RLS SPECIALISTS: I am making this... - Restless Legs Syn...

Restless Legs Syndrome

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RLS SPECIALISTS

RC723 profile image

I am making this article just to vent a little bit. I’m 34 years old with severe RLS chronic in my legs in arms , I don’t have augmentation I never used DAs. I have tried every drug I know there is no cure little no treatment and the side effects from opiates are horrible. I really have no life anymore I contemplate suicide everyday and I have come pretty close to it. I was just wondering does anyone feel RLS specialists help enough. The doctor I see in Connecticut is great but I feel like unless an iron infusion works for u or u can handle opiates with little side effects, how are these doctors really helping ? I should say they know about augmentation so that’s another plus regular doctors don’t know shit. My last appointment was like ok we tried everything let’s try dipyridamole which did nothing. We tried Gabapentin lyrica horizant all the stuff a regular neuro would have prescribed. Why do I have this 24/6 why couldn’t I just get nighttime RLS take some weed gummies pass out. I’m in the US I can get marijuana anytime I want but of course it doesn’t do Much for RLS . Everyone can take it for anxiety sleep and pain but I get the disease it doesn’t do anything for . It’s a shame my doctor doesn’t even know what to do at this point. Having RLS is horrible Because I’ll do these. Dr visits but I know deep down nobody can help me . I was thinking if I committed suicide they can get the word out there that this disease is causing people to Kill themselves. However I just wonder Sometimes like Dr. B in California is a life saver for many. I would never tell RLS sufferers to not use opiates we need it desperately. I just feel like most first line meds do nothing unless it’s a mild case supplements do nothing and I was thinking how is opiates really helping us? Tiredness, nausea , nodding off, less motivation, brain fog, no sex drive… does anyone sit around thinking to themselves like wow not only is there nothing even remotely close to a cure but like wow there isLike no actual treatment for this wtf!! I thought Buprenorphine would be a life saver but 2 mg doesn’t do Much I was thinking going up to 2.5 mg or 3 mg I can’t take methadone the stigma of being on opiate is bad enough but methadone sounds worse to tell someone.. plus I’m 34 years old if I lived another 50 years I’m going to be on an opiate everyday!!!! I don’t see it. Anyway my ferritin was 172 recently so I know iron won’t help I just understand a disease that causes people body to have to move constantly could have basically no effective treatment. If I was Elon musk or Jeff bezos I would dedicate my life to curing this horrible disease. I heard a cancer patient tell me once stage 3 cancer was nothing compared to dealing with RLS hopefully one day when life is over we can find out where these horrible diseases in the body come from and why not much help is available. By the way RLS sufferers should be prescribed opioids I’m not against believe I’ve taken them so don’t get the wrong idea here I guess I’m just upset and needed to vent

147 Replies

I can understand your frustration, and admire your openness.It's a horrible situation to find yourself in.

I've been on opioids for about8 years, on and off. Even though I never sought them ( I was prescribed for pain after spinal reconstruction) I am thankful for them. I'm 75- so not at the same end of spectrum as yourself.

I don't have any of the side effects you mention, except perhaps some worsening of eyesight which may be due to the opiates.???

In your situation I wouldn't throw them out completely, unless you are opioid hardened, which may be a reason Buprenorphine don't work so well.

I presume you aren't on any other triggering meds such as antidepressants and antihistamines?

Also check out your intake-- so many substances can trigger rls.

For me it is artificial sweeteners as in most soda drinks, most processed foods as in hams, bacon, smoked stuff.

Raising agents- which means a lot of biscuits/ cookies and such like.

Do you have Crunchy bars over there? Absolute Dynamite 😢

Msg is a real biggy- we used to use a flavouring powder- "BAY "something- yikes-- sky high I was for the night. Googled it, and there it was-- every American who had used it was up in the sky.

"No added msg" is a real give away. Avoid.

Alcohol is something I appreciate, but it costs. Sleepless is a fierce companion to RLS.

If you haven't already, then do keep an intake diary. It may surprise you.

Suicide is something almost constantly in my mind- more from withdrawals restlessness, but it is a natural feeling when things are going bad.

Mostly it is the effect on my loved ones, and especially my grandchildren that stays my hand.

But it certainly is an option.

I'll leave off now.

You are not alone-- I reckon rls is a major cause of suicidal deaths in modern society. But it isn't a notifiable disease, and simply not taken seriously by even the medical profession. Apart from a few noted individuals.

I take it that you've been in contact with Dr B?

I hope you get some relief, somehow along the line.

Please feel free to come back and give out, and even report back on my suggestions.

Cheers!

RC723 profile image
RC723 in reply to Madlegs1

Thanks for your response , I’m just curious what is your opiate intake look like these days… which drug are you using?

Madlegs1 profile image
Madlegs1 in reply to RC723

I'm taking Oxycontin 10mg twice a day, and Oxynorm 5mg to make up the shortfall. That's just 25mg of opiod per day.Some side effects for first month, but ok after that.

Major downside is NO alcohol!

67Waterman profile image
67Waterman in reply to Madlegs1

So that is why Maltesers also sky rocket my RLS!!

How much gabapentin did you take? Were the side effects too much?

RC723 profile image
RC723 in reply to SueJohnson

No I took the highest dose… I’ll prob give the Buprenorphine another shot. Up the dose a little.. 200 mg of dipyridamole didn’t do much unfortunately. Thank you for responding Sue, I believe I spoke with y on Reddit also I appreciate u being so involved with helping others

SueJohnson profile image
SueJohnson in reply to RC723

You probably did as I am on Reddit.

This is the place to vent. RLS has the highest suicide rate of all other neurological diseases for a very good reason. I absolutely understand what you say. I have seriously considered it in a very calm, collected, logical way. I just thought what is the point? Dreading going to bed every night just to experience those horrible sensations again and again.I had a last minute reprieve when my neurologist reluctantly agreed to let me try buprenorphine. It was miraculous. After 5 years of trying everything. Oxycontin, tramadol, gabapentin, pregabalin, keto diet, low fodmaps diet, low oxalate diet and every vitamin and supplement mentioned on any help group, I still had 36/40 RLS. It went to 0/40 overnight.

But, the side effects of buprenorphine floored me for a week. Extreme nausea, vomiting, no appetite. Luckily my medical cannabis stopped the nausea. Then I got severe panic attacks and anxiety and racing heart. I took pregabalin for 5 weeks and they settled.

I'm really sorry buprenorphine doesn't touch your RLS. The opioid study run by Dr Winkelman at Massachussets General, reports that the average dose is 0.6mg but there are some on higher doses. You may metabolise buprenorphine really quickly. I know you don't like the idea of taking bup or methadone but you need sleep and the awful sensations to stop. Dr Buchfuhrer says he can help 97% of patients. You may be in the 3% but I'll bet he could sort your RLS. The brain fog, tiredness and nausea can all be handled by perhaps taking specific strains of cannabis.

As for your ferritin being 172, some RLS patients need levels above 300. As soon as they drop below that, RLS comes back.

I definitely think you could try the injectafer iron infusion and methadone. I know you're 34 but if methadone works without terrible side effects, who cares that you'll be on them for decades? Quality of life is what we all need and with RLS we're pretty much at the bottom of the pile. If anyone finds something that works for them, it's a cause for celebration on here.

Vent away, but do consider upping the bup dose as you clearly have a very fast metabolism.

As Madlegs says, check for all the meds that trigger bad RLS ( anti depressants, anti histamines, cough and cold meds, statins, PPI gastric meds, beta blockers) and keep a food diary for any triggers.

Let us know how it goes. We'll worry about you if you don't keep us updated.

MaevieMaybe profile image
MaevieMaybe in reply to Joolsg

Omg no, does it really have the highest of any neurological disorder?! Ugh, I hadn’t heard that stat, but I do hearrrrr that stat, for sure. 😖

Joolsg profile image
Joolsg in reply to MaevieMaybe

EARLS commissioned a study in 2018 and it was presented at the RLSUK AGM. There have been other studies showing similar results.And yet, RLS is STILL not considered serious enough to be taught at medical school. It's criminal.

academic.oup.com/sleep/arti...

ssri.psu.edu/news/suicide-a...

ncbi.nlm.nih.gov/pmc/articl...

RC723 profile image
RC723 in reply to Joolsg

Thank you Jools…. I know I have spoken to you possibly last summer on here. I appreciate you caring. I believe I even saw you on a podcast talking about the serious nature of RLS a while back. I see Dr. Koo in Connecticut from the RLS foundation. I’m going to ask him about getting my iron up to 300 it’s so funny how ferritin fluctuates, when RLS began in 2020 my ferritin was low 30’s. then I got it up things got a bit better and I was fine but eventually I got severe RLS. My ferritin went from 30’s to 50’s 70’s 100’s and so on now 172 so I will see what he says isn’t the saturation a big part too ? Mine this time was 27, isn’t the at just as big a factor as the ferritin from what you understand?

Joolsg profile image
Joolsg in reply to RC723

Yes. And Serum iron should be higher than 60 and transferrin above 20%. So many variables. I have no idea why infusions are so effective for 60% but make no difference to 20%. There are so many pieces missing in the puzzle. Imagine if big pharma spent the same money researching RLS as they do on MS?

ncbi.nlm.nih.gov/pmc/articl....

RC723 profile image
RC723 in reply to Joolsg

If you don’t mind I was just wondering how are you doing with the MS? Do the meds work? Don’t some people just take a shot now a few times a year if they are lucky ?

Joolsg profile image
Joolsg in reply to RC723

I was doing brilliantly on a wonderful drug called Tysabri given 12 times a year by IV infusion at hospital but had to stop in Dec 21 as I developed a very common virus that shows no symptoms but can cause death while on Tysabri. My doctors switched me to another drug called Ocrevus, given twice a year by IV infusion but it depletes all your B cells, meaning you are very vulnerable to infection and don't make antibodies to the Covid vaccine or boosters. I caught Covid having the treatment in March in hospital! I now have to effectively shield and am avoiding all meetings, events etc in indoor spaces and have decided to stop the MS treatment as the risk of severe covid with no immune system and no protection from vaccines is greater than the risk of MS relapses. It will take until February 2023 before my B cells start to come back.But on a more positive note, my RLS is completely under control with low dose buprenorphine and I am sleeping 8 hours every night. I'm up late tonight (it's 2am here) only because I had an afternoon nap so wasn't sleepy until now.

RC723 profile image
RC723 in reply to Joolsg

Your still taking less than 2 mg of the buprenorphine?

Joolsg profile image
Joolsg in reply to RC723

Far less. I take 0.4mg. (0.2mg at 10pm and 0.2mg at 12.30). The average dose for RLS is 0.6mg but I know some people on 2mg and some on 0.1mg, so quite a big difference.

RC723 profile image
RC723 in reply to Joolsg

Jools I’m so jealous !!!!! 0.4 mg 😉and I’m sorry it’s 9:30 in New York I always forget you are in England lol. Just curious though, we don’t get temesgic we get suboxone basically the same I just think temesgic doesn’t block opiate use. Are the dosages the same? Is 0.4 on the temesgic the same as buprenorphine/suboxone?

Joolsg profile image
Joolsg in reply to RC723

I'm on generic Buprenorphine hydrochloride which is the same as Temgesic in the UK. Suboxone contains Naloxone which is the opiate abuse blocker. Both very inexpensive in the UK so the NHS actually saves money. The other RLS drugs are expensive in comparison.

Fascinating to see Gabapentin is the most expensive. Average dose of 1200mg per night for a year is £18,397 compared to £293 for low dose Buprenorphine.

Costs to NHS for 7 days treatment:

Buprenorphine 0.4mg - £5.64

Targinact 20mg - £42.31

Oxycontin 40mg - £25

Gabapentin 600mg - £176.69 !!!

Pregabalin 150mg - £76.44

Pramipexole 88mcg - £23.49

Ropinirole 1mg - £12.54

I had no idea that drugs used for RLS in the UK had such a price difference. We don't have to pay for drugs if over 60 & we pay a flat annual max. fee of around £108.

SueJohnson profile image
SueJohnson in reply to Joolsg

With insurance I pay $12.00 for 3 months of 1500 mg of gabapentin. Pregabalin is a little m0re expensive and Horizant is very very expensive.

Joolsg profile image
Joolsg in reply to SueJohnson

That's very reasonable. It's strange that pregabalin is more expensive in the USA & gabapentin is more expensive in the UK. Horizant isn't available at all here.

rls-insomniac profile image
rls-insomniac in reply to Joolsg

That's very interesting Jools. One of the arguments I used when trying to persuade my consultant to let me try buprenorphine was how much cheaper it would be for the NHS compared to the cost of the other drugs. (Which as you know weren't working for me at all!)

Joolsg profile image
Joolsg in reply to rls-insomniac

I'm really surprised at the prices. How can gabapentin be so expensive? Maybe different NHS trusts can get cheaper bulk prices.We need to keep reminding our doctors that not only is Buprenorphine working well for us but we are helping NHS funding.

RC723 profile image
RC723 in reply to Joolsg

Jools I didn’t know horizant is not available by you. So you never got to try horizant ?

Joolsg profile image
Joolsg in reply to RC723

No Horizant ( gabapentin enacarbil) isn't available in the UK. I tried gabapentin for around 3 months and had terrible side effects. I was then on Oxycontin and pregabalin for 5 years but they were not effective for my RLS.Pregabalin is cheaper in the UK than gabapentin, whereas in the USA it's the reverse.

Dr. Buchfuhrer seems to rank the Alpha2Delta ligands in order and he prefers pregabalin, then Horizant and gabapentin comes last.

Joolsg profile image
Joolsg in reply to RC723

I've just replied to someone who's posted about Omperazole. All PPI meds worsen RLS and I see you mention you are taking it also. Consider switching to gaviscon and /or a good probiotic like Symprove or VSL. Hopefully it will reduce symptoms.

RC, you’re rather young to have RLS 24/7? Are you taking antidepressants or melatonin? I find these to be the worst offenders in terms bringing out the RLS beast. Benedryl, Tagamet, PPIs, possibly SamE, 5htp and certain anti-nausea meds too should be strictly avoided. The list is longer, but let’s start there.

The good news is these substances only make the symptoms of RLS worse not the condition. When you stop these drugs your symptoms will return to baseline which might be barely there. I’m of the belief that taken in the long run, some of these medications might actually benefit the RLS by up-regulating the dopamine receptors. It’s just too painful of a process and the receptors would eventually return to baseline. Thus, taking these dopamine antagonists would have to be an on again, off again, life long process and it’s just my theory that dopamine antagonists would be beneficial in the long run. I figure if dopamine agonists are detrimental to our receptors in the long run because they down-regulate our receptors then hey, why can’t antagonists do just the opposite.

For most people dopamine antagonists exacerbate RLS symptoms. For most people SamE and 5htp help RLS.

Hi Sue, I hope you are well. Dopamine antagonists, as you know, make ONLY the symptoms of RLS worse, they do NOT further down-regulate our already pathetic D2 receptors. Isn’t that mostly what RLS is - small and few dopamine receptors in conjunction with, or due to, iron dysregulation in the brain?

So think about it, if the Agonists are the real evil doers then isn’t it possible that Antagonists are actually the good guys? They are just such friggin painful good guys. However, a mild, short-acting dopamine antagonist (taken in the morning only) such as Benedryl or 5htp might just be the ultimate treatment for RLS. 5htp is a precursor of melatonin (I believe) but it is definitely in the same family and thus it would seem runs the risk of making the symptoms (only) of RLS worse. SamE is similar to an anti-depressant and should only be taken by an RLS sufferer in the morning. In the long run, who knows, maybe SamE or 5htp will up-regulate the receptors.

I describe the above phenomena (along with relevant articles) in the below post. See RKM7’s responses. healthunlocked.com/rlsuk/po...

EDIT: As you know, once a sufferer stops the dopamine agonist, their receptors start the slow crawl back to baseline. I assume this would be true for the dopamine antagonists as well. Once a sufferer stops taking them, their wonderfully up-regulated dopamine receptors will begin the inevitable march back to pathetic baseline.

RC723 profile image
RC723 in reply to SanAndreas

Do U think age has a factor in severe RLS ? Never thought of that it sounds interesting. But yes I’ve been through the RLS gauntlet as we all have.. I actually am taking Omeprazole but I’m going to stop and see if any effects lesssen. Honestly I don’t think it will make a difference. However when my RLS first began Benadryl was the culprit I figured when I stopped I wouldn’t be good but obviously not lol

SanAndreas profile image
SanAndreas in reply to RC723

Yes, the aging process can also be a factor in the worsening of RLS symptoms probably due to the aging of our already genetically pathetic dopamine receptors. You’re about 30 years away from that point. I feel that your RLS should be mild and intermittent and that you’re right-something else might be contributing to the RLS in addition to the PPI. Are you by any chance taking testosterone or other body building substances? I have heard that testosterone will worsen symptoms just as estrogen and progesterone will.

Yes again, do stop the PPI. Try zinc carnosine instead. It’s pretty miraculous stuff. Do you have a hiatal hernia? That’s usually the cause of heartburn and reflux. No bending after eating or exercise. Lastly, even though your ferritin is healthy I would try 25mg to 50mg of ferrous bisglycinate on an empty stomach about an hour before bed. If it doesn’t completely obliterate your symptoms in one hour then you can decide whether you care to continue in the hopes that an even higher ferritin count might help you. Actually the last thing I want you to try is an every night fast from after dinner till breakfast. No late dinner either - sorry. If you find you’re starving try some celery or piece of apple.

You’re in the army now son. Be a good soldier. Please keep me posted.

RC723 profile image
RC723 in reply to SanAndreas

I do not have a hernia. I will change my rating habit. Also, do u have an RLS diet or anti inflammatory diet u stick too?

SanAndreas profile image
SanAndreas in reply to RC723

No, I don’t actually. I have a somewhat benign condition called eosinophilic esophagitis so my GI doc wants me to avoid the most common triggers - dairy, nuts, soy, gluten, eggs. My go to food is vegetables and fish and rice crackers. 90% of my diet. I believe in eating healthy but ultimately science has shown that severe calorie restriction will up-regulate our dopamine receptors so that’s where my money is. And that’s not just true fr us with RLS, but everyone. By the same token, I believe that constant over-eating will down-regulate the receptors. We don’t want that. Many people on here have found improvement in symptoms by doing that long 12hour evening fast -night after night after night.

Your situation really sounds awful. I started opiods in my late 20's. I'm 52 now. Still take them. And probably will till denied access or something better comes along. The stigma of taking opiods is very real and can itself cause it's own mental distress. Family, friends, physicians and even oneself can be very judgemental to the point of just wanting to give up.

Sure, I can show people the articles and point to the statistics about how effective and safe they can be to treat RLS. But I really shouldnt have to and definitely don't want to. Or, am I reduced to renaming the opiate as some neurotransmitter medication to reduce the stigma. It all just pisses me off.

On top of that my doctor recently prescribed me several doses of Narcan to have on hand in case of accidental overdose or even intentional overdose. "Show your family and friends how to use it he says in case the need arises." Suffice it to say, its sitting in my drawer and no one is the wiser. I do live alone so it seems even more pointless to engage in those conversations knowing the feedback I'll recieve.

Anyways. I really hope you pull through and find a dosage you can tolerate that helps.

RC723 profile image
RC723 in reply to ziggypiggy

What opioids and dose do u take ?

ziggypiggy profile image
ziggypiggy in reply to RC723

Oxycontin 15mg once in the morning. Once in the evening.

I am so so sorry that you have reaches such a desperate state and you are so young. I also get RLS in my back and shoulders. Have you tried vaping cannabis because it works on the serotinergic pathways as opposed to the dopaminergic system used by opioids. It is therefore a good way to cut back on the opioids. I agree that taking the oil of gummies is much less effective for RLS and for some people not effective at all. The dry herb vaping is instant and if you have the correct variety known for calming the body and mind such as the Indica purple types - they definitely can give strong relief, I have found without strong psychoactive effects. I know that we are all different but I feel so sad for you and hope that you have explored all options and cannabis is very safe and non addictive compared to opioids. I totally understand why you feel so hopeless and I hope you have also explored a non inflammatory diet and eliminating triggers such as suggested by Madlegs1.

RC723 profile image
RC723 in reply to Goldy700

Yes the vape makes my RLS worse lol the gummies work better for me. I’m just curious what is like one or two foods You would say are part of an anti inflammatory diet ?

Goldy700 profile image
Goldy700 in reply to RC723

You cannot really put it down to 1 or 2 foods. Probably easier to start with what is pro inflammatory ie sugar, too much grain fed meat (I eat small amounts with lots of veg) wheat, alcohol. What is anti-inflammatory is vegetables especially greens, low fructose fruits ie berries, green apples, good quality water, grass fed meats in moderation, small fish, basically the Mediterranean diet is the closest. Dairy is Ok for some people but I prefer from A2 mild such as goats and sheep. Especially important is to avoid seed oils as they are pro-inflammatory and cause oxidative stress to the body. I prefer olive oil, coconut oil, butter or ghee. nexusnewsfeed.com/article/c...

67Waterman profile image
67Waterman in reply to Goldy700

A naive question ... but would you therefore say that something like sunflower seed bread is bad for you? With thanks Sally

Goldy700 profile image
Goldy700 in reply to 67Waterman

It is all a matter of balance - sunflower oil is very high in poly unsaturated fatty acids (PUFA's) which are highly inflammatory but OK in small doses. Gluten is controversial and some people can have non celiac sensitivity. This can cause a large range of symptoms and it is worth going off wheat for at least a month to see if you feel better off it. I feel some of our tribe are very sensitive to different triggers so worth trying eliminating different triggers.

For some, proteins found in wheat, called ATIs (amylase-trypsin inhibitors), may be triggering the symptoms. These proteins, which make up about 4% of wheat, act as the grain's natural pesticide, warding off meal bugs and other invaders. They can also cause GI trouble. "ATIs are very important food components that can worsen chronic disease," says Detlef Schuppan, MD, PhD, a professor of medicine at Harvard Medical School and a researcher at University Medical Center of the Johannes Gutenberg University in Mainz, Germany.

His research on animals showed that the proteins can trigger powerful immune reactions in the gut, explaining some of the symptoms of non-celiac gluten sensitivity, he says. It may also help explain other inflammation-related conditions, such as rheumatoid arthritis, MS, and asthma, Schuppan says.

webmd.com/digestive-disorde...

Dear RC723,

I do send you all my love and best thoughts and best wishes.

I agree with the other guys madlegs, joolsg, ziggypiggy etc.

What we need is genuine compassion and proactive clever thinking from our doctors but seldom seem to get it.

It seems likely that in the group of ‘intravenous-iron-responders’ , that people have their their own personal symptom threshold for blood ferritin levels .

I was in a similar state of regular consideration of suicide until after years of fighting and humiliation I managed to get intravenous ferric carboxymaltose . It has had brilliant results for me .

HOWEVER my symptom threshold appears to be about when ferritin = 500microgm/l.

I am now ‘allowed’ to have a top up when it drops below this level, assuming my TSATs is <45% (and my phosphate is normal as I-v iron can lead to hypophosphataemia in 30+% of people).

I do also take tramadol 100mg every evening and apply a 5 or 10mg Butec (buprenorphine) patch every 5 days.

Yes , I do get a certain amount of lethargy etc on this medication but the intravenous iron has been a game changer.

I KNOW THAT IT ONLY HELPS ABOUT 50% of people but , of course, many of the docs are afraid of middle level ferritin 300-700microgm/l. (You only very rarely get iron overload with ferritin <1000microgm/l).

It may well not be a brilliant or even partial solution for you personally but worth asking your doctor to consider treating your ‘normal’ levels .

Below is a case report which might help with the docs decision making. Only 1 case but it might lead to larger research projects.

doi.org/10.1159/000518911

I wish you all my best love and best wishes with your extreme troubles. And yes, please keep posting and staying with us on this forum. We care 100% about you as an individual and understand a certain amount… definitely more than most about what you are going through.

LOVE

Kakally

RC723 profile image
RC723 in reply to Kakally

You are all such nice people lol is the tramadol still working good ? My insurance doesn’t cover tramadol. however I was taking it and it helped a decent amount but I liked it because it would wear off in 6 hours or so and I wouldn’t feel like an opiate addict because I wouldn’t takeIt all the time. I can handle severe RLS at times throughout the day but when it’s chronic it’s unbearable. How do U know which med u are taking works better? Did you take tramadol alone before the buprenorphine ?

Kakally profile image
Kakally in reply to RC723

I started occasional tramadol 50mg (1 capsule) at 5-6pm 16 years ago . By about 14 years ago it was 1 capsule every evening . By 12 years ago I took 100mg (2 capsules) every evening and that was ok for a while. I then went through all the gabapentins, pramipexole snd ropinerole apart from loads of the usual dietary changes iron, magnesium and other things like acupuncture etc etc. None of them helped . 8 years ago I was given Neupro patch (rotigotine) which worked magically for 15 months . Then things got worse and then much worse and I developed augmentation which was horrendous. I eventually put myself into rehab because I thought I was totally bonkers and addicted to drugs rather than just in bad trouble with RLS. That’s when the suicidal thoughts started as I was becoming increasingly desperate. Coming off rotigotine ’cold turkey’ was a nightmare but it ended up better than with the dopamine agonists which I will never have again. I then had Butec (buprenorphine slow release patch) which did help a little . All this time I have continued taking 2 tramadol every evening. I couldn’t take anymore than 100mg tramadol during 24 hours or I get a bad headache😱🤣!. This side effect has persisted and I feel it’s quite good as it means I never take too many tramadol. But the RLS got worse and I did lots of reading and particularly about the work of professor Chris Earley at Johns Hopkins University, and intravenous iron . After much fighting and some humiliation from numerous doctors I was very fortunate to find someone who would give me the I-v iron (ferric carboxymaltose). And after about 4 weeks I had a really good result but didn’t dare to stop the tramadol or Butec. The good effect only lasted 5 months and my ferritin which had gone from 40-480 initially , by the 5 months had fallen to 195. I begged and was allowed a second infusion with great results again. My ferritin went up to about 600 I think and then as the level dropped my symptoms gradually returned. Over the recent years I can tell pretty exactly what my ferritin level is. When below 500 my symptoms are bad enough to need more I-v iron.I get my TSATs checked and it’s always been less than 45%. I still have to beg for the treatment. I still take my tramadol and occasionally leave off the patches. But as the ferritin falls I stick them back on. Tramadol has always been helpful to me but only very occasionally do I take an extra dose during the day if I I am going to go on a long journey in the car or sit in a cinema Rather long and waffly…. But that is my RLS pathway if it is of any use to you. Everyone’s is different

I wish you all the best with getting the help you need

But what if these drugs are a necessity? How do you cope when not taking Cymbalta, a beta blocker and a statin are a must for other health issues?I can certainly sympathize with the desperation; there are nights when even death seems preferable to another minute of this horror. I try to reassure myself that doctors are learning, that we now know it is a disease of the brain and there is more public awareness. But we have been done no favours by the medical profession: just last week my gp told me Mirapex was the drug of choice for RLS.

Since Cymbalta is an antidepressant, there are safe substitutes like trazodone and Wellbutrin when you are in a country where you can get it and there are others. A fairly safe beta blocker is propranolol. Unfortunately there are none for statins as you say. But the best way to lower cholesterol is to go on a vegan diet. My husband lowered his from 221 to 131.

Thank you Sue. It seems I’m ok with the beta blockers then.terribly allergic to Wellbutrin so can’t go near that.Ferritin still low at 25 and.13. About to be retested after 3 months of gentle iron,, sadly, my neurologist is anti-infusion and she claims there’s risks involved.

Still on Neu pro patch, but I fear it’s beginning to augment.

So grateful for the help and support from this group of knowledgeable and caring people.

Still hoping Minerva is ok!

Try Trazodone then. It even help RLS is some cases. Do you want some advice on how to get off the Neupro patch and on to gabapentin?

Yes please

To come off the neupro patch tear the 1 mg patch in quarters and reduce by one quarter of a patch every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. If you use the 2 mg or 3 mg patch, ask for the 1 mg patch so you can do this. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end.. But in the long run, you will be glad you came off it. On the gabapentin, beginning dose is usually 300 mg gabapentin. Start it 3 weeks before you are off the patch although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Most of the side effects of gabapentin will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." If you take magnesium take it at least 3 hours before taking gabapentin as it will interfere with the absorption of the gabapentin. Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he wouldn't have prescribed the Neupro Patch at

Https://mayoclinicproceedings.org/a...

RC723 profile image
RC723 in reply to Lilcatfeet

Was it a sleep specialist? Neurologist or pcp?

RC723 profile image
RC723 in reply to Lilcatfeet

Was this a sleep specialist ? Regular neuro or pcp ?

Lilcatfeet profile image
Lilcatfeet in reply to RC723

Neurologist

RC723 profile image
RC723 in reply to Lilcatfeet

Have u ever seen a sleep specialist who specializes in sleep medicine

Lilcatfeet profile image
Lilcatfeet in reply to RC723

I had an appt and cancelled it. I’m currently in bilateral casts and the logistics were just too complicated.

Taking Cymbalta is a must for me as it relieves nearly all my hot burning feet issues where other meds have failed. My doctors long ago upped my opiod dose to allow me to explore other medications (mostly mental health drugs) that would normally increase my RLS symptoms. This extra leeway has been a huge stress reliever and added to my quality of life. If I need to take a PPI for a few day for heartburn i can. If I need quick relief from benadryl for an acute allergy reaction, I can take it. I thank my doctor on the regular for understanding this. There are plenty of other medical conditions where treating the side effects of a necessary medication with another medication is considered standard practice. It should be an option for severe RLS sufferers as well.

New here, but RLS sufferer for many many years. Learning a lot from others already. I didn’t know certain foods etc can trigger it! My RLS is jn my legs only, but I can certainly understand your frustration and hopelessness! Doctors do NOT understand what we go through! Only another sufferer can fully relate! I am truly truly sorry you’re going through so much. I know suicide seems like an option, but I ask you to reconsider. Keep searching for the rhght combination of drugs/foods/ therapies to get things back under control. Remember we are all unique, so one person’s experience with those things will be different than yours. Write everything down that you try. A process of elimination recorded may help your doc u set stand what you’ve tried, what worked and what didn’t. I’d like to ask how you get opioids?! I live in Ohio and they look at you like you’re a drug seeker and they’d have to saw off their arms and legs in order to give it to you! I’m glad you have a doctor who will try different things and is t afraid to prescribe. Research. Maybe different combinations.. it’s a shame we have to practically be doctors ourselves in order to get help! I wish you so much comfort and love, and hope you can get this sorted out. Hang in there!

It looks like from your profile page that you are on ropinirole. Are you aware that up to 70% of people on it will suffer from augmentation, according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it.? Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.

Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked?

RC723 profile image
RC723 in reply to barbiedoneff

Hello.. I live in New York and I do virtual visits with Dr. Koo in Connecticut he is one of the docs on the RLS foundation. He prescribed opioids for RLS whether methadone tramadol buprenorphine and what not. Go on the RLS foundation website and look up doctors near you or far away but close enough for a virtual visit. These doctors understand RLS and prescribe opiates .

Anguished profile image
Anguished in reply to RC723

Omg, this is wonderful news. Thank you so very much will be calling today when the offices open. I was just told Methadone is a opioid, I always thought it was an opiate, can you clarify for me?

LotteM profile image
LotteM in reply to Anguished

Opioid and opiate are the same thing. Two ways of spelling. Maybe an EU vs US thing?

Anguished profile image
Anguished in reply to LotteM

Now I know why they are different, Not sure why I never looked it up before however according to the below, my answer methodone would be an opioid and not it opiate since it is synthetic and not natural. But thank you so much for your response Lotte M..

One is natural and the other is synthetic“opioids” Although these terms are often used interchangeably they are different: Opiates refer to natural opioids such as heroin, morphine and codeine. Opioids refer to all natural, semisynthetic, and synthetic opioids.

LotteM profile image
LotteM in reply to Anguished

Thanks Anguished. Interesting.

Omg I know how you’re feeling, today I’ve woken and my legs and arms are going nuts 😩 I take pramipexole and supposed to be taken at night, I’m really tempted to take some now as it’s doing my head in, I also take tramadol and do have some oral morph plus paracetamol, I go for a walk but live with chronic back pain as well as other things, I just would like this to do one and go away Xx

See my reply to barbiedoneff above.

RC723 profile image
RC723 in reply to Niamhcaiden

Hello, I lived with chronic headaches for years but the RLS is 100 times Worse. if the RLS went away my life would make sense again lol you’re aware pramiprexole causes augmentation correct?

SanAndreas profile image
SanAndreas in reply to RC723

The PPIs may be causing the headaches as well.

Niamhcaiden profile image
Niamhcaiden in reply to RC723

Sorry what does that mean?

RC723 profile image
RC723 in reply to Niamhcaiden

Your asking me what augmentation means ?

Niamhcaiden profile image
Niamhcaiden in reply to RC723

Yes I don’t know what it means !

RC723 profile image
RC723 in reply to Niamhcaiden

rls.org/treatment/managing-....

I hear you. I’ve had similar issues with Drs. My first few put me on DAs and knew nothing about augmentation. Kept prescribing higher doses. I was on 8mg of Ropinirol then was on 8 mg of Neupro. I made an appointment with the folks at John’s Hopkins. I thought I was getting THE experts, instead they gave me the last pitcher in the minor league bullpen. She took me off Neupro cold turkey! I didn’t sleep for 5 days the RLS kept getting worse. I was falling asleep while pacing around the house and falling on my face. I contemplated suicide. Until I forced myself to go back on Neupro. I went to a sleep specialist. Had sleep study done, blood work done. He put me on 5 mg of methadone and 200 mg gabapentin and 2 mg neupro. It worked. The methadone made me drowsy though. I made an appointment to see Dr B. I made the tree from NY to LA. He was great. He put me on Bup. (I still can’t spell any of these drugs forgive my poor spelling). I’m currently on 456 MICROGRAMS of it and we have been able to cut me down to 2 mg neupro. It works very well.

I have some questions I hope you don’t mind me asking. You’ve never been on DAs. I hate them. But Neupro seems much better than Ropinirol. Would you consider trying it?

2. You mentioned Bupronephron. But you said 3 mg. That is ALOT. Is that the initial dose you were on?

3. I know there is a stigma about methadone. It worked really well for me except the daytime drowsy part. I know that is no walk in the park but maybe it wouldn’t bother you as much. I understand that people don’t get it. I told everyone I knew that I was on it so they would understand how strong this disease was. They were sympathetic. If they weren’t then Fuck them. If it worked it worked.

I’m sorry you are going through this. Please write to me anytime. My words may not help but I support you. Try Dr B. He is great. Good luck to you. Sorry if I didn’t get some of the details down. Feel free to correct me.

I’m praying for you.

Tom

RC723 profile image
RC723 in reply to Jrskyhook32

Hey Tom it’s cool to see a fellow New Yorker on here. Where r u from ? I’m in Long Island… and so far I only tried 2 mg with buprenorphine. the RLS algorithm on the Mayo Clinic’cs website says it goes from 2-6 mg mostly.

I tried ropinirole few times it never worked.. what is neupro again ? And the methadone the side effects were too much plus as a man I’m sure you know the sex drive is not the same 🙁 lol That’s another thing I hate about opioids it’s like degrading to have that happen. Dr b doesn’t take New York patients. I see dr koo in Connecticut he knows RLS like dr b.

John Hopkins is the best… you didn’t see dr Earley ? Which lady doctor did u see I’m just curious

Jrskyhook32 profile image
Jrskyhook32 in reply to RC723

Dr B took me!

Neupro is a patch. It is a DA as well. But a lot less likely to augment

RC723 profile image
RC723 in reply to Jrskyhook32

Oh so are you still seeing dr b through virtual

Jrskyhook32 profile image
Jrskyhook32 in reply to RC723

He stopped because I’m about to move to Mexico. But he did see me and helped me withdraw from the Belbuca. Because they don’t have it inMexico.

RC723 profile image
RC723 in reply to Jrskyhook32

So what r u going to take ?

Jrskyhook32 profile image
Jrskyhook32 in reply to RC723

Neupro should be enough to take care of the restless legs but I need something to help me sleep and to stay asleep because I have periodic leg movement. I’m hoping once I get their I can get back on Gabapentin

I am so sorry that you have such a severe case of it. Hope you hang in there and thanks for educating me! Have you tried the RLS group at Hopkins in Baltimore? Best WIshes to you!!!

RC723 profile image
RC723 in reply to pmmargo

I see Dr. Koo in Connecticut he’s runs the RLS center at Yale so he’s as good as the best. Dr Earley at Hopkins isn’t taking new patients or out of state. my relatives live in Baltimore Maryland also. Every time I’d drive there i always said if they just took Delaware off the map and I didn’t have to drive through it, my trip would be much quicker plus it’s such a boring state lol 😂

pmmargo profile image
pmmargo in reply to RC723

We are going to Bethany Beach in a couple of weeks so I hope that part of DE is nice.

I say Koo should not sleep until he is able to help you! Hoping for progress for you.

Are you taking an antidepressant? A safe one for RLS is trazodone or Wellbutrin. The usual effective dose for Buprenorphine is 0.5 - 6 mg so I don't see any reason why you can't increase it. What was the problem with gabapentin? Was it side effects or did it just not work. If it was that it just it didn't work, many people give up because they didn't take enough or took it the wrong way.

RC723 profile image
RC723 in reply to SueJohnson

Hi Sue.. Gabapentin just didn’t work. I took it a while back for chronic headaches and it worked. It’s funny how drugs work differently for different things . No anti depressant for me I’m not a big fan… I was always against medications but I realize now people like myself need them. How do you take your Gabapentin? I’m just curious

SueJohnson profile image
SueJohnson in reply to RC723

I take 300 mg at 5:15, 600 mg at 7:15, and 600 mg at 9:15, and I am in bed at 10:15. How much gabapentin did you take? According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." and some require more.

SueJohnson profile image
SueJohnson in reply to RC723

With your contemplating suicide, an antidepressant might help. If so safe ones for RLS include Wellbutrin and Trazodone and they also help symptoms in some people.

Let me start by saying that I deeply feel your pain and suffering with this poorly understood condition. I have been afflicted for 30+ years with increased severity to, what at times feels like, the brink of madness. I have also found myself in desperate isolation looking into a future that seems hopeless and I want you to know something that someone told me long ago You are the only person in the history of the universe that is exactly like you and no matter how much you hurt, you are wonderfully made and there would be a hole in the universe that no else can fill if you were gone ❤️. I have found that a combination of natural and clinical medicines and topical treatments can provide relief for different periods of time and that I have to keep a list in my head or on paper of what I am using because trading treatments on and off seems to be the best approach. I use lot's of magnesium creams and oil topically as well as lidocaine cream. Both provide some long term relief, at least taking the edge off if not full relief at times. Those seem to have long and consistent efficacy for me. Coupled with that, I use a silent subliminal rls track and quite a few different natural supplements that work at different times for a while and I regularly switch back and forth until I get some response and relief. I use Skullcap with benfotiamine, fenugreek, fasting, ADP imulsified oregano oil, NOW brand dopa mucuna and I'm certain a few others that I haven't mentioned. Diet is a major player for me. Sometimes I have to fast a day and be very careful about how much I eat of anything, smaller portions seems to help. I get moderate exercise, not too much or too little and that also makes a difference. Just walking regularly is a bit of good medicine.

I take tramadol as well between 100 and 300 mg per day as needed. Personally I haven't found that prescriptions are extremely useful other than for the pain, which accompanies my rls, that includes dopamine agonists. For me natural mucuna seems more effective and makes me far less sick using but everyone is different.

In closing I can say that I never underestimate the power of prayer 🙏, perhaps those who meditate feel similar. This to me is a condition which afflicts my whole person and treating myself emotionally and spiritually is essential. I gently remind myself of all that many people suffer and I am not alone. You are not alone. Please keep coming back and putting in or taking away as much as you need to help yourself and perhaps others who are suffering with you. With ❤️.

Can you please tell me what is NOW brand dopa mucuna? Is it like a dopamine agonist or whatever those meds for RLS are that augment?

Mucuna puriens a natural supplement made from velvet bean that provides ldopa. I've taken agonists, Levidopa, neupro, and I find mucuna more gentle to my stomach and more tolerable. Now is a brand that provides one of the highest doses I can get over the counter from Amazon. It's still dopamine just more tolerable for me, I don't get nearly as sick and I get better results.

And you don't have any augmentation? How much do you take daily and what time of day do you take it and how do you take it? Are the results immediate? Do you know if it interferes with meds prescribed by doctor?

I can't say that I don't have augmentation as much as I have less trouble when using it. Unfortunately I have not met a treatment that I've taken internally that rls doesn't find it's way around eventually. It is easier for me to use the natural form of dopamine and I experience less gut problems than that from the prescriptions. I personally have not been able to take enough dopamine or dopamine agonist prescriptions to get relief ever because of nausea, so for me this is something that I can use. As far a contraindications with other meds, you would have to ask your doctor or perhaps look them up online but I imagine that it wouldn't be much different than any other dopamine. I take it right at bed time and it works fairly quickly, within 15 minutes or so. The dose varies a bit. 2 capsules represents 120 mg of L dopa and I've taken from 2 to 6 per evening depending upon severity. I don't personally have much problem altering my dosage as needed with this product but everyone is different and I think we have to do what works best for us individually. I use a fair amount of magnesium oils and or cream topically as well and it helps when everything else isn't cutting it. I also take a bio available iron supplement cautiously.

Have you had your ferritin checked?

Many times. I've been as low as 40 and well over 100 at times and I have used iron supplementation on and off with occasional relief. I possess the genes for hemochromatosis so am I somewhat cautious with iron.

Have you thought about taking gabapentin?

I've taken it and it didn't work well for me. It's been a long time and I believe that I have been on every single prescription available except maybe Lyrica which I may try someday if Tramadol stops providing any support.

When you say it didn't work well for me, did you mean it had side effects you couldn't live with, or that it didn't control your symptoms?

Didn't control my rls and made me a little lightheaded as I recall, which I could have lived with if I was getting relief but unfortunately not. I have idiopathic rls. My mother has it, my grandmother had it and so on. I'm not sure if that is useful but I thought I'd share.

Many people give up on gabapentin and don't think it works because they don't take enough or take it the wrong way. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

Interesting. I will talk with my doctor about this topic next time I see her. Thanks for the tip.

RC723 profile image
RC723 in reply to Rosyrestless1

I actually liked tramadol I didn’t necessarily feel like I was on an opiate

Rosyrestless1 profile image
Rosyrestless1 in reply to RC723

I have good luck with it. Least amount of side effects and helps with the discomfort. It's been around a very long time so I don't worry as much about long-term outcomes like some meds.

RC723 profile image
RC723 in reply to Rosyrestless1

What kind of foods do u eat for your diet ?

Rosyrestless1 profile image
Rosyrestless1 in reply to RC723

It's mostly low sugar and small portions. I don't limit variety as much as portions. Sugary foods and drinks seem particularly offending. The oregano oil I take is a huge help with any food reaction problems. My restless legs have a strong focus on my gut and torso as well as my legs. I can feel my stomach literally crawling at times and the imulsified oregano tablets I use really help stop that part.

Rosyrestless1 profile image
Rosyrestless1 in reply to RC723

After thinking about it a bit, I do think a lower carbohydrate diet works better for me and I am somewhat careful to eat protein when I do eat carbs. Also I am really careful to avoid any thing that fits into the excito-toxin category. MSG, most protein shakes things like that. In fact anything with added proteins from any source I am cautious about. Also anything that says glutamate on it. You may want to do some reading on the subject, I have found that there's good information on some of the substances to look for that are additives in food.

I always hate to recommend a dopamine agonist because of the danger of augmentation. Up to 70% will suffer augmentation but that means many more don't and you might be one of the lucky ones. And even if you are not, some people have found that they can switch to another dopamine agonist for awhile and find their symptoms relieved and switch back again later. I would recommend the Neupro patch as it has less of a danger of augmentation.

My symptoms started coming up around your age but I had no idea why I was so tired all the time. I’m 57 now. I hear you and I see you and this is the most frustrating illness because we don’t look sick. If I could implore you to just keep trying, I will be hoping you find the magic combination that helps you. I settled with 18 mg chelated iron before bed, and I alternate several days a week between diazepam and Oxy. I didn’t want to take them either, but it’s that or lose my mind from lack of sleep. One thing you may not have tried is cutting out sugar and don’t eat after a certain hour. I know it sounds crazy, but I have fewer symptoms if I don’t eat anything after 2 PM. And if I do want sugar it has to be with breakfast and not part of that last meal.

SueJohnson profile image
SueJohnson in reply to Marlayna

Are you sleepy the next day?

RC723 profile image
RC723 in reply to Marlayna

What are your does for Diazapem and oxy

SanAndreas profile image
SanAndreas in reply to RC723

I believe the iron is what has quieted Marlayna’s RLS more than the diazepam. You can read her posts. You can also read those of Sher78, GillRls, RKM7 and PoorRichard. There are several others (I would have to search) that have found complete relief from their RLS symptoms with nightly iron. Here is an explanation why that I posted a few weeks ago on here:

“There’s no rhyme or reason to magnesium or a bar of soap for RLS, that I can decipher. There is rhyme and reason for nightly iron. Autopsies have shown a lack of iron in the brains of people diagnosed with RLS during their lifetime. Iron is the grease and the glue that keeps the dopamine receptors chugging along regardless if the person has RLS.

Plus, RLS is a disease of the night-time. I know of no other condition quite like it, except for poor night vision. So we with this condition generally have no symptoms of RLS during the daytime despite the fact that we have pathetic D2/D3 receptors 24/7. Let this sink in for a minute. We have small and few D2/D3 receptors all day, everyday, yet we really only get symptoms at night. Btw, the small and few receptors were also shown on autopsy. It’s a fact that serum iron (not ferritin) drops precipitously at night, in us humans. On the bright side, I have read that we with RLS have a larger pool of dopamine than the average bear. So plenty of cargo just lousy trucks and not nearly enough axle grease.

BINGO! It all adds up. It’s all so clear. A few molecules less of iron making its way to our pathetic (likely genetic) dopamine receptors at night and we without any brain iron reserves get RLS. Thank god that by late evening, hepcidin (the fierce iron gatekeeper), has plummeted as well and thus any iron consumed at this time will be well absorbed - by any human being - with or without RLS. This too has been proven. The only thing left then is the intake of some of this iron at night when we with anemic brains/RLS really need it. A highly bioavailable form of iron will relieve RLS in about an hour.

Then, by the dawn’s early light, that serum iron begins to naturally rise in all creatures we call human, in an endless daily cycle, that gives us a short reprieve from the torture of RLS.

As with all things in life there is a point of no return. If someone is withdrawing from DAs or someone is taking a substantial enough amount of a dopamine antagonist such as Prozac, or they have a spinal injury or have chronic kidney disease (which elevates hepcidin) then 25mg of ferrous bisglycinate is like whistling in the wind. These people may also have RLS all day long.

I’m also beginning to think that if someone’s ferritin is too high (above 150 for women and 175 for men) then it becomes increasingly more difficult for that night time oral iron to be readily absorbed because these people’s bodies have higher levels of hepcidin that will tend to block that oral iron from entering the bloodstream. Water (ferritin), water (ferritin) everywhere, yet not a drop for our brains.”

Hello I too have had severe RLS since an early age. I am now 54 and the crazy thing is is that I remember my father before me who I got it from since it is hereditary, Used to tell me he wish he was as strong as my Uncle Andy who killed himself because he couldn't handle his legs. I would be like no dad you're stronger because you're not killing yourself the thing is I get it now I get what he was going through and yes sometimes I'd feel the same way probably more often than not. Until I got on methadone and I too am in the States I am in Chicago Illinois. I had heard here once that in the UK they prescribed methodone for RLS. The problem with me is that being from the States you can't get methodone from and doctor unless you have a drug addiction. Which I do not have. I literally get prescribed opioides all the time because I have really bad knees and my back is really screwed up with 6 herniated or bulging disk bulging disk, 1 slip disk and 2 crush vertebrates and is still screwed up. I keep trying to take them but they make me tired and I become short and irritated on them. Also, I love being alert and awake I I don't like going through life in a haze which is what those pills do to me. So after hearing that the UK treats RLS with methadone I took some vicodin for a week, and then went to an methodone clinic and told them I had a problem with opioides. After my intake I told my counselor the real reason I came to the methadone clinic because in the UK they used methodone for RLS. I never had one dirty drop again because I was not " really addicted". It took me 3 years of clean drops just to get a month's worth so I didn't have to drive to the clinic everyday. Well one day after about 3 and 1/2 years of being on methadone I decided I no longer wanted to be on any kind of drugs including methadone so I quit going. For me that was a big mistake because it is the only thing that ever worked & gave me a piece of mind and in all honesty I do not feel like I'm on any kind medicine with methodone. It was hard on my body at 1st, I was nauseous every day for about 3 months but once my body got used to it, I was happy, joyous, free and sleeping every night! I have not yet returned to the clinic because I am not looking forward to going every day again and are looking forward to going for 3 years just to get one month's take home. Right now the only way I'm getting through is that I keep a hot tub on my front porch and and I also have my recliner & a TV. So basically whenever I My RLS kicks in I jump in the hot tub & instant relief comes but but unfortunately it only lasts for about 20 to 30 minutes and I'm right back where I was before that. Though for me the trick is to fall asleep before the 20 to 30 minutes and then I'll get another hour or two of sleep. I absolutely hate taking any kind of medicine at all however I however I need to go back to my clinic keep going for 3 years get another 3 years worth a clean drops so I can get my take home and get back to where I was when things were good when I was on methadone. I wish to God I could find a doctor that would prescribe a methodone to me but I have asked many many doctors and they all say the same thing that they are not able to prescribe that I would have to go to a clinic. This really frustrates me but I can't find any other way. I hope my experience can help you in some way I basically just wanted to let you know that methadone is not a horrible drug and It's a shame that in the US you can get it unless you're drug addiction or fake it like me. Methodone actually can treat many many ailments but sadly in the US you have to be addicted to get it perscribed, at least thats been my experience. I'm DID NOT feel like I WAS ON ANY Medication when I was on it Now I just look at it as a maintenance drug just like when i take my inhalers when my my asthma acts up. I did not have to go very high on either I actually had to go down cuz as far as i know, 30 mgs is the starting dose for a person addicted and they continue to put you up if its not helping you but again, i was never "really" addicted and my dose was 20mgs cuz 30 was making me feel nauseous all the time.

SueJohnson profile image
SueJohnson in reply to Anguished

Have you had your ferritin checked?

SueJohnson profile image
SueJohnson in reply to Anguished

Brandon Barton (312) 563-2900 Chicago is mentioned in the RLS.org RLS providers. You might want to call him and see if he is willing to prescribe opioids.

Anguished profile image
Anguished in reply to SueJohnson

Hi Sue, I am already perscribed ipiods, I just don't take them b/c i dont like to feel tired & that's all they do for me, they for sure DO NOT help my RLS at all otherwise I would take them. Wait I though Methadone was an opiate!? Doe you doctor prescribe methadone?? Cuz I would love to find a doctor that prescribes Methadone emw/o going to a clinic. I don't want to have to go through another 3 years of clean drops to get a month's take home.

RC723 profile image
RC723 in reply to Anguished

Specialists on the RLS websites prescribe methadone

SueJohnson profile image
SueJohnson in reply to Anguished

Methadone is an opioid. Ask the Doctor I mentioned.

Anguished profile image
Anguished in reply to SueJohnson

Huh, I've always thought it was an opiate.

SueJohnson profile image
SueJohnson in reply to Anguished

see oregon.gov/adpc/pages/opiat...

Anguished profile image
Anguished in reply to SueJohnson

No need Sue but thanks anyway, I got the simple answer:Opiates are synthetic

Opioids are natural, so yes that would make Methadone an opioid.

Anguished profile image
Anguished in reply to Anguished

Yes. On iron pills.

RC723 profile image
RC723 in reply to Anguished

Go on the RLS website and look up specialists close to you or far away but take virtual appointments. I see Dr. Koo yale restless legs sleep center

I have been on opiates for around 25 years, the only side effect being some constipation, which is not much of a problem if you eat enough fruit and veg every day. I take Dihydrocodeine, and although two people here have advised me that there are better, more modern opiates, I stick with what I know, what works for me. These drugs have undoubtably saved my life, I was crazy and often suicidal before I had them. However, they don't work so well for my daughter but everybody is different.

RC723 profile image
RC723 in reply to lorrinet

Your daughter has it too ☹️ What’s your meds dosage for the day ?

lorrinet profile image
lorrinet in reply to RC723

I'm largely settled with five and a half (sometimes six, depending) 30mg tablets per evening/night, starting with two tabs at 6.30 pm (I never wait for it to start otherwise it's a swine to get rid of) and pre-bed about midnight, then one and a half tabs at 4.30 am-ish. The maximum dose over 24 hours is eight tabs, but I've never taken more than seven, and that was only during a brief period when I took antidepressants. Stopping them immediately returned me to my normal dose.

I have full-body RLS and I need all of these; suffering insomnia as well I've almost never slept the night through since adolescence (need the loo ayway). I've been told it's a lot, but it's worked for me for many years without augmentation. That's my life and it's a whole lot better than what I had before.

I have a strip of these tablets in every bag and in my purse. If I'm travelling I slip some into my bra, in case I lose my bag or it gets stolen, because whatever the loss, the greatest loss would be my medication. My husband even keeps some spare in the car just in case, having once had to collect me from the theatre because I'd forgotten my early dose and I was in such a state that everyone was staring at me, arms and legs shooting out, making dreadful strangling noises that I couldn't control or care about by then.

If I'm travelling during the afternoon, or seeing a play - anything that means sitting still for a long period - the RLS will soon come on, so I pre-empt it with just one tablet, which keeps it at bay. During the morning I don't get the RLS anyway. During just a normal day I don't need the drugs until I settle at dinner time in the evening.

My daughter and my son in their 40s are currently going through the usual meds and suffering the usual side -effects, and will of course eventually augment. But their GPs will not agree to opiates - yet, anyway.

RC723 profile image
RC723 in reply to lorrinet

So yours is genetic ? Or at least your kids got the genetic version of RLS . I think they said there is a hereditary gene responsible. Also I understand your pain it also sucks everyday of life u have to make sure u have pills on hand to live

lorrinet profile image
lorrinet in reply to RC723

My mother didn't have it until her 70s, and by then she was on so many pills for this and that that I'm not sure if one of her meds was responsible. I don't think my dad had it. I once met a lady who claimed she had it in her face, though there was no sign of it during the half hour I spent with her. It's a swine of a condition.

RC723 profile image
RC723 in reply to lorrinet

Yeah you know what else is frustrating… I kept thinking, out of all the diseases in the world I get a non pain related disease where the only treatment is opiates which is the last thing anyone wants to take. It’s so strange why this happens to some

lorrinet profile image
lorrinet in reply to RC723

I must admit that I don't really see why people are so afraid to take opiates. Obviously if you take them to get the 'high', or whatever, they are addictive, but if you don't chase that and abuse them and take only what you need, as I have over two decades, there is not a problem.

RC723 profile image
RC723 in reply to lorrinet

I think it’s because no matter if someone is an addict or taking it for real medical issues the body will be addicted and coming off the drugs is tough and u have to count on a pharmacy every month and if anything goes wrong and u can’t get your script you then can’t function

lorrinet profile image
lorrinet in reply to RC723

A while ago my daughter was augmenting after a while on one of the conventional RLS drugs and she went through Hell for a time (and they'd never worked that well anyway). She's now on something else but will more or less face the same problem again eventually. But I see no reason for me to ever come off the opiates: after two and a half decades there's been no augmentation, my dose is the same, and I keep a month in hand just in case. But if I can't get them and can't function - well, what's the difference whether I'm addicted or not? It's the same level of Hell!

TeddiJ profile image
TeddiJ in reply to lorrinet

hello. that is SO not true. there is our regular RLS hell and then there is opioid withdrawal-with RLS listed as a main symptom. it is fiendish hell on earth-with massive RLS in your entire body...along with intense full body sweating and body rocking. A jumping, screaming hell that makes your old regular little rls seem like cake. Suicide is definitely in your brain in this situation.

I was cut off from low-dose methadone for rls twice-in the huge city of Chicago. You are right to keep a month of it ahead and in every corner of your universe!! obviously, you are not getting cut off after all this time, and that is truly fantastic. but please don't spread the word that it is no big deal if you do, because it is a horrendous ordeal.

The fear of repeating that one night continues to rule my rls decisions every day.

if anyone on opioids is reading this and you are worried at all, order some high quality kratom powder and just keep it as an emergency backup. it works within minutes, though not an ideal long term solution. if only I had had it during the first withdrawal!

thank god for this forum, as i did find out in time for the second cut-off period!

best of luck to All!

I believe this is a curse...just like full blown Parkinson's. God can take it away...or not...the or not is where I am too. There are so many diseases that we just have to live with...no cure. God has not healed me but start praying He may heal you

RC723 profile image
RC723 in reply to CookiePooki

What r u currently taking for your RLS ?

CookiePooki profile image
CookiePooki in reply to RC723

I take one 50 tramadol. It helps a little but I have days of shaking g continually for five hours at a time and sometimes even after that ill wake up in the night shaking. Me doctor on Friday gave me a sedative and she said I promise you will sleep all night. And I did....problem after taking one clonazepam two nights in a row I could barely put one foot in front of the other today because I was so lethargic and sleepy. So tonight I'm not taking one. I took my tramadol around noon today. I'm praying I sleep but if I don't its nothing new. I'm 76 and have been battling this for about seven years now. I'm going to keep praying that God will take it away.but if not I know He's given me this for a reason and when I get to heaven it will never again be a problem. Like I said I believe only God can heal this.

RC723 profile image
RC723 in reply to CookiePooki

Do u have Parkinson’s also?

CookiePooki profile image
CookiePooki in reply to RC723

No

That's the problem with clonazepam - it has a half life of 48 hours. A better one is ativan or Xanax.

My sympathies… I remember being so desperate that I thought of having my legs cut off (what irony… then the GP might prescribe opiates 😂). Horrible yes… however, one notch above suicide, which I thought of often. It actually gave me relief knowing that I could always kill myself… tomorrow. I won’t bother you with my history, suffice it to say 20 years on hydrocodone and tramadol pretty much sums it up.

PLEASE consider what others say about prayer…including myself. It worked for me, my RLS has been cured for a few months now only through the grace of God. I’m not special, I am a garden-variety unworthy sinner like every human being on earth. God is love and God is all powerful.

I survived as an 18-year-old combat medic in Vietnam, I survived drug and alcohol addiction until I got sober in 1986, (again through the grace of God), I survived the deepest darkest suicidal depression/PTSD imaginable… God had mercy on me.

If you haven’t stopped reading, please imagine for just one second what it must’ve been like for Jesus Christ on the cross. Now remember that He is God and could’ve stopped the suffering at any time. Why didn’t he? “For God so loved the world that he gave His only begotten son that who-so-ever believes in Him shall not Parrish but have everlasting life.” (John 3:16) You don’t have to, like me, be crying in the fetal position on the floor for 2 hours begging for Jesus to forgive you and to have mercy on you. Just bring yourself, your humble self, to Him as you are, a desperate unworthy sinner who requires His help. Then think of the parable of the lost sheep… God will go to any lengths for just one lost sheep. We are all lost sheep trying to find our way home.

Just jump in… the water is great.

Playing jazz for over 50 years, now only to the glory of God.

We will meet in eternity. I haven't given up on the lord...I know it's all in His time. Thank you for putting your life in danger for the country. I'm so happy for your sobriety too. It's too bad we, all people, have to be so cautious of others, precluding otherwise a safer environment for all but as a follower of Jesus we know the devil is roaming about seeking whom he may devour. So until then I'll give you a hug when we meet in heaven.

Thank you for your service I have always been fascinated with Vietnam Vets.. I watch so many veteran interviews. I love to get a feel of what you guys really went through because I always hear vets say that movies can’t do justice to what it’s really like on a battlefield. did u manage any dude effects from the opiates like were they really bad ?

OudisCool profile image
OudisCool in reply to RC723

“Platoon,“ ia pretty decent glimpse, the first scene of, “Saving Private Ryan,“… Well, let’s put it this way: I might want to endure a couple of events in the rice paddies again rather than watch that movie scene again. Anyone who watches that movie should get a Purple Heart. .. not really, but you get my drift.

Unfortunately, my body liked opiates. I used heroin about a year after coming home to help me get through. Other than the usual fatigue complaints, hydrocodone was a blessing after routinely going 72 hours without sleep. (The greatest hell I ever went through was a period of five days without sleep… I still find it hard to believe that I survived that. Again, only through the grace of God.) Good luck…

Thank you !

I think you must have gotten the most comments on a post of all. I certainly have not seen anywhere this many.

I know when I checked my email i get all the notifications when I get a message I couldn’t believe how many people responded… it’s nice to see there are people who actually care especially when some of us are on different sides of the world

I, also, feel like you at times. I have been getting about 2 to 3 hours of sleep a night for the last week. Tomorrow I receive my first iron infusion but have been told it will take 4 - 12 weeks to see benefits. Who is this Doctor B in California? I have been seeing a sleep doctor. The VA has searched for an RLS specialist in Southern California for me but could not find any. Was told I may need to seek out a doctor at the university level.

stanfordhealthcare.org/doct...

Top RLS doc in the US

But the fact your getting an iron infusion tells me you have a pretty good doc what level was your ferritin

I know exactly how you feel!! It’s awful!!! I’m on the highest mg of ropinerole and it stopped working. When I take it now it makes me so sick.

Wow! 145 replies before mine. This forum has some good people who write about our common problem well. I have some of the same issues with drugs and advice not working well. At some point, one has to seek another expert opinion. It seems the Mayo Clinic algorithm and the RLS foundation are the latest and greatest guidelines. I had tremendous success with dopamine agonists for 25 years, was told to get off because of augmentation risks, but then put on Nupro patch with moderate success. Good luck. You are not alone.

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