RLS or not

[Deevee]

I’m not sure whether I have a mild form of RLS or not. It’s a feeling of heaviness in my legs and I have to move them They don’t move on their own. It’s seems to radiate from my back I have spoken to my GP a few times but it seems to be dismissed. One said to drink tonic water, which I have. It just feels like a physical feeling of heaviness from my thighs down and then a warm feeling and a feeling of having to move my legs. I tried mind over matter and not move them but it’s a strange weird feeling. I have taken co codamol which helps but I only take them before I go to bed have tried raising my legs higher. Is this a form of RLS? I’m not sure as it’s so hard to explain. When I have this feeling, I feel like I need to hold my breath ! Thanks

[Hidden]

Hello and welcome.

An urge to move that's helped by an opiate. It's occurring at night, and you are unable not to move - unfortunately it sounds to me like its RLS. BUT that does not mean it is.

Take a look at the link below, it will point you in the right direction:

rls-uk.org/diagnosis

Is there a family history of RLS? How long has it been going on for? Have you any issues with low Iron? Did the RLS start around the time you began a new medication?

A little more back ground info can enable us to help you more.

My RLS seems to radiate from my lower back/coccyx area although when I was younger I can't remember it doing that!!

[Deevee in reply to Hidden]

Thanks so much. Brilliant help From that scoring I may have RLS but mild. It is when I’m sitting at night, long car journeys or plane. It never wakes me up but I’m not a good sleeper anyway. It has been for years but sometimes not as bad. I was on Naproxen for a while for joint pain and it didn’t seem so bad. Doctor took me off and it has come back. My bloods are good as far as I am aware

[Hidden]

I agree with raffs, it does sound as if it could be RLS, although "heaviness" is not how I'd describe the unpleasant sensation associated with RLS. However, you do say "weird" which I can identify with.

Hopefully you've now looked at the criteria that raffs referred you to.

You do apparently get the urge to move, that fits.

If the feeling is relieved by moving, which you imply it is, then that fits.

You don't actually say if you only get this at night or when trying to sleep. If this IS the case then this too fits.

Unfortunately your doctor doesn't sound helpful at all

Quinine is an old fashioned remedy for restless legs. Its use has been largely discontinued as there are more effective medications and because there are some risks in taking it.

There is quinine in tonic water, which might explain your doctor's suggestion. However, in order to get an effective dose of quinine from tonic water you'd have to drink about 20 liters a day (4 1/2 gallons).

Did you say witch doctor?

If you do think you have RLS but only mildly, there are quite a few non medical remedies you can try. Some might depend on whether you have any identifiable vitamin or mineral deficiencies. It might be worthwhile visiting your doctor again, (or another one) and asking for a few tests.

If you do it might help to read the NICE guidelines on the management of RLS, printing them out and taking them with you. They outline what doctors are supposed to do.

Here's a link

cks.nice.org.uk/restless-le...

[Deevee in reply to Hidden]

Thanks for a brilliant reply. I had a medication review with the doctor and he said my bloods were fine. I’ll have to ask if my last blood tests included iron. I’ll phone on Monday. I have genetic high cholesterol and am on a statin but must say I don’t always take it but haven’t noticed the sensation more or less with them. I’m going to keep a diary of when it occurs and if I have taken anything. When I go to bed and the feeling occurs, I take co codamol. Thanks again

N

[Hidden in reply to Deevee]

"Brain iron deficiency" (BID) is associated with RLS. It can exist despite there being no Blood iron deficiency. Your doctor may have tested your Haemoglobin level and serum iron, but this would not indicate if you have BID or not. "Ferritin" level, is a better indicator of BID.

In addition, even if Ferritin was tested and your doctor told you it was "normal", normal can mean anything above 20 units, whereas for someone with RLS anything less than 50 is poor and some experts say it should be at least 100. You might like to ask then, was Ferritin tested and what was the actual result, the number.

If it was done and it was below 100 you could consider taking an iron supplement, but seek further information on the best way to do this. It's not straightforward.

The deficiencies which can lead to RLS symptoms are vitamins D and B12, magnesium and potassium. Were these tested?

You could actually try taking supplements of these relatively inexpensively. However, steer clear of taking potassium if you have any actual heart problem or kidney problem unless your doctor says it's OK.

If looking at a medicine review then you could also see if anything you're taking might be adding to a RLS problem as there are quite a few medicines that trigger it, or make it worse. These include many things beginning with A! Alcohol, (some) antidepressants, (some) antacids, antihistamines, anti-sickness medicines and possibly some statins

[Hidden in reply to Hidden]

Yeah + on the statins, there have been a few on here that have had their RLS exacerbated with a statin.

[Sara_2611]

hmmmm not sure ive not heard of holding the breath

[solticeart]

No I get that heaveyness feeling too. Or like my legs are filled up with something lol hard to describe. I also get bad leg aches sometimes with mine too but mine has morphed a lot since I got it. I also get a tingly feeling in my feet and now it’s all mostly in my right foot and leg unless I don’t take anything for it then it will go to both legs and full blown rls. Just wants to point out that your not the only one that gets the heavy feeling in your legs too.

[Hidden]

Hello

This probably won't help you but I had heaviness in my legs so much so that eventually I could barely walk to the corner shop. Cutting a long story short, I went to my GP and sort of bypassed Neurology and ended up seeing and Ortho consultant. Eventually I was given injection in each of my sacroiliac joints and after 8 days my legs started improving dramatically and stayed that way for several months, injection wearing off now and going to see consultant again soon.

I had hoped it would help my foot which is supposed to be RLS but doesn't fit the criteria, long story again with not very helpful neuro consultant so an ongoing issue there.

Just felt it would be useful to say that there are other conditions that seem to get mixed up with RLS and peripheral neuropathy and GPs are just that - general practioners and not experts.

I am no expert but do know that you have to do the research yourself and then try to get the medics onside! Someone once said if the queen had this then there would already be a solution. Also its a pity we are not able to reproduce any of these type of pains so that medics could understand better.

[maidar]

HELLO! I have RLS and use THERMAWORKS RELIEF which I put on my legs every night before I go to sleep! It is $20.00 but lasts for a very long time! Maybe you can give it a try!

Good luck!