors. They ask what have you tried so far and did it work at all. Well maybe we will try this and if that doesn't work we'll go to that, and somewhere along the way we will find a treatment that will give you some relief. Ten percent of the people in the world have RLS and the money devoted to research in it is almost nonexistant.

    Only 3% of the world has Parkinsons disease and there is a foundation and hundreds of meds they prescribe and doctors know a lot about it. Theats a disease with only about athird of the cases and drug companies are mostly unaware it exists. What we get is what they call ''off label'' drugs. That is, drugs that were found accidentally, to work a

    little bit and after awhile they will add RLS to the list of what they are good for, and not one has had a double blind study done , and not one study has been done with the goal of finding out where the sensations come from and why along with what deficiency of what enzyme or nutrient….Maybe this, or maybe that, is not science.

  • That does not sound like RLS to me. I have had it over 30 years. I don't have any of the sensations you decribe. I know everyone is different, but I never heard of those symptoms with RLS.

  • I am sorry about your legs but I don't think its rls what ever your doc says it sounds nothing like it,you never mention the walking about and with rls that's the main thing x

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