RLS or not??

The neurologist I had been under for three years ( who has now signed me off!), insisted I had RLS . However, I don't have ANY jerking or thrashing of my legs at all my symptoms are: numbness in all my toes, although I can feel touch on them!!burning painful feet and lower legs. Often during the day if I am walking around I only get the painful feet. Come about 4 hours after I go to sleep I am woken with extreme burning and deep hurting of my lower legs I toss and turn but when I get up at about 7 am, almost immediately the pain goes !! I have tinnitus and angle closure eye problems and a lot of drugs I have tried exacerbate these problems so I can't take them. Recently my local pain clinic consultant told me he would suggest I try magnesium espartate and evening primrose oil. I have already started the 1000 mg evening primrose oil capsules and have had to order the magnesium espartate on line. I have had this condition for about 4 years, and have had every conceive able test possible. I am desperate for some good sleep, and can't take sleeping tablets either as I have also got burning mouth syndrome , which means everything dries my mouth terribly . Apart from these ' nerve related conditions', I seem to be quite well, haha !!!

39 Replies

  • To be diagnosed with RLS, one of the important parts of the Criteria is having the urge to move your legs, a urge you cant resist. It usual to have to get out of bed and pace to get some relief. There is no test to show you have RLS, its by how you describe your symptoms to your doctor. I am not 100% sure you have RLS.

  • Thanks Elisse. I agree with you, but everyone I have seen says I have!! Am absolutely stuck now. I did pay last year to see a different neurologist for a second opinion. He said in HIS opinion it was more likely peripheral neuropathy. Nobody else I have seen agrees. Maddening to say the least !!

  • I would agree with the neuropathy diagnosis. Depends on your definition of the pain- actually hurting or more tickling/ tingling?

    On the magnesium aspatarte- my research throws up that this has dangers for rls sufferers in that it is related to aspartame and so a potential trigger. Citrate or glycinatemight be better and more commonly available.

    Good luck.

  • Sounds much more like Peripheral neuropathy than RLS - the burning in the feet is a give away imho and you find it painful to walk whereas with RLS the pain is reduced by walking. Without being too prying are there conditions fro peripheral neuropaathy - any past alcohol misuse, any diabetes? Mind you if you have either of those and the Dr has diagnosed RLS then avoid that Dr like the plague!

    Something you have obviously experienced - not all Drs are good nor will listen to the Pt. My personal advise is to seek a Dr that is not only willing to listen but that actually knows what they are doing.

  • Hi Raffs. In answer to your questions. Hardly drink at all. I don't have diabetes. Apart from these 'nerve related' problems I am( hopefully) really healthy for my age!!!!

  • Just thought I'd throw them out as they are two major causes of PN, even heavy drinking in the past can lead to it.

    Still would be leaning towards Peripheral neuropathy

  • Well I have never drunk don't have diabetes do have fibromyalgia and do have both RLS and peripheral neuropathy.So you don't always have to have the two you stated abovexx😇

  • Certainly not. Unfortunately there are a number of things can cause it.

    And fair play for never drinking!

  • I tried it once but hated it Never even tried smoking just hated smell as I grew up amongst smokers .Everything I have wrong with me is nerve endings even stomach problems .I don't mind others drinking I'm not like that as long as no violence not keen on those sorts of drinkers .xx

  • I would be of the same mindset, if alcohol brings out nastiness address the nastiness before the alcohol is used again.

    I wish the first time I tried it I didn't like it - would have saved a few sore heads :)

  • Ah bless you and money.I wish I did like it ,it seems like a nice social thing .xx😇

  • Can be social, unfortunately there is much antisocial behaviour around this drug, more so than most.

  • I know and it's a shame I feel ashamed of some of the Brit kids who go abroad and I said to mine I never want to see you're back side grinning at me on tv .xx😇

  • I'm the same. I've always told them that when they are abroad they are representatives of their family, community and country and anything bad they do people will tar the rest of the Irish people the same.

    My brother went to Tenerife when we were young and told me of gangs of English and Scottish fighting and one guy jumping on another guys head. Add to that the media coverage of 'Brits on the piss' I avoid places the young British would flock too, (that is not saying I haven't met lots of decent Brits abroad because I have), and so far no ones jumped on my head :)

  • Well I'm very pleased to hear you're heads intact always good to know lol.WellI think I'm the same I would never venture to places they go to get drunk .Its not only their fault I blame the people who sell it to them cats of the stuff so,cheaply xx😇

  • Doctors know so little about RLS... My neurologist mentioned that the newest research may show that hyperactivity in children may be RLS! IDK about that... There is so much they and we don't know about this syndrome.

    Anyway, when I first got 'diagnosed' with RLS many years ago, I DID have the urge to move my legs and the symptoms were very localized in my legs, especially the left.

    After weaning myself off of Klonopin last year, symptoms went nuts and I have had sensory symptoms even on the tip of my nose! The urge to move is much less, though moving around almost always reduces sensations in all body parts and areas.

    I was tested for PN this year and do not have it, or, didn't at the time.

    So I'd say that if it's RLS, that is your unique RLS. Not everyone has the same symptoms, it's just the same enough to be under the umbrella of RLS.

    I use only hemp oil now, before bed, and once during the day if I have bad symptoms. After a half hour or so, I paid close attention to how my legs and back felt. I had nearly imperceptible sensations but did have difficulty getting comfortable to sleep. I have been taking hemp oil for several months. I woke up with lots of 'symptoms,' both in the middle of the night and in the morning, but not the urge to move so much.

    I hope this helps.

  • Hi. I would be. Dry interested to hear exactly WHAT test you had for PN. I don't think I have ever had a SPECIFIC test ever!!??

  • It was a hands-on thing the neurologist did. I didn't pay a lot of attention to what he was doing or asking me to do. He specifically said he was "going to test ... for peripheral neuropathy." Probably not much help for you.

  • Thanks anyway!!

  • Hi Buci,

    I just re-read your thread from three months ago. Did you get your ferritin level checked and if so what was the result?

  • Hi Kaarina. Yes I did. They were " normal 138" I was told by my GP!!??

  • Just a thought, Buci. Have you tried a magnesium spray oil? I wondered if it would help when you wake at 4.00 am if you sprayed your feet with it? Or before you go to sleep? I understand it can initially sting a little but that goes. I see it has been suggested by your local pain consultant that you take some magnesium orally.

  • No I haven't, but will certainly give it a try. Do you make it or buy it, and if so, from where?

  • Hi Buci,

    This link may help healthunlocked.com/rlsuk/po...

    You can purchase the magnesium oil on line ie Amazon/eBay or from a health store ie Holland & Barrett.

  • Hi Kaarina. I bought some to try, have used it for 2 nights, with no relief so far! Should I expect it to work immediately or does it take several days or even weeks to start working. I am waiting for the magnesium aspartate capsules as recommended by my consultant, to arrive any day now.....

  • As a sufferer of peripheral neuropathy as well as RLS it does sound more like PN.

  • Hi Martino. That is what I have thought all along!! Can you tell me exactly what symptons you personally experience of both, and what you find helps please. In desperation I am now going down the route of alternative medicine. I have tried acupuncture- no help. Have been to a podiatrist who has referred me on to try a reflexologist which I hope to see this week. Then if no help , on to a sports therapist to try some foot and leg massage, and on and on and on ........

  • Hi Buci

    It all started about two years ago when one of my legs started to jump just as I was falling asleep. On reflection I have had pain in my calves which I put down to varicose veins. When I saw the doctor he suggested RLS then after some meds I was sent to a neurologist. I will add more later as I have too out.

  • Hi Buci

    The neurologist was reluctant to confirm the RLS diagnosis because of the amount of pain I said that I had. He arranged a nerve conduction test which showed I had SFN. Looking back I had much of the leg pain that others describe but always put this down to RLS . I often wake up with lower leg pain and when I get up this reduces. The problem I now have is understanding where the pain is from. Is it RLS or PN?

  • Hi Martino. Your symptoms sound EXACTLY the same as mine. I also had the nerve conduction tests which were apparently normal.

    I misinformed on my post saying my neurologist said I should take magnesium aspartate, NOT aspartame !! Many apologies all round !!!

  • Sounds like Gout to me. You may want to look into that. You have many of the symptoms. Could be blood sugar but you dont mention that possibility.

  • All my bloods etc , according to the report to the GP and consultant appear to be normal!! I wonder if it could be anything vascular, but this is discounted by all the medics!!

  • What is your B12 status and I don't mean just Sr B12? Active b12, mma and homocysteine ?

  • Muhammad

    Vitamin B 12 is 679 ng/L

    This is the only reading for B 12 results!'

  • Doesn't sound like RLS to me...

  • Please check out this video on Youtube about B12. It could be the answer to all of our health problems or at the very least quite a few of them?

  • Thanks. Have looked at the video. Very interesting, but my GP insists my big B 12 is normal. I think sometimes they just don't want to spend the money!! However, I spend a few winter months in Spain each year and there I will go to a private GP - interfered , at a private clinic for about €60. I can also have any blood tests done at the clinic, again no referral needed, and the results are ready NEXT DAY!! Bit different to NHS..... so I shall have myself investigated a bit whilst I'm there. At the moment it seems to be one step forward and 5 steps backward, getting nowhere fast !!

  • Hi, my husband started having restless leg symptoms at night a few years back. In his sleep in the middle of the night his legs would start jerking. I used to think he was dreaming of running. During the day he would often complain of tightness in the muscles in his calves. Long story short, he started on magnesium citrate 200mg, after we researched it on the web. After about 10 days the jerking in his legs stopped. He has been taking this for over 3 years now. It is only if we run out of the magnesium and forget to take it that the symptoms come back. At times he will up the magnesium to 400mg. Magnesium is necessary for the smooth action of the muscles. It definitely works for him. Good luck!

  • Well I don't think it sounds like restless legs but like something I suffer with peripheral neuropathy it's burning feet sharp excurtiating stabs in you're toes . Restless legs which I also suffer badly with means you can't keep you're legs still ,I now how all over RLS which is just the pits .xxx😇

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