Found this interesting study. I have severe burning. It is nice to find something that confirms my symptoms. I don’t feel as crazy…I will show this to my gp. He’ll probably be dismissive. I wish it said how to treat it though. journals.lww.com/clinicalpa...
RLS A Severe Burning Subtype - Restless Legs Syn...
RLS A Severe Burning Subtype
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e365
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Hope you find a solution. The article does mention the preferred treatment back in 2015 for severe cases: "need for current, dopaminergic treatment", i.e. treatment with dopamine agonists. Which as we now know will have initially felt like a life saving treatment, but which for the majority will have eventually led to augmentation, despair, and need for further treatment.
UPDATE: You certainly don't want to allow your GP to put you on a dopamine agonist, unless for a very short period: if it works quickly it could confirm that you have RLS rather than paraesthesia or another condition. But while you'd probably then be tempted to stay on the DA, in the long term you'd be better not do so: you should look at the amount and way that you're taking the pregabalin and/or consider a low dose opioid (if that's prescribable in Sweden)
Hi Chris, Thanks you always for your input. I was on OxyContin which worked great but I kept having to increase my dose so my dr took me off of it. Which was a shame because looking back I was much happier on it with only itching as a side effect. Pregabalin has horrible side effects for me and unfortunately doesn’t knock me out like it used to.
I do have sifrol in my bag of medicine I’ve been prescribed. I took it once and didn’t think it worked. But maybe the dose was too low? I’d like to try it again to see if it makes a difference just as an experiment. I refused it for a long while due to the chance of augmentation but in a moment of desperation and weakness my gp persuaded me to try it. I’m pretty sure I took the lowest dose. But I don’t know if you can take sifrol with pregabalin.
Joolsg would it be at all sensible - or inadvisable - to give a very short trial to pramipexole just to confirm or deny a diagnosis of RLS rather than something else? If so, how long should it be trialled for??
Yes you can take Sifrol for a few days. And you can take it with pregabalin.It would confirm the RLS diagnosis if it works.
Thanks Jools. e365
You can take sifrol with pregabalin so you could try it for a couple of days.
Thanks, will do. Do you know what dose is usually effective? Do you need to buildup to a level? Or just take it?
You can just take it. I don't know what dose you tried before but try .5mg. (.352 if they come in .088 tablets in Sweden). In other words 4 of the .125 or ,088 tablets
thank you for your reply
Thanks Joolsg and SueJohnson .
As I understand it - and do correct me if I'm wrong - if taking pramipexole (Sifrol) for 2-3 days stops RLS symptoms it probably confirms a diagnosis of RLS, but e365 should stop taking it and come back here for further advice on use of pregabalin/gabapentin or a low dose opioid?
And if taking pramipexole (Sifrol) for 2-3 days does NOT stop RLS symptoms it probably indicates that the issue is something other than RLS, such as paraesthesia etc, and e365 should still stop taking it and come back here for further advice?
Yes. No more than 2 to 3 days on Sifrol.
Thank you to everyone for your input. I really value your expertise and the support here on this forum. I found the Sifrol (pramipexol) in my giant bag of tried medications. The tablets are 0,18mg each. Four are missing from the box but I can't remember if I took 4 all at once or tried 1 tablet four nights in a row..all it says on the label is "take as directed". My question is how many tablets should I take? And, I'm stressing, this is a test. I will not risk augmentation!
As Sue suggested trialing at c. 0.5mg, and as Sifrol is indicated for treatment of moderate to severe idiopathic restless-legs syndrome in dosages up to 0.54mg, I'd trial at 3 x 0.18 = 0.54mg.
Thanks Chris, it’s very confusing with dosaging especially since the dr did not write the dose in the prescription. And my bad memory does not help either. But, I will try 3 pills.
Just to clarify. The .5 mg is the maximum dose when it comes in .125 mg minimum dose as it does in the US and other countries. In the UK the equivalent dose to .125 is .088 mg so the maximum is .352. In Sweden the minimum dose is .18 mg as I just found out and .54 is the maximum amount according to a previous poster.
Thanks Sue. The first Sifrol patient info leaflet I found said up to 0.54mg for moderate to severe RLS; the second one said usual maintenance dose 1.1 mg per day for Parkinson's rising to a max 3.3mg, and up to 0.54mg for RLS. This seemed to back up your suggested 0.5mg...
Thank you for your help. I really appreciate it. Will try tonight.
Thank you Sue, It’s all so confusing. I’m very cautious with medications. Are there any bad side effects that can occur? I’m actually a little apprehensive about trying 0.5 mg. We were out late last night so couldn’t try the sifrol.
Hi e365 and SueJohnson (and Joolsg ) : SUE/JOOLS - further to Sue and my exchange last night (above), as 0.54mg is the top recommended amount of Sifrol for RLS - how do you feel about 3 x 0.18 pills = 0.54mg or would you trial at 2 x 0.18 = 0.36mg? OR do you think this should be referred back to the GP, who is possibly likely to be conservative?
Hi Chris, Honestly I am torn. But, everyone here understands the desperation. So I have to weigh the consequences. I’m wavering in my decision. Maybe 2 pills is a good start? Ugh. I really hate this. Thank you for your support
2 pills will be fine. No there are no side effects to worry about.
Thank you so much Sue
Just to add my personal experience to the conversation about dosage of Sifrol. I had been on Pramipexole ( Sifrol) for years before I came off it because of augmentation a couple of years ago. Now, I resort to it occasionally when I have to go on a long car journey or flight, as it is the only medication I can be sure will prevent symptoms. I take two or three tablets of 0.088mg and that has been enough to give me several hours' peace. But of course you could play safe and take a higher dose if it is only for a couple of days.
I would trial 2 x 0.18. That's above average dose and should work within 2/3 days. If it doesn't, it would indicate the diagnosis is not RLS. Stopping suddenly after 2/3 days should also be fine and not cause withdrawal symptoms.
Thanks Joolsg. I will do that. So if I take pregabalin at 8:30. What time should I take the sifrol? I normally go to bed at 10pm. Just want assurance that I can take those near to each other even though I know you or Sue wrote there are no interactions.
There are no interactions with pregabalin. When do you experience the worst symptoms? If between 8 and 10 pm, take the Sifrol 2 hours before the usual time the symptoms kick off.
It’s as soon as I shut my eyes. I read in bed. I subconsciously rub my feet together I guess to stop the sensations. I didn’t really even realize I was doing it. But when I close my eyes it fires up!
Interesting article, but I could not access it all. I have the burning and ' cattle prod ' sensations with my rls.He thinks it is neuropathic pain and I am getting an mri to see if other things are going on.
It's all very frusgrating as I only get 10 min utes with him at that, as seeng a doctor in Tasmania is just a business transaction, tbh.
I am only allowed 150 mg pregabalin ( doesn't stop the burning pain, but helps a bit with rls.
Just given loads of paracetamol and ibuprofen...
( rolls eyes )
Yikes. That is horrible that you’re only given 150 mg pregabalin plus paracetamol and ibuprofen. I take 300 mg at night. Taking in the day didn’t make a difference. I have horrible side effects and it helps reduce the pain 50% maybe. My dr says we’ve reached the end of the road medicine wise. OxyContin worked best but he won’t prescribe it anymore. I guess your dr would say the same….
Try googling burning subtype rls. I’ll see if I can copy and paste the text for you.
You haven't reached the 'end of the road'. My UK 'top RLS neurologist' told me the same. Dr Buchfuhrer said any neurologist who says that doesn't know enough about RLS or the treatment options. I ignored my neurologist and pushed for low dose Buprenorphine.Have you been given an iron infusion? Has your neurologist offered methadone or Buprenorphine? They are highly effective for severe, refractory RLS.I take 0.4mg buprenorphine pills. My RLS score went from 38/40 on 150mg pregabalin and 25mg Oxycontin to 0/40 overnight. Buprenorphine has been miraculous and saved my life. I had decided life was too unbearable with severe nightly RLS waking me constantly. I sleep 8 hour's every night. My MS has stabilised because I'm now getting quality sleep.
Here's the US study.
neurologyadvisor.com/report...
Hi, I totally agree! I was referred to a neurologist at a small local hospital about 8 months after this started. His conclusion was peripheral neuropathy. But, he was pretty uninterested and ran some blood tests. I don’t really have any numbness and my nerve velocity test was normal. Then I went to a neurologist privately and his diagnosis was rls. He wrote a letter to my gp recommending an iron transfusion and neupro. My gp would not even send a referral for an iron transfusion saying it would never be approved. I can’t remember my transferrentin number (it’s written in my bio) but it was low! I never took the neupro. I’ve finally, after almost 5 years, been accepted into the pain clinic here at a large university hospital. Waiting list is 6-8 months. I’ll meet with a team of specialists. I’m hoping I’ll get to meet a dr that specializes in pain medicine. Then I will bring up buprenorphine and methadone and pray they listen with open ears. Otherwise I’ll look into going to London for a private iron transfusion.
The Iron Clinic in Harley Street London will do an iron infusion for £800. You send your iron panel results to them and they will arrange. You could combine it with a short holiday.One day, neurologists may wake up, bother to read the research and treat us properly. It's criminal.
Copy and paste this into your browser. Hope it works
Painful Restless Legs Syndrome
A Severe, Burning Form of the Disease
Karroum, Elias G. MD, PhD*,†,‡; Golmard, Jean-Louis MD, PhD†,§; Leu-Semenescu, Smaranda MD*,‡; Arnulf, Isabelle MD, PhD*,†,‡
Thank you, I will have a go at the copy and paste.
I posted the full text below as some are having issues opening the link. Myself included now
I was initially able to access the full link, but it's stopped working for me. There's a short extract here:
Why are you only allowed 150 mg of pregabalin as that is still on the low side and since it is helping your RLS a bit, if you take more, it will help a lot more and perhaps even control your RLS. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin." and 450 is the max. You might want to print off the part that discusses this to show your doctor at Https://mayoclinicproceedings.org/a...
Sue, .He probably has several reasons and hasn't exactly refused to increase the dose of pregabalin. At least he does believe that I have rls.
I have been experiencing severe lower back pain, and buttock pain extending down my leg which is new and very likely a muscular-skeletal issue. I was trying to explain to him that I get BOTH burning and aching.
He got annoyed by that.
The problem I believe, is that over 30 years ago I was physically addicted to alcohol and incorrectly diagnosed with borderline personality disorder, which has prevented me from obtaining help.
I also use 10 mg of valium a week and I have been led to believe that he is the only gp who will prescribe it ( it's not true, but I cannot see another doctor, as I am afraid of being labelled a 'doctor shopper).
Btw, I still drink alcohol as per health guidelines ( I was using it in excess to control severe panic disorder , because I was not allowed to have any other medication except for a huge dose of imipramine).
I believe the concept of 'addictive personality' has been debunked for years, and I certainly do NOT believe, 'once an addict, always an addict'... I have never been 'addicted' to valium, for example. Dependent, to manage my symptoms at times, but not addicted.
Anyway.
The Australian health system has more and more becoming a 'business' with the aim of gp seeing 6 patients an hour... or with difficulty, one can set up a 'long' appointment, but you need at least $ 280.00 in the bank up front (they CAN bulk bill, but choose not too).
I will tell you that Tasmania is a very small place and most specialists are fly in/ fly out and it can be months - even years before you can get an appointment. They all know each other and if ONE makes a diagnosis, none of the others will 'rock the boat' by disagreeing or proposing something else. This is why we do not go 'for 'second opinions'.
Of course there are SOME gps who will sit and listen.. gasp. Most are close to retirement age however.
I wouldn't DARE give a doctor the MAYO algorithm... they would get SO angry..at a patient questioning them and no, I would never be able to 'just request' a ferritin test.
So that was a long answer, to a short query Sue.
The very short answer ( and I DO believe this IS because I am a 61 year old female, of low socio-economic status, and not very attractive) is I don't need helpful medications, but instead must stop being dramatic and :
Lose weight
Stop smoking
Join a gym
Take these antidepressants.
Sod Off
That is terrible about the medical system in Tasmania. I understand it is a nice country to live in and the people are very friendly. On your antidepressant, all but Wellbutrin and trazodone will make RLS worse. However you might not be able to get those. I have a note that for Australia Nortriptyline or moclobemide.
Perhaps you have seen this in the forum since you mention ferritin so forgive me for repeating it. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Since you can't get a ferritin test you might want to start taking iron tablets. Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin.
Thank you Sue !I have Long since stopped taking antidepressant medications ! I really do not think I need them anymore.
I purchased iron (ii) glycinate 87.7 mg equivalent to iron 24 mg with viatamin C 500mg. Is this what you mean and is it a correct amount ?
The only other thing ( bar pregabalin and panadol etc) is Clonidine 100 mcg.
.
I will be beginnjng the Mediterranean Diet next week, and will see hkw that goes and will also try to go swimmjng as much as I can.
I will let everyone know how it all goes.
Yes that is the same thing. You would want to take 3 of them to get enough iron.
Clonidine may even help RLS.
Thanks Sue !
Very useful information. In the study above, those with burning sensations outnumbered those without. We tend to regard “classic” RLS as nonpainful and “just” having the urge to move but these numbers suggest painful RLS may be a lot more prevalent. Certainly many people reporting here experience the painful type.
What a shame i can't open link sent re severe burning presumably of feet xx
it’s weird some can open the link and some can’t. I posted the title and author of the study in one of the replies. Try to copy and paste
here is the text in the link:
Painful restless legs syndrome: a severe, burning form of the disease
Elias G Karroum et al. Clin J Pain. 2015 May.
Show details
Full text links
Cite
Abstract
Objectives: Limb sensations in restless legs syndrome (RLS) include an urge to move, a discomfort, or even a frank pain. However, no large studies compared painful to nonpainful RLS as specific phenotypes. We investigated the painful form of RLS in a clinical series of primary RLS patients and a large sample of members of the French RLS association (AFE).
Materials and methods: Fifty-six patients with primary RLS (face-to-face interviewed) and 734 AFE members (received by ground mail an self-report questionnaire) responded to the presence/absence of painful RLS sensations and were included. They completed a French reconstruction of the McGill Pain Questionnaire (Questionnaire Douleur de Saint-Antoine [QDSA]) to assess their RLS sensations as well as questions about demographics and clinical RLS features.
Results: Sixty-one percent of interviewed patients and 55% of AFE members had painful RLS sensations. The patients with painful RLS were more sleepy and tired than those with nonpainful sensations. The RLS severity and need for current, dopaminergic treatment were higher in AFE members with painful than with nonpainful RLS. In both the groups, the QDSA qualifier "burning" was the most frequent (37% to 44%) sensory discriminator of painful RLS. In the AFE sample, QDSA scores, and the distribution of words in all QDSA subclasses was skewed toward a more severe connotation with more than one third of patients selecting affective discriminating words like "exasperating," "exhausting," and "unbearable."
Discussion: Painful RLS appears to be a severe, "burning" subtype of RLS, and could be a distinct disease or a clinical variant in a sensations continuum.
Hi e365, I cannot offer you practical advice about how to deal with your RLS and the accompanying burning but I can tell you that I also suffer from the painful symptom. I have been experiencing burning for 5 years, starting after my Doctors switched me from Mirapex to Neupro. Neupro was amazing for 6 months. The first real relief I had had in years. Unfortunately, it did not last. The burning started. At times it was severe; like an extreme sunburn on different parts of my body. Interestingly I almost never experienced the classic RLS symptoms like jumpiness and jerky limbs at the same time I was burning. The burning has been my first experience with RLS and real pain. My doctors response to this new symptom was to increase my Neupro dose. Things only got worse. More augmentation.
Now I am in the process of weaning myself off the Neupro. Its hard but I am determined to get away from the dopamine agonist and try to reclaim some normalcy in my life. So far the most challenging part is psychological. Sometimes I feel a little crazy like this is all in my head. I have never felt comfortable in social settings. That has only gotten worse. I have gotten to the point where I don't like to leave the apartment. I get too anxious. And it is exhausting. This has been especially hard on my wife who has been extremely supportive. Its not easy to live with me as I go through this. So much moodiness.
Hopefully as I get away from the dopamine agonist I will get my feet back on the ground. I can say that this community and the advice I have read and gotten here has been the most sustaining connection I have felt in years. I am eternally grateful to the people who share their time and experiences .
You are in the right place to figure your situation out. Good luck.
Hi RiversW,
I feel really sorry hearing your story. I recognise a lot of your frustration and feelings especially the feeling crazy part. One neurologist told me RLS isn't painful..... Our social life has also taken a hit since this started 5 years ago. Luckily we both have supportive spouses. My gp referred me to a psychologist a year ago and I went very reluctantly but after the first session I was all in. I think it really helped my mind set. Although I stopped seeing him in October I still benefit from our sessions. There are therapist that specialize in working with chronic pain. I highly recommend trying to find one. You have nothing to lose.
I currently am taking pregabalin which many report using successfully. I was prescribed sifrol two years ago (which I tried at the lowest dose I think for 4 nights- it's hard to remember but 4 pills are missing from the box) and will try again for 3 nights at a higher dose just to see if my rls gets better. I was also prescribed Neupro which I never took. Augmentation terrifies me because I can't even imagine having worse pain than I do now. Have you tried opioids? Oxycontin helped me the best but dr won't prescribe it anymore....very few side effects (for me at least) and I just took it 30 minutes before I wanted to sleep.
Kind regards
Your suggestion for therapy is a good one. What do I have to lose?
As for opioids, I was on codeine and mirapex for years. That combination was moderately effective as long as I avoided triggers like alcohol and chocolate. Staying away from chocolate, now that was suffering. I stopped taking codeine recently when I began the process of weaning myself off the Neupro patch. At that time I switched to a 10mg buprenorphine patch. As I reduce the Neupro, I will increase the dose of buprenorphine to 20 mg. I am not sure the patch is the way to go with the buprenorphine. We will see.
My experience with pregablin and gabapentin is inconclusive. One neurologist prescribed what seemed like a massive dose of gabapentin; 3000mg a day if I remember correctly, though it may have been more. The brain fog was too much for me. Besides I didn't trust this neurologist. At the time her primary concern was getting my off the codeine. Also, when I told her I had RLS in my arms, she said to me, if the sensations are in your arms it can't be RLS. I ask her if she had RLS. She said no. I said, how do you know it can't be in your arms then?
I have been taking pregablin for the last year, but I cannot tell if it is helping or not. Augmentation may be too much for the pregablin, I don't know.
take care. R
Codeine didn’t even touch my pain. I ended up in the er because my pain was so unbearable where I was prescribed OxyContin. I have it in my arms too. Every single night. Arms and legs. These ill informed doctors will drive you nuts. I printed out a bunch of information for my gp and that’s how I ended up in therapy. Basically thinks I’m a hypochondriac. I doubt he even glanced at the papers. Gabapentin made me feel suicidal even at a low dose which was scary but not pregabalin. I take 300 mg every night. I also have a benzodiazepine to take if I’m really having trouble falling asleep. Take that 1 or 2 times a month. Took one last night because we went to friends for dinner which has become a very rare occasion. I get anxiety because I know I’m missing my medication time at 8:30pm. Then I worry I won’t be able to sleep. Last night I took the pregabalin at midnight and then had to wait 90 minutes for it to kick in. So I decided to take a benzo and go to bed. Sometimes you have to live. I wish these doctors would understand that! Anyway, I’m consciously trying to not let this disease take over my life.
I cam empathize with everything you say. After a time the codeine may have just been palliative for me. I have always been afraid to take anything stronger because addiction problems run in my family.
I sometimes take Xanax for sleep if I have been awake all of the previous night which happens often with me. It's great for anxiety and sleep (if symptoms are not severe) but if I take it 2 night in a row, I get very depressed and ever more difficult.
Oh my gosh, medication anxiety is something I am totally familiar with. The terror of going on a trip and forgetting your meds. I have stories.. The anxiety of going through customs and an agent opening your bags and asking if you are smuggling drugs because there is a huge bag of meds in your suitcase.
It took me too long to figure out that doctors are not infallible. Laziness on my part mostly. I wish that they would figure it out. Its difficult in this era of corporate medicine. Interestingly, it much better here in Brasil than in the the States. I pay out of pocket mostly, but not what I would pay in California, and my office visits can last up to an hour. My neurologist is very sympathetic and listens when I describe what is going on with me. I am lucky to have found him although is specialty is Parkinson's. Too often it feels like doctors just don't listen.
And like you, I am trying to not let this ailment take over my life. Its hard sometimes.
R
I can really relate. Addiction runs in my family too. Amazingly I had no problems quitting oxy. Took 10 days to taper off after two years. But, honestly, I think so what if we become addicted? It’s better than pain and suffering. But that’s just my two cents. I’m terrified of forgetting my meds. I actually did do that once. Took all day to get my prescription filled. Luckily it was here in Sweden. Rls is a lonely road so it’s really nice to have this forum.
I totally agree. So what if we are addicted if it helps us live a normal life, whatever that is. I took codeine, granted a weaker opioid, for 15years. I never abused it. But I will admit that the stigma of taking opioids has gotten to me at times. So much so that sometimes, just after meeting someone for the first time and given the opportunity, I have occasionally just blurted out, "I have taken codeine for 20 years." It's quite funny really. I can only think its the shame. I don't know. But you are right, it is a lonely road. However, I have survived RLS for 40 years. I have survived and thrived at my work, which is quite demanding, for 40 years. I hope to make it a few more. And I am sure you will too!
Do let us know how you get on with the Sifrol trial!
Thanks for thinking of me, Chris. I chickened out. I will try again tonight. But maybe start with one pill.
Ok, Took one 0.18 tablet last night at 9:30pm. I took my 300mg pregabalin at 8:30 pm. At 10 I started feeling very tired. Read until 10:30. Still felt the fizzy/burning pain. Maybe it was a little better? But I woke up earlier than usual at 5am. Could not fall back asleep. Feeling very tired this morning and vision is blurry. Ugh. Need to work. Meeting at 9:30. Hope this goes over. Contemplating if I take 2 sifrol tonight. Oh, I have a generic version of sifrol. Auto-something. Read generic version aren’t as effective.
Did you persevere with the short trial with Sifrol, and if so how did it work for you?
I tried it one night- one pill. Felt out of it more than usual the next day…. But I don’t know if it helped. I really am anxious of putting these drugs into my body. Maybe I’m too cautious?
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