My interview with Peter Allton on UK Health Radio is now available to download or listen to. I hope I covered most of the relevant points about RLS.
ukhealthradio.com/blog/prog...
I did another interview with GavinJ but that isn't yet available.
RLS AWARENESS DAY - RADIO INTERVIEW - Restless Legs Syn...
RLS AWARENESS DAY - RADIO INTERVIEW
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Joolsg
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Hi Jools this link works ukhealthradio.com/player/?e...
Joolsg in reply to
Thanks Elisse. 😊 Much better link!
The one you have posted doesnt take you to the interview . Someone on the fb group i am co admin someone how found the link i have now posted which takes you to your interview which i must say is brilliant!! You covered i think everything, Well done you.!!
Joolsg in reply to
I kept forgetting what I had said already! And I tried not to repeat myself but it's hard when you are being recorded. Think I made the point about iron! Even though an iron infusion made no difference to me.
in reply to Joolsg
I certainly couldnt have done it, i would be a jibbering mess lol
Have just listened to your broadcast Joolsg and I think it was brilliant. Thank you so much, not just for the broadcast but for the extensive research that you have done. Many, many thanks X
KaarinaAdministrator
Absolutely brilliant, Joolsg. Thank you so much. What a shining star you are. So much information was covered. You were amazing. Loved your choice of music too. 
Would you like to talk to Newstalk Radio here in Ireland?💚
I'll talk to anyone if it helps raise awareness or if it makes just one doctor read up on the subject....
👍👍💚💚😎
Hi JoolsgMust say a great interview. Can you spell out the drug which worked for you please
I’ve just listened to your interview during my intermittent “awake” period at 1.15 am. I really am impressed you got message across really well.I’ve been on Pregabalin for about 3 months (after 25 years on Pramipexole) and my sleep pattern is exactly how you said. Pregabalin helps symptoms but not well enough.
I’d really like to consult a Neurologist and try to get the same medication you are on. Are you able to give me their name I’d be prepared to go private as my GP will undoubtedly not be willing to listen. Id be very grateful.
My NHS neurologist is Prof. Chaudhuri at King's College. But he wouldn't prescribe Buprenorphine. He said he would have 'no objections to Buprenorphine' but my GP had to agree to monitor etc. I was lucky that my young GP was willing to do so.I know Prof Walker has recently prescribed Buprenorphine so he is another option to see privately.
Thank you so much. Do you think paracetamol is ok to take for pain relief?
Paracetamol is the weakest painkiller so probably won't help someone suffering extreme RLS pain and it can cause liver problems if taken too often.Better options for RLS pain are pregabalin/gabapentin or a low dose opioid like codeine or Oxycontin.
What meds are you currently taking?
Pregabalin. Ramipril. Hrt patches.
The ramipril shouldn't affect the RLS and nor should the HRT.I would definitely change the timing of the pregabalin and ask for codeine for the times when the pain affects you.
Also, it can take up to 6 months for withdrawal symptoms to settle after getting off a dopamine agonist like Pramipexole or Ropinirole.
Thank you Jools for all your awareness- raising work.You are a warrior for the cause.Gratitude.x
Hello, I just listened to the interview and want to thank you for explaining so clearly what is severe RLS, augmentation and daws. Hope many people can learn more about RLS, and get relief with your precious advice! ☺️
Jools, will rls-uk put a link and some text on their website? And maybe rls.org will do the same? And earls.eu?
For the Dutch patient organisation, maybe I can make a transcription.
Thanks for doing this. It can't be repeated enough that you are a star! 🌟
Thanks Julie, your interview & its content were brilliant. Thank you so much for all your efforts on behalf of us all.
Bravo! You did a magnificent job. Now we need to sit down with a consortium of doctors and scientists who understand not only RLS from a clinical standpoint, but are also biochemists. I love you, but I disagree with just about everything you said, as you probably have gathered from my posts here.
I, and seemingly I alone, truly believe that RLS has almost nothing to do with our bodily stores of iron and I'm not convinced by the fact that some people get some relief from RLS about 6 to 9 weeks after an infusion. No one has explained why it takes so long or even why raising our bodily iron stores helps in the first place. As you know, we with RLS have a lousy dopamine transport system and particularly our D3 receptors in the substantia nigra. They're lousy 24/7/365, yet for the most part, RLS rears its ugly head only in the evening. Why? Why? Please someone tell me why! Some people will say it's because dopamine levels in the human brain (meaning in its chemical form before it is taken up by the dopamine receptors and hurled down our spine as a neurotransmitter) drops at night, but I'm not buying that as the cause. Autopsies of the RLS brain has shown we have way more chemical dopamine in our brains than the average, non-RLS cadaver. So I think we can handle that night-time drop in dopamine. What also drops at night, precipitously so, is that free-floating (non-stored) iron in our blood. I believe that is the drop that our anemic, RLS brains just can't handle.
Allow me to repeat the same thing for the 100th time, but I believe that we with RLS are ALWAYS standing on the edge of a cliff - 24/7/365, but we don't even realize it, or think about it, until we fall off. And btw, everyone is on that cliff it's just that they're miles away from the edge. A traumatic spinal cord injury can even push someone with very robust D3 receptors over the RLS edge. Getting back to us - we're on the very edge, but all day long we're happy and it seems our lousy dopamine transport system is chugging along, sucking up some unbound iron it finds in the bloodstream. But then as the sun is setting, Mother Nature decides that the heavy metal, we call iron, should be sequestered out of human's blood stream, lest the vampires or some other enemy gets us. The non-RLS world is not bothered in the least by this lowering of serum iron. WE ARE - because we have little to no brain iron stores like the non-RLS world does, so off the RLS cliff and into the abyss we go.
And there are things that will push us off the cliff by day as you know better than most doctors, Jools. There are some triggers that I think a lot of people don't realize. It's important that we with RLS have an unimpinged central and peripheral nervous system from from head to toe. Anything that impinges on our spinal cord or any part of our peripheral nervous system, right down to our ankles, can make our symptoms of RLS worse. There have been several people on here who injured their ankles and then suffer from terrible RLS in their feet. I look at it this way, the non-RLS world has a strong stream of dopamine (in neurotransmitter form) bouncing down their central nervous system and all through their peripheral nervous system. That stream can readily push past a herniated disc or busted ankle. But ohhh we with RLS have only a trickle of dopamine running thru our body and there's no way most of us can handle that type of injury.
Speaking of over the cliff and the non-RLS world, I've read that taken in large enough doses, hallucinogenics, like LSD, will push even non-RLS people over the edge. But getting back to us again, I refuse to acknowledge iron infusions or ferritin levels as being viable solutions to RLS until such time as someone can explain to me exactly how and why it works - raising ferritin that is. PLUS, as far as I know they use a form of iron with infusions that is NOT broken down into amino acid form. If they did it might kill you, I just don't know. Anyways, my understanding is that iron will cross the blood brain barrier once it's been broken down into amino acids, which is usually accomplished by our digestive tract - correct? Once in the bloodstream, there's no more breaking down, right? It just seems like a silly way to treat an anemic brain. At least use ferrous bisglycinate in the infusion which is already broken down into amino acids. The doctors that specialize in infusions so don't care about RLS or crossing the blood brain barrier. Their concern is with anemia mostly and just about any form of iron will raise your bodily stores of iron once infused.
The only way I can see infusions helping us is that there is so much iron everywhere that our bodies start depositing some in our brains. Maybe even alot. Part of the problem is that with RLS we also have mitochondria that tends to hog alot of the iron that makes it past the blood brain barrier before our receptors can have at it. Maybe after the infusion and after our brain mitochondria are stuffed to the gills then our receptors get some of that iron and grow a little bigger and better (albeit temporarily) and we get some measure of relief from the RLS.
The only long term solutions to RLS that make sense to me is to find ways to build up our dopamine transport system. Sadly, things that give us pleasure tend to down-regulate our receptors (everyone's receptors for that matter, but they have plenty to spare) while things that annoy us like severe calorie restriction and anaerobic exercise will up-regulate the receptors. Once again, it will up-regulate everyone's receptors, but we REALLY need that up-regulation. RLS is such a day to day, moment to moment disease and all I know is we have to figure out ways to pull ourselves away from the edge.
in reply to
And one more thing (if you can believe it after the above diatribe) I dare anyone to name one other disease that only presents at night (or mostly at night as RLS does). There just aren't any - maybe migraines. That's such a crucial, crucial, crucial factor that for doctors and researchers to ever overlook it is outrageous. Every research paper (I think) should begin with that fact. I think it's bordering on malpractice to force someone's iron stores up as high as possible (500, 600, omg 700) and not even really understand why, if at all, doing so will help RLS.
HilsK in reply to
Eitheror Yes I get fully what you have written. It is part of all our frustration with the NHS. Drs who say they know about RLS including consultants wouldn;t even consider what you have written. It is malpractice. but they get away with it using their new favourite excuse for everything "Its because of Covid". And yes if you read some of the American research there are different forms of RLS. Patients suffering from severe RLS have the symptoms all day ... not just at night. Sadly I have been one of those people all my life. But it will still be linked to Dopamine. Also something you don't mention what about the changes in hormones in relation to changes in daylight
Melatonin secretion is regulated by a rhythm-generating system located in the suprachiasmatic nucleus of the hypothalamus, which is in turn regulated by light. Melatonin is regulated not only by that circadian rhythm but acts as a darkness signal. Melatonin is actually secreted by the nearby Pineal Gland. It seems to me that the form of RLS that only comes on at night must in some way be related to this system as it is the only part of the endocrine system in the human body that responds to changes in light. Another enigma?!
in reply to HilsK
Yes, and melatonin taken as an oral supplement, aggravates RLS. That would be just crazy that something as important as melatonin and which our body produces may actually be contributing to RLS. Yet I doubt that. I refuse to believe that Mother Nature in her infinite wisdom would create such chaos. So for example the progesterone and estrogen that women's bodies produce I truly believe do not contribute to RLS whereas hormone replacement therapy I believe can. I also believe that the slight increase in progesterone during pregnancy can lead to RLS symptoms in women that are susceptible to RLS - meaning they have pre-existing smaller and fewer than "normal" dopamine receptors. These women can go thru their entire life and never have so much as a twinge of RLS until they get pregnant. I do not believe in primary and secondary RLS. I just believe there is a spectrum based on the size and number of your receptors at birth. The worse the receptors at birth the more likely a person is to have early-onset RLS and I guess day and night RLS.
So let's talk about you. Do you have allergies - since an early age or some other somewhat benign, but inflammatory condition since an early age? Sadly, I'm a one trick pony. I tell everyone to just take some ferrous bisglycinate tablets (provided they don't have an iron overload disease) tablets at night on an empty stomach (about 50mg) and if you want you can even take some vitamin c with it. If your RLS doesn't melt away in an hour take another tablet. If it doesn't work that very first night then go with the recommendation on this website which is to take the ferrous bisglycinate every other day and try like mad to get your ferritin levels up. The important thing is to get you a good night sleep via iron or some other substance and then keep you busy and distracted during the day :). If only it was that simple, right?
Butterflysun1 in reply to
I love this response too, and all the others raising queries and trying to think it through as that’s what we need, someone or many ones clever and able enough to think it through & try to work it out. Because there is no doubt no one has got there yet.The Drs, if they are knowledgable at all which many aren’t, just go on the current guidelines. But the researchers, with the right funding & open minds are the ones who will have to work this out, and listening to all the theories & observations is part of this process.
I have wondered why sometimes ferrous bisglycinate at night helps a bit - presuming it hasn’t yet been nabbed & stored by ferritin & is free to be used where it’s needed.
Mine too is getting more & more into day time as well.
I have widespread damages nerves too.
It’s all so bizarre.
I thank anyone who is willing & able to think all this through.
And why does stress make it worse which it seems to? It’s not something simplistic like sressed folk just feeling things more, there must be some biochemical pathway being affected which is common to both stress & RLS.And what is the odd thing about improvement during some but not all fevers that I and many others have observed? What are the clues associated with this phenomenon?
in reply to Butterflysun1
Per article, a fever will increase dopamine release. link.springer.com/article/1... I personally believe that the root, root cause of RLS, and many diseases, is a rowdy gut microbiome. A fever will get those babies in line, albeit temporarily. I've given up trying to figure out what strains we with RLS might be missing or have too much of. The gut microbiome seems as vast as the universe to me and we need to get help to people yesterday. However, if someone wants to experiment with natural antibiotics or different probiotic strains I say go for it. I've given up on that avenue...for now.
People have gotten relief from RLS after taking certain antibiotics - once again fleeting relief. Try a clear liquid diet (vegetable broth, gelatin) or a green juice fast or severe calorie restriction for a few days - I bet your RLS will greatly improve. It's not sustainable, however. Severe calorie restriction, whether you're thin or fat, has been shown via CT Scan to increase the density and number of D3 receptors. The experiment was done on non-RLS subjects. Obese people tend to have smaller and fewer dopamine receptors. I think any pleasurable activity done to excess, whether eating, drugs, sex, porn, will down-regulate a person's receptors. It doesn't necessarily lead to RLS for these people, but it does require ever greater amounts of drugs or porn to get the same dopamine rush. The thing is, their baseline is normal, so once they stop the excess dopamine rushes their receptors go back to normal, or if they want to speed the process up they can do the severe calorie restriction among other things. Our baseline isn't normal and I don't know how much "up-regulation" we can achieve by fasting. One or two people have come on here and reported complete relief of RLS (and much needed weight loss) with intermittent fasting after a month or two. Maybe we really don't need a sledge hammer (iron infusions, DAs) to treat our RLS, maybe small moves (iron at night, intermittent fasting, anaerobic exercise and there's something called the Uridine stack) can do the trick. After all, most of us are fine by day, so like you said, we might need to do a whole paradigm shift in our approach to treating RLS.
What led to your widespread nerve damage - which I for one have no doubt is making your most likely genetic RLS worse than it has to be?
in reply to
I have not found stress to make my RLS worse, btw. Possibly just the opposite.
Butterflysun1 in reply to
Don’t think I have either. Just that that’s said to be the case & I had no basis on which to refute it - as opposed to the coffee story about which I am one of those on this forum who find it helps
Butterflysun1 in reply to
This is all very interesting. Intermittent fasting would do me the world of good so I will try it if I have the will power.You are right I do have familial RLS but mine is miles worse. My nerve damage is an inflammatory peripheral neuropathy, like chronic guillain barree ( you are more likely to have heard of that ) which affects the myelin, due to an abnormal but so far benign paraprotein ( like a benign myeloma ) in the blood.
Thanks for your interest, theories and info
in reply to Butterflysun1
Ok, I gotta go, but here is an article I found which may be totally unrelated to your condition yet still fascinating. Good night! oatext.com/Long-term-follow...
Butterflysun1 in reply to
Yes, that’s what I have, MGUS IgGk. Thank you. It’s am here! Sleep well!
in reply to Butterflysun1
Here we are discussing RLS, MGUS, life, the universe, and the CEO of it all, the gut microbiome. I guess the turmeric and iron don’t bring you much joy these days?
Butterflysun1 in reply to
now we know who we are then!
Still suffering! I am about to spend a small fortune ( actually not, I think it’s pretty reasonable for what I hope they offer, it’s the travel & 3 nights in a London hotel that adds up ) going to see Prof Walker about my RLS & a prof expert on my neuropathy the next day hoping for a miracle cure during November.
At the moment I’m taking 60mg of codeine once a night & as much iron as possible orally trying to see what happens.
Wishing you all the very best with your appointments and a safe and uneventful journey each way. Do let us know how you go on.
thank you
in reply to Butterflysun1
pubmed.ncbi.nlm.nih.gov/352... Yep, we’ll all hold our collective breath till we hear from you.
Butterflysun1 in reply to
thank you. And that article is fascinating & with any luck hopeful. Phase 11 trials is a positive step. Even for those without neuropathy I’ve thought that the RLS sensation must be mediated via pain pathways. I got the familial version 1st then added to by the neuropathy version & one of my descriptions has been a pain that isn’t a pain so hopefully help for us all
Butterflysun1 in reply to
I think the gut microbiome will turn out to be very relevant though - it seems to be in a lot of subjects
in reply to
I changed my mind. One last experiment with my gut micro biome. In doing some research on MS, I came across this article on berberine and the gut bacteria and dopamine. Berberine is poorly absorbed into the bloodstream which means it’s ineffective for systemic bacterial and viral diseases, but great if you just want to modulate your gut bacteria because the berberine (which is an anti-bacterial) does tend to hang around the intestines. This article is actually a fairly easy read. nature.com/articles/s41392-...
in reply to Butterflysun1
What do you mean the ferrous bisglycinate helps a bit? Is it enough to allow you to fall asleep and keep you asleep? How much do you take? I recommend two capsules. I'll go one step further and tell you to open those capsules up and pour into a little water and stir. It won't dissolve all that well but it will completely dissolve and turn the water to black if you add quercetin. That's actually how I take my iron though I've never mentioned it on here that I can recall. That's because ferrous bisglycinate is so bioavailable that I don't know that my little witch's brew makes any difference whatsoever. It should be taken on an empty stomach however and about an hour before bed. The other possibility for you is to try the gold standard in iron which is heme-iron. Ferrous bisglycinate is non-heme iron. It is the best of the non-heme iron, but I believe not as good as heme. Proferrin is a good heme iron, but quite expensive. Last, but not least, are transdermal iron patches made by PatchMd. I like the 45mg patches. All of the patches release iron directly into the bloodstream (kind of) over an 8 hour period. The problem is it doesn't pack the same punch that the 25mg (all at once) capsules do so after an hour of wearing the patch you may have little to no relief from the RLS and have to keep putting off going to bed until enough iron has entered your bloodstream. I use the patches when my stomach is full. I find that after about two hours with the patch the RLS starts to fizzle-out. Mwahaha 😡
Butterflysun1 in reply to
My RLS is truly awful & I have frequent symptoms evening & night with multiple wake ups. I take ferrous bisglycinate sporadically, on an empty stomach if I can & have been thinking that on these nights the numbers of episodes & spells awake were probably a bit better - every bit helps. I had been considering that it might be because the iron was just absorbed & free & not got into ferritin & your theories seemed to fit with this.We need all your ideas & any other theories to solve this
in reply to Butterflysun1
Pardon my french, but don't screw around. Take two ferrous bisglycinate (50mg). If you wake up with RLS take another. You sound young to me and like you're suffering. If it doesn't provide near complete relief then you can try the expensive Proferrin or just follow the advice of everyone else on here and take it every other night and try like crazy to get your bodily iron stores up. The iron has NEVER failed me and I truly believe that for those it did fail it was because they didn't match force with force - meaning they needed to take more, especially people who are augmenting on the DAs. They need to get their doctor's permission and they need to take a boat load.
Butterflysun1 in reply to
Thanks - and I’m not remotely young! Am 70. And thanks for the reminder. Sometimes one just gets demoralised & I was wondering what chance I had to get my ferritin high anyway, which of course was the idea. And then I began to think ‘I wonder if free iron is part of the story’Can I ask you something else since you seem to be interested in the role of iron. Something else I have been pondering. I have a naturally high Haemoglobin, same as my RLS sufferer Mum had. I know there is a widish normal range of Hb, but it seems to me that with sufficient iron each individual has his/her own ideal & also probably a hierarchy in the body of which organ/site gets 1st choice. If like me Hb nabs it 1st ( my Hb is often 15 & I’m female ) then it might seem logical that other organs struggle to get enough.
Any ideas & as a group are we folk whose Hb nabs our iron?
Of course there will be folk who are actually iron deficient but for those who have ‘normal for non RLS folk’ could that be a feature / clue?
in reply to Butterflysun1
Yes, most iron is stored in red blood cells. My hemoglobin is high as well for a woman - over 14. I chalked that up to all the iron I take. Iron is tightly regulated in the body, so is vitamin D. I would use the word stingy even. We all need to try to figure out why there is so little iron reserves in certain parts. of our brains. I'm working on it. In the meantime, alot of us might be able to get relief by sneaking our brains some at night.
Butterflysun1 in reply to
Sometimes I still have a high Hb even though ferritin is actually low so my Hb seems to grab more than is necessary even though there’s not enough to go round for elsewhere. It’s as if the blood is primed to grab as much as it can even when not enough elsewhere. There must be some sort of regulation & I’ve wondered if that is a bit scewed for us somehow??
in reply to Butterflysun1
That's a very interesting postulate. I'll do a little googling later. Here's my all time favorite article regarding RLS and brain iron. A bit confusing, but not as much as some of these scientific papers. They don't blame the red blood cells for iron hogging in RLS, but they do blame the mitochondria in certain regions of the brain. Read the paragraph right below the images of the RLS brain (and normal brain) and you will understand the whole sad saga.
in reply to
oops, here it is ncbi.nlm.nih.gov/pmc/articl...
Joolsg in reply to
Going to print that and read it in depth. Looks fascinating. My myelin is completely eaten away because of my MS. I wonder if brain iron deficit is also linked to MS.Monday research.
in reply to Joolsg
Have you looked into stem cell therapy? Google dopamine and multiple sclerosis and 2021. It seems they’re speculating on whether modulating D2 receptors (I think antagonizing them) might be helpful. It sounds like dopamine signaling is off in MS and other neurodegenerative diseases. I would like to know why MS and all exotic auto immune diseases are disproportionately present among Blood Type B? I recall you are O, however.
Butterflysun1 in reply to
Thank you. That’s very interesting - complicated but interesting. So some mitochondria do seem to nick more than their ‘normal’ share of iron. But it also seemed to be saying that lymphocytes have an iron deficiency. It would be interesting to know if the red cells are nicking too much iron as I wondered, but then what is anyone going to be able to do about it?! I would so like a ‘cure’!I presume the relatively new info about opiates helping is just due to making the odd feelings lessen? I often describe it as as unpleasant as a pain except it’s not a pain but an alternative noxious sensation. It feels as if it must be travelling down pain pathways?
in reply to Butterflysun1
It’s gotta be close to your bedtime. Have you taken your two iron tablets yet, hmmm? 👏
Butterflysun1 in reply to
Taken 1 and will take another soon if need be following your advice ……. but what is bed time?! A distant memory! Have done some puzzles & hope that will do the trick for a wee while. Good to have another dose of iron up my sleeve though
in reply to Butterflysun1
Check in on yourself about an hour after the iron tab and see if your RLS is grinding to a halt.
Butterflysun1 in reply to
Just going to take another …..
in reply to Butterflysun1
Yes I would. I find iron to be a good sleep aid regardless of RLS.
Joolsg in reply to
I love this response. I am one of the 50% for whom raising iron did NOTHING. I had the infusion, serum ferritin rose to 785 and it made zero difference.I therefore agree with you that it doesn't help over half the people with RLS.
I firmly believe there are many different causes of RLS - they just haven't found out why because there's hardly any research compared to MS/Parkinson's etc.
In my case I believe it's all the scarring on the spinal column.
However, the reports show raising serum ferritin does help over half RLS sufferers. They probably have a different cause to their RLS.
I wonder why kidney disease causes RLS? My friend had severe RLS but after her kidney transplant it disappeared. Why?
Also, why does diet work for so many but doesn't help others?
It is the most infuriating disease and we need answers which we'll never get unless and until the medical profession takes it seriously and the Gov and NHS etc fund research.
Hi Jools, excellent! Thanks so much for highlighting this horrible illness.
Well done Jools. We need it broadcasted nationally. One thing I have been asked to do by a Dr is to make a series of videos ....... perhaps it should be you making those videos with your clear rhetoric .... Brilliant.
Hilsk- you should definitely do a video. 'Lived experience' gets the message across better than anything. To hear someone tell what they have been through is the most helpful thing. I volunteer as a 'guinea pig' for medical students and they all say that listening to patients stories stays in their memories in much more detail than learning about a disease in the classroom.
Thank you for bringing RLS into focus for the public and especially for doctors. Although I live in the US, I hope doctors here will also be more aware of RLS. Thank you for your courage to go on the radio, I could never do something like that. I am going to listen to the broadcast by the link given below.
Cathy
I felt the same way but anger spurred me on.The horrors we read on this site & others EVERY single day shows how lack of knowledge amongst doctors is now reaching dangerous levels. Dopamine Agonists are a ticking time bomb & RLS patients are suffering horribly through medical ignorance & negligence.
I'm in a really good place now so have more energy to 'rage against the machine'.
The stock responses we received from the RCGPs shows the utter disregard they have for this serious disease. I just feel for a those going through augmentation and their doctors blindly increase the dose, watch them suffer, and do nothing to help except say 'There's nothing more we can do for you".
It really is becoming criminally negligent.
Sigh....
Hi Joolsg, Just seen this post and I have just finished listening to the interview. I wanted to add my thanks to everyone else's. It's an excellent interview. I'm now passing on the link to others...
Quite simply I am in awe and truly grateful for your efforts Jools 😊
Thank you Joolsg for your dedication!
I thought you were much clearer than the host!
KaarinaAdministrator
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