Suicide: Hi, I know this sounds like a... - Restless Legs Syn...

Restless Legs Syndrome

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Suicide

Cameronb profile image

Hi, I know this sounds like a terrible post but I've often in my worst attacks wondered how many people take their own life's due to this condition?

It's certainly crossed my mind more than a time or two and having a family history riddled with rls going back generations and having fibromyalgia as well I've certainly had my fair share.

Those nights when you're so isolated and alone dealing with the constant torture,which for me can sometimes last up to 48hrs...so so tired and can't even sit down or stop moving...well it's those times when my mind goes to my great great uncle who took his own life. I know rls played a huge part in that and I can so so understand.

Again sorry for the morbid post,just wondered if they're is anyone out there feeling similar?

Xxxxx

145 Replies

Hi, I completely understand your post. I would never do it but it has crossed my mind when I am alone and struggling so much because I just want it to end. I imagine throwing myself down the stairs or jumping out of the bedroom window. I wouldn’t but I get so stressed and desperate. I wonder what it’s doing to my heart to be honest. I’ve had a terrible couple of nights and I’m totally drained. Take care xx

1Master11 profile image
1Master11 in reply to

I think it is very much a thought for people who have severe RLS.I have said myself I'd rather be in pain, and if I have to live without relief then I don't think I can live. My RLS is so severe it's constant if I'm not on meds , or I forget to take them. People do not realize how bad it really is!

in reply to 1Master11

No they don’t unfortunately. To me it’s one of the hidden disabilities

Cameronb profile image
Cameronb in reply to

And you hun xx

I've often thought about it, especially in the wee hours when the Oxycontin doesn't seem to be cutting it. The only thing stopping me is the thought of leaving behind my grandchildren, and the rest of my family.

If I were on my own, I can imagine how tempting it would be to just slip quietly away.

In this day and age there should be competent relief for RLS. I know I have found it in opioids. I know I'm fortunate.

The only times it doesn't work is when I foolishly take a trigger that either inhibits the opioid, or sets off the fizzies.

I hope you can get help and relief.

You should talk to your doctor and open up about your predicament.

All the best.

Wanman4 profile image
Wanman4 in reply to Madlegs1

I too am fortunate to have a Dr who will treat me appropriately with Oxycodone. What triggers have you noticed that I should watch out for. Most nights are good, but some are hell. I can’t seem to figure out what my triggers are! Thanks! Wayne

Madlegs1 profile image
Madlegs1 in reply to Wanman4

Each person's triggers tend to be unique. Maybe a consequence of our individual gut biome??For myself, msg, processed meats ( sulphites) high salt, some ice creams ,alcohol, raising agent in biscuits etc and plenty more ,all cause the fizzy wizzies.

I have experienced inhibition of opiate with a dental injection ( Cox 2 inhibitor) but only mildly, and the dentist just uses another anaesthetic.

The only way to check your own triggers is by keeping a food diary. This will show up links after a few weeks.

Good luck.

Wanman4 profile image
Wanman4 in reply to Madlegs1

Thanks, that is very helpful information! Take care!

I can scarcely see that the quality of life with severe RLS that no treatment will effectively control would be one worth trying to continue with.

Yes. I think anyone with severe rls will have had these thoughts and a 2019 study appears to confirm them - webmd.com/brain/restless-le...

Wow, although not totally suprising to anyone with severe rls

That's scary but not unexpected. The more information like this gets out there the better. All primary care doctors should be aware that they could have a fairly substantial number of people in their practice at an increased risk of suicide.

I absolutely agree. It might open a door to a greater understanding by the medical profession of the suffering rls can cause.

However, I find the speculation contained in the study - that there is a link between rls and mental illness - irritating at best. There is a reason that sleep disruption has been used as a method of torture throughout history. It IS torture. It seems to me that, faced with a lifetime of sustained sleep disruption all night every night, it is not an indication of mental illness to consider or even commit an act of self harm. Rather, it is an indication of sanity; such a life is barely worth living.

I understand where you are coming from, but the brain is a complex organ and our mental states are, as far as modern neuroscience can determine (and what modern neuroscience actually clearly understands about the brain can be handily written on the back of a postage stamp), our mental state is highly dependent upon what is going on in the biochemistry. I would not, therefore, be in a rush to stigmatise in any shape or form, any kind of mental illness as somehow a weakness or to suggest that depressed states as somehow "irrational" responses to a situation. I think that what the authors of the document are exploring is that the same biochemistry which causes RLS may also cause depressed states, even to the point of what my be defined as psychosis. Sleeplessness and the resulting fuzzy states and inability to concentrate properly are, to me, all the more frustrating, as a good deal of what I have done in my life and work has revolved around reading and teaching some quite complex material and to be faced with the idea that I could never be able to sit down and read or stand in front of a class of students teach again would be a hugely depressing realisation.

In my own experience RLS causes feelings of isolation and, given that I do experience some element of SAD, long dark nights of sleeplessness causes depression.

That much said I can also understand very clearly that a decision to commit an act of self-harm or even a desire to die in the face of RLS could well be a decision taken in much the same way that someone may opt for, or desire, some form of euthanasia as an alternative to extended suffering from other diseases such as cancer or long term dementia.

I would not therefore be willing to suggest a start "Either or " distinction but to accept that both cold reason and a depressed state could contribute to a person's decision to die in varying measures. Having seen the trauma of those left behind after the death by suicide of a loved one and knowing that close family of the deceased have thereafter an increased chance of death by suicide my main concern remains prevention.

On top of the trauma of the condition itself, we also have to deal with disinterest and ridicule from many who do not understand how difficult it is to live with rls, including our own medical advisors. In that regard, it puts me in mind of the way insanity was dealt with in the nineteenth century when victims were punished for their condition.

RLS has the highest suicide rate of all other neurological diseases combined.I'm known as an overly positive, optimistic person. However, I seriously considered suicide while augmenting on Ropinirole and again during the brutal withdrawal.

I'm now on Oxycontin but still get bad RLS for at least 2 hours every evening and I'm still woken at least twice a night. And yes, every day I do sometimes think it would be easier just to sleep and not wake up again to the inevitable daily torture.

One decent night's sleep stops me thinking of ending it.

I hasten to add I'm not depressed, just calmly realistic.

I have a GP appointment next week when I'm hoping to persuade my GP to prescribe Temgesic/Buprenorphine or Methadone. That will be an uphill battle because I guarantee the GP I get will know absolutely sweet FA about RLS and will have an apoplexy at the thought of Methadone, despite research studies showing it's highly effective, safe and non addictive.

Just out of interest, what meds are you on? Have you seen my post about the Campaign to get RLS taught to doctors in the UK? It's a pinned post.

Cameronb profile image
Cameronb in reply to Joolsg

Hi, I too am on oxycodone and struggling to come back down after being on a extremely high dose, I've managed to get down to105mg a day. If you don't mind me asking how much are you on?

Xxx Alyson

Joolsg profile image
Joolsg in reply to Cameronb

I'm on 25mg of Oxycontin taken over 24 hours. If you're trying to reduce the Oxycontin, have your doctors suggested a schedule and any meds to deal with withdrawal symptoms? I know someone on here who used micro doses of Low Dose Naltrexone to get off Oxycontin and she then upped the dose of LDN to 5mg at night and it sorted her RLS. I'm tempted to try it.....

Cameronb profile image
Cameronb in reply to Joolsg

Oh I've asked for that so many times but it's always refused and I'm on a reduction schedule, I was at one point on over double what I take now xxx

Joolsg profile image
Joolsg in reply to Cameronb

Are you in the UK? I know many of my MS friends take LDN and they get it on private prescription from a pharmacy in Glasgow. It costs about £30 a month.

Cameronb profile image
Cameronb in reply to Joolsg

Really?? Yeah I'm in Yorkshire, have you any idea if I might be able to access that at all! Xx

Joolsg profile image
Joolsg in reply to Cameronb

ldnresearchtrust.org/LDN_Pr...

The only problem is that the private doctors may refuse to help/prescribe because you are on opioids. However, if you explain that you're only using it to get off the Oxycontin they may agree.

I think the woman with RLS who used LDN may have sourced it from Asia but not sure that's a good idea as it's not licensed so no knowing what they may have put in it.

Otherwise, definitely ask your GP to prescribe something to help with opioid withdrawal like clonidine.

On another matter, please consider joining our campaign to get RLS taught to doctors in the UK. Doctors will continue to treat our RLS poorly until they are taught the disease in depth.

Josana13 profile image
Josana13 in reply to Joolsg

Joolsg, Years ago after researching LDN, I made an appointment with an LDN Specialist. She said that I had to be off opiates for 3 or more weeks prior to getting on LDN or that it would make me real sick. Have you heard about this? I wanted to use LDN but cannot get off opiates for 3 weeks because of my pain.

Joolsg profile image
Joolsg in reply to Josana13

I had heard that you can't take LDN with opioids but I also followed someone on here who used micro doses of LDN to get off Oxycontin. She then used full dose (4-5mg) and reported that it completely resolved her RLS.

Josana13 profile image
Josana13 in reply to Joolsg

Joolsg, How long has her RLS been resolved? This is amazing news.

Joolsg profile image
Joolsg in reply to Josana13

Sorry for delay Josana, I didn't see the notification that you had replied.I don't know whether she is still free of RLS as she left the forum about 3 years ago after reporting she was RLS free.

Shumbah profile image
Shumbah in reply to Joolsg

Saying a big pray for you Jools , Buprenorphine has been my life saver.What I continue to do is print off Temgesic and Bupreorphine success stories from this site and my GP scans them into my file then twice a year he forwards them to the drug clinic who are responsible for my scripts. They write a 6 month script and my pharmacist gives me the whole 6 months worth. Those emails he then forward on again to his senior .

Josana13 profile image
Josana13 in reply to Shumbah

Hello Shumbah, can you please tell me how Buprenorphine helps? I was prescribed it and can't tell any difference. I am taking 75mg in the daytime. Thanks

Joolsg profile image
Joolsg in reply to Josana13

Josana, are you still on Pramipexole? Unfortunately, most other drugs won't help while you're still augmenting on Dopamine agonists.Really hope you can manage to get off it.

Josana13 profile image
Josana13 in reply to Joolsg

Joolsg, I was on 1.5 Pramipexole and am currently on 1 and half of a .5, whatever that is. I tried to reduce it further and got real sick. How long do you think I should wait for further reduction?

Joolsg profile image
Joolsg in reply to Josana13

Generally best to wait 2 to 3 weeks before reducing further. I was on Ropinirole, a similar drug, and getting off is extremely difficult. I reduced by 0.25mg every 2 weeks. The RLS becomes more intense with each reduction. For Pramipexole, Manerva has set out detailed reduction schedules which I'll try to find and send. I needed tramadol and illegal cannabis to get through the last 2/3 weeks and it was pure hell on earth. However, I knew it was the ONLY solution to the constant RLS.When completely off or about 3 weeks before the last dose, start taking an alternative medication. Either Pregabalin or Buprenorphine.

Josana13 profile image
Josana13 in reply to Joolsg

I have the schedule from Manerva prepared. I am following it except going at a slower pace.

Josana13 profile image
Josana13 in reply to Joolsg

I have reduced the Pramipexole by 0.375. I am now on 1.125. Right now everything is pretty normal since I started the MAG R&R about a month ago. NO RLS. I am terrified of reducing more since I have no symptoms. When I was taking the 1.5 mg, I was a mess. One time after 3 or 4 nights no sleep and constant walking, I was crazy. My husband took me to the ER. I was walking back and forth at the hospital and the doctor gave me a shot and knocked me out for a couple of hours. Then I came home to continue my hell. This was before I found out about augmentation and that I was taking a heavy dose. I am sneaking on the Prami and reducing by 1.25 every three days. Do you think I am taking to long to get off of it?

Joolsg profile image
Joolsg in reply to Josana13

I think you are going too fast. 1.25 every 3 days sounds too big a dose reduction and too fast. It's best to wait 2-3 weeks before dropping another dose. I'm not familiar with pramipexole but I know you have the schedule from Manerva. Reduce by the dose he states every 2-3 weeks. It's common to have a reduction in symptoms until the lsat dose. That's whn you will probably need an opioid to help with the withdrawal symptoms and you should start replacement meds about 4 weeks before you drop the lsat dose of prami. So talk it through with doctor so you have the replacement meds lined up. Best options sre either pragabalin or gabapentin or a low dose opioid which is difficult in the US so you may need to visit an RLS Centre of Excellence.

Josana13 profile image
Josana13 in reply to Joolsg

Sorry, I meant 0.125. I have been on 1.125 for over a month. I though reducing another 1/4 of a .5 every three days might not cause havoc. That would leave me at .1 mg

Shumbah profile image
Shumbah in reply to Josana13

Hi Josana ,Are you on Buprenorphine or Temgesic which is mcg starting at .02mcg with a 5 hour half life.

I take mine when I am ready to go to sleep only 2mg Buprenorphine it has a 24 hour half life.

75 my is a high dose 37 mg is where they start for pain meds. also if you are taking any other opioids that would counter act your Buprenophine.

I am very careful what medications I take that can overide the buprenorphine , from claratine to Metformin.

I can have a couple of drinks for me, we are all different.

I know some people who cannot drink at all because it stops there buprenorphine from working.

Is there a reason you take it during the day time , some people who suffer insomnia take it earlier in the day.

Josana13 profile image
Josana13 in reply to Shumbah

I'm sorry, I was mistaken, I am not taking Buprenorphine.

martino profile image
martino in reply to Joolsg

Like you I am a glass half full sort of person but there are moments. Please let us know how you get on with the opioid request. Dr B has suggested methadone to me but I haven’t pursued this yet.

Joolsg profile image
Joolsg in reply to martino

I'm hopeful that the UK medical profession will catch up with the best US RLS experts. However, as most UK doctors don't seem to think RLS is real, it will be an uphill battle.

LanaCSR profile image
LanaCSR in reply to Joolsg

Good luck with your GP appt, Joolsg!

Joolsg profile image
Joolsg in reply to LanaCSR

Thanks Lana. It'll be a GP who doesn't know me, knows nothing about RLS so it should be interesting. Normally I hand over printed copies of research articles but as there are no face to face appointments, it will be an uphill battle...

LanaCSR profile image
LanaCSR in reply to Joolsg

It is so frustrating. I found a great neurologist, but he's in an adjoining state which means I have to either drive the 10-hour round-trip to his office for a face-to-face appt or drive a five-hour round-trip to get just within state lines for a telehealth visit. But the doctors in my little state just don't know how to treat my RLS. It invokes so much anxiety having to do this, but at least he is helping me. Not 100%, but I don't think I'll get 100% relief from anybody. I wish I was close enough to see Dr. Buchfuhrer, but I am literally on the other end of the country from him...*sigh*

Joolsg profile image
Joolsg in reply to LanaCSR

That's a long journey. The US has the best doctors but also many who know zero. A 5 hour car journey here in the UK would get me to Scotland. We forget how vast the USA is. If only we could clone Dr. B....

LanaCSR profile image
LanaCSR in reply to Joolsg

lol...yes, we definitely need to clone Dr. B!! 😂

Shumbah profile image
Shumbah in reply to LanaCSR

Hi Lana, are you still on Buprenorphine if yes get Dr to email Dr Glen Brooks you have his details . Dr Glen will email your doctor back himself .

all the best my lovely : }

Mercurial profile image
Mercurial in reply to Joolsg

Good luck with the gp Jools. What day is it, I’ll be thinking of you 🤞

Joolsg profile image
Joolsg in reply to Mercurial

Next Tuesday afternoon. At least I got an appointment. So many can't get appointments for months at the moment!

Mercurial profile image
Mercurial in reply to Joolsg

I know. It’s so problematic. Good luck on Tuesday, - I really hope it goes well for you Jools.

Joolsg profile image
Joolsg in reply to Mercurial

Thanks😊

rls-insomniac profile image
rls-insomniac in reply to Joolsg

Good luck with your GP appointment Jools. I really hope that you get the help that you need. Be strong! 🤞🍀

Joolsg profile image
Joolsg in reply to rls-insomniac

Thanks. I will try my very best in the allotted 10mins to educate my GP about RLS and to persuade him/her to prescribe Buprenorphine or methadone. It'll be fun. I can just imagine their replies......

rls-insomniac profile image
rls-insomniac in reply to Joolsg

I should imagine it certainly will be! Why are GP's so reluctant to listen to their patients? When I begged my consultant to let me try Temgesic, I suggested to him to let me try it for 2/3 months to see if it helped me. Because it did, he agreed that I could use it for what I'm hoping, will be indefinitely. They do check up on me every 3/4 months to see if it still works. Good luck and let me know how you get on. xx

I was in a similar situation , luckily they leave me alone now only have to check in once a year and this year he just got his nurse to ring my script is due in the next 2 weeks 6 months worth.I always send in the rpeople temgesic/Buprenorphine success emails to mY doctor and Drug clinic doctor

They absolutley love it they say it helps cover them as well.

Im so happy for you : } the more of us on it the easy it is becoming.

You are fortunate that you can get 6 months' worth of prescription at a time. I have to request mine monthly. My consultant doesn't seem to want me to go higher than a 400mcgs dose. That said, I do sometimes suffer with brainfog in the morning but that tends to go as long as I'm keeping active. I also feel a bit sleepy in the afternoons, but again as long as I'm doing something, it'll go away. Maybe a higher dose would make me more sleepy. 😊

I found initally my body wanted to sleep and sleep. I was once told they if you are sleep deprivred your body will demand pay back. I am fine now.

Joolsg profile image
Joolsg in reply to rls-insomniac

Will do. What CCG/NHS region are you in? I know we have different prescribing rules in different regions. And what dose has worked for you? Is it still as effective? My consultant is Prof. Chaudhuri at King's and he has said he has 'no objection' to Buprenorphine but won't prescribe it because he only sees me( by phone!) every 6 months and opioids have to be prescribed on a monthly basis by a doctor who will take responsibility and that has to be the GP. I fall between the cracks here becauseI know GPs are reluctant to prescribe unless and until the specialist says it's ok in writing.

rls-insomniac profile image
rls-insomniac in reply to Joolsg

Hi Jools.

My region is East and North Hertfordshire NHS. The consultant I saw was at the Sleep Clinic at Papworth Hospital. It was through him that I got Temgesic . It was a bit of a slog, but I got there in the end. He wrote a letter to my GP giving details of the doses etc. I emailed this letter through to my GP (although they would have got a copy anyway). I then spoke to my GP practice and requested that they dealt with my prescription immediately, which they did. The Temgesic tablet box has the following wording on it:

"as per respiratory consultant advice" which presumably absolves them of any responsibility as such. I have to request this monthly which I do via my GP's online prescription service.

I take 400mcgs daily which I split into two doses. I take 200mcgs around 6.30pm and the other 200mcgs at around 10.15pm. I also take 100mgs of Pregabalin at that time too.

With regards it working for me. I would say that I am around 75/80% better. I rarely get any symptoms during the day. When they do appear, it's around 4.00pm and later, but they are mild and provided I occupy myself and move around, they tend to go away.

I notice that I do sometimes get RLS during the night. Around 1.00-2.00am, but again the symptoms are mild and go away with movement and distraction. This happens maybe once or twice a week, but they don't last long and I can go back to sleep fairly easily. That said, there are weeks when I don't get any symptoms which is a blessing and a treat!

My consultant did say I could take a further 100mcgs if I have a longer than average car journey if I'm a passenger as I do still get mild RLS sometimes. Maybe it's because I'm sitting in a confined space. I have extra tablets for this.

I hope this is of some help. If you need anything else, please feel free to PM me.

All the best and good luck. E. xx

Joolsg profile image
Joolsg in reply to rls-insomniac

Thanks so much. If GP refuses I'll pay to see a private Neurologist in the UK. Ridiculous but probably the only way to get a result. Papworth is doable for me. Pretty sure Guy Leschziner also prescribed temgesic to someone recently so I could see him.

Shumbah profile image
Shumbah in reply to Joolsg

Hi Jools, Perhaps you could ask your doctor to email Dr Glen Brooks in NY he will happily respond personally g.brooks@nyketamine.com

: } xx

Joolsg profile image
Joolsg in reply to Shumbah

I'll certainly try but suspect they'll say they're too busy etc. Thanks Shumbah.

My family tree on my mom's side has a sordid past with severe RLS, depression, anxiety and unfortunately suicide. If one is genetically predisposed to struggling with mental health issues, adding severe RLS into the mix can be the spark that ignites and fuels chronic depression and other mental health disorders.Knowing that in general it gets worse as we age doesn't help as well.

Having a support system can make all the difference as others have pointed out. Some are lucky enough to have something and some suffer alone. Luckily, this forum is such an oasis for all of us.

Just sending you a huge hug. I couldn’t destroy my husband by doing it but it certainly has crossed my mind.

Thank you 💗

Your post hits home with me. My withdrawal from ropinirole was extremely difficult to put it mildly. My only comfort in that time was the thought that suicide was a possibility.

To be honest I had dark thoughts during a back problem a few years ago where I spent a lot of time on my back on a bed looking at the sky through a window and wondering if this was it. I haven’t felt the same with RLS, probably because I don’t get symptoms during the day so I can forget about it and enjoy that moment. I get woken every night normally several times but I just try to be positive, do something useful like clean or plan tomorrow’s meals and wander about until the urges subside. During my back issues I learned to meditate a bit and to focus on how I was feeling in the moment rather than dwell on the whole issue and what might be coming later or in fact often didn’t come later, and that helped me reduce my overall anxiety and upset over the condition. I think sleep deprivation makes things a lot worse so I occasionally suggest people take naps when they are without symptoms and at least get a couple of hours of restful sleep.

When I went to the doctor during the worst RLS time in my life I said to him: "If you can't help me I will not live till the natural end of my life!" My pains were so terrible that I screamend and cried in bed every night. Another day a woman with severe depressions over a long time said to me: "I think depressions are the worst illness of all cause you want to kill yourself." I replied: "I know that depressions are a very awful illness, I have them for 40 years and I often had suicide thoughts but yes really there are illnesses out there that are even worse and one of them is RLS."

Hi, very good question, I think when ppl do take their lives they can't report back to us,

Itis pssible to live with rls, there are worse things than that you know

cheers

N

Cameronb profile image
Cameronb in reply to Niepowiem

Indeed they're are but rls is a very "your on your own condition"

Niepowiem profile image
Niepowiem in reply to Cameronb

Hi,

sorry I don't think so, star reading our posts. Especially from Manevra. For a quick fix I may take opioids. For long term gaba meds are apparently a choice. Another instant fix (hard to come and comes with mild side effects) is LDN.

cheers, don't give up,

cheers again

N

Cameronb profile image
Cameronb in reply to Niepowiem

I think you misunderstood me, I was referring to the pacing the floor in the dead of night..

Joolsg profile image
Joolsg in reply to Niepowiem

There's no instant fix. Some with severe, refractory RLS have to live with it every day and meds help a little but don't prevent it.There are many who get complete relief from RLS, but many suffer it every day. Getting LDN in the UK is as difficult as getting methadone and Buprenorphine.

Yes of course there are worse things, but this disease has the highest suicide rate of all neurological diseases for a reason. Nightly sleep deprivation wears people down.

Nettles68 profile image
Nettles68 in reply to Joolsg

Hi JoolsgCan you point me please to the paper/study that shows that RLS has the highest suicide rate of all the neurological diseases please.

I would appreciate having this information in my armoury so that I can show it to others.

Many thanks

👍

Joolsg profile image
Joolsg in reply to Nettles68

jamanetwork.com/journals/ja...

ssri.psu.edu/news/suicide-a...

neurosciencenews.com/suicid...

thesleepforum.com/study-fin...

misskyra.com/lifestyle/new-...

I know that RLS UK also did a study when Daragh was Chair and I'll try to find that as well.

Nettles68 profile image
Nettles68 in reply to Joolsg

Thanks Joolsg, very much appreciated.I can't see anything immediately obvious that compares RLS suicide rate with that of other neurological diseases, (just comparisons with other common chronic diseases such as diabetes etc) but I will plow through and read and hopefully see the wood for the trees!

Many thanks for the links, very much appreciated 😊

Joolsg profile image
Joolsg in reply to Nettles68

Seem to remember it was in the EARLS study or mentioned by Daragh who commissioned the study....

Cameronb profile image
Cameronb in reply to Joolsg

Hi, and thank you for forwarding this, I think on whole the medical professionals and the general public regard RLS as a minor, trifling problem akin to something like pins and needles. One sentence in that report totally jumped out at me "The reason for the higher rate of suicide is unclear"...

If anyone in that study had actually spoken and paid attention to someone with severe lifelong rls the reason would be abundantly clear!!!

Joolsg profile image
Joolsg in reply to Cameronb

👏👏

Joolsg profile image
Joolsg in reply to Nettles68

My phone is not letting me share the link to the 2019 EARLS study that shows the suicide rates.linksharing.samsungcloud.co...

Hopefully the above link will work.

Niepowiem profile image
Niepowiem in reply to Joolsg

ldn? try river pharmacy, indiamart too, had success ordering

Joolsg profile image
Joolsg in reply to Niepowiem

Will River pharmacy prescribe or do you need a GP to write the prescription?

Niepowiem profile image
Niepowiem in reply to Joolsg

no scrips req.

Niepowiem profile image
Niepowiem in reply to Joolsg

and even though river pharm.is canadian at the end of the day all drugs coming from india, so before paying ask for covid shipping current status

Suberino profile image
Suberino in reply to Niepowiem

Oh my goodness, when everyday you can hardly function you are that tired, and when nights are hell, there is no quick fix!

Niepowiem profile image
Niepowiem in reply to Suberino

Hi,

been there, I'm with you on this one. This rls site is where all suffering ppl meet, right? But do you think ppl who have overcome rls are here and posting? I don't think so. It is only us who are fighting rls. There are fixes and success stories but we don't get it to know,

cheers

N

Niepowiem profile image
Niepowiem in reply to Suberino

a couple of quick fixes, a lot of wine before bed, 2. opioids, 3, smoke a joint, 4. do household project at 2am, 5.take a sleepin pill etc. do your week schedule, just to mention a few,

cheers

N

Suberino profile image
Suberino in reply to Niepowiem

Hi, I appreciate you replying. I wouldn't know where to get a joint!! Haha - led a very protected life I think.Sue

Shumbah profile image
Shumbah in reply to Cameronb

For me I was torture so badly all day everyday I would think of the poor people in the holocaust and how they suffered. My other thoughts were I wish my cancer would return as I would refuse treatment, I would be so envious when a friend died from a heart attack I know it sounds terrible but I would think how lucky what a way to go.

I get emails regularly from people who can’t take opioids so heart breaking.

If you go into my profile you can see my story.

I do very grateful for buprenorphine I was one of the very first few people to take it thanks to the amazing Dr Glen Brooks in NY.

I truly hope you live in a country where you access this medication to trail it.

HiI am going through this at the moment, I have had sleep issues all my life and get sleep apnea and rls/plm and feel totally useless as I can’t sleep more than two hours a night and that’s on a good night. Even my day time naps are affected.

Please take care of yourself sweetie xxxcx

Cameronb profile image
Cameronb in reply to Sorchap78

Thank you 💖

I have to admit a long time ago, I was that desperate, that much off the rails that I considered doing. I have never been there since. Many a time when this comes up, I try to put myself in the "son who found their mother/father", The mother who gave birth to the girl at her feet. The best mate who didn't know the state of his friend's mind!

It's a sobering thought.

Hi in the small hours unable to sleep and alone fed up of walking around and no rest from the dreaded rls my mind has wandered to the awful prospect of suicide when morning comes I can see more clearly but I sympathise with you

I have considered it. My poor husband has to put up with me being unable to do many of the things we hoped to do once we retired. If I were no longer around he could move on. He certainly deserves better than the restricted life he has with me because of my rls.

So yes, I have considered it, and still do sometimes........an eternal sleep seems very inviting at 3am when I'm exhausted.

Cameronb profile image
Cameronb in reply to Gmc54

If it's any consolation you don't suffer alone chick even though at 4 in the morning it certainly feels like it.. and I know exactly how you feel, you just want the torture to stop and lay down and have a nice long sleep.. ❤️

Gmc54 profile image
Gmc54 in reply to Cameronb

Exactly!

I’ve wondered how many rls sufferers might have took their own life. Particularly before it was known and without treatment… probably drove sufferers to madness, can’t think of much worse than being strapped to a bed or straitjacket during an attack, horrendous. I don’t think I could commit suicide but have thought about it and googled ‘how to’ since starting gabapentin, I know it can be one of the side effects.

Cameronb profile image
Cameronb in reply to amdrew_m

Yeah that's crossed my mind a good few times, being admitted to hospital and bedridden and unable to get over to the medical staff how much torture your in.... Hell

ziggypiggy profile image
ziggypiggy in reply to Cameronb

Been to the psych ward. Not a pleasant experience for an RLS sufferer. All your normal coping mechanisms are taken from you. You are restricted to your bed during certain hours with a roommate that you really don't feel like annoying with any room pacing or flipping and flopping. I did get my normal meds. I was worried because it's an opiate and I thought they might try and replace it with something else. But it didn't work as well without all my comforts and habitual coping mechanisms. This really amped up my symptoms while I was there.Also, your constantly fending off the doctor or nurse trying to calm you down or sedate you with antipsychotics which is there go to drugs but terrible for RLS.

I certainly identify with your feelings, and I have a very caring and empathetic spouse who is incredibly supportive. Those dark winter nights when you are pacing the floor are the worst, but even in the northern European summer time, when it doesn't get properly dark, things can get pretty bad.

If anyone out there feels really bereft and unable to cope there are support services. In the United Kingdom and Ireland you can talk anytime, day or night, to the Samaritans, by calling 116 123, the number is the same in both countries, and you will be put through to the first center available. The service is completely anonymous. You can also email or write to them. They have, unfortunately, had to suspend their face to face support due to coronavirus restrictions, but I am pretty sure that the Central London center, at least, will have that service up and running again as soon as possible after July 19th. Full details are at samaritans.org

95 percent of people I speak to with this horrific disease in its severe form have a suicide plan. I actually print there emails for data collection.I had an email last week from a member from this site they are taking about going to switzerland for a peacful death.

I have told my doctors that should they cease my minuscule 2mg Buprenorpine dose that gives me 24 hour a day relief with zero breakthrough that I will very publically film my whole story right through to the trip to Basal in Switzerland I will not hesitate.

I have been symptom free since october 29th 2019 I had to fly from Australia to the USA severtal times until I found a doctor or 3 who agreed Buprenorphine was the drug for RLS.

I did a clean switch from

20 mg slow releaase oxycodone

2 x 5 mg endone

stillnox

medical marijuana

to 2 mg buprenophine , even my blood pressure returned to normal and they ceased my BP medication.

Now I love my life yes I suffer some PTSD from the trauma of what I went through no wonder I used to stand for 2r4 hours a day like a horse in a paddock, I could no longer eat , i would struggle to swallow 1 spoon a day . There is no doubt in my mind I was heading to organ failure which did not matter as I was about to kick in my suicide plan, I had told my husband and started telling my children. I had a very lucky last minute email from the USA so I checked myself out of hospital and flew to the USA the next day within days I had my life saving appoinment.

I am so looking forward to Professor John Winkelman who was one of the Doctors I met with in the Boston he is planning clinical study on Buprenophine for RLS.

Gmc54 profile image
Gmc54 in reply to Shumbah

One of those occasions when you are so lucky to live in the US!

Shumbah profile image
Shumbah in reply to Gmc54

Wish I did : }

Cameronb profile image
Cameronb in reply to Shumbah

Thank you thank you, this is a awesome, amazing post and I think it speaks for a lot of us when you describe how truly desperate and tortured we are. I only wish the medical professionals had a real proper insight into how life destroying this condition is and how it can take you to the very edge.

Now can I be nosey and ask how you take your buprenophine? Because I'm on shed loads of oxycodone and would love to not be dependent on it. 💖

Shumbah profile image
Shumbah in reply to Cameronb

That’s not nosey

It’s a 2 mg sublingual tablet

I break it up because I sometimes only need half the dose so I take what I need. It works really quickly.

What country r u in ?

Cameronb profile image
Cameronb in reply to Shumbah

UK ❤️

Shumbah profile image
Shumbah in reply to Cameronb

There are a few people in the UK and on this site who have been able to access Temgesic 0.02 which is the

micro dose version of buprenorphine and has a 5 hour half life .

Some are getting absolutely amazing results.

I’m happy to email you my medical letters from Dr and Professor regarding Buprenorphine for RLS

If you want them send me a message with your email address.

Before the buprenorphine I was at my doctors once to twice a week in the end I had to tell my doctor I was suicidal his head spin around so quickly he nearly broke his neck.

He treated me much more genuinely and really showed an interest because they have a duty of care if we tell them we are going to end our life.

Ps the West Midlands is my old stomping grounds , I usually visit my son and all my friends once a year.

Please, I'd love to have these letters - my email is houseofhorrors@talktalk.net Thank you so much

Done check your junk mail, let me know if it has not shown up All the best

your email keeps bouncing please email my so i can reply kester@aghequip.com.au

ziggypiggy profile image
ziggypiggy in reply to Shumbah

Can you please elaborate on your experience of changing from slow release oxy to buprenorphine. My Oxy works well but I'm always on the lookout to fine tune any treatment. My main complaint on Oxy is the mild euphoric high I get at night that sometimes delays sleep onset. Also, like most here, there is always the worry that a forced provider change or retirement of my current doctor may result in a forced medication change. Though, I suppose buprenorphine wouldn't solve this particular worry.Is buprenorphine generally sedating?

Was the transition of withdrawal from Oxy to Buprenorphine pretty brutal?

Shumbah profile image
Shumbah in reply to ziggypiggy

Hi Ziggy there was zero withdrawl simply took the buprenorphine instead of oxy. No it is not a sedative some people infact can suffer insomnia and have to add a sleeping pill. I am lucky I do not have this problem .

The beauty of buprenorphine is that it hangs onto less receptors in the brain hence NO euphoria the 24 hour half life means no break through. Also according to Dr Glen brooks in NY it has added health benefits to the over 50 brain re depression.

Oxy caused me to suffer from terrible memory loss which fortunatley has rectified.

I also asked my doctor who he would recommend for the same care should anything happen and he did he also did a 20 minute hand over with myself and the new GP he recommended before he moved practice. The reception staff said I was the only patient he did this with.

I hope that helps

ziggypiggy profile image
ziggypiggy in reply to Shumbah

Thanks for the update. I may be considering a change. Let me know if you experience any other differences.Yeah, I need to make sure my doc writes up a transfer summary. It's bound to happen at some point.

ziggypiggy profile image
ziggypiggy in reply to Shumbah

I wonder what would cause insomnia for some? It's the euphoric feeling that keeps me awake with Oxycontin. With less of that I assume sleep would be easier. Hmm.

Shumbah profile image
Shumbah in reply to ziggypiggy

all Opioids are different the only one that keeps me awake is morphine if I take 5mg for pain I perk up and can go out and party. It is the only opioid that I have that side effect from.Different opioids hang onto more or less or different receptors in the brain.

We all react differently to different antibiotics , antidepressants this why there is so many drugs that treat the same things

I tried but something lets say supernatural stoped me?? I remember loosing consciousness and then woke up to find the power cord I had wrapped and knotted around my neck neatly coiled up and placed on the floor well out of my reach. Sorry if this is too graphic. I totally understand your feeling I have gone as long as 14 days without sleep at least 3 or 4 times. So tired all I can think of is sleep can't concentrate or enjoy tv to kill the time. So out of energy it feels good to stop breathing for a moment. All the while unable to stop jiggling and wiggling without feeling that I need to jump out of my skin. Its like your own body was designed to torture you. It would be wonderfull if we could see an actual cure in our lifetimes.

I really, really hope the medical profession reads this thread. It's clear that the people posting are completely calm and rational in considering/talking about suicide.This disease needs to be taken seriously by doctors. I'm so tired of not being listened to.

Sigh......

It needs to be shoved under somebody's nose but who's nose?!!!

Joolsg profile image
Joolsg in reply to Cameronb

Have a look at the pinned post about the Campaign to get doctors educated. The email addresses of RCGP, ABN and medical schools and your MP are in the post. If we all write and tell these stories, the medical profession MIGHT start to take us seriously.

The only time in my life I seriously considered this is when withdrawing from the DA drugs. Weirdly I I knew the thoughts were wrong, but I still was planning or setting my intentions. (Very hard for me to express)

So my question is for all the suicides. What drugs were they taking? This should be public knowledge, I think we have a right to know.

I too have considered suicide many times with my battle with RLS over the past nine years. I am lucky in the sense that it doesn’t affect me during the day or when I sit down (as much), just at night. I feel for the people here who suffer 24 hours a day.My version of RLS involves either pain in my heels/calves or the horrible crawling, tingling, tugging feelings and the urge to move that Manerva describes as “like trying to hold your breath all night”. I generally don’t get much, if any, sleep at night and I sleep in half the day (if work permits) It really is a terrible and torturous thing to deprive a person of sleep.

I wish I could be a normal person and go to bed, sleep 8 hours and awake happy and refreshed to start a new day like I used to but sadly these days are gone it would seem. I’m an insomniac now even without the RLS. Every night when the demons come I stand and look out the window on a world that seems settled and content. It can be very lonely even with companionship let alone without.

At my worst moments of torture I have envisioned taking my own life. Most forms of suicide involve suffering which puts me off though. I’m suffering enough as it is in life why should I suffer in death too? Also, this may sound a little silly, but I couldn’t commit suicide whilst suffering at night because there’s this small part of me that’s worried that if I killed myself whilst suffering an attack of RLS that I might take it with me to the afterlife... AND THAT SCARES ME MORE THAN ANYTHING.

As a result of my experience with RLS I have become a strong advocate for people being able to choose to end their life in a peaceful and relaxing manner if they so wish.

Please go into one of your pet rants. I’d enjoy it…. Especially now at nearly 4 am!!!

Recent research is showing that there are different types of RLS. The inherited kind doesn’t seem to be affected by what is eaten, drunk etc. or by psychological factors.

I agree. Severe RLS which has not responded to any medication must be a very special form of hell. I can quite see someone wanting to commit suicide in order to simply be at peace. Recent research is showing that those with inherited RLS find that what they eat and drink and psychological factors do NOT affect their RLS, unlike others whose RLS is caused by other factors. It’s early days in the research but interesting. I hope you find a medication (not a dopamine agonist as these can case augmentation) that suits you. Hugs.

Such as which adaptive therapy's?

Because I can talk myself into having rls I just can't talk my way out of having rls.. 😔

ziggypiggy profile image
ziggypiggy in reply to Cameronb

Totally get it. It's seems unreal. I would be riding in a car with my mom. I could see her RLS acting up for her and sure enough soon after mine kicked in. This has happened more than enough that for me it's no fluke. My symptoms often increase sometimes just by reading posts on this board when I'm really into the discussion.

Hello Cameronb, I have many times thought of suicide. I have been up walking day and night for 3 or four days before I pass out for a couple of hours. How much can a person take, I wonder. At least if one could sleep and then continue the torture, but not. It is day and night and day and night. NONSTOP for me. Oh yes, I have thought of suicide. By the third night of no sleep, I am hearing voices and seeing things. I go outside and scream, come inside and cry. I think of a million ways to commit suicide where it would look like an accident, but can't think of one. I know I can't go through with this because there is no way I would set such an example for my grandchildren and great grandchildren.

People have no idea how much torture we go through. I am coming off of 1.5 mg of Pramipexole, due to augmentation, and I have to have major surgery on my back or my legs will get paralyzed. It is so very painful to walk because of my back, so I use a stationary bike to satisfy the RLS. I wonder, why the hell am I here? Taking up space. I have no life and in constant severe pain. I have been dealing with this for 35 years. It started with a car accident, then neck surgery, then Fibromyalgia and Restless Legs and numerous other surgeries.

In conclusion, to top it all off I'm fat from compulsive eating.

If you think I am feeling sorry for myself, you're right.

Cameronb profile image
Cameronb in reply to Josana13

Aw bless you chick, you have every right to feel sorry for yourself, I too look at other people and think why me? And yes I know other people are going through other things and in some cases quite possibly worse.. but who can say what is worse until you experience it for yourself!! I've also got fibromyalgia along with other medical issues and have had restless legs since I was 15.. I'm 55 now and it's got progressively worse over time and I also can have restless legs for days at a time.. not the have it for a couple of hours and go back to sleep type!!!

Can I ask have you tried obtaining opioids from your Dr? In my experience it's the only thing that has ever worked and believe me over the years I've tried everything, I've also been through the hell of augmentation as I think most people on here have. Sending massive hugs..

💖💖

Josana13 profile image
Josana13 in reply to Cameronb

Hello Cameronb, sorry for that outburst. I am having a "feel sorry for myself day thinking about the past". Everything I previously said has not happened for one month. I HAVE BEEN FREE OF RLS FOR ONE MONTH and I have been sleeping.

HOW? I ordered a supplement called MAG R&R for my husband, who suffers from leg cramps. One night after several days of walking with RLS, my husband suggested I try it. Life has not been the same since. It worked immediately and is still working. Everything else I have tried has only worked for a couple of days, but this stuff is still helping. It is available on Amazon.

Anyway, you asked if I was taking an opiate, I am taking Oxycodone for my back.

Cameronb profile image
Cameronb in reply to Josana13

Hi again, I'm aware magnesium is often recommended for rls and I'm so so pleased it's worked for you 👍😁,I've tried it myself with no luck 😔

Cameronb profile image
Cameronb in reply to Josana13

Thanks for explaining.

If I start thinking about it when I'm in bed and haven't taken any opioids invariably it will bring it on.

In reference to rls being up to a point psychological

Thank you

Sorry I'm afraid I can't agree with you here, I don't think they're is one person on here who would not take control of their rls psychologically if they could. Most people I've spoken to about the condition do see it is to blame for their poor quality of life, I count myself in that number.

I'm pleased for you that you have managed to find CBT a help and also thank you for the spell check..😁

Before I found a Dr who would treat me by using the Johns Hopkins study, now protocol, I was seriously considering going to the State of Oregon, where Euthanasia is legal. Thanks to the Oxycodone, plus Magnesium-with so potassium citrate. My life has changed, in addition to serve RLS, I have serve PLMD. Before the Johns Hopkins treatment protocols, I had seen 5 different Drs, and tried every drug that is used by uniformed Drs. The Augmentation caused by Ropininal and the increased agitation caused by Tricyclics. The Nuerontin was not helping and it blurred my vision so much I could not safely drive a car. I do understand the struggle that Serve Rls victims have. I know most Governments with Government managed health care won’t prescribe opiates. I’m an American Veteran and the VA Dr I have refuses to treat me with opiates! Good luck to all.

It's a touchy subject. It can be shameful and judgemental to some to view anything shared in this thread as negative thinking or having a negative influence. The emotions and feelings shared here are all valid and very real. People bonding over the thought of suicide or euthanasia because of RLS is completely normal and can be very cathartic. It may seem extreme to those who don't deal with chronic severe depression. Severely depressed people don't take suicide or suicidal ideations lightly. They tend to have them more days than not, and have explored all the pain that's leads to such thoughts endlessly. They have also explored the consequences to no end as well. I see no glib are desperate posts here. Everyone seems fairly levelheaded, and I believe fully understand what they are typing and how it will be received. Such raw and honest words are only written out of the trust and comfort we have come to expect here.

I'm glad you wrote your post. It may not jibe with the theme of the thread, but it provides a balanced perspective.

I just may be a bit sensitive to using the word "negative" to anything said above.

Peace everyone.

Another problem I have with RLS concerning my mental health is that is has led me to believe I have no place that is "safe". For most people your bed and bedroom are considered our personal refuge that starts from crib on up. A comforting safe place. Once RLS set in, that was taken away from me. I learned to despise my bed and bedroom. It became a torture chamber from puberty on. Anxiety began to set in over the years. I still felt I had no safe place. As hard as I tried, nothing could replace that feeling of safety. Severe general anxiety still exists to this day because of that. I rarely ever feel comfortable anywhere for very long. After a few hours it gets overwhelming and I feel the need to leave. This gets repeated over and over again day after day. Suicidal ideations naturally occur when flare ups are severe, as a means to alleviate the pain and discomfort and find relief. It's just part of my mental journey with RLS. May not compute with others here. But it's a biggie for me.

Cameronb profile image
Cameronb in reply to ziggypiggy

Totally with you on this, I literally at times dreaded even going in my bedroom, the place of torture...

Cameronb profile image
Cameronb in reply to ziggypiggy

I also think is very telling and interesting that most people use the same word to describe rls... Torture

I’m sorry I’m late to the party on this thread. I really appreciate you bringing attention to this topic. My RLS and PLMD was so bad a couple of years ago that I was getting maybe an hour of sleep a night for months. I was so tired during the days that I definitely just wanted it all to end and was calling suicide hotlines daily and just crying on the phone. This shit gets dark sometimes and I don’t know that I would have made it through if it wasn’t for wanting to see my daughter grow up. Sleep deprivation can cause such anxiety and depression and my heart just aches for everyone battling this affliction. I’m so thankful for this group of people that can come together and truly emphasize with one another. Have a great weekend everyone.

Cameronb profile image
Cameronb in reply to Jimbo77

💖

Kaarina profile image
KaarinaAdministrator

Due to the sensitivity of this thread we strongly feel it should be mentioned that if anyone is in a very dark place there is help to be had from people with experience who can be contacted through a list of hotlines ie : nhs.uk/mental-health/feelin... This link includes details of the Samaritans.

We would urge you to talk over your situation with your doctor or a health professional you trust so that they can try to help you through this.

Just to add my support to Kaarina's comment.

No matter how calm and rational anybody may feel about making a life ending decision, I don't think anyone could truly claim to being truly objective about it.

I know what it's like to feel alone especially at night, but for me even in social or other group situations. it may be hard to find others who understand or appreciate what you're going through.

Please talk to somebody as Kaarina suggests.

Kaarina profile image
KaarinaAdministrator in reply to

Thank you, Manerva.

Please read my Post...For Those Contemplating Suicide. You are at a risk with a family history. You only get one life, so value it.

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