Sitting here jerking away, feels like someone has a cattle prod stuck in my thigh and sending shocks down my leg..my foot is twisting up....I'm about done with this. My husband may as well go and find someone else that can give him a happy retirement...the last 2 days I have had to drug myself up to the eyeballs with temgesic to make myself pass out and get away from this 24/7 torture.....the last neurologist is so cruel....gabapentin, lyrica, all the da's I cant take, so he said there is nothing more I can do and left me with nothing but the temgesic I have left over from hospital op. I am seeing a new one tomorrow and hoping that he can help me, if not........well
Losing Hope of a good life: Sitting... - Restless Legs Syn...
Losing Hope of a good life
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Oh my dear, I’m so sorry to hear this. I’m not one than can help you unfortunately but I just saw no one has responded yet. My heart goes out to you and I’m going through something similar. I sooo wish I had some answers for you. Just know you are not alone and I do understand. I just had 3 days in a row with no sleep and actually fell asleep standing next to a wall and ended up the floor . I saw a new doctor a GP that was so kind and understanding, I was crying and he even offered a hug. He pledges to work with me through this. I hope your new doctor will be able to help you. I’ve been dealing with RLS for 35+years but it has gotten worse and I just yesterday was feeling very down. Please don’t give up hope——you matter. People on this site are very caring and understanding.
Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices, using a standing desk, listening to music, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.
sorry you are suffering so. It’s frustrating to read how different doctors and countries are free or tight fisted with the meds we need. I hope you get better results with your new doc. Remember that you are your best advocate! Suggest the doc reads the latest Mayo Clinic booklet to educate fellow docs about the condition.
As well as publications from the RLS foundation . There are many research studies that back up opioids for RLS problem is finding a doctor to prescribe. Good luck
I hear your desperation and completely understand. Hang on in there. Lots of us have been there.I'm not clear exactly what drugs you are taking? What exactly are you taking for RLS? What are the doses?Are you taking any dopamine agonists? What other medications are you taking which could be triggering RLS? And do you know your ferritin level?
Huge good luck with the new neurologist. I pray she knows about RLS.
• in reply toJumpey
I am on no drugs for rls as i am allergic to all da;s and gabapentin and lyrica......have some left over temgesic from op that I am using to make me sleep that is all.
Show your doc the "Mayo Clinic Updated Treatment Algorithm for RLS". Hopefully he will heed this expert advice from fellow physicians.. If not, see if he will refer you to a pain clinic where those docs have much more liberty to prescribe opioids. If neither of these work, try kratom which you don't need a prescription for. Hope this helps!
• in reply toSeaux
can't get kratom in australia it is illegal
hello Kathandkell, I completely empathise with your situation - mine is similar - whatever I take there are problems to deal with - my husband as well is semi retired but we can’t do the things we would want due to my rls. I am thinking though if you are suffering all day and night are you coming off of something or did you recently stop taking a medication? I have found the withdrawal from one medication to another horrific - however once you realise that it is withdrawal you at least know that it will calm down over time.
Temgesic is short term buprenorphine isn’t it? I am currently trying to get to grips with sublingual buprenorphine which does calm or stop the restless legs ….. I’m currently trying to get the dose right abd manage various side effects…
We have all felt at times that life is not worth living - but this new neurologist may be great for you …..and there is continued research going on so please don’t give up xx
Do you have your appointment tomorrow? I really hope the new neurologist will agree to prescribe long lasting Buprenorphine. Temgesic seems to have a shorter half life and doesn't cover severe RLS as well as Buprenorphine.If you can get the same brand as Shumbah, I'm sure it will help.
This is a cruel disease. Made worse by complete lack of knowledge amongst doctors.
Thinking of you.
Temgesic is buprenorphine isn’t it? I was told it’s the tablet form whereas patch is another form.
Temgesic is Buprenorphine, but from what I can work out from reports on here, it is a shorter lasting version. I have tried to find evidence for this, but I can't. The active ingredient is the same as in the other Buprenorphine products,so why people report it doesn't work as well is stumping me. It could be that different brands have slightly different effectiveness. Temgesic comes in pills. Buprenorphine comes in pills and patches in the UK and oral liophylisate. All listed here.bnf.nice.org.uk/drugs/bupre...
Buprenorphine is only available as 2mg pills in the USA, which are difficult to cut into smaller doses, so they also have a film which sticks to the inside of the mouth and that can be cut into smaller pieces to reduce dose. In the UK, we don't have the oral film.
netdoctor.co.uk/medicines/a... says need to take every 6 to 8 hours
medicines.org.uk/emc/produc...
I found this which lists the pharmakinetic values of both Temgesic and Buprenorphine.
They are identical.
Both have a rapid distribution phase and a half life of 2 to 5 hours BUT both have a long terminal elimination phase of 20 to 25 hours. I think this is why it covers most people for 24 hours on a single evening dose.
So, it would appear that in the UK, Temgesic 0.2mg is exactly the same product as Buprenorphine 0.4mg.
It may well be that different brands work better than others. I have certainly encountered that. Tephine and Sandoz and morningside brands don't give me 24 hour cover, but Accord brand does.
• in reply toJoolsg
They are not identical Temgesic is mcg dose and bup is mg dose....temgesic has 5/6 hrs cover and bup about 24 hrs
Joolsg• in reply to
No - Buprenorphine also comes in mcg. I take the 0.4mg (400mcg). In the USA they only supply 2mg as the lowest dose subingual pill. In the UK, the lowest is 0.4mg. Temgesic starts at 0.2mg.The pharmokinetic properties listed in the UK medicines are the same. (Identical).
Perhaps the formulation in Australia is different? Temgesic doesn't exist in the USA.
I've been trying to find scientific evidence everywhere for the difference between Temgesic and Buprenorphine.
The UK site I just listed has it all set out.
The pharmakinetic properties for both Temgesic and Buprenorphine are identical in the UK. Both contain Buprenorphine hydrochloride and both have the identical rapid distribution phase and a half life of 2 to 5 hours and a long elimination phase of 20 to 25 hours.
I also emailed Dr Berkowski and he confirmed Temgesic isn't available in the USA.
I'll see if I can find the Australian equivalent which sets out the detailed info.
I second Joolsg. I have also searched high and low to find (scientific research) substantiating the claim that Temgesic and buprenophine are different/ have different kinetics. Personally, I suspect that at the higher doses (mg) that longterm half-life becomes more relevant, as at the initial half-life still substantial levels in the blood remain. It is an extremely simple way of arguing, but it may just be what happens.
• in reply toJoolsg
Thanks for looking into this Jools.
I've long been puzzled as to the difference between Temgesic and Buprenorphine.
In Australia there is Temgesic and also Subutex (buprenorphine). Both are available in different strengths.
Here's a reply i posted on this forum some months ago..
"I don't understand why in Australia, Subutex is only available to treat opioid dependence but Temgesic is readily available. Especially when they both appear to have the same active and inactive ingredients.
Temgesic
Each tablet contains 216 micrograms of buprenorphine hydrochloride (equivalent to 200 micrograms of buprenorphine) as the active ingredient. The other ingredients in the tablet are: lactose monohydrate, mannitol, maize starch, povidone, magnesium stearate, citric acid and sodium citrate dihydrate.
SUBUTEX
Each SUBUTEX sublingual tablet contains 0.4 mg, 2mg or 8mg buprenorphine (as hydrochloride) as the active ingredient, along with the following inactive ingredients:
lactose monohydrate; mannitol; starch-maize; povidone; citric acid; sodium citrate monohydrate and magnesium stearate."
Joolsg• in reply to
That confirms what I have discovered. I think LotteM is right. The smaller the dose, perhaps the lower the active ingredient in the bloodstream and perhaps it is eliminated faster.
Can you get subutex/Buprenorphine here in Australia for RLS?
Other things to try include Baclofen, Clonidine, Perampanel ,Dipyridamole, Carbamazepine, Valproic Acid,
• in reply toRLSLearner
Have started me on carbamazepine yesterday, have been up all night vomiting and extreme nausea.....I notice that you can cut them in half so I might try half a tablet today for my doses
I am so sorry for your situation and your comment about ur husband etc hit me bc I to felt the same! He complains we can’t do anything go away etc bc of my issues! Doesn’t show much compassion for my situation. It’s amazing that I to have been up for the last 4/5 nights with severe episodes of this horrible dis-ease!!! Falling asleep standing up the whole nine yards! I am in USA and take opioids for pain. However they do help tremendously for RLS. Unfortunately my pain Dr refuses to even discuss it! It’s not her thing! If u can speak with doctor to give you an extended release and an immediate release I guarantee you will get relief! Unfortunately for me I am not given enough in my script so I wind up taking more when I need for RLS that I am struggling the last /4/5 days before refill day!! It’s so frustrating! Well my best to you and hope desperately you find the right doctor with the knowledge to help you!!
I hear you. I have opioids for pain and I need more than is prescribed. Now the oxy is starting to cause withdrawal symptoms during the day so I have problems day and night. I stretch it out as long as I can but as you know, it just creates 24 hours of discomfort on one end or the other. I take OXY before sleep and I get almost 6 hours but somewhere between 230 and 4:30 AM. I wake up with it so bad in my wrists and have to take OXY. I lay there for 30 minutes until it hits and then I get a glorious two hours of sleep. I would not wish this disease and the drugs and the side effects and the complications on anybody.
I wasted 5 years on Oxycontin and suffered mini opioid withdrawals day and night. Switching to Buprenorphine was miraculous. Andy Berkowski prescribes it in the USA ifyou can see him.
I'm glad you found peace! I have my third follow-up with Dr. Buchfuhrer coming up soon, perhaps in September. I had already asked to switch drugs but he felt athen s long as the oxy was working not to switch. Now that I have the withdrawals and highly increased RLS, I think he will agree with me.
• in reply toJoolsg
I'm in Australia and the drs only give it out for drug addicts apparently, but I'm taking all of Shumbah's info with me tomorrow and begging for it.
Joolsg• in reply to
Crossing everything in the hope they actually read the research and prescribe it. Also show them the Massachussetts Opioid Study which shows RLS patients taking opioids do not develop addiction (unless history of abuse) or tolerance. The dose is usually kept the same for decades.massgeneral.org/rls-registry
• in reply toJoolsg
Hope neurologist is right or I'm done.Well the neurologist said it is not restless legs but nerve damage. He flatly refused to give me subutex without scientific proof, I told him that I did , He has taken me off temgesic as well and informed the other drs looking after me not to put me on it again.....he said there is no proof that this works on rls...again I said there is lots of proof but he just ignored me .he has prescribed tegretol 100mgs 3 times a day for nerve damage...I'm going to take it as I only have this or ending my suffering. Maybe it will work , I don't know, I pray that he may be right and it is nerve damage not restless legs as it is terrifying to think of the future with no rest or joy.
Joolsg• in reply to
Oh my god.I am utterly speechless.
I knew the medical profession in the UK were extremely poor on RLS, but clearly there are worse countries.
The ONLY saving grace is that tegretol is being used for RLS where other meds have failed.
As HeBgBgirl points out, RLS was first described by Dr Willis in 1670 in London ( Willis Ekbom disease).
Buprenorphine is not licensed for RLS in any country. Nor are gabapentin/pregabalin.
Most drugs are prescribed 'off licence'.
I really, really hope tegretol helps. It's an anti epileptic, so may take up to 3 weeks to be effective.
• in reply toJoolsg
have been up all night vomiting and severe nausea from this drug. I notice you can half the tablet so I will try cutting it in half today and see if that makes a difference.....I am so done with all of this
WoW! You literally sound like me!! I’ve said exactly the same I wouldn’t wish it on anybody!! It is horrendous! Not sure if everyone is aware but RLS has been in existence since I think the 17th or 18th century!! Let’s all guess what they used for RX?? Hmm 🤔 yup ya guessed it…. Opioids!!! It’s amazing that the medical field here in USA or there across “the pond” that at least 85% my guess of the medical establishment knows Jack shit about it!! Oh they’ve “heard of it” but that’s all. The fact that it’s been around for that long you’d think they’d have at least a specific RX for it by now!! Obviously it’s not important enough for them !! But hey who cares about those people suffering with this demonic disease!! I say dis-EASE because it is! Why do they call it a syndrome? Bc they don’t know?? I’m ranting again sorry 😣
I feel for you. Last year I hardly slept. I would constantly walk at night. I thought I could not go on. I tried various opioids. I fell and hit my head and ended up in the ICU with a brain bleed. Fortunately, it was minor with no lasting effects. I switched to Buprenorphine/Naloxone(Suboxone) Sublingual Film and Gabapentin, I am now sleeping 8 hours most nights. I feel I have a life once again. Please don't give up hope. Find a doctor who tries to understand. In the mean time try to use a walker or cane to prevent a fall.
I have had RLS my whole life. I am 71 so I tried a lot of different things. Never prescription drugs. Forget going to doctors they are just robots for the drug companies and care nothing about the patient. Here is what I use and I finally have some relief;
1. Keto diet-removes all sugar & carbs which triggers RLS
2. Medical marijuana I take 10mg at night and can sleep most nights for 6 hours. I take more if I wake up and it helps to get back to sleep.
3. It may sound odd but a small amount of coffee will calm everything. I researched and found that coffee contains niacin which can help RLS so now I take 50mg three times a day and it has really helped. (Dr. Mercola-Niacinamide )
Keep trying different things that other people have used successfully. Everyone is different. The main thing is do not give up and do not take prescription drugs which all have negative side effects.
I so hope the new neurologist helps you, I can only imagine what you feel because I am a caregiver to my mom with RLS, but even watching her suffer from RLS is painful. You are not alone, wonderful people on this forum totally understand what is happening with you. I don't know if you tried clonazepam - it did help my mother for a year or so, it is from a group of benzodiazepines, and it really calms you down and makes you sleepy. But of course it's the doctor who should prescribe it considering other conditions or allergies you might have. Wishing you best of luck ❤️
Really sorry to hear that you are in this position. I see my gp in 40 mins and want to get a sleep study + see a neurologist, but hearing your experience, I am having second thoughts about it all.
It must be dreadful to be allergic to most meds...and they are all pretty horrible about it in Tasmania. Some gp's may read print outs, but most have fixed ideas and will just have a glance through them and dismiss you.
Even if you are given opioids, if they aren't for cancer, quite often you have to go through the humiliation of going to a chemist once a week to pick up a supply and even then, you get drug tested once a month which is degrading.
'Cattle prod' yes, that is exactly the words I used to my gp.
Hoping things go well for you today.
Xx
Hi, have you tried buprenorphine? I am in Australia and my pain Dr and gp both happy to prescribe.
Sometimes I need to add half an endone, but the Bup has helped enormously, I also felt like giving up last year, hang in there. You just need to find an understanding Dr. 🙂
• in reply toNanpat
They wont give it to me
Have you tried eating foods high in dopamine at bedtime? I take some l-tyrosine with some eggs and almonds at bedtime and it helps. Sometimes I wake up at 5 am with a little rls, and I have some l-tyrosine powder and I fall back to sleep in 10 minutes.
hi deary i cant help you either i am in Australia and ive also been to a neurologist who said up the doses on your medicine [ not likely ] cant help then... docs no better! come off sifrol cut your pill in half and take 75mg of lyrica, oh your iron is normal.. but she doesnt tell me the results, she did give me a script for cocodamol just 20 tabs ...i cant get any help here i hope you find a good neuro
xx
Well I feel for you. I can’t imagine not having the right meds or whatever to help with this! When it first started 30 yrs ago I thought I was going crazy! Now at 60 I can’t handle the nights I get it. If it weren’t for the opioids I don’t know what I’d do! I hope they get doctors in Australia to help everyone there. Maybe you can reach out to RLS foundation for assistance?
Hi K+K/All, bit late on this one.
Temgesic is Buprenophine with the same pharmacodynamics/kinetics. Different doses do not affect the half life. But with a really long half life it takes longer to reach its steady state. Maybe 200 mcg (0.2mg) is enough for some maybe others need 2mg. But if you need 2mg then 0.2mg will not feel like enough = as if it has worn off more quickly.
Temgesic is not TGA (This is FDA in Australia) approved for opiate dependence so is allowed to be prescribed - short term and really should be with health dept approval. Subutex is also Buprenorphine but has a TGA for opiate dependence and can only be prescribed for that (Methadone the same). Suboxone is buprenorphine with naloxone (the reversal drug for opiates). The naloxone is not absorbed orally and is there to stop it being dissolved and injected IV.
Yesterday I emailed the distributor of Temgesic asking if they would consider seeking TGA approval for RLS. It would be a world first I think. Will let you know where i get with that. But would make it much easier to prescribe. Only Oxycodone/nalaoxone (Targin) has a TGA approval for RLS.
Yesterday I started my wife on Dipyridamole ...
• in reply toRLSLearner
yesterday my pain specialist started me on targin 10mg twice a day.....I do hope that works with the tugging electric pulling feeling in legs....it is driving me insane.
• in reply toRLSLearner
I can't believe they won't prescribe Subutex to a suffering chronic pain sufferer, but freely give it out to drug addicts.......I'm just gobsmacked. There is a drug out there that could potentially stop me from jumping off a bridge but they won't give it to me. They look at me as if I'm a drug seeker. I fought for my country, then nursed people through their traumas...when the time comes to be helped myself, I'm treated like scum and thrown on the heap.
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