Just musing about as yet unknown cause of RLS and the effect of treatments

Hi everyone, just been musing since yesterday when I realise that most likely we still don't really know what the cause of RLS and what the effect of treatments are in the long run - do they make us worse in the end? This started once I was writing about my gut feeling that maybe Pregabalin in the end made me permanently worse - or was it just natural progression?

I've often thought that somehow the sensations come down the pain pathways even though most don't have pain - but it's so uncomfortable. Does anyone know if there have been any 'active' scan studies while symptoms are present or is that impossible as scan need folk to stay still?

I was thinking about how it is known that if folk take regular pain killers for headaches which they feel they need they run into the condition which was called when I was at work 'chronic daily headache' as a result of this. It takes at least 6 weeks of no treatment at all for this effect to wear off. All regular pain killers for most conditions seem to eventually stop working, opiates but others as well.

And then there was the recent TV programme suggesting that kids who are given eg Calpol often for minor conditions seem to develop some sort of change in the regulation of pain?

Does anyone know if any of the pain specialists are taking RLS on as their remit? I think they do for fibromyalgia.

I don't know but I just wonder if we are being made worse and dependent and changin our basic disease patterns by what we are currently being advised, much as folk are trying to help.

.... an open question

[Joolsg]

I often think that myself Alison, but don't have the nerve/strength to quit all meds and find out if things improve ( if at all??).

I did have to have an MRI scan for my MS while going through withdrawal from ropinirole in August 2016 and my legs were jerking constantly. The operator kept asking me to keep still ( ha ha ha).

I will ask my MS neurologist about those scans next time I see her in July and ask her to forward them to my RLS neurologist to see if they can pick up on anything. My head was relatively still ( they were scanning my brain at the time).

[Parminter]

Dr Buchfuhrer suggests that patients change meds quite regularly, and combining them, in order that they remain potent in smaller doses. He is worth searching out, a truly wonderful doctor.

We know that DAs actually make the disease condition worse, it is not just tolerance.

So far as I am aware, this is not the case with other meds, but tolerance is quite likely.

As for the odd feeling that is not the typical Hell-on-Earth, yes, I have become aware that my limbs, both arms and legs, are never truly relaxed. There is a feeling of slight tension as though one was on the edge of something. It feels like excess energy with nowhere to go. If I turned the touch-sense into a sound, it would be a very, very light buzz.

I have only become aware of this since I took a few doses of methadone. After the methadone, within half an hour the limbs are completely relaxed, it's absolutely bloody marvellous! And I suddenly realized that I had not felt this since godknowswhen.

[Hidden in reply to Parminter]

Tramadol can cause Augmentation as well as the DA's but its rare.

[Hidden in reply to Parminter]

Dr Buchfuhrer does seem pretty wonderful. I have emailed him with questions a couple of times and he has been very good to reply.

I do think my Pregabalin did make me worse in the end too

I think many of the treatments are 'bloody marvellous' at first. No non sufferer can imagine how wonderful it is just to feel normal, however briefly!

I do think the opiates also cause worsening in the end. This am I've been looking at the 'medication induced headache' I was referring to yesterday. Codeine based meds are particularly bad at causing that.... not the same condition I know but another example of what the brain will do.

Our brains seem to hate being thwarted and not allowed to be how they choose and seem to fight back constantly to revert to their own status quo - and then it doesn't seem to be able to go back away from it's upregulated state if you understand what I mean

[Eryl]

I know what causes my rls, and keeping to a strict diet keeps rls at bay for me.

Many in the medical profession believe that there is a link between rls, fibromyalgia, migraine, ibs and other conditions involving nerves. My theory is that they're caused by inflammation of the nerve endings caused by something in the blood, or it is blocking an enzyme required for normal functioning of the nerve cells. Mine is caused by high blood sugar, so I stick to a low carb diet.

I read this morning that researchers think that parkinsons is caused by defective genes causing faulty metabolism in nerve cells. It might be interesting to see if a treatment they found (Nicotinamide riboside, a specific form of vitamin B3) might have an effect on other nerve conditions.

[Hidden in reply to Eryl]

That certainly will be interesting. That's what it feels like to me - faulty function of nerve cells and as if an enzyme required for normal function is being blocked. I do think the drugs are mainly sticky plasters which lead to future problems. i keep saying I'm going to stop my blood sugar rising. it doesn't seem to be as simple as just cutting out sugar though. there was a programme on tv this week about carbs and how much sugar various things eg bread, potatoes, rice converted into - large amounts. and our bodies need glucose to function so it's got to come from somewhere. i also find it even harder to cut out when very tired when you crave for a boost which is most days.

how do you manage your diet?

[Eryl in reply to Hidden]

A big name in the pharma industry has admitted that providing cures is bad for business, so they don't bother researching the causes of diseases, just the relief of the symptoms. Sugars are important, but even on a low carb diet I can cycle around forty miles without eating, just drinking water with a little electrolyte replacement, or possibly a cup of coffee. I suspect that the boost most people get from eating sweet foods is purely psychological, because sugar causes a large release of dopamine like drugs. Unless you are working at the rate of a professional cyclist or endurance athlete, your metabolism can easily keep up with the required energy conversion from normal foods.

[Hidden in reply to Eryl]

Sorry for butting in and being off topic. Wow, 40 miles?! Where do you cycle? Do you race too? My parents live in Bend, Oregon, where cycling is HUGE! Sometimes I’m lucky to be visiting during a race (lucky because I love watching them).

[Eryl in reply to Hidden]

Snowdonia, and I'm a bit too old to race, I'll be drawing my pension in a couple of months. We've got the Women's Tour of Britain passing within 25 miles this Sunday.

[Hidden in reply to Eryl]

Didn't know that about sugar and dopamine release...... and maybe that has something to do with why sugar makes RLS worse as these DA's are affecting the dopamine pathway as well??

Once you swap to a low carb diet I believe it's easier keeping to it. The initial swap to a different metabolic pathway is the hard bit, definitely for me. I get all cranky and shaky and sweaty and even tireder than usual. I need to make myself stick at it!

[Eryl in reply to Hidden]

wellnessretreatrecovery.com...

[Hidden in reply to Eryl]

Thank you. That is very interesting. I knew there was some sort of basic reward for eating high calorie foods which must go back to times when food was scarce but I didn't know dopamine was involved. i used to say at work that i found it hard enough to resist the chocolates we were gifted so it must be truly dreadful if it was heroin.

So I wonder where the dopamine story and RLS comes in. When I'm up wandering at night I always seem to be on the lookout for biscuits while telling myself at the same time that I'm likely hastening my next attack. When I was taking pregabalin that urge was even stronger - I wonder what this is all about?

[Parminter in reply to Eryl]

Some sort of inflammatory condition is certain - and worsened by drugs.

But in my case it is not sugar or white carbs, I have not eaten them for years.

Niacin I take in a haphazard sort of way, both for high cholesterol and anxiety, Perhaps I should be less haphazard and try it at bedtime.

[Eryl in reply to Parminter]

Niacin (nicotinic acid) is not quite the same. The research suggests that specifically Nicotinamide riboside is the one that has the effect.

[Hidden in reply to Eryl]

Yes!!! My RLS acts up when my sugar is elevated! I was hospitalized recently and on admission my BS was 450...my arms and legs were going day and night. I couldn’t sleep! I’m on insulin now and eating a healthy, low-carb diet along with Mirapex 1mg twice daily. I’m only bothered now if my BS goes over 200. What a relief!!

[Parminter]

I think of potential (and already realized) harms very often, as I am extremely cynical about the pharmaceutical industry in general, and its agenda on world stock markets.

However, if you inherited this thing, and they are finding a pattern of genes associated with it, then it is surely much the same as being unable to alter your eye colour or the size of your feet, at least for the time being. Stem cells might do it, who knows.

And in the meanwhile, as we search out chat-rooms and cures and hope and sleep we have our lives to live as best we may, and help Big Pharma with its profits.

As the late, great Anthony Bourdain said: "My body is like an old car - one more dent ain't gonna make a whole helluva lot of difference".

[Eryl in reply to Parminter]

Why should you put up with it if it's genetic? I've inherited bad eyesight but it doesn't stop me wearing glasses. You may have inherited the sensitivity to make you diposed to rls, but that shouldn't stop you avoiding the triggers.

[Parminter in reply to Eryl]

Eryl, where did you see me saying I was putting up with it? It was just a statement that this is very hard: for me, it has been a six-decade battle, and I have not surrendered. I'm not here for the chatter, I'm here for the knowledge.

[Legsbohn]

I went to GP’s for 20 years for my RLS and never got any good advise until my last one a year ago who had me try Tramadol 50 mg. It did help but not as much as I had hoped. He used it to 100mg and again it helped but not enough. I asked him for a higher dose and he wouldn’t do it. He recommended I go to a pain clinic and it was the best thing that happened for me. I now take 300mg of Tramadol and haven’t had an episode in over a year now. I don’t know how long this will work for me but so far it’s nice to go to bed and not feel the urge to walk.

[Hidden]

Primary RLS which alot of people have is genetic and we cant change that. I dont believe that diseases are not researched to find a cure, look how far they have come with some cancers. Its always down to funding.

[Hidden in reply to Hidden]

Yes, it's down to funding to a great extent and we need central funding somehow. But I am also cynical about big pharma as a short while before the DA's appeared for RLS there was a big publicity campaign from somewhere, in the UK, elsewhere too maybe, where they were encouraging the previously silent sufferers to come out of the woodwork. They don't want a cure I'm sure though for cancer the cure involves extensive treatment so that works for pharma too.

I don't believe there will be a cure as such for RLS, apart from possibly stem cells as one of you has suggested, but I don't think they've got the right answer yet and something which stops the symptoms but doesn't make it worse would be so good, same as for eg heart disease up to a point.

The treatments we have just now only last for a wee while and then folk need to stop them which isn't good for pharma profits - though I suppose there are always the younger folk coming up behind.

I just want to know exactly what these genes are doing so it can all be refined better. At the moment it's more like blockbuster therapy and we may not have the correct place in the faulty pathway to try to block.

Interesting about the success at the pain clinic. They are pretty good these guys and it would be good to think they'll take on RLS as well rather than neurologists - but we need the specialists and the research too.

Thanks to you all for your input and replies.

[Hidden in reply to Hidden]

My husband is convinced that they have found a cure for such horrible diseases like cancer, but won’t say what it is because they “need” the funding from the people who suffer. He says if they give everyone the cure, then there goes the income coming in for medicines, treatments, etc.

[Graham3196]

I think there is a lot of truth in the idea that pharma want to find treatments and not cures.

This would have its effect at the earliest stage of deciding what research to spend money on. A drug that requires $100M to develop and cures a rare disease in one dose is going to be a lot harder to promote to the board of management than drug for a common disease that costs $500 million to develop but requires daily medication for the rest of your life.

Cheers

Graham