I’ve been having issues with my legs for a few years now and spent 8 months going through GP, hospital appointments and physio to no avail. I eventually gave up and have toyed with different diagnosis in my head, but RLS is the first I think sounds the closest/most reasonable answer. I’m still not 100% sure and could do with some experienced advice to rule in/out before approaching my GP again as I’ve had enough and need answers/help.
I could go a week or 2 with nothing then maybe a bad day or week or month. My legs start to ache, usually early evening, sometimes earlier if we’ve been out shopping, walking the dog, etc. My feet can almost feel numb to the point I can’t bring myself to put weight on them to stand up. With this my calves usually have a pulsing feeling, almost like worms moving around the outside of my muscles. I often end up bouncing my legs and moving them, not through choice but quite constantly. I generally sleep no problem but the walking bit and pain from it really bothers me. I don’t know if it’s related but I also get a twitch, usually one shoulder but often my lower body, and often both. It’s a totally involuntary movement and very quick, sometimes resulting in a sore lower back if I’ve had a lot that evening.
Hoping some advice on here can help me rule it out or confirm I’m at least barking up the right tree.
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Rover1234
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Your symptoms do not sound like RLS. I have RLS and I wouldn’t describe it as an ache, never experienced numbness or ever had and issue bearing weight. I would describe RLS as more of an annoying buzzing feeling that builds in intensity until you move your leg, voluntarily or involuntarily, and the movement gives immediate but very brief relief. The cycle then repeats itself. My cycles come in about 30 second “waves” meaning I have to jerk my leg about every 30 seconds.
Are you on a statin drug to lower cholesterol? They have a long history of causing leg pain in some people. I hope you find your answer soon.
Thats very helpful thank you. Not on any medication at all. The 30 seconds on/off thing is familiar but I definitely wouldn’t say it provides any relief even slightly. At least I know I can rule out RLS and the hunt goes on, thanks so much for your response.
I second JPhickory. So you know it is not a one-off opinion.
Your symptoms sound quite bothersome, I hope you soon find the cause. Venous insufficiency perhaps? I don't know, just something that came to mind but I am not knowledgeable about it.
I'm sorry you are suffering in this way. I have aching with RLS. I've not heard of numbness being g a symptom. Does the wormy feeling disappear when you stand or walk around ? And are you deliberately bouncing your legs to relieve the wormy feelings? Of the answer is yes to both of these questions I think it could be RLS.
Hi, thanks for response. I cant still feel the wriggling when I stand/move around, last night was maybe the worst, to the point it woke me up on a number of occasions and was still present in the morning. The bouncing isn’t deliberate it’s more of an unconscious fidget if that makes sense.
Numbness is actually the wrong way to describe it the physio explained numbness is when you can’t feel it to touch whereas I can still feel through my feet. It’s more like a feeling that all the blood has rushed out of them. That and the wormy feeling makes me think perhaps it’s to do with circulation.
Your symptoms are confusing. The wormy feeling relieved by walking suggests RLS. But the involuntary bouncing sounds more like Periodic Limb Movement Disorder. The two can go hand in hand for some people. I thrash/ bounce my legs to relieve symptoms but it is deliberate.
It could be something circulatory too.Something like Raynauds.
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