New to this forum so thought I'd share experiences. I'm a 70-yr-old male; suffered RLS for seven years. GP says I got it because of a campylobacter infection. Aside from temporary food-poisoning, this can also cause permanent neurological damage like RLS. My symptoms are the obvious uncontrollable violent leg movement accompanied by what I can only describe as dangerous withdrawal-like issues. If RLS hits in the evening then I experience all the symptoms you get if you were, say, trying to give up smoking: violent uncontrolled leg spasm, uncontrollable itching to feet and legs and the red-mist, violent and hard-to-control rage. Have harmed myself trying to cope. Whole thing so desperate and depressing that have considered suicide just to make it stop.
I find I must constantly seek new ways to combat RLS because the condition changes. Was taking ropinirole 4mg one hour before bedtime. It seemed to lose effectiveness so increased this to 5mg. This also seems to be failing so sometimes take it two hours pre-sleep. Walking relieves symptoms but is difficult because I suffer reduced and painful mobility problems (take regular Tramadol for this; no effect on RLS, sadly). Hot bath helps but bloody inconvenient at midnight or in the early hours! Curiously, listening intensely to the right piece of music can also moderate symptoms - really don't get this but it does work. Latter two tactics work only as immediate relief. They are not preventative. Have started taking 20mg "gentle" iron pills. A question re these: should I take one a day or is it better to do two every other day?
Bad "withdrawal" attacks are unpredictable and seem to hit at random. So,always trying to work out what behaviour causes an attack. Have reduced coffee intake; don't eat after 8.30pm; try to get the appropriate amount of exercise during the day (too much AND too little can both cause problems); avoid driving for wrong period of time and time of day; do not take NSAID pain killers, and so on...
Find that CBD oil helps but only a tiny bit. Hear from others that proper cannabis can be effective. Would try it if I could get hold of it.
As you all know, RLS is absolute hell. It is a life-changing, life-threatening illness that prevents us doing simple things like going out in the evening or taking a journey that ends after 9pm, or even just staying up late to watch telly. One of the most annoying things is the name: "restless leg" makes it sound so trivial. It is dismissed as a minor irritant or even an imagined, attention-seeking condition, by non-sufferers.
Hardest problem is the variability of the symptoms and treatments. You never know what it is going to throw at you next. Then you have to wade through thousands of different treatments/regimes to knock it back.
Regret that this post goes on so long, unavoidable really. Will continue to monitor these forums to contribute where I can and, hopefully, learn new stuff about this awful condition.
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Madlegs, thank you for your surprising but helpful comment. Have always thought it was RLS because that's what my GP said it was and that's what he treated. Might try to speak with (new) GP about the whole thing.
I agree with Madlegs, your symptoms are confusing and although they are very real do not sound like RLS, especially the rage.
It may be a good idea to see a neurologist.
In addition 5mg of ropinirole is too much and if any part of your symptoms are due to RLS, this dose of ropinirole may be making them worse.
Manerva - thanks for your thoughts. As I've said, I always thought it was RLS because that's what GP diagnosed and treated. Need to think on it a lot, lot more (and decrease ropinirole). Seeing neurologist impossible in our Covid world; my wife is in clinically extremely vulnerable category so neither of us can even think about going into any medical facility.
Of course you would expect that if a GP gave you that diagnosis then they'd be right.
However, RLS isn't entirely easy to diagnose and GPs can make mistakes. E.g. overprescribing ropinirole.
RLS should be diagnosed by comparing symptoms to the 5 diagnostic criteria. If they match ALL 5 criteria then you have RLS.
From your description of your experience it's not straightforward to weigh up, on balance if you have RLS or not.
The things that suggest you may have RLS are twofold
1) You mention that ropinirole has failed which implies that at one time it worked. If it had never worked, then it's unlikely you have RLS.
2). You mention involuntary movements which some people, (not all) with RLS experience. I do.
However, against you having RLS
1) Involuntary movements are not mentioned at all in the diagnostic criteria and they could possibly be due to something else.
2) Withdrawal attacks, red mist and hard to control rage are not symptoms of RLS as such. Although could be a result of augmentation.
3). You don't mention anything else which matches the criteria, but it may be just simply you don't know what the criteria say.
Even if you do have RLS, I would be reluctant to say that ALL your symptoms are due to RLS, some may be, others not.
It would be worth consulting a neurologist, Not impossible. I have had several specialist consultations since May, all of them online. I have another next Monday. I wouldn't like to think that you have some additional neurological condition to RLS that is simply not being treated.
You will probably benefit greatly from reducing ropinirole, but please find out about how to do this safely before trying. It can have serious consequences.
Interesting that you say 4mg lost effectiveness and you now take 5mg.
As Manerva advises, it sounds like augmentation. The red rage irritability and harming yourself to relieve the RLS is classic augmentation.
Read the pinned post and watch the video on Augmentation on the main RLS UK website.
The only way to deal with augmentation is to slowly reduce the Ropinirole by 0.25mg every 10-14 days. The withdrawal can be brutal and you’ll need assistance from your GP. Tramadol may help a Little with withdrawal symptoms but speak to your GP about getting oxycontin as it is stronger than tramadol.
Once off Ropinirole, pregabalin is a better option and can be started about 4 weeks before your last dose of Ropinirole.
Thank you, everything you have written is very familiar to me and the reply from Madlegs1 is interesting. I think your feelings of rage may just be utter frustration when in such pain rather than a separate symptom. I hope maybe someone will look into your circumstances more closely...please let us know.
A long year sufferer for RLS here, being on pramipexol for 6 years, experiencing serious augmentation. I have now been given gabapentin by my neurologists, a medicin that eases over-stimulated nerves in ones brain. I have slept last night like a baby. Have no idea how it will work out in the long run; apparently it's a quite new medicin used for RLS, but it's worth checking it out. Good luck!
Don't apologise about the length of your letter, you want to see the ones I've sent.
I echo what other people have said, particularly the advice about trying to identify alternative factors that might be a trigger factor.
I must admit that your GP sounds as though s(he) has "stumbled" across the term RLS and pounced on it!
It would be a good idea to get a 2nd opinion re. diagnosis and treatment, after all, you don't want to keep "barking up the wrong tree".
Don't be put off these GP dismiss any suggestions you may have said. We are all "experts" about our own type of RLS! My husband is a blessing as I say "He's the one who suffers from RLS as he's on the receiving of my "routines". The next morning he has a full report saying when I took place, how long and the behaviour. Also any injuries he's received! I make a not of these so I can provide concrete details to the neurologist/GP.
Get a 2nd opinion and referral to a neurologist. They should get several tests done to help illustrate what might be the diagnosis and prescribe appropriate medication, a a referral to a more specialist if necessary.
You may experience a situation that might seem to be a catastrophe, but it may be a blessing.
I was referred to a neurologist for RLS and went for an assessment outpatient appointment. While with the neurologist, I felt an attack coming on. "Oh No" I thought. My legs started to go all over the place despite me trying to calm them. The neurologist told me not to as she wanted to see how they presented in me. She said that far from being a problem, it was a valuable opportunity.
So, rare as it may seem, if it does happen, let your pins show their version of the Can-Can!!
Also, if any doctors mention anything that you don't understand, insist that they explain it in PLAIN ENGLISH so you know what they're talk about.
GET TO THAT NEUROLOGIST, and take any suggestions you might have that you think might be contributory factor(s).
After all they haven't seen the Tharg type of RLS presenting itself and if anyone is present when RLS starts, if you feel comfortable asking them, get any information that they can give about what happened.
Wow! Thanks to everyone for such a wonderfully helpful range of replies. Too much to take in immediately. Need to go away and work it all out. But, Manerva - I fully understand the procedures for reducing Ropinirole; slowly, a bit at a time. (Have tried before but never got very far before the condition hit back violently.)
Again, heartfelt thanks to everyone. Great to be able to talk to people who really understand. Will get back to you all...
Had a fiancé with RLS. Did a lot of research to help him. Try a low carb diet, especially no carbs after noon, and include a serving of liver at least every other day. Keep doing this, as it may take months to dry the effects of carbs out of your system. If you don't eat carbs already, you'll see results faster from taking these steps to get rid of the problem.
Benfotiamine can help, vitamin D and cod liver or fish oil, too. Try slow-release iron supplements, one in morning, one in evening. Add one midday ater you start to tolerate the other two to improve absorption, or just eat a lot of spinach sautéed in cast iron with lemon to bind the oxalate, lol.
He was able to get off all meds and go into complete remission, even though he used to spend most of each night tossing, kicking, walking it off, etc. and it was hard for him to sit through a ballgame or concert while he had RLS. Good luck!
Again, thank you all very much for your helpful replies. Have had a little time to consider the way forward and it will be in the hands of my GP. Will get a (phone) appt with him for a discussion of the problem and request a referral to neurologist. In the meantime, have started reducing ropinirole (now down to 4mg) and taking H&B's "gentle" iron tablets. The latter may prove a problem as they seem to be intensifying constipation which is already an issue from the Tramadol. Hopefully, will be able to manage to manage this.
When I have anything to report I will get back in touch here. Your thoughts and suggestions really have been very helpful in helping me decide a way forward. Much appreciated.
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