My Journey With RLS, Experience With Kratom

[BHogan]

Hi! First time posting, but wanted to share my experience because I'm kind of on top of the world right now!

I have battled RLS for many years, and imagine like most have felt helpless at times, felt like no one understands what it really is and won't take it seriously, and have spent countless hours researching and wondering why it happened to me and if I'll ever be able to "cure it!". As you all know, when uncontrolled, it's a quality of life destroyer.

I truly have it bad, and my guess is most who are on this board do too. I've run the gamut of medications and treatments. ..dopamine agonists (made it worse), gabapentin (worked for years but just stopped working at even the highest of doses), tramadol (same experience as gabapentin, years of efficacy then just stopped working), CBD oil, every vitamin, mineral, and herbal supplement that even has a whisper of evidence of helping, direct iron infusions, CPAP, foot wraps...you name it, we've tried it. I now take 20mgs of oxycodone each day, which honestly I'm absolutely fine with doing as it works fantastically well and is a low enough dose I don't seem to have any sort of withdrawals or anything throughout the day. I'm an otherwise very healthy and athletic 50 year old male, fwiw, and have been dealing with the RLS for probably 15 or more years now. It affect both legs and occasionally my arms.

I write all this to say that I really do have RLS. When I read testimonials from other people on things that they claim work (like those miracle herbal supplements!) I read what they describe as RLS and chuckle...uh, having some nuisance twitchiness in your legs is not RLS folks. I'm sure you know what I mean. So, with my RLS cred established, I'm posting this to say that I recently started using kratom, and I can honestly say that it works. I've used it for the past three days and have not needed any oxycodone. That's a freaking miracle! Now, my legs are not as truly calm as with the oxycodone, but I'm able to sleep. I actually feel more side effects than with the oxycodone, mostly nausea but also a bit of dizziness, but suspect those things will pass with time. As many have already attested, kratom absolutely does work to treat even very extreme cases of RLS.

I think I'll probably just alternate nights (or weeks as it plays out) between my oxycodone and the kratom so both stay effective, but I am more hopeful than I've ever been!

I should also disclose that I'm an executive in the pharmaceutical industry, so I'm definitely not someone who is inherently opposed to prescription drugs or of the opinion that pharma companies are out to get people, so hoping my story may help someone who's feeling skeptical as I was to give it shot. In fact, and this will likely be an unpopular statement, my guess/hope is that someone in the industry is working on isolating the effective compounds in kratom today to develop an formal drug formulation from it, and suspect we may have an Rx version available in years down the road. I actually see that as a best-case scenario as we'd have a controlled, consistent, easily dosed product, and of course the natural form as well for those that prefer that, which I do understand and respect.

Anyway, the reason for writing all that is after years of dealing with this awful and completely misunderstood disorder I'm extremely skeptical when I read about herbal cures and solutions. So, fwiw, if you're on the fence, take it from this pharma executive, this stuff really does work. (Which also makes it a drug btw, but that's a discussion for another time, lol)

[jimmcar]

Loved your report!

I'm happy it is working for you. I like it so much, I'm growing it in Costa Rica, where I live most of the year. (It grows like a weed!)

You are wise to take precautions to avoid dependence or tolerance. I wish you continued success!

[Svengolly]

How much r u taking ? Once a night . Powder in water ? How many nites have u tried it ?

Thx

[Parminter]

Hi Bhogan

It does seem necessary to get the right Kratom in the right dose.

I have tried a few, but I have not hit the right one yet.

I know, from personal experience, that green and yellow help during the day with RLS Fallout, but I have not managed to find the right Red yet.

So, may we please have more details as to type and dosage and timing?

[BHogan in reply to Parminter]

The strain i tried was from Phytoextractum and called "Bali." It's legal where I am, but the ordering process is cumbersome, requiring bitcoin, etc. I dosed it at 3 grams (1.5 tsp as i measure it) at around 7:00 PM and again around midnight. As someone else indicated, it does seem to last about 4-5 hours, as do many opioids like oxycodone.

In reading over my post again, I do want to clarify one thing. My goal in posting was to offer a data point to anyone who was skeptical about its efficacy at all, like I was. However, I should add that in my mind there are still other perfectly valid reasons to be skeptical - risks and unknowns that I personally evaluated and decided i was okay with, but are absolutely legitimate. The Kratom leaf obviously contains compounds that are pharmacologically active in our bodies, and it hasn't really been studied to determine what, if any, risks there might be.

I'm actually really interested in natural/herbal cures because so many drugs start out as such. We absolutely know our world is full of things that can help treat disease, and countless drugs are derived from plant sources, etc. But I always point out to people that opium, heroin, and morphine are all to various degrees "natural," but no one would just assume they're inherently safe at any dose, etc - claims which i often hear about herbal therapies that have never been formally studied. The whole point of FDA review of new drug applications is to make sure those questions have been answered and that the end result is a consistent, predictable chemical entity that can be confidently be used in the clinical setting.

So all that said, I personally did some research and while there is some (very limited) data, my feeling is we simply don't know much about any risks, dosing guidelines, etc. And personally, I'm okay with that at this stage of my journey. My feeling is that it's used (and candidly abused) so widely that i feel at the low doses i'm trying, it's unlikely there are any huge surprises coming down the road...but please don't read my initial post as in any way implying that i'm saying "it's perfectly safe, go for it." If one has concerns about those unknowns, those concerns are certainly rational and your decision is obviously their own!

[march1044]

Don’t know where you live but in the U.S. now the FDA is trying to make it a schedule 1 drug. Please help to keep it legal. I’ve used it every day for over 5 years now for RLS and it still works great.

[TheDoDahMan in reply to march1044]

March, please tell us how many grams each dose is and how many doses per day that you are using. I've been using for two years but have had to gradually increase my dosage to 8 grams times 4 times per day and feel that soon it may not be very effective any more. But it's been a real lifesaver so far.

[jul2873 in reply to TheDoDahMan]

This is how I take it. I make up doses of 1 tsp. (about 2 grams) in a little cup of orange juice, which I keep on a tray in the refrigerator. I use those little plastic shot glasses, and I wait until the kratom dissolves in the orange juice. Kratom is not water soluable, but it does dissolve in acid, hence the orange juice. Then I take a dose as needed, rather than on a certain schedule. Currently I take about 6 doses in 24 hours, but sometimes more and sometimes less. I started with doses of 1/2 tsp. but gradually worked up to doses of 1 tsp. But before kratom I never used anything at all for the RLS, just hot baths, walking, etc. I think that may be why my doses are still relatively low; I never augmented on a DA. I'm 74 now, and just hoping that my doses can stay low enough, and kratom can remain legal, until they find a cure or--more likely--I die. Oh, the other thing I do is switch around the kind of kratom I use. That seems to help me keep the doses low.

[terrilynn35 in reply to jul2873]

I'm down to 1 tsp at night before bed. I guess I'm one of the lucky ones that no longer suffer from daytime RLS or other pain. I did suffer augmentation from DA's and kratom was my lifesaver.

[Parminter in reply to jul2873]

Hi Jul. You have not mentioned your iron status, If that can be got optimal, then you may be able to remain with your regimen until you're 98.

[Jev1972 in reply to jul2873]

Try Malay stains, they last a lot longer, less dosing.

[Ureshi17]

Hi,

Like march1044 I have also been taking the Red Vein Borneo strain for almost five years. And I’ve had to increase my dose to a similar amount (1 teaspoon 4 - 6 times per day). I haven’t used any pharmaceuticals apart from a week or so on Gabapentin. I truly hope it remains legal as I can’t see MM ever being legalized where I live! I still do get RLS symptoms and it takes about 30 to 40 minutes to take effect, but it really works well!

[Jev1972 in reply to Ureshi17]

I’ve been using Kratom for a year, have you tried stopping for any length of time? Any issues??

[Ureshi17 in reply to Jev1972]

Hi Jev, I have the RLS symptoms daily, so I haven’t tried stopping it as yet.

[terrilynn35]

I have been treating my RLS with kratom alone for well over a year. I also tried everything under the sun for the last 30+ years. I do take an iron supplement for low ferritin levels and magnesium to prevent constipation from the kratom. I don't have any other side effects. If you experience nausea and dizziness you may want to decrease your dose. I was very hesitant to try kratom because of the negative things I read when researching it but most of it was BS lol. In over a year I have not had to increase my dose and I don't have a dependence on it. I take only when needed because I don't want to build a tolerance because I don't ever want to go back to pharmaceuticals.

Good Luck!!

[khills]

Where do you buy kratom? I’ve never heard of it. Is it over-the-counter? Pill?

[involuntarydancer in reply to khills]

Would that it were so simple, khills. The lottery of Kratom availability relies on where you live. It is legal in some states of US. In UK and Ireland it was only recently outlawed. I believe it is also not legal in Australia. In the Netherlands it is legal (perhaps predictably - if it were going to be lawful anywhere I guess it would be there) and there are sullpiers there who will post it to UK and Ireland (unlike cannabis Kratom is odourless and unlikely to be detected by customs).

[involuntarydancer]

Thanks for this thoughtful post. I too find Kratom helpful. I am slightly concerned by the fact that it is not regulated or controlled where I live but it is such a useful tool in my armory of rls treatment solutions that I avoid contemplating this too deeply.

I find that I gradually become tolerant and at the moment I need two teaspoons (about 3.5grams) to calm the legs. It usually lasts 3.5 to 4 hours for me. I am currently reducing it in favour of an alternative regime at the moment. After a break I will hopefully become more sensitive to it again.

I love that it can be an as-and-when remedy although it is slightly habit forming if taken regularly. It is however much less unpleasant to withdraw from than OxyContin and MUCH less so than mirapexin.

[robbitybob]

Hi

Am in New Zealand. Here Kratom (Mitragyna speciosa) is listed on Schedule 1 of the Medicines Regulations 1984 as a prescription, restricted, and pharmacy-only medicine i.e. you need a prescription from a licenced medical practitioner to import it (good luck with that). So, it is not illegal to possess. Have found that can import up to 60grams (the most I have tried at any one time) without issue from AuthenticKratom.com in the USA.

Have used the Borneo Red Vein variety very successfully in the past by mixing around 7grams in milk and taking around 30minutes before bed (the reason I use milk is that also have type 1 diabetes so lacing the mix with loads of sugar i.e. orange juice adds a level of difficulty). For me the only minor side effect is a slight alerting effect. It stops RLS dead for me.

As I am one of the fortunate ones who has an understanding GP and can be prescribed Tramadol (yes opiate/synthetic opiate disdain is alive here too in the physician community and one needs to use negotiating skills to the max). I currently take one 100mg slow release Tramadol at around 6pm each night. If I get to take the Tramadol later at night, find that half a 30mg tablet of Codeine 30minutes before bed tides over until the Tramadol takes effect. The Tramadol has enabled a near symptom free life over the last year.

The downsides to Kratom for me is that it is expensive to import - around NZ $120+ per month importing 5 Oz - Tramadol is a subsidised medicine in NZ so only costs $5 per prescription for 3months supply. As those of us who have used Kratom know that it tastes absolutely vile in the raw state and as such is a bit of an art to convert into something that is palatable. Popping a single pill of Tramadol for me is significantly easier than dealing with Kratom.

Still, good to have more than one solution to RLS in your tool box. Am sure that I will eventually need to take a break from Tramadol (owing to tolerance) and will need to go back to Kratom for a period/extended period.

Hope the above info is of help to others - particularly those in NZ.

[Schwaerts55]

Hi BHogan! just posting to say hi and that I found your 'newbie" post very interesting. Shall be looking into kraton thank you. I found Oxy v good relief for whole range of symptoms; the MD who first prescribed "Endone" 5MG x 2 for pain relief following a bad fall but failed to inform me about it being basically synthetic heroin that comes with risk of patient becoming "dependent". Strangely I took same dose for 5 years with same effects on pain symptoms. Not long after this MD died, my "tolerance" kicked in big time and within months I was taking (I think) 2 x 70MG Oxycontin for same pain relief. At this point I myself decided to go into rehab - "Subutec" 2 x 8MG 2 days, then 2 x 4MG 2 days ... and when this "halving process" was complete had slight tremors for 2 or 3 days. Agree with your comment re "herbal remedies" - my lived-experience of same was very much "dancing in the dark"! As I see it the problem with prescription drugs (and for Pharma Execs also) is "one size DOES NOT fit all"!! I had 20 odd years of 'trial and error' of psychotropic meds only to have a "properly qualified" p-doc conclude, correctly so, my chronic depressive symptoms are T-R to these meds. It is the 'trial and error' that's problematic with pharmaceutical drugs I believe. Wishing you well, Steve

[auntiesioux]

OMG, I am sure hundreds of us on this site could have written the same as you just did. It is such a relief to have support in the ,"Misery loves company" category. It is so validating.

Have you seen the 'new' identifying label for most of us, "Malignant RLS." Actually it fits as the pervasive and extreme symptoms many of us have controls every aspect of our lives.

I have a doctor visit tomorrow with out PMD who is at the end of his wits with me. Last month he put me on methadone, of which I very reluctantly said I would take. Fortunaltey or unfortunately it had minus zero affect. I keep flapping and twitching on. I am not sure what Kratom is but will look up pre visit. It is so wonderful to hear a success story. I bet many of us will now be looking for Kratom. Thanks for the post, Auntie Sioux

[jimmcar]

What a great description of your process. I'm with you. I've been using Kratom for about 6 months now. I mix it with cannabis since it seems as though two medications have a better chance of working than one.

I'm keeping my fingers crossed that it keeps working. I'm growing a few trees on my farm in Costa Rica. It feels so good to be able to grow my own medicine. I also grow mucuna and in the past, in California, have grown cannabis. It's good fun and a great feeling to know that you can grow the stuff you need to be able to sleep.

[photobot]

At the moment have r.l.s. in one ieg went to bed with it in other leg.

I suffer from total renal failure and am on p.d. I also have heart failure, only 20 percent function, together with hyperthparathyroidism for which I take medication also. I am anaemic and have weekly injections of neorecormen to stimulate red cell production.

I have regular iron infusions.I have recently changed to a phosphate binder

which contains magnesium, as blood test showed low levels of this.

Gabapentin was good for a while but caused involuntary movement in arms and legs. Next I was given Zopiclone for three nights a week this put me to sleep.

Soon I was having to double the dose for any effect and had become addicted to it. Advised by my G.P.to stop taking it, I suffered weeks of withdrawal. The iron infusion and magnesium seem to have had no effect so, back to the start here I am with r.l.s. in one leg after a sleepless night

[involuntarydancer in reply to photobot]

In my experience zopiclone makes everything worse - it doesn’t help the legs and makes you even more dopey and miserable when they strike. Have you tried a dopamine agonist such as ropinerole or pramipexole - one of them is processed in liver rather than kidney - can’t remember which. At low doses they can be very effective against rls. Kratom is also great but not sure how it would interact with your other meds. Opioids are very effective against rls if you can take them - tramadol or OxyContin.

Applying cold water to legs or a magnesium rub can help. A diverting activity such as a computer game for about 20 minutes can give a couple of hours sleep (reading or tv are not usually sufficient though). Some people find a cup of coffee helps or wearing compression stockings. Make sure you are not inadvertently worsening it by taking antihistamines, Benadryl, Zantac, too much refined sugar/carbohydrates, ice cream etc.

I hope you find something that works for you. You have a lot to contend with.