RLS and end of life options

[dtbl]

I am 83 years old and live in the U.S. in a state that has a legal end of live option. Does anyone know if RLS is a recognized condition eligible for this choice?

[Joolsg]

I am so sad that you feel this way but totally understand. The appalling lack of treatment for this torturous disease leads many of us to consider ending it all.

You are not alone BUT you are in the USA where a few saintly doctors recognise how life threatening RLS can be and they are prepared to help us by prescribing low dose opioids, in particular Methadone or Buprenorphine.

Please don’t do anything until you have seen one of the knowledgeable, enlightened doctors who can and will help you.

Dr Buchfuhrer is Redwood, California, Dr Winkleman in Boston Massachusetts. Dr Earley in Baltimore and Dr Ondo in Texas are all knowledgeable and can help you. Dr Glen Brooks in New York City is another.

Please join the USA RLS foundation and ask for a local doctor recommendation as someone may know a doctor local to you.

Where are you? I can send some info about US help groups.

Can you please tell us all the medications you’re taking now, including the dose and how long you’ve been taking them?

We can help guide you towards getting the right treatment.

This is a UK website so most members are from here, although there are several visitors from the USA.

We know exactly how you feel and I promise that there is hope so don’t do anything until you have explored all options for best treatment. There are people who are now completely RLS free by taking low dose Methadone/Buprenorphine.

Thinking of you.

[dtbl in reply to Joolsg]

Thank you but after 60 years of this condition I have explored all the options you mention and others as well. I have also seen Dr. Buchfuhrer and am currently under his care and saw Dr. Early several years ago. I am allergic to all opiates and narcotics so they are not options. I am not looking for a cure or treatment. I am looking for end of life options.

[Joolsg in reply to dtbl]

I am so sorry that opioids are not an option. I understand your situation and respect your decision and wish I could help. Maybe someone from the USA will comment soon.

[Hidden in reply to dtbl]

I am terribly sorry to hear that you have suffered so much with no apparent respite from RLS that you are enquiring about end of life options.

End of life options, I understand are only applicable in the case of "life limiting" conditions e.g. cancer. Although I'd agree that RLS can be, indirectly, life threatening it is not physically life limiting.

If by end of life options you're referring to euthanasia, then in most countries even for life limiting conditions this isn't legal as you probably know.

If that is the case, then it's awful to think that it's come to this for you. I hope I have misunderstood your intention.

I'm not sure anybody on this site can advise you.

[Arkangel]

So sorry to read your post and can totally understand and empathise. I do hope that you will find relief.

[cjouelle]

Hello. My heart goes out to you and I understand how you are feeling. I wish I had a medical answer for you. I've started taking tramadol (this is my husband's prescription) and I found that this helps, but I understand you are allergic to all opiates. I'll keep you in my thoughts for sure. (I live outside of Boston.)

[Whymelord]

Hello dtbl, I'm really sad that you are feeling this hopeless. Its the fact that this horrendous syndrome doesn't get the attention from medical profession that is required to give us ease. I fully understand how your at the end of your tether but please please know that everyone I'm sure on this forum are feeling your pain and praying for you

😘

[dtbl]

my deepest thanks to all of you who expressed sympathy. your kindness is overwhelming.

[Simo7]

I’m so sorry that you’re feeling so desperate from this condition. I have RLS but I take tramadol for ongoing endometriosis and adenomyosis. I’ve noticed that the RLS isn’t a problem when I’ve had some of the tramadol. I know you said your allergic to opiates but it’s not actually an opiate (as far as I’m aware?) it is similar though. But it may be worth one more try. I totally understand how you feel about not trying anything else though, you get to the point where you’re fed up of being a guinea pig - at least that’s how I feel about endometriosis treatment. Wish you healing xx

[Mirapexhell]

Hello dear friend. I understand the feelings you are experiencing. I have struggled many nights with the insane torture of RLS. Too groggy from mirapex to stay awake, stumbling around trying to pace it off, plopping on the bed again and again only to jerk awake as soon as I close my eyes. During those endless hours, I've thought down that same dark path. I'm having hip replacement surgery on October 21st. I thought that would be some relief from a lot of the pain. But now my neurologist had a nerve conduction study done, and discovered I have poly-neuropathy. No wonder my toes are half numb, freezing cold and burning. I'm so over this getting old thing. I'm 62, and this is NOT what I expected retirement would be. Best regards.

[Dougg]

Dtbl - I’m so sorry that you have had to suffer with this horrible condition for so long. I share the wishes of others on this forum that there could be an alternative for you.

I, too, live in a US state that has a legal end of life option. I looked up the details of the legislation, and the official web site said, “A qualified patient means a competent adult who is ... suffering from a terminal illness that will lead to death within six months.” It’s that last part that may present a big obstacle, since I don’t believe RLS is considered a terminal illness. State statues will undoubtedly vary, but I’m guessing that others will probably include similar language, perhaps because the people who wrote the law aren’t familiar with RLS. You may want to see if your state has any non-profit organizations that assist people in this area, and contact them to see if they can be of assistance in some way - perhaps by directing you to a doctor who would understand your situation enough to consider assisting you.

As you can tell from the responses, people on this forum truly understand how bad this condition can become. Thinking of you and holding you in my heart.

🙏🏻❤️🙏🏻

Doug

[Shumbah]

My heart breaks for you.

I myself have this fear of being elderly and in a home suffering from this wretched condition

Although mine is now controlled with an opioid I fear being in an environment I can not control

and opioids are stolen.

I totally understand your situation.

And elderly man in Australia was forced at the age of 104 to travel to Switzerland he had no health conditions , however he was becoming to frail to continue caring for himself at home.

This man had been a Proffesor of medicine and wanted the right to die.

I was appalled that he had to go to great lengths to do a long hall flight to Switzerland I believe he stopped in Europe somewhere to see a family member and then continued .

The Proffesor was very unhappy that he had to leave his own country and make such a long trip.

He and his family had a few nice days together.

His loving family were with him as he made his wish come true. To die peacefully on his terms .

I am so very sorry that you or anyone else in this planet suffer from this disgusting disease without successfully being treated.

I truly understand.

[Snowdrop1947 in reply to Shumbah]

I fully understand what drove this person to go to such lengths.

For many years until a cardiologist referred to it as a benign condition, which in the accepted it is, I was taken off pergolyde a drug which worked well for many years. I am now on a daily cocktail of drugs, gapabentin 1200 mgs, ropinerole 500 micrograms and Targinact 5mg/2.5 twice daily .

And every night time has to be endured and the condition often continues into the day.

I have to plan my life around RLS particularly in relation to travel. Theatre visits stopped the day the pergolyde was no longer considered an option.

I am 73 and live in the UK and have had the condition for nearly 40 years where some drugs recommended on this site are not approved by NICE .

Recently I have been taking chewable Cannabis with THC , illegal in the U.K. but sent over by relative in Canada, where they are legal, but they allow me a few hours sleep . I realise this is not the answer indefinitely.

If it wasn’t for my long suffering husband, eight years older than me, I might well have taken the route of the the Australian Medic. I am very aware that by the law of averages he won’t be here for ever and I dread the day I have to cope this dreadful condition by myself.

I have a telephone appointment with doctors in KCH every 6 months but they are not productive. I have yet to mention the Cannabis !

[Shumbah in reply to Snowdrop1947]

Hi Snowdrop

Temgesic is legal and available from your GP .

Our Gps need to know if we are thinking of ending our life it seems to be the only time they will actually take notice and prescribe opioids such as Temgesic.

Temgesic is proving that majority of people are getting perfect results from Temgesic and other buprenorphine products.

[dtbl in reply to Shumbah]

sorry allergic to all opiates

[Snowdrop1947 in reply to Shumbah]

My next telephone appointment is in December so I will definitely ask about Temgesic.

In the meanwhile another question: I have reduced Ropinerole from 4mg to 0.50mg because of augmentation but still no relief. Rotigotine patches have been suggested as an alternative .Is that not exchanging ‘one evil’ for another ?

[michaeledward]

I can't say that any of the following really works, but for whatever it is worth: try putting oil of lavendar on the bottom of your feet. My cousin said it worked for her husband who has RLS. Also, I read on line that marijana suppositories also help with RLS projectcbd.org/medicine/do-...

[michaeledward]

Also, I had what I thought was RLS although it only affected the toes of my left foot and I took vitamin B-12 which after several months of taking it seemed to help somewhat in that the RLS type episodes happened less frequently. Then in June I was given methylprednisolone for a allergic reaction to something I ate and since taking the methylprednisonole, I haven't had any RLS type episodes. I am calling it "RLS type" episodes, because I'm not really sure my issue would be considered RLS.

[michaeledward]

Of course, it may not be possible/advisable to obtain marijuan suppositories if marijuana products have not been legalized in your state.

[BoldMove]

I saw a report on RLS a few months ago on TV news that stated RLS disappears often in a person's 80s and always by 90. I'm 74 and hanging in there with hope. I know how you feel and getting into bed to try to sleep is really entering a torture chamber. But, there are things that pop up in the day that make life worth living. I'm learning to sleep in a series of naps between attacks.

[ijsgrandma]

Not sure it would qualify. My Mom was in OR which is a State that allows help, but when she was on her death bed and had been told no operation or medication could help her, they wouldn’t turn off her heart pacer! No matter haw many times we and her asked! This mad her suffer days longer.

Please try CBD at night and Medical THC if available. I’m 70 and would never of thought I would ever use marijuana after living through the ‘60s! If you feel the same way, trust me it’s not the same MJ of the ‘60s. It helps a lot and with sleep. I too have used every prescription drug out their approved for RLS. Gone through side effects like augmentation, chronic UTI’s, compulsive behaviors, etc. Things nightmares are made of coming off each and every one of them! I too an allergic to opioids. A doctor will never condone you using CBD and THC, but I am hoping you try it on your own before your final decision. But I do respect it. Good luck! 🙏🏼❤️

[Sampsie]

Dear dtbl, I was so saddened when I read how desperate you are. You must be really suffering. We all care what happens to you, and I spent much time last night wondering how to help. All I could think of was to try cannabis- inhaled or as oil. A medical prescription will be different and there are many types to try. But I respect your right to choose your own path. I hope you find a way to get enough relief to enjoy some moments in life, in nature, with loved ones, and I shall hold you in my thoughts.

[sleepless-in-seattle]

If you have access to cannabis, you might want to try Panda Pen Granddaddy Purple. It's an Indica, 68% THC and 5% CBD so it helps you relax.. It starts working in less than 15 minutes and lasts for about 2 hours or longer. It's a cannabis concentrate in a vapor cartridge so you will need to get a battery (about $10 US). One or two puffs is all you may need. I use it on nights when nothing else works. And it always delivers for me. I live in Washington State. Hopefully it is available where you live.

[dtbl in reply to sleepless-in-seattle]

thank you but I am allergic to all types of marijuana, opiates, gabapentin,

Lyrica.

[cjouelle]

Do your friends and/or family to offer you support?

[dtbl in reply to cjouelle]

I have both a son and a daughter and my daughter is very supportive of my decision but it is such a burden for her and I hate having to lay this on her because now it lies between us and I can see how she suffers. I can't talk to anyone else, such as my therapist because they would have to report me. I haven't told me son because I don't think he would understand.

[Snowdrop1947]

I am 73 and have ‘suffered’ with RLS for thirty plus years , which has got progressively worse. I don’t have just have occasional episodes it’s what I live with everyday.

I take1500 mg gabapentin , ropinerole, 0.50mg) Targinact but they bring little relief.

RLS rules my life. I no longer go to the cinema or theatre or use public transport as I have to take breaks on a journey to walk around which brings a degree of relief.

I do resort to sleeping tablets and also cannabis with THC ,which a relative sends from BC as I live in the UK.

I go out walking most days and also in the evenings as I am unable to sit for any length of time.

The condition can also be embarrassing, especially when I’m in company and can’t stay still.

Misery!

[Bobee]

did the cannabis with thc help at all? If so, what is its mixture cbd oil and thc?