Anyone else with Restless Leg Syndrome (RLS)?

Post Reply New Topic

Or Wittmaack–Ekbom syndrome, I hate the RLS term as it doesn't come close to describing the disorder.

I've got primary Wittmaack–Ekbom syndrome with no underlying cause. I get symptoms throughout the day when at rest including restless legs/arms, painful spasms in legs, cramping feeling in calves, and very hot feet - obviously it's worse at night so prevents both me and my boyfriend from getting proper sleed. I often contemplate hacking the bottom of my legs off -_-

Anyone have any tips on helping with the symptoms?
Other than the soap method or exercise.

I was taking Ropinirole but this made it worse so I stopped, but my GP is useless and insists there's no other medications I can try - I know this isn't true, I'd switch GP's but I'm worried it may complicate or slow down my referral for my AS diagnosis, which is more important.

haven't had it in a while but yes, I do hate it.

I don't have a syndrome, but I do have restless legs.

Have you tried taking magnesium, e.g. magnesium citrate? I know someone with RLS who did and it helped a lot. Read up on magnesium deficiency.

Yeah, I've tried but it doesn't really help when it gets bad. I started taking magnesium and calcium when I started getting symptoms...well, when I started waking up in the middle of the night with agonising cramps, some people argue this isn't a RLS symptom but I argue otherwise, if nothing else cramps may be a result of spasms. I've also heard of taking paracetamol - this works for my mother, but not a huge benefit either unfortunately

Low sodium and potassium is another cause of cramps. I have had cramps in the past caused by this when I've been doing a lot of exercise and hence a lot of sweating which depletes the body's salt stores. If you do a lot of exercise you need to maintain salt levels. A small increase in salt consumption is enough to fix things and/or you can drink some of the isotonic sports drinks which contain sodium, potassium, calcium and magnesium.

There might be an opening. I don't know, I'm not from the UK and I don't know your particular GP.

But can you see someone for a second opinion on a specific matter without essentially firing your 'main' GP?

For example, if the coach of the Cleveland Browns sits Colt McCoy for the 3rd quarter, doesn't mean he's permanently benching him, just means he's going with someone else for the 3rd quarter (and sorry for the American sports analogy, please feel free to translate to another sport if you like )

And good luck, I think I have it on a much more minor basis sometimes brought on by sleep deprivation. Sounds like you have it on much more major basis, and sounds like no fun at all.

Not really. In the UK you register with a GP and your records are kept at that surgery. You can see another GP if you're out of town as a visitor but that's it. Only other option is to change GPs which is no guarantee that the new one will be any better and might result in you being seen as a "problem" patient.

I found giving up gluten helped a lot.

Gosh, that's kind of a lousy system and I have high hopes for British 'socialised' medicine.

Option B: Can you arrange to be 'out of town' like visiting a relative?

I've recently read about this association, and it surprised me. It makes sense though, as celiac has caused me a lot of deficiencies. I'm starting to feel like everything that's physically wrong with me is due to gluten intolerance.

I do have RLS as well as cramping. My doctor has prescribed calcium supplements (along with all the other junk I'm deficient in), and for a while I took magnesium on my own. None of it made any difference.

I'd like to try a gluten-free diet, although being unemployed I can't afford any kind of dietary changes, which is problematic on many levels, obviously 'change your diet' is a regular piece of advice given in reply to numerous problems. Products containing gluten make up about 70% of my diet right now...so if that's problematic for me then I'm doomed, lol

A GP somewhere you're visiting isn't going to start major investigations for you. The system is for when you're taken ill away from home. The only way is to change your GP. It's at least possible these days but easier said than done, IMHO. I've stuck with the useless GPs where I am because I felt that eventually I'd be able to show how incompetent they are and how badly they've treated me. I'm nearly there now. With a bit of luck, everyone's going to get new GPs at my current practice when the current ones are shown the door.

check the ingredients of the supplements as lots have 'nasty' things in them such as lactose and maltodextrin and aspatarme and so could be giving 'extra' symptoms rather than helping. Try including foods which contain lots of vitamins/minerals in your diet such as broccoli, sardines and eggs.

Im unemployed too but I afford it. I dont buy 'gluten free' stuff I just eat things with out it naturally such as potatoes, rice, corn and lots of fruit and veg, fish, turkey and chicken. Is there a lidl near you? They have very cheap veg and fruit.
sample menu - breakfast omlete and fruit, lunch turkey and sweetcorn salad with fruit for pudding, dinner salmon, potatoes and broccoli with fruit for pudding.

I've only had it a few times, and I blamed it on medications and supplements, which I discontinued to get rid of the problem. I would be miserable if I had to cope with that all the time! I don't know much about it, but I can empathize with anyone who has felt it, and I wish that you find the best and quickest way to solve it!

Charles