My husband now 79 is a the edge of not wanting to live anymore. His RLS is 30 years plus old, for years just after falling asleep for about 30 minutes and a slight twinge every minute that did not wake him. I use to count between the twitches which always found my leg like it was seeking something so kept me awake. Anyway no its all over his body and he feels like he is being electrocuted. Been through the gamut and I mean the wringer and all medications, food eliminations, chemicals, brain scans you name it. Finally got on Methadone and it worked now for years. He is obviously now dependent on it but at 79 so what? The problem is with this Opiate craziness going on doctors will not up his dose of only 30 mgs now for 12 years and he is going through hell.
I am afraid he is going to check himself out although he will not say that I know him well. Please advise anything he can take with the Methadone a doctor would presecribe. We are in hell both of us but he is living it. Thank You
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TinkandBobby
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I am so sorry to read your story. I don’t want to read it, because it may be like a view into my own future.
The thing with opiates and many other medicines is tolerance, current doses after a while no longer suffice and a higher dose is needed. That is, if your husband’s medical doctor agrees it is tolerance. Or, and this is what I suggest you should discuss with you husband and his MD, a change to a different medicine from the same group of medicines, i.e. another opioid. All opioids act slightly differently on sometimes different receptors. Thus, if you are tolerant to one, you may still be very sensitive to another. To get an overview of possible alternative do bring this paper from the IRLSSG on opioids for RLS to your husband’s doctor: ncbi.nlm.nih.gov/m/pubmed/2...
I hope the three of you can get your husband’s symptoms under control again. Good luck.
There are several other option open so don't despair. If he's getting methadone and the opiate panic you are in the States so if you can source it safely cannabis can be a fantastic boon. A couple of puffs and peace - many on here have tried it and benefit from it when we can get it.
DIET, DIET, DIET and a thousand times diet. I have recently changed to a very plain gluten and dairy free diet. No processed foods other than a little mayo and my RLS which was an all over thing that had admittedly been reasonably well controlled with prescription opiates and cannabis but never leaving me in proper comfort has now gone quiet and I have stopped using cannabis. It can be a difficult diet but no where as difficult as living with RLS.
Look into supplementing Iron possibly, many use gentle Iron with good results.
Feet in bowls of cold water, hot showers, hot baths, and my personal favourite - hot women are all excellent at easing things if only temporarily.
look into any drugs that could be exacerbating things, antidepressants and antihistamines are notorious for making things worse.
There is more information on here than you can shake a handful of neurologists at and I can easily promise there is relief to be found in that information, don't loose heart.
you MUST speak with the doctor. Don't just nod and agree. Make him/her listen!
Also, I agree with Raffs about cannabis. My 88 yr old dad talked me into trying it after it helped him with pain. I hope it is available to you. Good luck to both of you, because you suffer as well.......
You clearly have your husband's back and are worried for him.
Raffs, lotte & jimmylegs have given you great advice. Don't despair, try the cannabis and going back to the doctor.
Also send an email to the wonderful Dr Mark Buchfuhrer and see if he can give you the names of friendly doctors in your part of the USA ( I presume you are in the USA because methadone is not prescribed here in the UK).
He can be contacted at
somno@verizon.net
Explain your situation and he will respond usually within hours.
Also, look into serum ferritin levels. A simple blood test will show this and ask for the actual number which needs to be above 100 for those with RLS.
I really hope your husband finds a helpful doctor. We will all be thinking of you both.
Dr Buchfuhrer has quite a list of specific instructions you have to follow when writing him. I.e., you must spell out Doctor, no slang or abbreviated words. He will not respond if you fail to follow them. I think there is a list on the main RLS site but I’m not positive. It has to be scary for you to feel this way. Healing hugs to both of you❣️😴😴😴
Although be VERY careful with which antidepressant you get as many cause RLS to get much worse.
Personally speaking get the RLS under control and there are no need for antidepressants - their efficacy has been hugely overstated by drug companies who ran the initial trials.
In addition to all of the excellent suggestions made by others, you may want to consider kratom. It has worked wonders for many suffering from RLS, myself included.
Get in touch with Doctor Buchfuhrer, urgently, phone him if necessary, and if you are in the USA try to get to him, no matter what it costs.
Doctor B is an expert on RLS, PLMS and methadone, and if anyone can help he will. He will know where else to go with regard to drugs - 30mg is pretty much the upper limit for methadone. It might be that he needs one or more other drugs, carefully considered - and Dr B will know.
Take your husband's feelings of utter hopelessness seriously. Suicide is real among us, but there is always a solution - Doctor Buchfuhrer says so, and I believe him.
Have you tried Johns Hopkins? Dr Allen is on the cutting edge of new research there also 100% agree about Dr B. He is so generous with his time and amazing. I’m so sorry. I wish I could do more. I will pray for your husband and if I ca think of anything else I will write you.
Like others, I have no further advice to give you as I haven't reached that awful stage - yet - and it is the fear of all of us that we will. But, like others, I offer my sympathy and prayers and urge you to contact Dr B. I sent him an email and got an email reply within 48 hours which was very helpful. But do take the advice on his website as to how to write it - there is a direct link to use - a little yellow box on the bottom of the left-hand column on rlshelp.org
Hi I have had RLS 40 years I tried Dihydrocodeine by chance my mother in law had for her severe back pain and I can honestly say the Dihydrocodeine doesn’t work at all for pain on me but with 2 maybe 3 sometimes the Dihydrocodeine completely stops within an hour! No RLS at all, in 20 years of taking them I have never needed to up the dosage of 2 three times a day 2 before bed I can sleep all night! Maybe he would find peace in those just a thought I have had great success without anything else other than them tabs because nothing else had worked and I suffer with RLS in my arms my back and my legs! Nothing wrong with asking your GP it could give him the peace he needs i wouldn’t be here today if I hadn’t have tried these because even 1 minute with RLS is enough to push a sain person over the edge! X
Has your husband tried magnesium sulphate. It must be sulphate. I also soak my feet in Epsom salts which contain magnesium for half an hour each day. If I miss more than a day with either,the legs get going. I Was offered medication by my then g p many years ago but was concerned about the confusion with other necessary medication so I consulted a specialist medical herbalist who had helped me with other conditions over many years. She had spent some years in China studying so combined her knowledge from many areas. She helps me with RLS and has suggested acupuncture. That has helped with other conditions and I would gladly give it a go but unfortunately I now get needle shock with the treatment. Not easy is it? I will be 78 soon so other age related conditions getting into the mix. I Am so grateful for my wonderfully supportive husband as your husband must be for your support. Look after yourself too.
Sorry to hear. The advice from the others replying here is very solid.
What other medications or supplements is your husband taking now, along with the methadone? Is it possible he's also taking a dopamine agonist like pramipexole (Mirapex) or ropinerole (Requip) or rotigotine (Neupro patch)? Please do tell us what he is taking, and tell us the dosages per day. We may be able to help more once we know that.
Please take him to Mayo Clinic in Rochester, MN or to Johns Hopkins University Medical Center in Maryland. He will probably be able to find good care (and the medication dosages he needs) there. I believe the physician at Mayo is Dr. Michael Silber, and the one at Johns Hopkins is Dr. Christopher Early. Best wishes to you and your husband.
I was diagnosed with RLS when I was 20. And I've had the extreme version of it which was also in my arms and neck. I'm now 40 and do not suffer from it any more because of a tablet called subutex which is used for heroin withdrawal in addicts. I started taking them 3 years ago and am currently taking 16mg per day. Within 35 minutes of taking it for the first time the RLS completely disappeared. I stopped taking them after 18 months and within 48hrs of stopping them the RLS returned with vengence, so 2 days later i started taking them again and again within 35 mins it completely stopped again and I'm still taking them today. I honestly believe the subutex saved my life.
Hi - I am feeling for you. It really does drive you to despair sometimes. I am 71 now and wonder what the future holds for me, although I know my suffering is by some accounts quite mild. My medication - I control by timing, but obviously sometimes it doesn`t work. I take baclofen for cramps and spasms and start at lunchtime with one, then after dinner, then bed-time. Ripinirole - I refuse to up! - I take 1.50mg daily, just before dinner if I can go tht long. If I don`t take before dinner it takes longer to work. Codeine, 30mg x 3 per day. Also maybe during the night with paracetamol. Clopidogrel, and Lansoprazole for other conditions. Vit. B complex and Lutein for my AMD. I have a car journey coming up soon, to see my family and I am not looking forward to it. What a difference a year can make - my symptoms have been horrendous this year. Trying to occupy yourself to stave off the onset of rls is sometime tiring ( lack of sleep). To just relax with a good book would be heaven. UK treatments look set to be dragging on forever. Hopefully sometime in the future it will be taken seriously, and treated with sympathy.
I would not wish this on anyone but somewhere there must be a doctor, researcher, clinician who has this and can make a difference to the acceptance of this real illness - please!
Keep posting on here and remember we KNOW you are suffering.
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