Can buprenophine help with rls

[velosolex]

So, because i am an addict the oxycodone was unsuccessful, I took all the 2 weeks pills in about 4 days then bought street morphine sulphate (susbitol) to get through the rest of the 10 days, well it didn't take long to build up an 800mg a day habit, I took one 200mg tablet over the last 19 hrs I am going to try and make it through till 10 o'clock tonight (30hrs) then start on, I think 8 mg of buprenorphine, next day 8 then try 4 mg 1/2 a tab, I am making 4 mg my target dose because of the price but am prepared to up it if necessary. Last night was the worst night I can remember i have been free of RLS because of the opiates for a long time, I used to move my ankles fo relief but last night I had to stand up walk around and force my self not to think about parts of my body or they would suddenly be the subject of concentration.

[Madlegs1]

I take it that you are in America?

You will need major help to get clean, and access to drugs that will help.

Buprenorphine ( as Suboxone) and Clonidine will be needed. Also diazepam for those tough nights in the last weeks.

I can feel your pain- I came off Fentanyl successfully- not an easy ride!

I'm now experiencing tolerance with Oxycontin. Not a pleasant outlook. Am also researching Buprenorphine and Tepantedol.

Good luck with your own journey.

Keep strong.

You will get through this.

[Jelbea in reply to Madlegs1]

Hi Madlegs I see that you are unfortunately experiencing tolerance to oxycontin. I was on oxycodone as Longtec 3 x 5 mg tablets daily and last year it stopped working. My doctor eventually allowed me to have Butec patches which are buprenorphine and are supposed to last seven days (more like 6). You will have found out in your research that buprenorphine is used to get people off other opioids. If you go down this track I hope your GP has more knowledge than mine. He knew nothing about changing and actually asked me what strength of patch he should give me. I told him that there were comparison sites on the internet and he phoned me back 15 minutes later and said he would start me on the 20 mcg patch but he wanted me to keep reducing the dose to as low as possible. He would not under any circumstances give me the short acting temgesic but would give no reason. I had an appointment recently with him and asked point blank why not and he said that the short-acting tablets would give a very up and down result - sort of mini-withdrawals. Shumba and others do not seem to have found this but that is another story.

Why I am writing to you is to warn you if you do make the changeover do not go on too a low dosage. The change from oxycodone to my first 20 mcg patch went very well - no RLS and plenty of sleep. However, I only had that for two weeks when he reduced me down to 15 mcg. This worked reasonably well but not as good and then two weeks later down to 10 mcg. At that stage things started to go horribly wrong for me. What happens if you reduce the dose too quickly or too low you will immediately get full blown withdrawals from your previous opioid. For me that meant severe anxiety, panic attacks and very very deep depression. Nobody seemed to realise this was withdrawal. At that same time I got very breathless and was eventually admitted to hospital and found to have two blood clots - one in each lung. I was very lucky as I was walking around with these clots for 3 - 4 weeks thinking the breathlessness was due to the buprenorphine. I could have died at that point.

Long story short, eventually in November/December I had a telephone app with a psychiatrist who diagnosed me with severe clinical depression and wanted to start me on two very strong drugs. He was not pleased when I refused the tablets and told me that I would never get better if I did not take them. I am glad that I refused as I did not have severe clinical depression. Apparently the physical symptoms of withdrawal from an opioid last about two weeks but the psychological impact then kicks in and that is what caused my hellish misery. I am improving now under my own steam. I found help with the DARE response which I discovered on the internet and slowly but surely I am getting my life back.

You have always supported me so I did not want you to suffer what I have been through.

This story might also help others to avoid such a disaster. I would say that done properly the changeover would have been grand. It was my doctor's ignorance which was to blame and unfortunately I do not think he has learned anything from this.

When people withdraw dopamine agonists they can develop DAWS - dopamine agonist withdrawal syndrome and when people stop opioids they can develop PAWS - post acute withdrawal syndrome which is what I have.

Sorry this is so long but is hard to explain in shorter form exactly what went wrong. I had recently posted here and at that time I thought my illness was due to the buprenorphine not agreeing with me. Eventually I worked out what was wrong. I am almost 79 and I feel that the last nine months of my life have been robbed from me. At my age I take nothing for granted and each day is precious as I await being able to hug my children and grandchildren again. I wish you all the best.

Jelbea

[LotteM in reply to Jelbea]

So sorry to read all this, Jelbea. But I applaud you for getting through on your own terms. Very, very well done. That must have required some persistence. Thanks for sharing your story, I think it os very important that people read about these things. I wish there was a way to make tem available to specialists. Maybe the annual Sleep conference should include a few stories like these.

[Madlegs1 in reply to Jelbea]

Jelbea , thank you so much for that detailed information. Very important notes and extremely appreciated.

I'm sorry you have had such a bad experience with the various incompetent professionals in your recent past. I admire your persistence in achieving a form of relief at last.

I especially understand the whole grandparent missing those very special hugs( I have three in NZ, and three more just 8 miles away- so frustrating.) I'm 74 and wondering will I even ever see the NZ ones.😭

I take on board all you have said, and am continuing the research and experimentation.

At least it looks like I'll be able to move to another opiate, and not suffer the same tolerance. But I'm hoping to be able to stretch out the oxycodone by changing timings etc.

Thanks also for your kind words- much appreciated!

Keep well, keep strong.

All things pass.🗿

[Jelbea in reply to Madlegs1]

Thank you Madlegs for your reply. Tweaking your oxycodone dosages is a good idea. I did that and it worked for quite a while. My doctor would only give me 15 mg daily and I was supposed to take 5 mg in the morning and 10 mg. in the evening. This sort of up and down dosage was impossible as I was experiencing mini-withdrawals each day. Dr. Buchfuhrer did want me to take an even dosage of 10 mg. twice daily but GP was completely against this. I took the three tablets 8 hours apart and this gave me more even coverage and worked well. I hope you get sorted.

Jelbea

[Madlegs1 in reply to Jelbea]

Exactly similar to my story at the start. I think I'll end up with four doses of oxynorm 5.

Surprisingly, I seem to be getting a bit "better", but still difficult in the very early morning. Taking paracetamol and eating a fruit snack is holding off the evil day!😏

All the best.

[LotteM]

Velosolex, the very simple answer to your question is, yes, buprenorphine can help with rls. With idiopathic rls and even so-called refractory rls that is especially severe due to (previous) augmentation to mainly dopaminergic medicines or rls unresponsive to to other pharmacological treatments including anti-epileptics (alpha2delta ligands such as gabapentin and pregabalin) and diazepines.

Your situation seems quite different though. And I cannot guide you based on my own experience or that of others on this forum. Do you have idiopathic rls? Or is your rls induced by the overuse of opioids or, more specifically, by the withdrawal from this overuse? In any way, given what you write about your situation, you need to seek te help of someone experienced in opioid withdrawal AND rls. I assume you are in the USA and therefor I suggest you get in contact with the US rls foundation rls.org. They have loads of information and they have identified 10? quality care centres for rls and may know of an experienced doctor also versed not simply in the use pf opioids for rls, but in rls in the context of opioid overuse. Please do contact them. You have reached out to is for help and the best I and I think most of us on this forum can do is direct you to people better equipped than us.

Apart from that, you are very welcome to share your story and experiences, to rant about difficulties your encounter or moan about your difficult situation. We are here to listen and reach out with words of comfort and understanding. Most of us may not know about opioid overuse, but we do know and understand about the debilitating effects of rls of many if not all aspects of life. Keep in touch!