I am 74 and have had RLS since I had a Cervical Fusion in 1984. I took different medications until I went into augmentation from pramipexole 3 years ago. Then all hell broke loose.
For the past two years I would walk all night because I could not sit. I used my stationary bike, marched in place against a wall, lie across my guestroom bed marching in place, bind my feet real tight and did lots of crying. This would happen for 3 nights and days with ZERO "0" sleep, day or night. On the fourth night around 5 am I would fall asleep for 4 to 5 hours. Then it started all over again. I was not living, just existing. I spent a lot of time planning on how to kill myself. I did not want to exist. Just be dead, sleeping.
On top of not sleeping, I need major surgery on my back, so the walking was unbelievably painful, a walking nightmare. How long Oh God! is what I would say. Begging Him to take me. I couldn't let my husband of 52 years know what I was going through because he worried so much that it made him sick, and we didn't need two sick people. I would lie down and after he fell asleep I would leave my bedroom and want into the inferno of hell, where I did my walking, praying, and I go outside and scream. There is a park in back of my house with a bench. Early in the am I would sit on that bench and with tears in my eyes stare at my house wishing that I was normal and sleeping in my bed. Then an angel by the name of Shumbah told us on Health Unlocked about Buprenorphine.
I was seeing a pain doctor and asked him to prescribe the Buprenorphine in lieu of Oxy and he did, but with naloxone. Shumbah asked me to write to Dr Gary and he responded and said that I should take Buprenorphine by itself and take 1 mg in a.m., 1mg at noon and 2mg at night. My Doctor prescribed 8mg every 12 hours because of my pain.
Guess what, people, I have a life, sort of, I still need a rod put across my entire back, but hey, I'm sleeping. Every night I say "thank you God for sleep.
I wrote this story in the hope that I can help someone who is going through a similar situation.
May God bless every one of us who is suffering and give us favor.
Written by
Josana13
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Hi, thank you. The surgery is not scheduled, but it will happen within three months. I have an appointment with the anesthesiologist, so they are checking everything since I have COPD.
Thank you Sue. You have been by my side the whole time. I can’t understand why I am crying. I guess because the memories of your encouragement during my dark times. You have been my inspiration and I love you so very much for that. You are always in my prayers. I pray the medication continues to work for me. I could not handle going back. How are you doing, Sue?
I'm so pleased you have your life back Josana. Also discuss your RLS with the Surgery team and make sure they give you RLS safe anti nausea meds with the anaesthetic.
I didn’t think of telling them about my RLS. Thank you for that. Joolsg, you are God sent. By my side the whole time. I am still crying from responding to Sue because you both have been with me all along. I pray that God gives you relief. You are so needed in this community. How are you doing?
That's very kind Josana, but I'm just paying forward the help I received from Elisse2, Pippins, Nightwalker, Madlegs and more recently Shumbah.Buprenorphine saved my life too. Zero RLS night or day.
My story is so similar to yours. I’m also so very thankful for sleep after many years of struggling to get more than an hour or two per night. Crying and pacing and wondering how on earth can I live into my golden years with this horrible condition. I’m 70 years old. Six years ago I began a low dose of Methadone which is a similar drug to yours. My life turned around overnight. Glorious sleep was mine again and I pray that I never have to suffer like that again.. Anyway, thanks for sharing your story!.
Hello Lolly53, I am so happy for you and I pray that your Golden Years will actually be golden. Question regarding the Methadone. Does it constipate you?
hi to you dear you are certainly one strong lady i am in a similar situation being ill with so many little things the worst of course is RLS i had a visit to my docs yesterday because i am at my wits end after talking to her asking her to help she said she could give me another dopamine which i refused so she said theres not much more i can do for you so thru my tears yes i was crying i asked for buprenorphine her answer was no i wont give you that i dont prescribe that i will give you some diazipam 14.... 5mg tablets she gave me so here i am RLS .tears and all. good nite to you may your tablets continue to bring you some kind of peace xxx
I noticed that KathandKell said she was on Norspan which is the buprenorphine patch and she is from Australia. You might want to message her and perhaps you could switch to her doctor.
WOW! I knew Australia was big but not that big. Coast to coast in the US is 2,500 miles. Maybe try calling doctors near where you live and ask if they follow the Mayo Algorithm or maybe ask her doctor if s/he does telemedicine.
It makes you wonder what Doctors think they are saving you from by withholding buprenorphine. Apart from the documented evidence that it’s not generally addictive in low doses for RLS sufferers, why do they think the torture of endless sleepless nights roaming the house in pain and discomfort is preferable?
Many doctors only know what they learned in medical school and don't want to learn anything else. The RLS Foundation sent me info to give to my doctors. Awhile back I had an appointment with my Psych and she asked me if I was the one who sent her the RLS info. I told her that I sure was because I was tired of her prescribing different antidepressants that aggravate my RLS. Anyway, I can't understand why they would prescribe Diazepam, which is extremely addictive, and not Buprenorphine. ?????
Gather everything you can on Buprenorphine and send it to her (she just might be willing to learn something new) and send to other doctors you might want to see before your appointment. That way they will know about it. No doctor was willing to prescribe Diazepam to me because it is so addictive, go figure. Thank you for your response. Please, please be patient and go to another doctor for help. Shambah on this community might be able to help you with info to send to doctors. Good Luck and you are definitely in my prayers. Please keep us informed.
Buprenorphine is very misunderstood and gets a bad rap. As a partial agonist it has a lower rate of addiction, respiratory depressoonÿ and less constipation. Do some research on it and have another conversation. Eith you rzzxgt
just read all this from Josana and others with so much empathy. What a disease we all have. My doctor too is reluctant to give me Buprenorphine. I would risk any kind of addiction rather than have this day and night.
Still, hope and persistence springs eternal, Thank heavens for this site and good luck to all. X
Hello Bowie4eva, Many doctors don't know anything and they don't want to learn anything more than they did in medical school. The RLS Foundation sent me info to give to my doctors. Awhile back I had an appointment with my Psych and she asked me if I was the one who sent her the RLS info. I told her that I sure was because I was tired of her prescribing different antidepressants that aggravate my RLS. Gather all the info you can and send to your doctor. If you are planning to change doctors, send the info ahead of time so that they will learn something new, hopefully. Shumbah from this site is the person to contact regarding info on Buprenorphine. Good luck to you Bowie4eva and please keep us informed.
Yes, but very few GPs are aware of low dose opioids for RLS and Buprenorphine is red listed in many areas, meaning only a specialist can prescribe it and monitor use.There are many of us in different parts of the UK doing brilliantly on it.
I got mine in S. London from my GP after sending her the Mayo algorithm and the Massachussetts Opioid Study. I have been on 0.4mg since June 2021. Zero RLS, night or day and sleeping 8 hour's every night for the first time in decades.
so sorry for you i feel the same i cannot understand why it comes every night around 630..730 why ????? it is night where i live another one of horror i did take sifrol last nite and RLs only lasted about 1 1/2 hours then i went to bed around 1.45am i only doze sat up until daylight then i sleep a while get up at 8.30 am i truly dread the nights
Was it because of your RLS that you did not sleep? If it was, that is a nightmare to be tired and then more tired with the sleeping pill. Please be patient because help is on the way. Start sending info on Buprenorphine to your medical team and doctors you plan on seeing. Shambah might be able to help you with that.
hello I’m reading all these posts and feeling quite desperate.
I am taking 0.8 mg buprenorphine snd 150 mg pregabalin and it really isn’t working for me. I’m back to walking about all night with violently kicking legs - getting maybe an hour’s sleep here and there. I then try and sleep in in the morning but feel quite panicky which I think is a come down from the buprenorphine - plus I am feeling panicky about my situation!
I don’t think my gp will let me increase the dose and I’m reluctant to so anyway since I feel I have quite strong withdrawal symptoms from the buprenorphine when I have changed the dose / am due for my next dose.
I am really feeling desperate at times and find myself thinking that maybe I need an exit plan because I can’t cope with this much longer. I have worked extremely hard to access the buprenorphine and so I am quite devastated that it really doesn’t work for me
…… I’m asking the question what is there for someone like me when buprenorphine has failed?
I have an appointment with Professor Walker in November and his last recommendation for if the buprenorphine was not effective was to go back on the rigitone patch …. Which I obviously don’t want yo do.
Any advise or comments would be appreciated… I feel at a dead end and don’t know what to do next. I feel that if the emerging treatment model is leading rls sufferers with severe symptoms towards buprenorphine then where does that leave someone like me if the buprenorphine doesn’t work?
That is an even more difficult situation than before. Some people, eg Shumbah, need (far) higher doses than 1 mg to get the RLS under control. Am I right that on your current dose of 0.8mg you are already from side effects, mainly anxiety? If so, you will indeed face a difficult discussion with Prof Walker. The only thing I can think of, is that he will let you try other opioids, methadone and hydrocodone come to mind. That may -again- be an uphill battle and you have to get your arguments clearly laid out and find a way to be persuasive.
I am assuming you have ticked off all the other approaches/treatments, most of all the iron route. I sincerely hope you get things sorted.
Thank you for replying to me Lotte- I should probably have put that as a separate post - im obviously not thinking clearly.
I had my bloods done when I saw Professor Walker at the end of June but I didn’t hear anything back… I suspect it will be discussed in November as the appointment is on the NHS. My last test before that was 73 ferritin - but nobody would give me an infusion. I will argue that I need to get my ferritin to 200 and see if I can access one…
I’ve basically got to find some way of coping / functioning up until the November appointment. I’m wondering whether it’s worth arguing for an increase in buprenorohine to 1mg just to see what difference that makes before trying to come off it abd move to something else.
I hear you. When you haven't found the right treatment yet, it is a tedious and long process, as ine should give each step time to dis/prove itself. It took me and my doctor 6 years...
My bloods at their lowest were 12 and I wasn't offered an Infusion, they are now 34 , still no Infusion, I got send a handout to fill in to monitor my symptoms.....dreadful , no help.out there
According to the Mayo Clinic Updated Algorithm on RLS the usual effective dose of buprenorphine is .5 mg to 6.0 mg. You might want to print out the appropriate section to show to him. And yes possibly try other opioids.
Another one to try is dipyridamole. You might want to discuss this with your doctor. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib...sciencedirect.com/science/a...movementdisorders.onlinelib...
Thanks Sue - I persuaded my Dr to give me dipyridamole when I was put on blood thinners as an alternative and I had the most horrendous reaction - like an extreme migraine and sickness which went as soon as the drug was out if my system - so that’s another one out if the running - thsnk you for your info though - I do think I may need more ….
hi hon, I thought that the medication wasn’t going to work for me because I was started out at a low dose but within a couple months thank God the specialist I see was willing to increase it. He calls me a hard nut to crack because of the way my body resists most medication‘s, but thank the Lord that he was willing to go up to the highest milligram he said for me which was 8 mg And at that point it worked. I have been free from this condition every night for a little over two years and I want to say a couple months ago I thought well why don’t I just cut my tablet in half and see what happens, well I have now found out that 4 mg of night does just fine so there is hope to maybe going lower but sometimes we need an extra punch for our systems to work, but I also didn’t have any side effects from this medication so I know that that could be a problem. I have you in my prayers.Many of us have seen the Darkside and that is a scary place to be , please try to see if possibly a little more would make the difference. I just really want you to get relief I want all of us know what sleeping feels like again my prayers. .
hello Ticki - is that a full 8 mg a day?? That sounds like loads! How do you take it ? In stages or altogether?
I suspect you are not in the UK since I don’t think they prescribe that much - where are you? And thank you for you prayers - and concern, it does help to know others understand - x
I was taking one tablet at 8 mg a night until just a couple months ago when I decided to cut that in half and see what would happen and it was fine. I am doing 4 mg which makes my tablets last twice as long so that’s an extra plus. I am in Washington state, but I fly to California twice a year to see Dr. Buchfuhrer, he is one of six top specialists that truly understand and know what they’re doing unfortunately for most of us it’s quite a distance to see any of these guys but when you put your life on the line once again, it’s well worth it.❤️🩹
Oh wow - yes he is the top person I would think - unfortunately I can’t fly at all - I travelled for three hours this year to my own daughters wedding and it was a living hell. I’ve thought about travelling to the US via a cruise and accessing one of the specialists via zoom if I could not get into the right state….
Just to clarify is it pure buprenorphine that you are taking or is it subutex ? And are you male or female since I would think men can take higher doses … although it obviously seems to be very individual - anyway I am very pleased that you have found some peace …long nay it continue
oh my gosh, I am so sorry you can’t fly. I wasn’t able to either for the longest time back then I was taking a medication called requip so at least I was able to endure most flights,but that’s one that I augmented on after using for about 10 years. I am a 63-year-old female. This condition is hereditary almost my entire family and back family have had this condition, not as serious as mine. I do seem to top that list. I take the one full tablet and nothing added . I just know you’ll get an answer. I just know you’re not going to give up and that somethings going to change because it Hass to as I said my prayers are with you.🙏
I'm so sorry to hear this. When last I replied to you, you had just switched to Accord from Morningside and were suffering nausea.Now 0.8mg of Accord isn't working and is causing anxiety. Did Morningside cause anxiety?
Can you go back to that if it covered your symptoms?
0.8mg is still below the average dose set out in the Mayo algorithm.
That’s an interesting question Jools which I hadn’t thought of …. Definitely the side effects full stop seemed worse when I changed to accord - I also feel a lot more depressed now especially in the morning … I can’t remember that happening on the morningside …
I seem to remember Professor Walker saying to me when he prescribed the buprenorohine it can cause a mini withdrawal / feelings of being low or depressed in the morning - I didn’t take much notice because with everything that’s happened to me I have not been depressed - but I now find myself being really depressed and - dare I say it - quite suicidal - particularly in the morning.
Not depression. But severe anxiety and panic attacks. The pregabalin stopped it all. Suicidal ideation is a known side effect of pregabalin. Have you always been on pregabalin, or did you start more recently?
Maybe if you go back to the Morningside brand, it might settle.
Well spotted by Joolsg that it may be the brand. Most of the time I get Teva (bup patches) that work well. Early this year I was given astock of Sandoz. It took me months to realise that the different brand may be the cause of my dizziness and the observation that each week the patch seemed to lose its effectiveness after 4-5 d instead of 7d. Switched back to Teva and everything back to normal. Only suddenly I have to pay for this brand 🧐. Different insurance system here in The Netherlands.
Now it gets me wondering whether on yet another brand I will not have fatigue and brain fog. Trial and error and time....
If you are not taking Buprenorphine and the Pregabalin four hours apart. That will cause anxiety and other side affects. I take Buprenorphine four hours apart from all of my medications. Please keep in touch and let me know how it goes. I think you need a stronger dose of Buprenorphine. . Godspeed
Thank you. I cancelled my surgery twice because I was really scared to go through it. I had two knee replacements at the same time, cervical fusion and the first part of my surgery which involved 5 vertebras in my lumbar spine. No fear. Now that the surgeon wants to put a rod across my entire spine, I was scared until I got more pain and breathing problems. I am not at all scared anymore because anything would be better than what I am currently going through. At least there is hope after the surgery. But I do count my blessings, I CAN SLEEP, HORRAY.
Hi so so glad u found d Bupromorphine. I to found it through Shumba . RLS is a living nightmare ,torture and people don't understand what it does to u mentally ,physically amd emotionally . I just worry if some day they can't get hold of the tablets or they stop working cos we all know it's still there in the background but the Bupromorphine is amazing . So pleased for you xx
I am glad I am 75 and close to the end of this nightmare called life. You know people pray and are grateful for another day of life. I know that God gave us life and we are supposed to be grateful and enjoy it, but how can we? I don't think there is any disease worse than RLS because at least they can sleep. You are right about RLS lurking in the background, like the devil. I am just taking it one day at a time, not knowing what the next day brings.
Hello nanpat - what side effects are you having on the patch? I’m wondering wether to go back to the patch from the tablets but can’t remember what side effects I had! Apart from the fact it didn’t last seven days - more like three days in thd middle!
I started on targin yrs ago for a back problem, no rls for 3 mths. It started creeping back so dose was increased but it stopped working.
Been on patch now 11mths with no rls for first 4 mths, thought it had gone forever but is starting up again but with less frequency and much less severe. I randomly fall asleep in evenings watching tv and then can’t sleep later which is a problem. Worse though, bowel pain, cramps and very erratic with constipation etc. this is now ruling my life. If not for these issues I’d stay on it.
Switched to tablets but dr had no idea of dosage so I had withdrawals in day. All said patch lasts me 7 days and I like the ease, just apply weekly.
So I’m now going back to targin again with fingers crossed
Hope this answers some concerns, only my case, may be different for you, good luck
Oh good luck nanpat - I am just wondering what dosage patch you were on and what dosage tablets you moved to? I’m thinking about doing the reverse - going back into the patch from 0.8 tablets but am terrified if all the withdrawals that always seem to happen with any changes!
I hope the targin works again fir you especially since it did work for quite a while before x
I was on 10mg patch and switched to only 400 mcg at night so withdrawal was in day when I had no cover. You shouldn’t have this problem as patch is coverage 24 hrs. Did you only take tablets at night? If so we’re you fine in the day?
Hello nanpat - I too moved from 10mcg patch to 0.4 mg tablet and was initially comatose in the day - which I later wondered could have been because the patch was still in my system- but this lifted pretty soon and now 0.8 mg tablet plus pregabalin is barely touching my restless legs at all….
The only possible withdrawal I’ve had is feeling panicky and sometimes depressed in the morning. …
It would seem we are all different! Which is why it’s so difficult to find the best balance x
I looked up the conversion and it is 1000mcg to 1mg. Yes, I think it is affecting my bowels, but I am in the process of seeing if other medications that I am taking might be attributing to that. What side affects are you having on the patch?
Hello Nanpat - I looked up the conversion and it is 1000 mcg to 1mg. Yes I am constipated. What side affects are you having? I went to the ER 3 times with Respiratory Depression. Do you think the idiots associated what was happening with my medications, of course not. I went into panic mode because I felt like I was drowning. The ER gave me Clonozapam which calmed me down. Anyway, I went to the drugs.com site and entered all of my medications and figured out why I couldn't breath. Now I take my medication at different times and am doing fine. Buprenorphine has to be taken by itself four hours apart from other meds that cause RD. Godspeed
After reading these comments on this thread my heart goes out to you all.
Oh wow! At the moment I take thrm an hour a part and thankfully I haven’t died yet ?!? However I am on quite low doses of both - I had noticed it sometimes affecting my breathing which is exactly why I haven’t increased anything…. Thanks fir the heads up - I def won’t increase anythjng without medical clearance xx
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