Restless Legs Syndrome
10,178 members6,289 posts

Unsure of my symptoms

Hi. This is really interesting. I haven't got things half as bad as a lot of people and I thank my luckily stars. Last night it started again (so I haven't really slept much. I did take codeine and paracetamol and that helped) but one thing I would like to know is that I know this site reaches all over but how do you know what country people are from as different countries have different ways of prescribing. I have mentioned this RLS to my doctor (UK) and haven't got very far but haven't pushed it as it isn't half as bad as it could be. I often feel like it has something to do,with my breath and because I can't explain it properly I feel like an idiot. I'm not afraid of my GP but it is the explanation that I find difficult. My legs don't twitch or lash out. I just feel like my blood in my legs Is getting heavy and my breath goes with it, so I hold my breath and count slowly to ten. Even that doesn't explain it and and I wonder if anyone started like this or am I daft and making a mountain out of a molehill. It is uncomfortable and sometimes I just have to stand up and walk around especially at night. I know everything is worse at night and it does happen in the car, watching TV. Never whilst exercising. I really do understand that people are really desperate with this and may be thinking what's she on about but I wonder how it starts with a lot of people. Thanks for listening and hope you all find some peace with it in the new year.

4 Replies

Not sure you have RLS. Look at this link it shows the criteria to having RLS. See if ALL of the criteria relates to what you are having.


You may also find it of some help to look at the RLS-UK website, if you have not done so already:


Have never heard that description at all. Holding your breath may be a distraction, but can assure you it has nothing to do with a neurological disease. 70% of all RLS is genetic, so that explains why 70% of us have it. They discovered the RLS genes and named them in 2004 and 2007. Many people have many triggers. RLS is basically- We have enough dopamine in our brains, but it is blocked by many things, and cannot pass over the blood brain barrier. For example, Parkinson's is a lack of production of dopamine, hence why doses of same meds used for both things are so different. Parkinson's doses are much higher because those people just do not have enough. Also, in SOME people it can be a low ferrtin level and iron/ or iron infusions can help. It is not a normal iron serum level test, it is a different test. Ferritin shows HOW our bodies store the iron. Some people are helped with iron infusions, oral iron takes forever. I had 3 infusions done, and we got my level up from 6 to 152. Did not help me, but my meds do, It is all trial and error. Also, many meds we take for other conditions can make RLS worse, over the counter and also prescriptions. The list of drugs to avoid, which you may not even think of some of them, is on the RLS-UK web site, for one, and also If your GP is not helping you, then you need to see a sleep doctor or a neurologist, since RLS is a neurological disease with no cure as of yet. Treating it is all trial and error, so good to have knowledgable doctor. But, the main criteria to diagnose RLS is the "urge to move that cannot be ignored". So, the breath thing is only going to confuse your GP who does not understand anyway. We have a lot of people from the UK here, and many from the US. But, my best advice, if you think you need meds eventually, ask for a referral to a neurologist. Sometime finding the right doctor is trial and error just like the meds. :) The first one does not always work. Good luck! The best thing you can do is to read the reputable web sites. Knowledge is power, for sure. Happy New Year!


The fact that you have difficulty describing it, ironically, is a feature of RLS. I'm like you, fairly new to it and glad that mine is thus far mild. Yet still annoying! My sleep Dr (USA- west coast) is the one who diagnosed it. Apparently they saw something on my polysomnogram, so he asked me questions -- and I said I've got a ...just a weird feeling that's hard to describe but like creepy-crawly and my legs feel really funny when I'm trying to sleep. He then read a definition to me, which I forget, but was EXACTLY what I was experiencing, so I said "yes, that's it." He said, that's our definition for Restless Leg Syndrome.

I have pretty severe sleep apnea, fairly well controlled with CPAP now. I also have varicose (incompetent) veins in my legs (below the knee, not above). And low ferritin. Interestingly, RLS is associated with all 3 conditions.

I wonder if you maybe have varicose vein and that's triggering your RLS? Note: varicose veins are big veins, different from 'spider veins' You can have varicose veins inside your leg (sapphenous veins) even if you don't see anything on the surface.

So the one thing that helps me but I'm not sure would help those with more severe RLS, is that I wear Zensah calf sleeves all day (helps with varicose veins) and usually at night. Either the compression or the tactile 'feedback' that it provides to my skin, or both, reduces my RLS to nil most days.

I have found that Capezio Hold & Stretch tights work best - they're tighter and provide real compression. (Capezio #14 - footed, #15 - transition, #145 - stirrup, #1862 - it just depends if you don't want your foot or toes covered). 'Softer' / stretchier tights help a little, and are easier to get on, but don't work for me nearly as well as these stronger dance tights. By the way, I'm a man, which is why I went the dance tights route since they're unisex fitting and come in men's sizing. If you're a female, you probably have a lot more (probably cheaper) options like women's stockings / pantyhose that you could try. But I think the important thing is that they have to provide some actual compression / support, in order to provide stimulus to the nerve endings in your skin.

This is just my theory. Works so far in my case. But everyone may be different.


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