Hello everyone - My name is Tom and i'm from the Department of Psychology at the University of York (Here's me: linkedin.com/in/thomas-hunt....
I've been interacting with the community lately and had an amazing response both in terms of data collection and in giving my a much deeper insight into the day-to-day experiences of individuals with Restless Legs Syndrome - thank you very much.
Just to let you know that this is the final push for data collection, we will only be collecting data for the next week or two tops. If you would like to get involved by taking part in the study from home and in your own time just fill in our screener form below and i'll be in touch shortly after
As well as this, if there is anything else you think researchers aren't getting about RLS that you would like to share please let me know!
Thanks so much Tom. I’ve just finished speaking with the Campaign’s manager at the UK MS Society to discuss how I can raise the profile of RLS and get money for campaigns/research.
I raised 4 issues with her:
1. Training for GPs and Neurologists on the basics of RLS ( it’s not taught at Med School).
2. The importance of iv iron infusions for RLS and the cost benefits to the NHS ( iron infusions dramatically improve RLS in 60% of sufferers). Most GPs and neurologists in the UK dismiss the link between low brain iron & RLS.
3. Overprescribing of dopamine agonists. Many GPs & neurologists are still unfamiliar with augmentation and increase the dose rather than advising a slow withdrawal.
4. The benefits of low dose opioids, particularly Buprenorphine/Temgesic to treat severe, refractory RLS.
These are areas that need more research and if you can help in any way that would be fantastic.
The MS Society will be sending me some campaign info and I honestly think the only way we will be ‘seen’ and treated properly and effectively by the medical profession is to increase education amongst doctors and get funding for much needed research into causes and new treatments.
(1) my overall impression of D.As after interacting with hundreds of individuals with RLS is pretty terrible.
(2) the iron infusion issue is really interesting. I thought the current state of the research was that it was pretty clear that low iron levels in the basal ganglia drove dopamine dysfunction and resultant symptoms, the bit that was undecided was whether supplementing iron helps. I've read at least one paper suggesting it didn't, because the iron had no way to reach the brain essentially - but this goes against the grain of a huge amount of anecdotal accounts so it is likely the jury is out on that one and the picture won't be clear for a few more years.
Yes I agree - I don't think a lot of people realise just how severely RLS can impact quality of life and that's harming the urgency in developing an appropriate treatment response. There's a worrying amount of discussion on places like Twitter for example, particularly in the US, treating RLS as a bit of a joke. Good luck in your campaign.
Hi Tom, all I can stress is the lack of knowledge and understanding by GP’s it is so stressful doing “battle” sometimes. When RLS is so bad in spite of tablets normal life is impossible, sitting at a work place desk is difficult for any length of time then sudden narcolepsy is embarrassing, cinema, theatre, aeroplane flights and bedtime, especially bedtime - having to walk about and being woken up every few minutes by twitching leaves you suicidal, it’s like torture. I’m hopeful your research might help find a solution.
Thanks for sharing - our research is just a pebble in the ocean. One way it could be useful, for example, without giving too much away - (1) lets say there is impaired memory and mood among RLS participants
(2) lets say this relates to sleep quality
(3) then lets say someone else who is interested in RLS treatment options might say "well treatment A and B probably aren't a good idea because even though they relieve daytime symptoms, they don't improve sleep quality, so the mood and fatigue are still going to be there, e.g., because they are on a heavy sedative."
(4) then some really clever people might say "well let's explore medication options which both (a) relieve daytime symptoms and (b) don't affect sleep depth/architecture.".
A lot of if's there but that's an optimistic account of how things like this sometimes play out.
Sometimes its so bad its like you dont want to live with the pain anymore.Drs dont listen they give dopamine agonist and call it a day and reAlity those pills are a nightmare drug from hell that do not need to be given for rls. Of course mirapex seems like omg its miracle but than become a nightmare. Than when you tell drs they think you are drug seeking.and tryn to come off of a dopamine agonist is terrible. My dr just put me on klonipin .5mg tryn to ween off of mirapex but it dont seem to touch me either. Like people with rls want a normal life and even when my ferriten level is normal i still have the pain of rls in mt upper extremity as well as my legs. But no drs listen
Sorry to hear that, and unfortunately it sounds like lots of other people's stories as well. Many people seem to get caught in a medication loop where they are bouncing off one then weaning off another etc
GP's have a lot to deal with and be knowledgeable about so it must be hard for them to deal with as well. Is there any mechanism to see a specialist with RLS for the most severely affected- has anyone ever been referred to an expert for RLS, its not something anyone has said to me?
Most definitely. In Australia at least, one can be referred to a sleep specialist or a neurologist (preferably one with knowledge of movement disorders).
That's good to know - I hope a similar framework exists here in the UK (I know for example that sleep specialists exist, i've worked with hospital teams who diagnose and treat respiratory diseases like sleep apnoea, but don't know exactly where someone would go with severe, treatment resistant RLS). Best, Tom
Hi Tom, I see a sleep specialist and I don't feel listened to or taken seriously even by him.
The subject of opioids is off-limits, DAs are still the first line of defence - I am being made to feel silly for not wanting to up my dosage, and I've been told 'this is as good as it gets' and 'there is nothing more I can do'. I'm 57 and all other things being equal have a lot more time with this chronic and progressive condition. It is frightening.
Being tired sounds so innocuous doesn't it, but the awfulness of the RLS sensations through the night aside (and that bit is bad enough) the amount that life is affected by poor sleep is huge and constant.
Hi Tom.I suffer with severe refractory RLS. After a lot of persuasion, and with my GP seeing the terrible state I was in, he referred me to a Sleep Clinic. I told him which one was supposed to be good at treating RLS. I then took charge of who I saw by looking them up on the hospital website. I saw that there were 2 RLS specialists and I asked to be referred to one of them. Since then, we've been struck down with the pandemic and treatment has been delayed. But I have been working with my consultant and he's been fairly receptive to me trying different meds.
Hi Tom,I've been an RLS sufferer for years,My gp,seems to know little or nothing about it,when I go to the surgery in desperation to discuss how I haven't had a full hour let alone a full night's sleep in years,I suggest maybe a change of medication so he consults his computer ,,while doing this he's telling me and I quote"unfortunately theres not much he can do ".I asked to be referred to a neurologist and was told there was a very long waiting list so once again I'm on my way home with NOTHING .
Hi Tom,I believe it's that GPs do not have the enough knowledge or dare I say enough interest in the subject of rls and the devastating effects it has on sufferers and their families. I've got to the place where I just know that going to my gp for help is a waste of time.ive never been referred to a neurologist just have my prescription updated.I read all the suggestions and advice on this forum but I'm afraid some of the medical terms and medications given ,I've never heard of but this forum has been a lifeline for me.
I was at this low eb a month ago tried to stop the misery ended up in casualty I was totally devastated they didn’t leave me and escape the pain no help from anyone even now
Hello Tom - I had the insight about 6 years ago that oxalic acid in food was triggering my RLS. Since that time many people have taken my advice and achieved substantial reduction in RLS discomforts by following a low oxalate diet. Most of them report about 90% improvement. I was in that group for 5 years. My RLS persisted as an intermittent nuisance, rather than the chronic torment which I had previously experienced.
During the past year I have achieved virtually complete relief from RLS as the result of new insights. Because I can tell within 24 hours if I have consumed something which triggers my RLS, I know to look for a hidden cause.
1) Meats are considered safe for low oxalate diets because they are oxalate free. However, meat based soups and stews which are gelatin rich can cause the body to endogenously manufacture oxalic acid. When I took magnesium glycinate pills I was shocked to have return of discomforts. This led me to realize that glycine which is found in gelatin can trigger endogenous production of oxalic acid in the liver. Recent research has found that eating gelatin causes a rise in urinary oxalate. I can tolerate chicken broth made with breasts, thighs and legs, but using the whole bird results in too much gelatin.
2) Asparagus is recommended for people on a low oxalate diet. It took me years to realize that it was an RLS trigger. Recently I learned that most asparagus in grocery stores has been treated post harvest with an oxalic acid solution to preserve freshness and nutrients. I now find that I do not react to organic, untreated asparagus.
Scientists have found that people who suffer from RLS tend to have low iron levels in their brains and cerebral spinal fluid. I think there is a delicate balance of iron in the body that needs to be maintained and restored every day. This daily rebalancing is even more vitally important for those of us with low iron levels in our nervous systems. Oxalate (the conjugate form of oxalic acid) can take the place of carbonate when iron is loaded onto the blood’s iron delivery system: transferrin. When iron is bound onto the transferrin using oxalate in place of carbonate, the iron gets “locked up” and cannot be dispersed to the parts of the body where it is needed. It seems logical that flooding the body with intravenous iron could help to overcome this kind of imbalance and provide temporary relief to some people.
Some scientists dismiss the idea that the transferrin will bond with oxalate in preference to carbonate at the neutral pH range of the blood. I don’t think this idea takes into account the impact of the introduction of endogenously produced oxalic acid directly from the liver into the blood and how that would affect the blood’s pH during the binding process.
When the normal processing of the amino acid glycine is impaired, oxalic acid is produced in excess in the liver. A rise in the level of alanine-glyoxalate aminotransferase (AGT) is an indication that the liver may be overproducing oxalic acid as seen in secondary hyperoxaluria. One medicine associated with RLS, pramipexole, has been associated with a rise in aminotransferase in the liver. It is possible that an increase in the endogenous production of oxalic acid may be a cause of augmentation during the use of pramipexole and similar drugs.
Thanks a lot for the input:(1) in a nutshell i'm definitely not qualified to weigh in on the nutrition argument much, although I will say this broadly - it seems to me to be the case that it should absolutely be taken seriously and that targeted nutritional changes will help a lot of individuals with RLS
(2) On the other hand, I don't agree with the "better diet will improve 100% of RLS" claims that are out there (I know this is not your argument, just pointing out this rhetoric which i've come across a lot).
(3) In terms of our project - thanks for this, what I think i'll do is a bit of reading into some of the chemical factors at play you've mentioned above and crosscheck them with those implicated in sleep and memory consolidation. Sometimes a little exploratory cross-check like that can catch things you would never have predicted.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RLS from a butt injection?
Anyone’s views/experiences of this USA RLS treatment?
RLS and warm weather climates
How effective is Gabapentin?
buprenorphine for RLS
