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My RLS CURE

I apologize in advance for the length of this post but I want to explain my experience in detail in hopes it will help others. Disclaimer: I am not a medical professional and am of average intelligence. I am telling you what I stumbled across and I sincerely hope it helps you. I am a 42 year old male and have had RLS for around 15 years. Every night when I would get into bed and start feeling drowsy, like clockwork, my legs would start "crawling" from the inside out. The "crawl" and urge to move felt like it started deep within my legs, sometimes more in the calf and sometimes more in the thigh but every single night without miss. This sensation was accompanied by the uncontrollable urge to jerk or move my legs constantly as it was the only thing that would make the crawling sensation stop and as you all likely know it is very hard to sleep when you have to keep running in bed all night. Over the past 5 years it continued to get worse, early on I could get relief from exercise but eventually I was not able to get any relief and on a good night I could get 20 or 30 minutes of sleep an hour. I saw my Doctor and tried several prescriptions but they either didn't work very well or caused me to be extremely nauseous. I tried every OTC, folk remedy, device and Amazon 5 star reviewed miracle but was getting nowhere. I read everything I could on the subject but It seemed pretty hopeless and depressing. Those are my credentials and here is MY cure.
I began reading about the history of RLS, theories, possible causes, etc. I started mapping out life changes, habits, prescriptions, etc. I am an excellent weight, don't drink, stopped smoking years ago and have no health problems except a bit of GERD for which I have been taking Omeprazole for years. Over the years my Omeprazole dose has been increased so I began exploring that. My blood work is perfect but I read about how PPI's decrease iron and B12 absorption but my bloodwork never indicated any deficiency. I took iron as an experiment and it had no effect then I tried B12 (1,000 mcg and got a tiny bit of a change). That was some progress! I thought maybe it was a fluke so I stopped the B12 and immediately my RLS returned to terrible. I started the B12 again and got the same tiny change so I bumped it up to 2,500mcg a night and got a dramatic change. At this dose my symptoms were reduced by 50%. I tinkered with the dose and for the past 6 months I take 7,500 mcg of B12 before bed and for the past 6 months I have ZERO RLS symptoms. If I miss the B12 I immediately go back to horrible RLS. My life has changed drastically for the better. being able to sleep all night without a hint of RLS is something I never imagined would happen in my life. I still can hardly believe it and I'm just so grateful that it's hard to convey. I have read taking such a high dose of B12 can be harmful and increase the chances of various diseases and conditions and I have read it's harmless to take such a high dose and I am not qualified to tell you either way. I encourage anyone interested in trying this to do their homework and talk to their doctor. I have not told my doctor and suspect he would tell me this dose is too high and I shouldn't take so much but my quality of life is indescribably better since I completely and utterly stopped my RLS. I welcome any input from anyone smarter than I and will answer any questions. I hope this helps someone.

  1. Have you been tested for B12 ? I had bloodwork done three times before my Primary believed that I needed it. And I needed not the pills but a monthly injection so that it goes directly into blood stream and connects to the dopamine receptors in brain. I have taken this for at least 20-30 years. I am now working with my doctor to start iron infusions so it goes directly into the blood stream and to the brain. I am still on Ropinerole in the day and more in evening. I have had RLS for over 40 yrs. and it gets worse for me as time progresses. Time as in 24 hours and time as in years. `I am not able to sit for a 3 hr. meeting without my legs starting to move. I hope that this input helps you and I wish you the best in whatever you try. KayL

    1. I am glad you advocated for yourself and that your doctor finally came around to understanding you needed that B12, . I hope the iron helps even more. Deficiencies in B12, vitamin D and iron can all lead to chronic fatigue and put tons of stress on the body. It's a good idea for everyone to have the levels checked occasionally. Thanks for chiming in. Best wishes. - Lori (Team Member)

  2. Thank you for posting such a detailed description because I could relate to everything you have been going through. My bloodwork also comes out fine and I have tried everything that you have tried. I take oxycodone because it is the only thing that keeps me sane, however taking a heavy duty narcotic has all sorts of issues as you know so having something safer to try is wonderful. I joined this group in hopes that I could find something new to try so I went out tonight and have taken some B12 to see if it helps me. I will let you know how it works out. Also, I read several articles before I went out to get some B12 and it sounds promising.

    1. - I wanted to check in with you to see if you've noticed any changes since adding B12 to your treatment?


      - Jake (Team Member)

    2. I really hope the b12 helps you. Have you noticed any improvements?

      🥄🦄 Ray (Team member)

  3. Wonderful news! I am so happy to hear that you have found something that works for you and is currently giving you no RLS symptoms.

    While I'm not an expert, our body absorbs only as much as it needs, and any excess passes through our urine.

    Vitamin B12 https://www.mayoclinic.org/drugs-supplements-vitamin-b12/art-20363663


    I still highly recommend talking to your doctor about it because it can have drug interactions and a long-term high dose of Vitamin B may have some negative consequences.

    🥄🦄 Ray (Team member)

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