It sounds like you are at a breaking point with dealing with your diagnosis of restless leg syndrome. However, I'd like to share some information from an addiction specialist on the danger of an opioid such as heroin:
As a person who deals with chronic pain from a genetic bleeding disorder, I can relate to having days, weeks, or even longer that become unbearable. I've been pushed to the brink of feeling like I have no options to cope many times. However, according to professionals, turning to a highly addictive and dangerous banned substance may ultimately cause worse side-effects or outcomes.
@kd1958, if you are comfortable sharing, when you mention meth in the discussion title, are you shortening that for methadone by prescription? What other therapies or things have you tried? Have you discussed your level of frustration and desperation with any of your medical providers or team?
Yes methadone. I've had severe RLS for 10+ years. Been on meth for prob 7yrs and most recently w/3mg Neupro. I live 70 miles from my specialist who prescribed the meth and my local PA takes over Rx between trip. PA no longer"feels comfortable"signing Rx for meth. Symptoms now start as soon as I set down after 1pm so I walk around the house looking like a Tourette's patient. Once it starts it is had to put the genie back in the bottle. Drs here are scared to death of opioids. I am also diebtic and have not had a Dr for it for several years now. No Dr will take me because I take methadone. Not sure what that would have to do with an Edo sense they would not write that Rx but it obviously does. l have been turned down by no less then 10. Your f d if you do and f. b if you don't. Quality of life with zero sleep is worthless.....addiction is not a concern. And like I said gov doles out heroin like candy for free. I don't shoot methadone so could I put H under my toung. RLS not only health issue but most important to me.
Hi, @kd1958 - I'd like to join @JustinMcClanahan and welcome you to Mayo Clinic Connect. That is difficult you can't find a doctor to see you right now.
I'd like to introduce you to @bumble81@sundance6@wittmack@linedancer18337@tjp4 who may have some insights for you with options for the RLS. Is pain your main symptom, or do you have others, as well?
Pain is not a consideration in my choice to take methadone for RLS. The best way for me to answer all of your questions in the most direct way is this.
1. Walking around all night because your arms and legs are jumping around like frog legs in a fry pan night after night after night "isn't an option ".
2. And, if consistent availability of the only treatment that has been found to work is not obtainable (or in this case the people that control it makes it so difficult to obtain while hoping you get so discussed you will finally just go way, freeing them from all involvement).
I hope you understand my point. People are not answering my question but showing me only potential down sides.I understand y'alls concerns and appreciate the fact that I got any responses, but the answers I've received will not make it any easier to get my methadone Rx filled and with that in mind I will continue looking for an alternate option. Thank you
Pain is not a consideration in my choice to take methadone for RLS. The best way for me to answer all of your questions in the most direct way is this.
1. Walking around all night because your arms and legs are jumping around like frog legs in a fry pan night after night after night "isn't an option ".
2. And, if consistent availability of the only treatment that has been found to work is not obtainable (or in this case the people that control it makes it so difficult to obtain while hoping you get so discussed you will finally just go way, freeing them from all involvement).
I hope you understand my point. People are not answering my question but showing me only potential down sides.I understand y'alls concerns and appreciate the fact that I got any responses, but the answers I've received will not make it any easier to get my methadone Rx filled and with that in mind I will continue looking for an alternate option. Thank you
Hi, @rlsscotty - welcome to Mayo Clinic Connect. That sounds truly bad that your life is feeling horrible right now with the restless leg syndrome (RLS).
Hi, @rlsscotty – I would like to add my welcome to Connect along with @lisalucier and other members. I've no experience with RLS but am always looking for ways to help my own health conditions with treatments other than medications where possible. I did find an interesting article that may be helpful for the treatment of RLS.
Effects of a 12-week yoga versus a 12-week educational film intervention on symptoms of restless legs syndrome and related outcomes: an exploratory randomized controlled trial -- https://jcsm.aasm.org/doi/abs/10.5664/jcsm.8134
I’m glad that approach has helped you. RLS is no fun, although it’s not painful, it causes many sleepless nights. However, I cannot take iron or vitamin C because I have hereditary Hemochromatosis (HH). I have to rid my blood of excess iron by way of regular phlebotomy and I have to also control it through diet. I cannot take supplemental iron, nor eat high heme iron foods, or take Vit C becase it aids iron absorption. After my HH diagnosis, and now that my iron is lower, I rarely get RLS symptoms, so, I am confused.
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Hello @kd1958, welcome to Connect.
It sounds like you are at a breaking point with dealing with your diagnosis of restless leg syndrome. However, I'd like to share some information from an addiction specialist on the danger of an opioid such as heroin:
In a Mayo Clinic Radio health minute (https://newsnetwork.mayoclinic.org/discussion/dangers-of-heroin-mayo-clinic-radio-health-minute-2/), addiction specialist Daniel Hall-Flavin, M.D. says, "Opiates will go to the brainstem, so an overdose can rapidly kill someone by suppressing their respiration or stopping their heart. Here is additional information from Dr. Hall-Flavin on the dangers of heroin use, https://newsnetwork.mayoclinic.org/discussion/heroin-a-vicious-downward-spiral/. Dr. Hall-Flavin talks about the high rates of addiction and overdosing that can occur with heroin.
As a person who deals with chronic pain from a genetic bleeding disorder, I can relate to having days, weeks, or even longer that become unbearable. I've been pushed to the brink of feeling like I have no options to cope many times. However, according to professionals, turning to a highly addictive and dangerous banned substance may ultimately cause worse side-effects or outcomes.
Here is another discussion where many members discuss living with RLS and what they have tried to help with it as long as ways to cope, Groups > Sleep Health > Restless Leg Syndrome > https://connect.mayoclinic.org/discussion/restless-leg-syndrome-2a74e5/.
@kd1958, if you are comfortable sharing, when you mention meth in the discussion title, are you shortening that for methadone by prescription? What other therapies or things have you tried? Have you discussed your level of frustration and desperation with any of your medical providers or team?
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1 ReactionYes methadone. I've had severe RLS for 10+ years. Been on meth for prob 7yrs and most recently w/3mg Neupro. I live 70 miles from my specialist who prescribed the meth and my local PA takes over Rx between trip. PA no longer"feels comfortable"signing Rx for meth. Symptoms now start as soon as I set down after 1pm so I walk around the house looking like a Tourette's patient. Once it starts it is had to put the genie back in the bottle. Drs here are scared to death of opioids. I am also diebtic and have not had a Dr for it for several years now. No Dr will take me because I take methadone. Not sure what that would have to do with an Edo sense they would not write that Rx but it obviously does. l have been turned down by no less then 10. Your f d if you do and f. b if you don't. Quality of life with zero sleep is worthless.....addiction is not a concern. And like I said gov doles out heroin like candy for free. I don't shoot methadone so could I put H under my toung. RLS not only health issue but most important to me.
Methadone has been the only thing that has worked at all. I've had been treated using everything available before I tried methadone
Hi, @kd1958 - I'd like to join @JustinMcClanahan and welcome you to Mayo Clinic Connect. That is difficult you can't find a doctor to see you right now.
Here is some Mayo Clinic information on restless leg syndrome (RLS) that might be of interest https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/diagnosis-treatment/drc-20377174. You will note there is some information about medications in the second tab https://www.mayoclinic.org/diseases-conditions/restless-legs-syndrome/diagnosis-treatment/drc-20377174 that talks about opioids and also offers some cautions about medications for RLS.
You might also be interested in this Mayo Clinic information on methadone https://www.mayoclinic.org/drugs-supplements/methadone-oral-route/description/drg-20075806
I'd like to introduce you to @bumble81 @sundance6 @wittmack @linedancer18337 @tjp4 who may have some insights for you with options for the RLS. Is pain your main symptom, or do you have others, as well?
Pain is not a consideration in my choice to take methadone for RLS. The best way for me to answer all of your questions in the most direct way is this.
1. Walking around all night because your arms and legs are jumping around like frog legs in a fry pan night after night after night "isn't an option ".
2. And, if consistent availability of the only treatment that has been found to work is not obtainable (or in this case the people that control it makes it so difficult to obtain while hoping you get so discussed you will finally just go way, freeing them from all involvement).
I hope you understand my point. People are not answering my question but showing me only potential down sides.I understand y'alls concerns and appreciate the fact that I got any responses, but the answers I've received will not make it any easier to get my methadone Rx filled and with that in mind I will continue looking for an alternate option. Thank you
I'm in same situation with the restless leg problem life is horrible, does the methadone make it stop
Hi, @rlsscotty - welcome to Mayo Clinic Connect. That sounds truly bad that your life is feeling horrible right now with the restless leg syndrome (RLS).
I'd like to introduce you to some Connect members who have also had to deal with RLS, like @kd1958 @bill54321 @mugglemary @gigiraj @veteranspouseinpain. I'd also like you to meet @johnbishop.
How long have you had this diagnosis? Have you been on other medications in addition to the methadone?
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1 ReactionHi, @rlsscotty – I would like to add my welcome to Connect along with @lisalucier and other members. I've no experience with RLS but am always looking for ways to help my own health conditions with treatments other than medications where possible. I did find an interesting article that may be helpful for the treatment of RLS.
Effects of a 12-week yoga versus a 12-week educational film intervention on symptoms of restless legs syndrome and related outcomes: an exploratory randomized controlled trial -- https://jcsm.aasm.org/doi/abs/10.5664/jcsm.8134
Hope this helps...
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1 ReactionMy doctor at Mayo R has me taking 25 mg slow release iron and 500mg vitamin C everyday and restless legs stopped
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1 ReactionI’m glad that approach has helped you. RLS is no fun, although it’s not painful, it causes many sleepless nights. However, I cannot take iron or vitamin C because I have hereditary Hemochromatosis (HH). I have to rid my blood of excess iron by way of regular phlebotomy and I have to also control it through diet. I cannot take supplemental iron, nor eat high heme iron foods, or take Vit C becase it aids iron absorption. After my HH diagnosis, and now that my iron is lower, I rarely get RLS symptoms, so, I am confused.
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Helpful -
Hug
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