re restless legs when standing

I have had this since I was a teenager and now both my children age 9 and 11 are describing the same problem, I am unable to stand still. It has made waiting for a bus or in supermarket checkouts very difficault. I have recently started to inject with B12 which has helped memory but standing still is still very hard. My legs just feel very uncomfortable sort of weird feeling if I stand still. I do get restless legs now if I am very tired in a chair but this is only recent.

[Tapir]

I have suffered from restless legs from my twenties but only occasionally. As I got older the frequency of attacks became more problematic. About10 years ago I started having very severe problems, particularly at night. I found that excluding all dairy products from my diet caused my RLS to disappear instantly. I had 2 years of freedom before it came back. I suggest you try a change of diet.

Eventually, like many here I ended up on dopamine agonists, which are effective, but if you are one of the unfortunate patients, like me, in whom it causes augmentation the night time problem can become a 24 hour problem. I wish I had never heard of these drugs.

Hope this helps.

[Neil46]

Hello mandyjane

I am so sorry to hear your children have it too. It may be more difficult for them as it may be mistaken for "being difficult". You say you have only recently recognised restless leg symptoms. How does this differ from the "standing still" problem?

As you are injecting B12 I assume you have had diagnosis from your doctor, together with blood tests for ferritin, potassium, sodium, magnesium etc. Is this correct?

[Hidden in reply to Neil46]

Thanks Neil,

I think the standing restless legs are similar to the restless legs I now get when sitting and tired or sometimes in bed. It almost feel though that my legs dont belong to me when standing and that I am unable to stop them moving. I remmber having the rather paraniod thought as a teenager that I was controlled by aliens who were making my legs go when I wanted to stay still.

No diagnoses from drs re B12 issues. Started as a desperate measure when I appeared to be having a nasty bout of dementia and have helped hugely so I have continued. I was on iron re low ferritin but Ok now and have had loads of blood test via a neurologist. Not sure if she has tested for potassium, sodium and mag. I used to have epsom salt baths but due to balance issues unable to get in and out of bath now.

[Neil46]

Do you know your serum ferritin result? Neurologists and doctors may say a reading of 15-20 is ok and "normal" but for an RLS sufferer 75-100 or higher should be achieved. I am a little concerned that your version of RLS is different from my experience so I may not be much help to you. I can suggest magnesium oil (magnesium flakes and warm water in equal measure at its simplest) sprayed and rubbed into the legs as it has helped many on this site.

Do you feel an irrestistable urge to move the legs or do they jerk or jump on their own? Have you been told that they jerk when you are asleep and you are not conscious of it? Do your limbs tingle or give you stabbing pains? Sorry so many questions

I am assuming you have never taken medications for restless legs.

Best Wishes, Neil

[Hidden in reply to Neil46]

I certainly do get the irrestistable urge to move legs. I try to resist but the need to move seem to sort of build up untill I move and then after just a few seconds the need to move starts again. I do think I jerk or have my legs jump on their own. No tingle or stabbing pains.

I will have a go with some magnesium spray. The inability to stand still but the restless legs in bed or when I am up late in the evening are thankfully only happening when I am over tired.

I have never taken medication for restless legs and am very wary of doing so unless the drug is an older drug. I do take amitriptaline to prevent migriane and I think it helps with this as well.

[Neil46]

Hi mandyjane, I hope the magnesium oil helps. Looking around (magnesium oil in the Searchbox) some people also use epsom salts and water and I've seen a recent post with a different recipe too.

I asked about the tingles (could be nerve damage) and stabbing sensations because I sometimes feel as if a needle is stabbing my foot, which actually makes me jump.

Many people experiment with dietary changes (fodmap, paleo etc) to try to find triggers for their RLS. I am sure that our digestion has a lot to do with many diseases.

I agree with you that meds should be a last resort, but everyone seems to react differently. Have you checked out the RLS-UK pages? There is a Diagnostic check and under Treatment there is a list of meds that might make RLS worse. Amitriptiline is one mentioned there; might be worth investigating? There are lots of posts here about different meds, you have probably read them and found others' experiences.

Please let us know how you get on

Best Wishes, Neil