Restless Legs Syndrome
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Thank you!!

Thank you for info! I will try the red Bali for my severe RLS! I researched a lot about kratom, and the green maeng da so helped with withdrawal from pain meds. I wanted to safely ween off since I had a failed laminectomy then finally a SCS implanted for congenital spinal stenosis in Nov. Try make long story short.. a new pain doc, the epidemic going on, me weening myself, not knowing I had CSS., explains why I was so very active all my life, til stage3 B.C. Being down for almost2 yrs bc of treatment (over treated) and wbc's wiped out, stenosis really set in. Now that that's all taken care of, being off meds ( exactly one month now) ..I now know how much the opiates helped w RLS but I'm refusing to go back on it for this reason. So thank u for great input, I came across this forum in between my 15-20 min of sleep last nite and will head to all natural herbal shop for the red and try to update my experience. Best to all!

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Update: darn, natural herbal shop closed on mondays. So, I started researching more, thinking more about the cause of RLS. According to the Sleep Management Institute, " the exact cause is unknown, but has a primary form, not related to other disorders, and a secondary form related to an underlying condition such as kidney failure, pregnancy, or iron deficiency anemia. It may be caused or made worse by certain medications". So, if this is the answer I would get from a specialist, I'm totally confused. I've had this all my life.. Rarely ever took so much as a tylenol, not ever any street drugs, normal cbc blood tests, doesn't run in family, perfectly healthy, energetic and happy. I never had this ailment checked out, I always figured I was so busy running, being active, this was the price to pay. Of course back then it wasn't as severe as it is now, during the day, it kinda had me going more to ease it, at night, rocked them to sleep. The only thing I didn't know til recently is I have congenital spinal stenosis. My surgeon asked " you didn't have a sit down job in your life, did you? " well..no, I didnt..there's no way, my legs wouldn't have allowed it. So, L4-5 laminectomy it was ( Jan 2017) had maybe 1 mo. of relief, another MRI in June shows L3 should have been done also, but 2 opinions said no more surgery, I was confused why not. So, wanting to be off pain meds still, knew my options left were medical marijuana, SCS. I went with SCS ( Nov 2017). Dec 20th, last day of pain med, noon next day started green kratom. I've also added magnesium citrate, and a super 750 curcumin. Seems like RLS in super high gear on and off few weeks after stopping the pain meds, past few days.. 24/7. After researching, makes sense, the opiates were helping with RLS. I also found out I may have what they call PLMD..as my fiance told me my legs go while I'm sleeping ( I didn't even know). So, with all this said, I'm really thinking for me, it seems it stemmed from spinal stenosis. I may see a neurologist if the suggested red stem kratom don't help, but I'll continue researching because of not, I'm so refusing to be back on any pill they " think" will help and possibly cause more damage..no thank you! P.s. Between all my doctors and oncologists etc. I was treated with cymbalta, lyrica and gabapentin (neurontin) with no help. Tried chiro, physical therapy( actually made it worse), and injections. After crying thru several doc visits, she told me I'm hard to diagnose bc I'm different..most people who go thru late stage breast cancer don't do things i would push myself to do.

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You are obviously a very determined person and have high expectations of yourself. You also have fairly severe rls judging by your post, in addition to a number of other severe afflictions which are clearly bravely borne. Most people would not choose to live with your rls without some prescription meds so much kudos to you. Incidentally back surgery can result in worsened rls.

I really hope the kratom works for you. I find it marvelous for my rls. The strain I use is Red Vein Borneo. I do use it in conjunction with other prescription meds. I have used it alone however and I did find it pretty effective even without other medications. You might need a slightly higher dose - I need about 4 to 5mg to completely still my legs but Raffs, who also posts on here, takes 7mg for his. Obviously you will need to experiment.

One other area which might be worth exploring is intravenous iron. This is used by the rls specialists in Johns Hopkins University Hospital and also by Dr. Buchfuhrer in Southern California. According to one webinar the Johns Hopkins guys estimate it to be helpful in 80% of cases. Obviously it is only worth trying if your serum ferritin is low (you can get this tested by your GP but you need to be sure to get the figure - not just a diagnosis of 'normal'. Normal for us is much higher. I should also say that it is possible to have too much iron which can be dangerous so you would need to be sure to get this done by someone who knew what they were doing.

Even if you don't go down the iron route, it is worth having a look at the Johns Hopkins site about rls and also Dr. Buchfuhrers site rlshelp.org. You clearly enjoy researching your topic and these sites are the best (apart from this forum obviously).

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Certainly, involuntarydancer, where you write "mg", you must mean "grams", as (powdered) kratom is measured in grams, not milligrams. I am using 8 gram doses, 2 or 3 times per day, and get 90% relief. Check my other posts/replies for a more detailed description of my kratom regimen.

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Thanks, ddm. Yes, grams. My bad!

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Can I ask, thedodahman, do you get a more or less normal night's sleep with your kratom regime? Do you have any problems with kratom causing you to be alert? Many thanks

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"More or less normal" is a pretty good description. Each kratom dose usually lasts for 3 to 4 hours of sleep. Hence 2 or 3 doses per day. As for alertness, I seldom fall asleep the first hour or so after dosing. I live in Nevada, so I'm able to avail myself of fairly high THC content Indica cannabis, which helps with falling asleep.

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Thank you - your experience sounds similar to my own.

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Thank u for response! I picked up the red Bali yesterday.. I use the "00" capsule size. I started with 1@ 145pm,215pm,245pm, then after the 315 pm cap, I rode my bike for 20 min on the most tense speed, where u really gotta push hard to pedal. It did help, by 4pm. They finally relaxed! I also picked up tart cherry juice concentrate mixed that with passion fruit juice..oh my..So yummy! So I had relief from the 4 caps til about 930pm. I then took 2 valerian root caps ( ugh I almost didn't bc of the smell when I opened bottle..literally smells like poop!!) Then 10 pm, 2 more red Bali caps to ensure hopefully a good sleep. I went to bed little after 11 pm. Jumped outta bed at almost 1am, yes it jerked me right outta bed! My fiance said " wow, you were snoring". So I took another cap, walked around house for like 5 min. felt real tired, crashed back into bed and slept til 630am when my alarm went off ( I do this To take my synthroid). Oh, you know that amazing feeling you get when you can actually sleep for more than 15-20 min twice a night..it felt good! Wasn't groggy. Felt like I could sleep more but I needed to leave at 830am to take my daughter to an appointment almost an hour away. So, at 730am, I took 2 caps, 830 I took 1 cap. This seems to be the quickest way for it to take effect and last longer. ( I did this for the green maeng da, but was cautious not to try it like this, as I heard u shouldn't do too much too soon) next dose was at 3pm. 2 caps, then 1 cap hour later. It's 530 pm, I'm content😀 PLEASE BE CAREFUL involuntarydancer.. You mentioned you use kratom along with prescription meds. Not sure which ones you take, but with all the research i did, there's not one documented or known overdose by kratom alone. The small amount who did overdose, mixed with opiates, has to do with the way it binds to your liver. I've been wanting to do more research on this, and all the different strands, just for more knowledge and understanding. But I just found its not good to mix. Maybe that will help, if it's not related or you know this already, please forgive me. If not, I'd check more into it to be safe 😀

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Thanks for your concern, Moonbaby. I'm not on opiates - I can't take them due to central sleep apnea and not being able to afford a mask - more's the pity. At present I am taking pregabalin and kratom. I am pretty sure they are not counter-indicated as a combination.

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UPDATE! Magnesium Citrate now works for me!! I couldnt be more happy to sleep all night & have NO symptoms during day..bc that's how bad it got. Realizing not every "body" is the same.. unfortunately we sometimes gotta try different things to help. I prefer to go natural. In January, when my rls started up again after my choice of deleting opiates, I tried kratom, for my back pain ( i apologize if im repeating from past post)..its absolutely amazing for that, but didnt help much after rls went full swing) so i again started taking 1 400mg capsule mag. citrate ( the minute I bought it) surprisingly the daytime rls stopped. Then I took 1 at night. Omg!! Heaven! Well.. only downfall is belly rumbles, like alot lol. It keeps me regular though, but maybe 2 a day was too much bc it caused diarrhea, and a yucky nervous like feeling in my belly. I had some vernors gingerale, & an electrolyte powder to rehydrate. It so helped. So I cut down to 1 cap in the evening and it still is keeping rls calm. B.m. is loose, but not diarrhea as it is with 2 caps a day. I don't promote or get paid for any of the things I found that works for me, but it's gold when you find something you didn't think of that really helps, and we all know how miserable it is to live with rls, something we wouldn't wish on our worst enemy, so with that, I wish the very best for all of you suffering and hope you find what works for you to gain your happy life back!!!!!!!!

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So glad the magnesium citrate is working for you Moonbaby and that you have relief from the dreaded rls. I hope it doesn’t mean you won’t be coming on here to post. I love your posts. They are so exuberant and full of life.

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Oh thank you so very much! Its been my mission since the beginning of my ordeal with pain & exhaustion after cancer to help any way I can bc I was so confused why my oncologists didn't have answers or a plan after my treatment. And when the rls came back, I came across this forum and again realized I wasn't alone. Sharing our stories & what works for us is helpful and appreciative! One more thing lol... I came across a doc on YouTube who swears by adequate potassium & vitamin b1 for rls. Back in high school I was telling my gym teacher bout my legs, he said " yeah, your lacking potassium, eat a banana.. I now know why it didn't help.. you actually need 13-14 a day for the what they say is the daily intake of potassium..um, who does that, or would think to do that unless you research it? Thank you again for the comment, even though my once very full of body is not cooperating with my full of life brain, it's warming to know I can still express it in another positive way😁

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I did read of someone who was talking about getting potassium injections but I think they carry a risk and are not recommended.

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Yes that may be true. I do believe injections are far more potent than otc supplements. Theres risk in everything we take in. I had to question my p.c. why they didnt tell me when I started blood pressure pills to not eat grapefruit. I never knew that! Just happy its a fruit I never had a taste for. That's why I always suggest researching any or everything you ingest, not to go by what everyone says that helps them. I'm not a M.D., and dont try to act like one because there are contraindications for every ones personal situation.

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