Hello everyone. It is a long time since l have posted although l have always kept my interest going in this knowledgeable and helpful site.
I am so depressed at present because although l take far more buprenorphine than most members on this site(1.4 mcg) l am still experiencing the tortuous feelings and having to walk about at night or mostly try to find jobs to do. Sometimes it doesn’t stop with one leg but two together are jumping. Quite often even when l am standing up my legs will jerk violently nearly causing me to fall over on one or two occasions. I now have other health issues. Painful bladder syndrome resulting in having a catheter, macular degeneration and recently a lump has been found in my lung as yet undiagnosed.
I can cope with the other health issues but the RLS just sends me overboard and into depression and weeping all the time. I cannot think what more l can do to alleviate the RLS but am hoping for some kindly and knowledgeable advice from the members on this site.l l just can’t accept the fact that l might have to live the rest of my life being tortured every night and frequently during the day .
Please help
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bedith6
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Hi Bedith, I know others on this site will have far more practical advice than I do, and I know it’s little comfort to realise you’re not alone…but I almost posted something similarly desperate this morning. It sounds as though what you are going through is absolute hell, and you are not the first person to say they can cope with much worse conditions - it’s the RLS that’s so unbearable.
Spending the night having to walk/move is utter hell, and no ‘normal’ person can really understand the torment of being awake all night and then having to get through the next day on next to no sleep. I don’t think my symptoms are as bad as you describe, but I still spend most nights awake, only getting some light sleep towards morning. I can feel my body giving up.
I’m waiting to start Buprenorphine, and in my mind I have made it into this magical cure (which I know it has been for some people), but obviously for you it still hasn’t worked.
I keep a note of anything useful on this forum, and it seems that some people need to go up to 2mg of Buprenorphine to get relief. Would your doctor allow you to increase your dose maybe?
I’m so sorry you are experiencing such a horrible combination of conditions. Hopefully Jools or Sue will have some helpful advice.
I wish that I could help, other than to send good wishes. But having been on the forum a long time I know that you'll have checked your ferritin levels recently, tried magnesium, eliminated - where you can - all prescription and OTC drug and dietary triggers, etc. I read I think that your doc wont prescribe more bup?
I hope that someone else will come along with some real help. Best wishes
Dear Bedith, this is really awful. Nit having heard from you for some time, I hoped that it meant that the buprenorphine worked well enough for you.
If you can stand your current dose and think you could stand higher doses, then going higher may be an option. When I was trying to convince my doctor (neurologist) to consider and prescribe buprenorphine, I suggested her to get in touch with Dr Buchfuhrer and gave her his email and phone. Now many EU doctor dismiss the attitude of doctors in the US, but maybe nit your doctor. Currently, I think John Winkelman is the more (traceable and) knowledgeable doctor/researcher about opioids for RLS due to his opioid registry. If I remember correctly, he has a special website for other (rls) doctors.
If you think your doctor would be willing to get opioid-for-rls expert advice, I can hunt down the info for you.
Meanwhile, old age isn’t fun. I hope you have good support.
No, most studies/references state 6mg is the max recommended dose for RLS, but I am aware of one or two forum members on a higher dose. As Buprenorphine hasn't been studied properly for RLS, it is 'early days'.
Sorry, I meant that most UK doctors won't be persuaded by the Mayo to go higher let alone towards that 6mg/day for RLS.
Bedith is currently on 1.4mg and said in a previous post or reply that she couldn't get a higher dose prescribed. I imagine (without knowledge) that most UK medics would only go higher for 'chronic' pain or 'treatment of opioid dependence (under expert supervision)'?
I'm so sorry to hear this. Like Lotte, I assumed you weren't posting because the Buprenorphine was working.I am so sorry to hear about the bladder. I recommend you buy Waterfall D mannose from Amazon. MS patients use it to stop UTIs and to settle the bladder. Catheters can further irritate the bladder, so the waterfall D mannose can help.
For the RLS, your dose is average. The maximum is 6mg.
You can increase it by 0.2mg a night until you get cover. Keep a diary and show it to your doctor. No one can manage nightly torture.
So do make an appointment to discuss fully with your GP.
Your bladder may well be linked. RLS does affect the bladder as well. I saved this research article to my RLS files recently.
Many people will say that they experience RLS if they have a full bladder or a UTI.
Show your doctor. If you can settle the bladder, the RLS may also settle.
Has your GP considered solifenacin or mirabegrin? They're used for MS bladder spasms all the time. Even pregabalin will help settle the painful bladder and therefore might help the worsened RLS.
I'm so sorry you are suffering. I would get your iron tested just to make sure your levels haven't dropped. I was really ill last year and my rls got much worse.Turns out I was aneamic despite taking a daily iron supplement. Where do you live? It might be worth asking to see a sleep specialist in your area. I'm lucky to have DrJose Thomas near me in South Wales. You could try switching to a different opioid such as morphine or methadone of upping the dose of buprenorphine doesn't work. Also you could consider emailing Dr.Buchfuhrer and showing your gp his response.It worked for me to get morphine. Good luck.Hang on in there.x
I live in Australia and have severe RLS that runs through my family. My brother chose not to live anymore due to RLS. I am currently on 15 mg Buprenorphine patch that I change weekly. I also take a half tablet of methadone at night. To counteract the efects of the Methadone I take Nortriptoline daily. It affects my daily energy level, but I slepp through the night.
Never heard of taking both buprenorphine and methadone together. Have you tried upping to the 20mcg patch and not taking methadone? Have you noticed a difference in symptoms on days 6 & 7 of the patch? Most people here say they get 5 days out of the patch before effectiveness wanes. I get 6. There is a study showing that patch effectiveness peaks on days 2-4 then starts lessening. Day 7 it's only about 60% as effective as days 2-4. Maybe you only need the methadone on days 6 & 7? And maybe a 20mcg patch would solve that?
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Desperately seeking help
What really helps?! I'm desperate for some decent sleep! 
Desperate! where can I go for private help for ILMD?
30 years sufferer with RLS desperately looking for help please 
Desperate
