Cutting a long story short, suffered with RLS for over 45 years and the only med that really worked for me was Ropinerole for 10 years and then Augmentation set in. Since then I have tried, Pregablin, Gabapentin, all DA's, Tramadol, Codeine and both oxys. Some of them worked somewhat but the side effects were awful, extreme tiredness during the day, nausea, often I felt really agitated with them and they all affected my tummy. I suffer from IBS which doesn't help. Maybe some of them I didn't take long enough but there are only so many side affects you can handle and try to go to work and be a normal human being. I have taken kratom for over 10 years and at the moment it works 85% of the time. It just means I can't go abroad as it's also illegal in many countries and one day I may not be able to get hold of it. Without it I don't think I would still be here.
The last med I tried was in January which was recommended by a neurologist was Sinemet, didn't realise it was a DA. I was only on it for a fortnight and my arm became so restless. It's took me over 4 week for my arm to settle down after I stopped taking it.
I have an appointment at the health centre on Tuesday and I'm guessing the doctor is not an expert in RLS. Just wondering what meds I should try to convince the doctor to prescribe me. Reading through the Mayo clinic info it seems that an Opioid could be a good option but I'm doubting they will want to prescribe one. Help!
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Jezee
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Yes you need buprenorphine. Didn't you see Dr Paul Dorman or another doctor there? Was he willing to recommend it to your GP? I also remember Dr. Uma Nath who prescribed sinemet said wouldn't rule buprenorphine out but wanted to try sinemet first.
Hi Sue, the appointment was cancelled and rescheduled to this Tuesday. The doctor is Adam Cassidy. Can't remember the doctor who prescribed the sinemet but she was Indian. She also said that she couldn't guarantee to see me again. This was at Sunderland hospital. When I see the doctor on Tuesday I will tell him what she said. Fingers crossed. Thanks for reminding me.
Checking on him, he doesn't seem to have much if any experience with RLS so I would print out the appropriate sections of the Mayo Clinic Updated Algorithm to show him.
Sue, I believe the lowest dose in the U.S. is 2mg. If taking less you must cut a strip or a tablet. At least that has been my experience. I would love to discover that I am mistaken.
My answer was wrong so I will edit it and change it. The lowest dose in the US is 2 mg. I would get a low cost jewelry scale - around $11 on amazon that measures down to .01 gram so you can start at .2 mg
Hi Sue I have a few of these scales that's how @I measure my kratom. My dosage has never changed in 10 years. So you are saying 0.02g as opposed to 0.20g. Don't think my scales do mg. 0.02g is 2mgs
.2 mg not .02g is the lowest in the US. However I just realized the scale I mentioned doesn't measure that low and the ones that do are very expensive. You can get ones that measure down to .001 g.
However what most people do is get the filmstrip and cut it down.
Hi Sue, my intentions were always to swap between Kratom and meds. The idea is to take Bup for 3-6 months and then do the same for K. I thought I would always be able to lower the dosage on one while slowly upping the dosage on another. But I think I might not be able to do this with Bup. Then again I still might try. I don't take a lot of kratom so might work. When i had my operation last year I still took K on the morning of my op and was ok. The morphine they give me was so strong that my restless legs went for 3 days. It came back and I went back on to the kratom. Kratom has got very few side effects and it helps me sleep well. But you have to keep rotating strains and vendors. Also one day I may not be able to get hold of it.
Best start with sublingual tablets in a small dose or bucvcal film (when in US). This allows for finetuning of the dose, as the tablets work quickly (20-30min) whereas the patches take some 12-18hrs to reach an effective level. Also, patches are supposed to last 7 days, but it depends on the person and the brand. Many people report a duration of 4-5 days only, and few (including me on Teva or Mylan brands) do get the full 7 days.
I switched to a patch because I experienced mini-withdrawal during the day. I still top-up with (1/4 to 1/2 to 1) sublingual tablets of 0.2mg if needed or on specific occasions.
My wife says that my trouble is when I go to see the doctor or neurologist and they ask me how I am I normally say ok. She says that I should show my true emotions. The trouble with that is if I do i might just break down and I'm not one to show this. I have many days that when I go to bed I wouldn't be bothered if I didn't wake up. That's what 47 years of Rls does to you.
Most of us went through all that you are. I can relate to everything you have tried and also breaking down at appointments and wishing the worst. If you can get them to give you an opioid (I take Suboxone in the US, which they don't mind prescribing as much) your life will totally change. Once I got on that regimen, it was like life was back to normal. The kratom life was crazy and I had to take it with me everywhere and it was also super messy. Plus, I would start to jones for it in the afternoon, get all twitchy and hand-wringing.
That whole time period of getting off the DA's and trying things and getting no help and resorting to kratom was really rough, so I do understand. You just need that one good doctor and the one big change to an opioid at this point! Follow the advice here and go only to the docs that will help you, no matter what it costs.
I can relate to this. Didn't exactly love getting my medicine from places that sell bongs and incense (this is in the US), and I was afraid of getting hooked on something that's not really regulated very well and might disappear. I'm now on sublingual buprenorphine/nalaxone strips. I take 1/3 of a 2mg strip a night, and while there are side effects, I'm adapting.
Omg-I so get what you are saying, as well. I WAS hooked on kratom and very quickly. I would be out doing whatever and then I would start wringing my hands and jonesing and jumping in the late afternoon. That entire period of going to pot shops, ordering kratom, never getting full sleep, scary issues with travel and big events, hiding it, feeling so alone-it was hell. I kept thinking I was at least using something natural but it just is not an easy solution. I have side effects on the Suboxone, too, but I rarely think about RLS during the day or evening-unlike the kratom days, where my issue was a constant worry of being without it, what to do, getting through the night. However, it still was a great temporary solution, if you are suffering, which I used to say on here often.
(Backstory: of course this was after years of using PRAM and ROP and then getting off those DA's with methadone. Then 2 different doctors cut me off the methadone with no warning. I went through withdrawal and the worst night of my life, which I almost ended. Thank god for this forum, where someone told me to try kratom-it DID save me for a chunk of time and I encourage people to use it until they get a good long term solution.)
Anyway, you don't have to read all this but just in case someone needs the info. Thank you for your note of support-it was nice to hear, even at this MUCH better stage of things for both of us!
Like you- pregabalin , gabapentin, tramadol and Oxycontin didn't work for me.I wasted 5 years on 150mg pregabalin and 25mg Oxycontin.
Professor Ray Chaudhuri refused an iron infusion saying it was too dangerous ( it isn't- his knowledge is outdated). So I persuaded my local hospital to give me an iron infusion. It made no difference sadly.
So, I researched and followed Shumbah's path and pushed for Buprenorphine.
Again, Ray Chaudhuri refused. But I kept pushing & eventually he sent an email to say he wouldn't object if my GP agreed to prescribe Buprenorphine.
It stopped all RLS the first night
You cannot take kratom with Buprenorphine. So if you get sub lingual pills, stop the kratom.
Common side effects are nausea, sweats,panic attacks, constipation and insomnia.
But each side effect can be treated and most will settle after 2 months.
For nausea- I used medical cannabis oil with 20% THC ( only available on private prescription). For panic attacks /anxiety I added 50mg pregabalin and after 2 months slowly reduced down to 12.5mg.
For insomnia and sweats you can also take pregabalin. Or the newer sleeping pills ( suvorexant).
Constipation can be resolved by diet and hydration or lactulose.
Thanks Joolsg, I forgot to add I also had iron infusion even though all my ferritin levels were very high and it didnt help. Out of interest how do you know kratom cannot be taken with Buprenorphine. I've taken it with all other meds (whilst decreasing the dosage) and it seemed to be ok. Unless the side effects were off the kratom 😒
I'm sure that Jools will respond shortly, but note the following from kratom.org:
"You should never combine buprenorphine and kratom.Even though buprenorphine is one of the safer opioids, it still carries all the inherent risks of opioid use. Taking kratom alongside buprenorphine increases these risks."
But instead of kratom helping RLS 85% of the time, buprenorphine could work 100% of the time. As Jools writes, there are side effects with buprenorphine but she was able to control these. Kratom.org give interaction with opioids their highest level of risk (alongside tricyclic antidepressants).
Kratom works on opioid receptors and Buprenorphine knocks other opioids/opioid type substances off the opioid receptors.Buprenorphine is used to help patients off high doses of other opioids and kratom.
Kratom is a strange substance. You develop tolerance quite quickly. That doesn't happen with Buprenorphine.
I find it a bit curious and frankly somewhat troubling, that so many of our fellow rls sufferers repeatedly ask the same questions over and over. By that I mean we see so many posts asking about different treatment options that have already been discussed ad nauseum, when all one has to do is to use the search feature here and they would unlock all of the posts regarding the topic they are asking about.
Dear SueJohnson, Joolsg, and many others....god bless you and your patients to repeat yourselves pretty much daily!
And thank you all for your dedication to help others. Were it not for this forum, I would not have the knowledge base that I have acquired here over the years.
I have suffered for 40 years with rls. I have been through every med and every supplement from a bar of soap to acupuncture, and yes Kratom too.
Having said that, I would like to report my progress/results on buprenorphine. I started taking Suboxone 6 months ago. I was prescribed .5mg which is 1/4 of a suboxone 2mg strip that I easily cut with some small scissors. From the very first night, and every night since....ZERO RLS. I experienced insomnia which is a common side effect. I will say, laying awake all night perfectly calm, is much preferred to laying there shaking my legs all night! I opted for some indica strain cannabis gummies (5mg) over narcotics for sleep.
They worked for me, but I would prefer not to have to take them so I decided to experiment with some smaller doses of suboxone. I began cutting the 2mg strips into smaller and smaller pieces. I am currently down to .1666 mg which is one 2mg film cut into 12 pieces. This is a tiny piece of film that you put under your tongue. I will try and post a pic.
Still, not a hint of rls. This has reduced the insomnia to a level that I don't need to take the pot gummies. Plus, taking the suboxone at 6-7 o'clock vs 9-10 o'clock has helped too.
No more gentle iron + C, magnesium, etc, etc,etc. No more watching what I eat or drink. I can have chocolate, wine, ice cream, anything I want, and still no rls! It has been a life saver! I am not suggesting you follow this protocol, this is just what I am doing.
I realize how difficult it can be to get buprenorphine prescribed, I've been there. My primary care Dr. refused to prescribe it, even after my neurologist requested him to. I finally got it prescribed by my neurologist Dr. Anita Shelgikar at the University of Michigan sleep disorders center in Ann Arbor Michigan (it's a state in the U.S.A.) 🙂.
I hope this is helpful information, and hopefully folks will use the search feature of this life saving site more often, and give Sue's fingers a rest!
This is great! And the picture looks like my kitchen counter when I'm cutting up the strips! I don't know that I could get my dose down to as low as yours, but I do plan to see if I can get away with less than I'm taking now. I ramped up to it--a fifth of a strip, then a quarter, and now a third--but those were early days, and I wonder if, now that I've been on it for a few months, I could get away with less.
Jezee, I went through 5 yrs of hell until I was hospitalized for kidney stones. I was infused with morphine and my rls went away for 5 days. I thought I was cured , but no it came back. My family doc at the time put me on a low dose slow release Morphine and I was able to get within 90 % rls free. I lost my doctor when her retired and 3 yrs later found a new family doctor who actually took an interest in the desease. He had no trouble prescribing me a low dose of ropinerole ( which hasn't augmented like it did before) along with Ms Contin and I am mostly 100% every day. History of morphine goes back 200 yrs as a treatment for rls. Might be something rhere for you. Good luck. I feel your pain and frustration.
Oh for gosh sakes! Why are you taking ropinirole when you are on Ms Contin? You say it hasn't augmented, but it will - count on it. The Ms Contin is probably hiding it. Please come off it so you don't have to ever again worry about the possibility of augmentation. Reduce by .25 mg every 2 weeks.
Hi Sue. I have tried both separately but for me the combination of the two together have been successful now for over 5 yrs. This says a lot as considering nothing worked before and I was on the verge of suicide if things had not changed. In my case this regimen saved my life.
Hi Sue. Unfortunately i am at 90mg ms contin per day which is considered maximum safe dose. I am lucky to have a doctor here in Canada who will prescribe a dose that high . I understand the concept of augmentation and dealt with it on an ongoing basis . I would augment on pramilexole, neupro patch and requip every couple weeks it didn't matter what DA I tried. This has worked now for 5 yrs with no augmentation. I do try reduce the ropinerole by .25 from time to time but the rls comes back with a vengence. I appreciate your input. Thanks
I feel your pain.. i have had RLS for over twenty years myself. It is brutal without treatment. I use Kratom every night for my RLS. I usually take it before my symptoms start. Six capsules of the Red Meng Da. If i wake up during the middle of the night I will take three more. The oxycodone works well but it messes with my mind to much. I have read that Tapentadol works..also Methadone. I think thats a huge problem in the US as far as being prescribed those two. For now I will continue using Kratom. Stuck
Jezee, We have many things in common. I have also struggled with RLS my entire adult life. I was on Requip for too many years, but before that Sinemet was tried to no avail. I took two Percocet at bedtime which worked well with the Requip. But after a horrible tapering off the Requip, the Percocet didn't work well enough. Just recently I've started a buprenorphine 10mcg patch, it's only been a few days but I think it may be the ticket for the RLS and chronic pain. I was on oxycodone 5mg, but there were too many peaks and valleys with it. I hope you have the opportunity to try the patch. Best wishes
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Fidgety Female
Augmentation? I'm guessing yes.
