Pain spec letter

This is what the pain specialist sent to my dr when I asked about subutex for restless legs and nerve pain.....I have very severe restless legs and heard thus was good for it. I'm just speechless....all i was on was 200mcgs of buprenorphine and the targin 5mgs twice a day.

[Madlegs1]

And -- the more you complain ,the more you are perceived as a nutcase!This is Cuckoo nest territory.

We need Jack Nicholson!

And quick?🤪

So, so sorry for your situation.

I am almost speechless and certainly apoplectic.

"Have gun, will travel". Comes to mind.

I hope you have the strength to cope with all this entails.

Tread carefully, keep calm, act wisely.

Can you get anyone to act as an advocate.?

[Hidden in reply to Madlegs1]

I had myh husband in with me and he explained how it was affecting our lives and he also told him I was not an addict.......give up

[SueJohnson]

Unbelievable !!!

[Joolsg]

Jesus, Mary & Joseph.This man needs reporting to the highest authorities. I am speechless.

This from a man who prescribed Targinact at the same time as Buprenorphine, when anyone with training and education is aware that Buprenorphine displaces other opioids from opioid receptors.

He has confused your desperation and despair at the appallingly negligent treatment you have received so far with mental health issues.

Untreated severe RLS is horrendous and can cause severe distress and anxiety. Especially when doctors refuse to treat it effectively! Or listen to you.

Can you complain to a central Australian medical authority?

Please send this letter to some of the top experts in the USA, like Dr Buchfuhrer at

[e-mail]

or Dr Andy Berkowski at

relacshealth.com/

I am sure they will be as appalled as I am at the negligence and ignorance of your doctors.

The ONLY positive from this is that he wants you referred to an addiction clinic. You will definitely be able to get subutex there and it should control your RLS.

[Hidden in reply to Joolsg]

I will send it these two as you suggested

[Joolsg in reply to Hidden]

I have written to a top Neurologist here in the UK.This is so appalling it needs us all to take action.

The lack of education and medical ignorance about RLS is killing patients and leading to situations like yours.

Please also instruct a top medical negligence lawyer and take legal action against this charlatan. There are so many top doctors in the USA who would give evidence in your favour and against this doctor in Tasmania.

[Typicallygaslit in reply to Joolsg]

I have tried to find such a lawyer in the UK because of a complaint I have about a psychiatrist, no one responds because they only deal with physical injuries, and psychological harm just doesn’t seem to be covered in any way that’s meaningful.

[Joolsg in reply to Typicallygaslit]

That is very disappointing. I'm sorry to hear this.

[Nanpat in reply to Joolsg]

Hi, I’m on Bup patch which settles my legs 4 or 5 days out of 7. My pain Dr has me on endone as a top up and it’s the only thing that always settles my legs finally.

It obviously works for some……are you saying it shouldn’t? I’m confused 🫤

[Joolsg in reply to Nanpat]

bicyclehealth.com/suboxone-...

Buprenorphine displaces other opioids from opioid receptors and tis can cause 'withdrawal' symptoms. As the main symptom of opioid withdrawals is RLS, using tramadol, codeine or Oxycontin/oxycodone with Buprenorphine can have the opposite effect.

In your case, why are you adding Oxycontin? Doesn't the patch cover the RLS?

It may be that the Oxycontin is making your RLS worse because Buprenorphine knocks Oxycontin off the opioid receptors & causes mini withdrawals.

[Joolsg in reply to Nanpat]

Also, many on here report that the patch doesn't work for the full 7 days. Have you considered asking for an earlier replacement after 5 days? Alternatively, switching to Buprenorphine in sub lingual pill form and taking at night only might give you better cover and then you wouldn't need Oxycontin.If you take Oxycontin for the 2 days at the end of the patch, it is probably fine because your body has used up all the Buprenorphine so when you take Oxycontin for the 2 final days of the patch, there is no Buprenorphine left in your system to knock the Oxycontin off the opioid receptors.

[Nanpat in reply to Joolsg]

As mentioned above, no the patch does not always cover my severe rls. My patch seems to last full 7 days and my bad days can be day 1 or 2, no pattern.

I tried the tablets but found not having a constant dose in my system day and night made me have mini withdrawals.

I’m sure extra opioids don’t help for many but for me the small dose of endone when needed is crucial.

My main problem is random bouts of falling asleep in evenings that I can’t control

[Hidden in reply to Nanpat]

I'm exactly the same, the tablets weren't constant and I was having mini withdrawals, so the dr is trying me on patches

[Hidden in reply to Joolsg]

I was on the sublingual and they were not working.

[Joolsg in reply to Hidden]

As you were on the smallest dose of 200mcg, did your doctor consider increasing the dose to the average set out in the Mayo clinic Algorithm? 1mg-1.5mg of the sublingual pills is the average effective dose, but many do well on doses between 0.4 and 0.8mg.

When I was on 0.2mg of buprenorphine, I had RLS at night and during the day. I added another 0.2mg 3 hours later, and it stops all my RLS.

Dr Brandon Yee, who has written articles on RLS in Australia, recommends Dr Gaurie Palnitka, a sleep doctor in Hobart Tasmania. If you see her, she would hopefully overrule the doctor who believes you have opioid addiction issues.

whitecoat.com.au/directory/...

[Fingerandus]

hi Kathandkell. i cant believe that!!! well i suppose i can being in Perth Australia myself and getting absolutely no help what so ever i went on monday to see my doc i wasnt in there 7mins after waiting 1 hour past my appointment i am here now after a very bad evening it started around 6 oclock pm so far ive taken 2 paracetamols at 6 then iron then hot bath then sifrol now ive just taken a cocodamol thats all i can get from my doc im going to have a few drops of CBD oil if cocos dont work i might do that any way i really feel for you we are deserted no one cares except the people on this forum maybe. but what can family do my husbands stumped my tears and ravings upset him ...

[Retiredlady in reply to Fingerandus]

Hi Kathandkell

I live in Melbourne and can highly recommend a sleep specialist whom I consult via zoom in Queensland.

I also have severe restless legs.He fully understands how adversely this condition affects our lives and is very sympathetic.

He readily prescribes opioids as he understands and follows the latest recommended treatment .

Please message me if u would like his details.

[SueJohnson in reply to Retiredlady]

It would be great if you could put the name here as there are a number of people on the forum from Australia who have the same problem.

[Retiredlady in reply to SueJohnson]

Hi Sue

I will post his contact details after I confirm it is ok to do so after my next appointment in December.

In the meantime,will private message any member wanting details.😊

[Hidden in reply to Retiredlady]

can you reply to me on here? There might be other people that could use this info as well..x

[Retiredlady in reply to Hidden]

Hi Kathandkell

Prefer to private message at this stage until I can discuss it with him at my next appointment in December.

[Retiredlady in reply to Hidden]

Have messaged you😊

[BarnGir1]

his just so sad. KathandKell and Fingerandus are tragic examples of opinions and decisions being made before collecting as much data as possible, especially from the person experiencing the pain. I have experienced this from both medical and mental health personnel. They don't realize how hurtful it is, first to be in so much pain made worse because it is hard to explain, and then being treated like an object, especially making a written statement without discussing with you first. I hope you feel the support from the empathetic folks on this site. They have certainly helped me. Please continue to reach out whenever you feel the need. BarnGir1

[BarnGir1]

Sorry for the typos! It's worth repeating, This is just so sad. I hope you don't give up and continue looking for the support and relief you need and deserve. BarnGir1

[Jumpey]

I am so sorry you have been treated so appallingly. I hope your GP is supportive. What about a referral to a sleep clinic?Doctors there may be more knowledgeable. You really need a neurologist who understands RLS. I too would contact Dr.Mark Buchfuhrer .He usually responds promptly.Huge good luck.

[Retiredlady]

Hi Kathandkell

Please read my reply I sent to Fingerandus.

Sorry, it was meant for you!

Please DONT despair, there ARE caring doctors out there who really understand how awful this condition is.

[fifields]

I’ve seen similar behaviour from a specialist recently regarding a different issue. Essentially: “The treatment I’ve advised isn’t working, so it must mean YOU that you are the problem, and nothing to do with my capabilities”.

Despicable.

[LotteM]

Appalling... And many other negative words come to mind.

If only there were a pill that would give someone severe RLS symptoms for one night of 8h..... It would soon be prohibited, classified as torture!

Hope the various suggestions will put you on a better road. Be aware, though, that this letter will remain in your dossier, if you don't do anything against it.

What a nightmare. More than negligence. At least we, your fellow forum members, we understand.

[Lilcatfeet]

I am so sorry you are going through this. I had a similar issue when I was looking fo

[Lilcatfeet in reply to Lilcatfeet]

R a new gp after my previous decided to go full time into her Palliative care specialty. Within the first five minutes of our introductory appointment he zeroed in on my use of narcotics: 5 mg. OxyContin 3 x daily and 4.5 g hydrmorph 2x daily for neuropathic and severe Rheumatoid and osteo pain. The next 25 minutes were a judging, patronizing, accusatoryt lecture on the evils of narcotics in older people. The appointment ended with his declaration that before I would be allowed in his practice I must be free of narcotics, even suggesting a treatment plan. The next week I got a follow up letter outlining the rules of being his patient and saying that, unless you have terminal cancer, he will not prescribe opioids under any circumstances. When I called my former gp to tell her this story she was outraged and decided to keep me as a patient, much to my relief.

This is in Canada so obviously this is a problem globally. People like us are not the reason for the opioid issue yet we are the victims of it.

[TheDoDahMan]

It is outrageous that RLS sufferers are denied low-dose opioid therapy for our grievous condition. I call upon all that is Good and Holy for you to get the treatment you need. If only these unresponsive, control-driven, so-called health care providers could feel what we have gone through! All my best wishes for you!

[Merny5]

I am astonished. I’m so very sorry that you are being mistreated like this. I agree that this doctor should be reported.

[spencertroy222]

I uses to take 900mg Gabapentin as soon as I felt it coming on. My magic dose is 3 x 300mg Gaba

[Hidden in reply to spencertroy222]

I am allergic to this, hence the road down low dose opioids

[Doctorplacebo]

I currently am fortunate to have a neurology RLS specialist comfortable prescribing opioids for refractory RLS (unlike that monster who abused Kathankell).

But for the year, or longer, before I got in to see him I managed the torture that is refractory RLS with kratom. I don't think it is a good long-term solution, but it could be a life-saver--an available interim opioid treatment-- if some small-minded, ignorant, health non-care provider decides to cut you off, or there are supply chain issues or politicians in their infinite wisdom decide to make it impossible for RLS-sufferers to get treatment. Kratom has opioid effects and also, the red variety, sedative effects so helps sleep. My biggest problem with kratom was its short half-life--I have RLS 24 hr/day so need a long-acting opioid.

Wishing everyone a peaceful night in a crazy world.

[Hidden in reply to Doctorplacebo]

kratom is illegal in Australia