Possible RLS doctor looks at me like I'm crazy!

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I've had a weird, I'd say pain but it's hard to describe so I'll say a weird feeling for a while now in my left leg. I get uncontrollable urges to move it, it started happening just before bed but now it's started to happen during the day. The only thing that I can do to stop it is to go on a walk but it's just not possible when I'm at work. I'm not getting enough sleep so I'm now getting headaches and my work is suffering. My doctors has sent me for An X-ray and previously prescribed amytriptiline but now that's gone and the X-ray is clear he's sent me for a blood test but won't prescribe me anything else so back to restless nights which I'm dreading. It seems he doesn't have a clue what could be wrong and I'm getting to the end of my tether now! My blood test isn't until 10th April, so looks like sleepless nights until then sad

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  • Posted

    Hello

    I have RLS and have done a lot of research on the subject.

    There are a lot of theories about RLS, I could go into a long list of possible causes. But what I think I will do is explain two things I do that allow me to sleep quite well and get relief from RLS

    1.       This is an exercise lasts about one minute done just before going to bed or when the irritation starts…stand only on the offending leg squat down bending as far as you can now it’s like doing squats with one leg you don’t straighten your leg just pump it from a squatting positon  up and down as long as you can you will feel your leg tighten and start to burn this is your leg muscles creating lactic acid this is what you want, you keep up this action till you can’t do it any more ,in my experience this is about a minute depending on your age physical shape. You might have to repeat this a couple of times a night if it flares up again, for me once a night works. If you need more instruction just contact me.

    2.       The second way of getting relief ,very simple you use a tens machine, I put the 2 electric pads on my calf set it for as strong as I can stand two 15 minute sessions does the trick. This has the added advantage of a longer lasting accumulative relief doing this every night you might find the odd night you can go a night or 2 without using the tens machine and getting a good night’s sleep. Again any questions just contact me. Just have to add though RLS usually is accompanied by jumping leg, alas my RLS relief practices do not address this, but I am working on itJ. Let me know how this works for you if it helps please tell me.

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  • Posted

    I pop my foot in bathroom sink and run the coldest water from the tank. I splash all up my leg, this seems to calm the legs down. I also give myself every now and again Ferris Sulphate (iron tab) don't advise taking this until after blood test. 

    Maureen

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  • Posted

    Ok, I know a lot of folks may disagree with what I'm going to tell you but when RLS bothers me at work I actually take a small dose of caffeine and a full glass of water. I know caffeine is one of those things that is know to aggravate RLS but I really believe it's when it's in cokes, coffee, or tea. I've been doing the caffeine and glass of water for years now. I think it improves blood circulation which seems to help with RLS (the reason exercise helps). I get the generic caffeine tablets at Walmart and cut them into 4 pieces and keep them in a pill fob in my pocket. I take the equivalent of 1/2 cup of coffee. The other thing would be to avoid coffee, cokes, and tea. Definetely try to avoid sugar and sweets.

    In the evenings, try to avoid sweets, cokes, tea, fried greasy foods. If you can avoid eating after 7PM, that makes a major difference. Magnesium citrate helps. There are drugs you can get for RLS but most of them either have side effects or make you feel groggy the next day. If you like spinach or other greens, they also help with the RLS.

    If your legs start to bother you after you go to bed, you can get up and do leg stretch exercises. That usually helps me go back to sleep.

    Good luck. I've had RLS for probably 40 years. I've tried a lot of different things over the years. Hope some of this helps you.

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  • Posted

    Hi Alicia. Try to notice what you are doing directly before the rls strikes at work. I have various triggers. One is resting anything on my lap for more than a few minutes. Another is sitting on my hands (a long standing habit of mine which is difficult to break), and if I sit on a chair which is slightly too high so that the edge of the chair digs in to the back of my legs. If you have an adjustable chair at work, try lowering it an inch or two and see if this helps. Always be the one to make the tea or go and buy the cakes or whatever for your colleagues. This way you get regular chances to stretch your legs! Good luck. Debbie
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  • Posted

    Hi Alicia,you dont need blood tests or xrays for this,you have what is called restless leg syndrome,there is no cure,but treatment is available,tell your doctor you have this complaint,if you are not on any other medication low doses of ropinirole or pramipraxole will stop it.Regards John 
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  • Posted

    Hi Alicia,you dont need blood tests or xrays for this,you have what is called restless leg syndrome,there is no cure,but treatment is available,tell your doctor you have this complaint,if you are not on any other medication low doses of ropinirole or pramipraxole will stop it.Regards John 
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  • Posted

    Dear Alicia

    First find another doctor and when you make the appointm,ent ask if he knows anything about RLS.

    Read the discussion "RLS and Diet" on this forum

    Try the excercises other people have found help them.   It seems to be a very individual desease so do anything that doesn't look dangerous and let us all know if it helps.

    I would definately say try the FODMAP diet because it has helped me and others.    Unfortunately the only way to know if it will help you is to try it out.

    If you want any more info just give me a message

    Cheers

    Graham

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  • Posted

    Alicia, I am 76 years old and have always had movement in my legs for a little while before following asleep until 6 years ago. At that time I had knee replacement surgery and since then have had to have treatment for RLS. My symptoms are classic for this disease which is a miserable disease to control and no cure available. My heart goes out to you . FIRST! Find a doctor who will treat movement disorders as well as sleep problems because you will need treatment for both. You need to have a blood test to be sure you have enough iron (that is being absorbed by your body). It would be great if our general physicians would treat thsi but mine wone't. In fact, a neurologist or psychitrist might be your best answer.

    Usually, a sleep study is required which may or may not show anything.

    As far as medication, it is trial and error to discover what works. I take 1mg ropinirole ER (requip) twice a day and set my alarm on my phone and pc otherwise it takes abut 2 hours for it to work if you have forgotten and at 10 pm that isn't fun. I also take gagapentin - 600 mg at night and 1 mg Klonipin at night for sleep. Until I had this disease I didn't take anything. I still wake up in the middle of the night but have learned to accept that this is now my life. I wish you luck in finding the right solution for you situation.

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    • Posted

      I place a pad on either side of the calf muscle and use the  highest  power  setting I can manage comfortably, the idea is to get the muscle to create lactic acid and for some unknown reason it relieves the RLS. You can also stand on one leg bend it and hold till you feel your leg muscle burns

      Hold it for as long as you can, the whole process takes about a minute, this too has the desired effect of creating Lactic acid and relieves RLS. Let me know how this works for you.

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    • Posted

      Dear Glen

      Thanks.   I think a one leg bend until it hurts will be amusing to spectators but very quick.   I'll see what I can do with the aid of a chair.  Otherwise its off to the TENS machine.

      I have been doing some excercises as a test subject for an experiment but its a bit different in that after I stress the muscles I do some shaking around.    Im not sure if its helping the RLS or not just yet but I was amazed to realise the other day that my sciatica has disappeared.

      If the other excercises are any good I'll post the details up here.

      Now I will see how straight lactic acid generation works for me.

      Thanks for your help

      Cheers

      Graham

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  • Posted

    I am 71 and have had RlS for many years, although I have been prescribed premise ole and trauma dole, I found that at times this still did not work, even when doubling the dose. I am now using radium B spray and after taking only one pill I spray my leg. I now find that I am 90 percent free of RlS. Hope this helps you. Regards Patricia
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    • Posted

      Dear Patricia

      This sounds so easy I have to try it.   Although my RLS is mosly gone because of my diet there are still occassions when this might be handy.    It might also allow me to expand my foods with a backup in case I eat the wrong thing.

      Thank You

      Graham

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