Anyone who is taking Buprenorphine in any shape of form please can you send me your success story via Private Message (PM).
The Australian RLS Facebook group does not like me being healthy and well. They have allowed a patients doctor to become part of the FB group and they are obviously anti buprenorphine and have in fact contacted my prescribing doctor and scared him.
Also if anyone else have used other opioids
and had compilations.
The last email I received this evening from one of the Facebook administrators ended by saying
“I would not worry if I were you there are plenty of other opioids that work well for Refractory RLS. “
As you can imagine there is so much I could say.
If you can help me I would truly appreciate it.
Written by
Shumbah
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You would think being a site just for FB page just RLS it would be safe.
A lot of people have been helped and now have there lives back that is the only consolation.
All we do is share and it was people sharing on here that got me on the path to the USA.
I am really not sure how to word it , I would have felt so selfish if I had not shared with other sufferers. My husband did not want me to to share with anyone but as I said to him
I would not be here today if people did not share there experiences with me.
I can’t imagine myself contacting someone else doctor as she did mine.
I’m also surprised he discussed my case with her that to is random.
Anyway no good whinging I have no regrets as there are others who are now well. I will pray the universe will continue to bless me.
I avoid Facebook groups completely. I’ve noticed that they have very stringent rules like not mentioning Opioids or Kratom or cannabis. I received so much abuse when I mentioned Oxycontin or that you shouldn’t rely on what your doctors say ( we know they know very little but others still have complete faith in everything they say).
I’m happy to stick to this site and just hope others find it.
You are so right. I left all the FB RLS groups as there was so much bickering going on especially when it comes to the soap under the sheets thing. I could not be part of a group that endorses such nonsense. This Healthunlocked site has so many knowledgeable people with such good information so I figure this is the only group I need to be a part of.
I am the admin on the FB group Shumbah is referring to and I'd like to clarify that I did not talk to her doctor about her treatment. My understanding is that Shumbah sent me the doctor's name to put on our List of RLS professionals which we constantly add doctors' names to in order to help members access good doctors. I emailed him to clarify his address, as it wasn't clear where he practiced, and I frequently do this anyway as some doctors don't like to be on our list as they don't want a line-up of RLS patients seeking opioids. He phoned me almost straight away.
The member's name was never uttered by either of us. He simply phoned and told me he knew who had given me his name and not to put him on our list as a source of Subutex in Australia for RLS patients as it is only authorised for the use of opioid use disorder. I do not, and never will talk to doctors about the treatment of members in our group and he has not breached any sort of confidentiality. As it turns out I already had received a copy of the letter from that doctor from Shumbah to her pharmacy outlining her treatment so there was nothing new to learn from him anyway. He simply explained the TGA regulations around subutex to me, which I was unaware of, and said he didn't want a whole lot of RLS patients turning up asking for subutex.
We have to have rules on Facebook because we are legally liable for what happens in the group. To be honest, on days like this, I don't know why I put so much of my time into it.
I typically spend about 3 hours a day working on this Facebook group helping people with RLS and I have RLS myself and am often tired. I also work, and am tidying up a thesis. I suspect a lot of this is a misunderstanding due to some patchy communication between the two of us recently.
I can assure you that we are not anti-buprenorphine. In fact I put an article in our files recently about how underutilised buprenorphine was as a treatment for chronic pain.
So I just noticed something I never paid attention to before, but this site's administrator can edit our posts as she apparently did Shumbah's above. What?!?
Shumbah's posting was edited to delete her email address for her own security.
When posting you should not disclose personal information such as your full name, email address, home address, telephone number, or any other information which could directly or indirectly identify you.
The problem with that is that the email was already in the header or original notice email, which we all would have received.HU needs to establish an algorithm to prevent that happening.
I know they warn us before posting, about personal info, but many people would not appreciate the nuance.
Perhaps they should talk to Google or Facebook, to find ways of handling sensitive information. They could then sell it on😝🥴? Or perhaps not!😏
Shumbah, that is sad. For your own well-being, consider to get off facebook and have to email etc completely removed. It is extremely difficult to fight such framing, and as Joolsg mentioned, facebooks rules are probably less than helpful in that respect.
Another thing that struck me: did someone contact your doctor and dis they discuss your 'case'? If so, your doctor has broken the confidentiality rules. And that would require action from you as it is against the law. But maybe I misunderstood.
Meanwhile, I hope you continue to be well. Rise above and remain strong. --Lotte, partner in 'crime' RLS&bup
Hi Shumbah, I too am a fellow person who has been prescribed buprenorphine (Temgesic in my case). If my interpretation is correct, then it's outrageous that a complete stranger has tried to influence/interfere with your treatment of RLS with no approval from yourself. I would question your prescribing doctor as to what was discussed with them. I think that Lotte may have a point about breach of confidentiality. I will message you privately regarding my experience with Temgesic.
I cannot add but say good luck! I shall be watching any follow ups to your post with great interest as the pain management consultant at the hospital has just written to my GO to put me on buprenorphine patches from next week. In someways I’m excited but also worried they won’t mask the pain as my current regime does or did until I have become so used to it over the past 12 years or so.
The Australian NZ Facebook page does not like anything that is not orthodox. I have left.You are unable to discuss, debate or question. A useless site.
You (I assume it's you, I recognise the profile picture) were removed only because I asked you to acknowledge the rules and tagged you in them. You ignored that and I asked you again to acknowledge them before commenting again and then you commented again without acknowledging them, which indicates contempt for the people who work hard to keep the group safe, and here you are saying you left because the group was useless. The rules are there to protect all members. You were in the group for less than two weeks (joined on 18 January, removed on 31 January), a rather short time to conclude that it is useless.
The group is not useless. It helped me so much that when the last admin had to leave when her husband was diagnosed with cancer, I agreed to take on the role, even though I really didn't have time, as the information available in the files (literature by RLS experts) saved me from taking a dopamine agonist, prescribed by a stupid doctor, at a dose which clearly carries a high risk of augmentation.
Honestly, for you to come in here and bag this group after being in it for such a short time, and being kicked out, and saying that you left is a bit rich. If I sound fed up, I really am. Hearing these disgruntled people spreading misleading information about a group that seven admins and moderators dedicate their time to, for no other reason than to pay it forward is making my blood boil right now.
Our group contains a huge selection of up-to-date literature on the treatment of RLS, home remedies, tips, lists of good doctors etc and we've invited our members to join a webinar by medical cannabis researchers to learn about that in about a week. We do this work often at the expense of our own health and spending adequate time with our families. We are hardly against anything that is not orthodox. Tonight everyone's talking about sage tea. Probably doesn't work but some people feel it helps so we are happy to leave the discussion here.
We've had to remove 3 members this week after not having to remove anyone in around a year. I'm not sure what's in the air but we've had an influx of people who think they can come in and say anything they like (I think your thing was SIBO? Like it was proven, but it's not clear at all if treating it helps at this stage) without being corrected on the state of the evidence. Is that what you mean by not being allowed to debate? You're questioned when you throw a link in as if it's settled science? And get upset when that is challenged? We are quite clear that our group is evidence-based and if you don't know that, it's because you never bothered to read the rules.
Yes it is me and I politely answered a person who was querying a connection between bacteria and RLS. I said it is possible and put up a link to a good health site that explained the possibility. (It never claimed it was a certainty) I then got a message from the admin to sign into the rules and regulations and a link to a site which neither endorsed or dismissed the link between SIBO and RLS. So I went to the site and wrote back that yes the admin was right it is only an opinion worth looking at. I then went looking where I could sign into those rules and regulations. I could not see them on the FB site and before I could ask the question I was thrown off. I have spoken about medical cannabis on the site. It seems those things a forbidden and I was upset at the nasty way I was thrown off without warning within 15 minutes of my post. Blackcat you say I have been under watch when all I have done is posted about my experience with medical cannabis. Surely discussing SIBO and media cannabis cannot be a reason to throw someone off a site. I have been polite and factual and truthful. I do not believe any site that censors reasonable information which can help others is worth belonging to if you don't want to just be informed about medical drugs.
We have nothing against medical cannabis. As I have already mentioned, we have invited our members to join a Zoom info-session on research and access to medical cannabis next week. Also, as I said in response to your private message to me, you were being watched because you were giving people medical advice. Our rules clearly state that you must only talk about your own experience or in general terms what is in the peer reviewed literature on RLS. This is because we are legally liable for what is said in the group.
You were not removed for talking about SIBO. I simply came in and mentioned that this research was still a bit fringy. I have no problem with your raising it. I've raised it myself in the past and we've now realised it's lacking evidence. But you seem to be accusing us of refusing to talk about anything that is not "orthodox" because this was pointed out.
You were removed because I asked you twice to acknowledge the rules, first tagging you in them and on the second occasion I asked you not to comment again until you had acknowledged the rules. You then commented again, without mentioning that you were having trouble finding the rules but just going straight back into the conversation on SIBO. What are we to conclude from this other than that you don't intend to follow the rules of the group?
What you are saying about our group is just incorrect as you weren't in the group long enough to see how much we talk about lifestyle changes and other non-drug responses to RLS. Unfortunately, our focus tends to be on people who are augmenting dreadfully on dopamine agonists or barely surviving on alpha-2-delta ligands, or people who have tried all the other things and require medications. This is because they are suffering the most. Of course they get the most attention and of course we need to talk about drugs a lot. Those of us in the admin team all have RLS, are all tired and do this only to help others. When our attention is taken away from helping people who really need it by people who refuse to observe the rules we do get a little frustrated as it wastes our time.
I don't understand why you privately messaged me the other day saying you'd rather deal with this by private message, seemed to have pumped me for information and now have come back on here publicly. What games are you playing here? Either keep it public or take it private, but must we do both?
I am replying here because I am upset that you say I was giving medical advice when clearly I was not because it is always just sharing an experience - this is what we all do and if it helps someone good. The problem is the time frame you threw me off. Yes I replied (agreeing with you after I looked at your link) and being very polite) then I went looking for your rules and regulations - couldn't find them in any obvious place and was going to ask you and I was thrown off. I have told anyone what to do - I have merely expressed what has been my experience and I did post a link some scientific studies on SIBO. So it seems my error was being too slow in agreeing to rules and conditions - a link would have been helpful but there was none and I was left trying to search for it on your FB page within the 20 or so minutes you gave me from the time of your warning and throwing me off. You talk about tagging me - sorry I am not familiar with tagging. My ignorance.
It was really simple. I said "please acknowledge the rules before commenting again." The timeframe was irrelevant. Your next comment was not "I can't find the rules" but more about he sibo study. I'm sorry if you find that harsh but we are sometimes up until 2am in the morning working in this group helping people and we get tired and frustrated and I interpreted that as you being intent on continuing to comment without looking at the rules. I have just now re-looked at one of your earlier comments before and it is clearly a case of you giving medical advice, which is what first raised a flag for us. I can quote it here if you like.
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