I am 58, and I have had RLS for 13 years. Or I was diagnosed 13 years ago.
My story is crazy , and I'm sure some won't believe it.
About 15 years ago I started having bad panic attacks!
I would go to the ER. Several times a week.
I was treated with Xanax. It worked well for me. But then I started getting this weird feeling in my legs it woke me up and I couldn't get back to sleep! Nobody knew what it was. I believe they thought I just wanted drugs!
I remember I hadn't slept for weeks! Not more than 20 minutes at a time.
I found that if I ran a hot bath it helped. I started sleeping on the tub, waking to run more hot water. It got so bad I ended up on 22 medications I was a wreck!
Finally I was sent to a neurologist. He did slot of tests, and said . I think it's RLS. I went on requip. After trying gabapentin and who knows what else.
Requip was a miracle!
The side effects were awful diarrhea for 3 month . I fell asleep even in the middle of conversation, for about 2 years. I had to take it. The side effects were better than RLS! I took requip for 12 years. Due to identity theft I ended up homeless, my Identification was stolen, and my neurologist retired . I was unable to get in with another neurologist without ID!
I was miserable I had to go off requip cold turkey, omg the withdrawals were beyond belief, and nobody would help me! I was about to cash my life in. I couldn't do it anymore. I found out pain pills helped. So I go them on the street. I started researching everything I could find. I tried everything! I mean. Bar of soap in bed .. exercise any drug I could find.
I was desperate. I really didn't care if I got addicted.
Then I read about methadone, and how this lady took it for RLS.
I was also told heroin worked well. I saw what that did to people. I was so desperate. I was off ropinorole (requip) and never wanted to go back on it. Over the years requip had to be increased , I was at the top out for requip 12 mgs per day! It's an agnostic so over time my symptoms got worse and it was barely working by the time I went off of it! I went to the ER. No help. So I started heroin. Small amounts would work for days. I was terrified of getting hooked. I started buying Suboxone on the street. It worked so well. I went to the ER. And told the Doctor what was up. He said Suboxone is not approved for RLS. The only way to get it is if you are addicted to heroin, opioids. They did a blood test and all I had was Suboxone in my system.
I said to the Dr. Do I need to go and get heroin in my system to get Suboxone?
Because I will. I will say I have an addiction if I have to.
He said no we'll help you, but when you go to the clinic they will not give you Suboxone if you're not dependant on heroin, or pills.
I told him that I will tell them I am if that's what I need to do.
I have been on Suboxone almost a year now. I take the lowest dose they have 4/1 mg and I can actually cut that in half. I have been called out by a couple Dr.'s because of the low dose. I have explained it to them, and not one of them have tried to cut me off.
I think it's wrong that you have to pretend to be an addict, and Dr's have to help cover up because the FDA says it cannot be used for RLS. So now a diagnosed opioid, heroin addict. But I'm not addicted to heroin or pain pills... It's either go this way, or not be here, RLS if severe enough will make you mean, nasty, suicidal.
People who have not experienced a severe case of it for weeks or months, years have no business opening their mouths about it!
This is the only way for me to survive!
Written by
1Master11
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I hope your situation is generally better now, socially and economically.
Just to let you know that altnough buprenorpine (suboxone) may not be FDA approved for RLS it can be prescribed off label. Some US RLS experts supprt its use and some members of this forum have, I believe, managed to get it prescribed.
You have no idea what a strong chord of empathy your story has struck in me. Authoritarian attitudes regarding opioid use cause untold needless pain to great numbers of blameless patients every day. I am forced to travel 250 miles to see my RLS specialist because I can find no doctor in my state who will prescribe the low-dose methadone therapy that has saved my life. But so many others cannot access these medicines, no matter what they do.
Dear Master, what a story. And what a woman you are. Determined and a strickler - anything. You have found out what has been known for a long time and has over the past years resurfaced: opioids are effective for RLS.
May I share two things with you? As you have found this forum, you may well know about these already, but if not, they may help you.
Here is the very recent paper on treatment advise for RLS by scientists backup by the International RLS study group (IRLSSG); it covers the use of opioids extensively: mayoclinicproceedings.org/a...
Also, as you seem to live in the US, may I inform you about the very vocative patient organisation rls.org. They inform, support research and keep a list of quality care centres for RLS and doctors with good knowledge if RLS in general. If you can afgord it, it is worth to become a member. It may help you to read the information and get to a knowledgeable doctor. She/he may help you revise your use of subuxone and maybe find a better one (e.g. methadone or pure buprenorphine as in subutex).
I am in awe, lady. Thanks for sharing. It may help others to feel less alone and survive better.
What a horrible journey you have been on. I definitely believe every word you have shared and I think most on this site can relate to your struggles. I hope that you continue to have relief with suboxone.
My own story is very similar to yours except for the fake addiction part. Make no mistake ,I would have done the same thing as you did . I was in such a nightmare of pain and no sleep. I had severe augmentation from requip . Fortunately, I found a doctor who would prescribe opioids. A woman on this site was from the same state as me ( Michigan ) with the same story, and she recommended a doctor from the University of Mi. He put me on opioids to get me off of requip. Finally relief ! I take Suboxone 1/2 tape in the am and 1 1/2 in the pm. I'm doing pretty well but I still have some break throughs, and I live in fear that something will happen to put me back in that nightmare. I couldn't live through it again.No one I know understands what it was like or what it took to survive . Thank you for posting, it helps me feel less alone.
Thank you. I am so happy others are finding some common ground here.I know how you feel. I couldn't imagine anyone else having such a severe case as mine.
It sounds like you do.
I'm terrified that when I get older, or if something was to happen to me, and I couldn't speak or tell anyone how I'm feeling that I could be trapped inside of my own body feeling that agony and not being able to tell anyone!
I wonder how many people are out there going through that!
Maybe we need to get some other sites going for this discussion.
My tail of horror is also horrid and long I won’t go into it right now. You can read my bio if you wish.
But lucky me it’s drug clinic day here in Australia tomorrow and I get my 6month supply of Subutex When I first started it was every 7 days.
I did a video of me going to the drug clinic for a medication I should be able to get from a GP and it’s on YouTube.
It’s extremely hard to get here in Australia unless of course I have a habit.
So tomorrow I take all the good news stories I print off from people on Buprenorphine / Temgesic etc and he scan them into my medical file and he shares them. He really cares but of course he has age on him so we are preparing in case that day comes and I need more evidence.
Yes it’s so very very wrong however I am thrilled you have got your Suboxone just remember should you ever require surgery you will need to switch to Subutex for 2 weeks prior because you would feel the surgery.
Naloxone in your Suboxone blocks all pain killers even under anesthetiser. My original prescriber is a practicing anaesthetic doctor in theatre a couple of days a week in
New York
Had I never travelled from Australia several times to the USA and spent time at the john Hopkins institute and had appointments with Professor John Winkelman and the amazing Glen Books NYC and had all my letters from these doctors there would have been ZERO chance of getting Subutex in Australia.
I brought back a years supply which gave me time to fight the fight, to my knowledge I was the first in Australia to be prescribed Subutex Doctor and pharmacy got a wrap on the knuckles hence the drug clinic. Out of interest the government said Subutex causes RLS lucky I had all my letters.
Others who try to get Subutex in Australia mostly have to settle for Temgesic because it’s so hard having to go through a drug clinic.
Lucky us 😄😄
So grateful to this life saving medication
I take between 1 mg and 2mg Subutex.
Although we are blessed to be well I do believe some of us may suffer some PTSD from the torture of the disease and a medical system that does not have a clue about Willis Ekbom disease.
You might like to record your story with your phone and pop it on YouTube. It think it’s the only way to help educate the world and become faces , real people with a really nasty disease.
Well first off let me thank you!I did not realize about the surgery thing. How awful that would be.
I am so happy you are on meds to help you.
I am going to look into this Subutex. I plan on coming out on all of this somehow.
You are correct. PTSD may even be an understatement. They say RLS only affects 2% of people. I believe it's way more. I also believe loved ones, Friends, DR.'s, and employers need to be a bit more educated about what rls really does to people.
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