💔 I have lost to many people recently to RLS Let their deaths not be in-vain.I’ve have a plan to bring more exposure. Will u help me X

[Shumbah]

No I’m not asking for your money Just your truths.

instagram.com/rls_stories?i...

202O I did a YouTube video of me going to the drug clinic to get Buprenorphine .

I also set up an RLS page on Instagram that I have not used .

So although you don’t always see me on here most days even in the last month whilst I was in the arctic circle on holidays with my supportive caring husband , he is trying to sleep I am hiding in the bathroom making calls , messaging , and emailing , even contacting doctors in Australia for people who were going to … Well you know . I can’t stop because this disease won’t .

I have received several videos from people with their goodbye message and some attached a text message asking me to broadcast it.

I’ve lost 3 people in the last 5 weeks to this vile disease.

In talking to people I have released there is so much we forget to mention to doctors Questions even I was not asking such us what do you eat, tell me what 24 hr day looks like for you at different ages what do your worst days look like , tell me about your best days , anything unusual in your childhood , What is your parents sleep like , tell me how how your children sleep.

When I started asking people who are refractory and had suffered for a very longtime. What is your diet like - I learnt they barely eat , they live on hydration drinks, hydralyte iceblock , sustainage drinks etc and a couple of spoon full of food and they suffer , nausea , vomiting , pain , dizziness from not sleeping the list is lengthy definitely not restricted to lack of sleep and pacing the floor, Chronic pain was a big one the men often say when they get up they feel like they have done a round with mike Tyson of course they said it is really hard to describe .

I thought I was the only one who barely ate for 9 months and suffered the above as well as all the other horrific symptoms.

One of my 90 min calls tonight a young man in the UK who has gone from working a full day to 20 minutes he is the sole provider for his young family and has Avery physical job

As the call went on and I was asking questions he opened up more and more you could hear the penny drop . He thought he had lost the plot and his memory is failing and that his life was over After a battery of test for MS and a plethora of other tests he was left doubting himself as the doctors did a full work up and told him there was nothing wrong at all.

It made me release how many people become so weak we cannot advocate for ourselves so we go to the doctor and we don’t start at the beginning , we don’t think to say I can no longer eat a normal diet and I have been living on energy drinks and very little food for 9 months .We don’t mention our childhood symptoms, how many family members that suffer , that we can no longer drive a car. That we can’t do the shopping our partners have become our caree , that we have to lie on a blow up mattress. That when we do sleep we can unknowingly lash out and hurt our partners .

So I need to do more , and I would love your help , I have been putting it off for year.

You hear ice bucket challenge you instantly think ALS .

You here Willis Ekbom Disease you here HUH , you say RLS occasionally someone has heard of it but they don’t know what is , that it’s degenerative that more children have it than epilepsy.

It’s time to put faces to this disease thousands and thousands.

So please I don’t care if you want disguise your self use a pseudonym name or the handle you use on here Shumbah 😊

Its good to say a name and country and your job or what was your job before retirement or forced retirement .

Short videos are easier to email 60 seconds I believe .

Even if you do a few in the same day on different aspects. We are not firm stars so don’t fuss with your looks.

Examples

Have you had a proper sleep study

Age of first symptoms what were they

How it progressed.

How did it effect you life

How you have been treated by doctors and family ,.

know one lady who’s husband insists she stops her opioids

Are your parents night walkers

You children

I did not know how many nieces and grandchildren suffered until I asked.

How it’s effected your social life , can you drink.

Your diet

Sensitivity to light , sound

People envy

Will to live

If you have an exit plan be careful how you say that , it’s important for people to know .

Fear of aging , nursing homes etc

Can you catch a plane

Has it cost you your job

Medication Side effects

Augmentation

Things you have been told to try bar of soap, yes doctors are still saying it , I heard it from a man last week

Natural things your tried

Successes, failures

What did your sleep study reveal or a copy with anything sensitive blacked out

Pain

Areas effected

Videos of try’s g to sleep

Trying to watch TV all those torturous things we put up with

You can do as many as you like as often as you like as we need it to look busy to draw in the 5 million doctors that are on the doctor hash tag.

Now I know that myself and others have been trying varies doctors for a clinical trial on Buprenorphine because it has over a very very high success rate.Dr B is current doing a very small one on 55 people not ready to publish yet been running for 2 years

When a big trail transpires I want the page very established .

I have plans to raise the funds at this stage last price Proff John Winkleman told me was 100,000 usd, I think the trail most likely will be in the UK.

The challenge I am thinking of is the night walker’s challenge, how long can they pace , stand without sleep the record is 35 hours

I will hold art auctions which I would donate and all the funds raised. I live in a high rise of 150 units amongst people with deep pockets and they do a lot of fund raising events .Some have really seen me suffering some even cooked me special brownies in the hope it would help.

It’s time the world new what this disease was .

I did my first 2 posts today a video and a post and I was able to attach Professor Richard Allen’s last video he record in Vancouver.

I plan on posting links of Dr Bs fabulous YouTube videos.

I am flying to New York to interview Dr Glen Brooks and I have some other doctors up my sleeve.

I have vile letter from doctors about patients I have permission to post I will black out names and good news letters .I hope I can get the sizing right.

The page directs everyone to healthunlocked .com Let’s w

See how our numbers grow when I joined there where 12000 I think

I know it’s tough PTSD reliving for those who are now well.

We would not be where we are today if we had not helped each other it most certainly was not because of majority of the doctors.

Helping me with this not only helps us but our children and grandchildren

Instagram page is rls_stories

My email is [e-mail] if I receive a video or text I will send you a media release for to sign or you can send me an email giving permission for me to use your information on social media platforms I will also try to do TikTok , threads anything I can. If I have to I will pay someone to help me .

Let them not die in vain

How does that sound ?

Click here below I hope the link works , I have spent 15 hours today on all this might be time to eat it’s been 24 hrs 😂

instagram.com/rls_stories?i...

[Madlegs1]

Page won't download. ??

[Shumbah in reply to Madlegs1]

So weird tried to send you a screen shot

Did it go to redirection notice then click the blue link on there too . I tested it and they are both working please let me know if you are having a problem. It has worked for Jools

[Joolsg]

👏👏👏👏I know of one person who died as a result of a fall, trying to walk off severe augmentation symptoms.

I will send you a video to the link provided and keep it short and try not to rage against the medical ignorance too much.

Hopefully, little by little, we'll chip away at the medical profession and make them see that educating doctors correctly to AVOID dopamine agonists and to treat with iron infusions first, then pregabalin, then Buprenorphine is the best way to treat RLS.

Good luck.

Xxx

[ziggypiggy]

Love the idea. Pushing me out of my comfort zone do to something like this. I do want to tell my own story and that of my mom. Need an Insta account first then face the anxiety.

[Shumbah in reply to ziggypiggy]

If you can do some short clips and email them to me as well as your own account it will increase our exposure.

Sadly emails can only send about a minutes worth.

Short clips people engaged to

Thank you for your positivity to tell your story

[ziggypiggy in reply to Shumbah]

I assume then if I get an Instagram account I upload longer videos?

[Shumbah in reply to ziggypiggy]

Absolutely, if we all do it imagine share each other clips.

[Boldgirl45]

Hi Shumbah - can you tell me why people don't eat when they have this disease? Is it the medication?

[Hidden in reply to Boldgirl45]

I can tell you my experience of struggling to eat. I have been struggling finding a med to suit me so spend every night pacing very little sleep. So energy level is low i didn’t have the energy to cook then face the washing up. I have been mostly eating cereal , sandwich or toast then cereal again for dinner. Easy to do very little washing up which i would do in the night when up pacing.

[Shumbah in reply to Boldgirl45]

95 percent of severe RLS have an exit plan to put it nicely . I am not sure if you saw a post the other day from a person who sad their brother did not make it and he has been blessed to have been on Buprenorphine patches for 10 years now

He was Started on a low dose patch it needed to be be increased just the once then the dose was perfect and 10 years on he is still living everyone’s dream on here to sit watch a show , go to out to dinner , theatre ,sit on plane, drive a car .

.Bless him for letting us know because who knew 10 years ago that Buprenorphine was the answer certainly not me and I nursed for a decade when I lived in the UK.

[Boldgirl45 in reply to Shumbah]

Thanks both, some very sad stories from within the RLS community.

I ask about appetite as my elderly mum seems to have none - she eats very little indeed. I am wondering if it's the medication - Ropinerole and Zapain.

[Shumbah in reply to Boldgirl45]

Is he still restless

Her age please ?

[Boldgirl45 in reply to Shumbah]

Yes still has them unfortunately. Plus a whole host of other things sadly! She’s 80.

[Shumbah in reply to Boldgirl45]

If her RLS is bad it’s likely that , it’s a killer truly sure I have been heading to organ failure twice vile disgusting disease that why although I’m well I can’t stop and smell the roses because I need to fix this for 98 percent of people then and only then will I stop .

[TheDoDahMan]

Shumbah, your energy and compassion are lifting my spirits. May this be the beginning of something grand! Bless you!

[Shumbah in reply to TheDoDahMan]

Thank you , it’s incredulous he hours that quite a few of us spend on this stuff. So now I can sleep I often can’t because there is so much to do and everyone needs help. I am grateful for the help I received .

I Help a lot of people the one thing ask is that they impact their new found knowledge. Most don’t I will hear if they have a question.

[Shumbah in reply to TheDoDahMan]

Thanks please get people to follow my RLS _stories page on Instagram because it is the key to make it real .

All the hours I spend in this realm Is incredulous as is Jools and I a couple of others.

The should be smelling the roses and sleeping like cats flopped on a piano now we are well but by Jove I won’t .

Some days I work 36 hours others 24 and I hardly get time to eat one bowl of weetbix in a day lol or an peppermint icecream it’s bonkers but I honestly feel I can see a slither of light now .

If everyone took to instagram and did videos we would blow this thing up.

Thank by you lovely worlds please please push that page it’s not for my benefit it’s for all the people still suffering 😊

[Maystamper1]

I’ve had this syndrome (ha) for most of my life. I’ve taken many medications for this mystery syndrome. Take the med Requip for 18+ years I experienced side-effects (compulsive gambling) that has ruined my marriage, financial stability and life. Many times I think suicide. The MD’s that prescribed this medication were the ones who discovered this side-effect. But OH it can’t be really proven so just live with what happened. I list over $280,00 which I will never recover. The RLS has finally won and ended another life.

[Shumbah in reply to Maystamper1]

I have emails with those horror stories 💔

[Maystamper1 in reply to Shumbah]

And professionals do not “really” recognize this as a side-effect. I just read they changed the name of the drug Requip and no gambling, sex addiction or other devasting side-effects were listed.

When it was discovered that there were no warnings on this medication on the med sheets like this it was secretly added so the company could say “see it’s there”.

Where was it all those years I took this awful medicine?

Another life totally ruined. Oh well….

[Truthsword]

I had no idea RLS had proved fatal to so many. I am 73 and am just now finding what helps. If it weren't for my faith, I may have ended that way. I am currently on the histamine diet and almost completely off gabapentin. No symptoms! It is diet. Sugary drinks....bad! You are so kind to be helping others. God bless you.

[yhsbirny]

Please, I do not mean to belittle you or your situation (or that of anybody with RLS) and this question comes from lack of understanding, but when you say you "lost" people to RLS it implies they died, and from the little I know about RLS, I did not think it was considered fatal. Did they commit suicide? Did they die from related causes (maybe starvation, as you imply). Any light you can shed on this will help me (and I think many others) overcome our ignorance about RLS. Thank you.

[restlessstoz in reply to yhsbirny]

Hi yhsbirny, yes, Shumbah means that people chose to end their life rather than continue trying to live with the torture that RLS can be. Jools mentioned a person who died as a result of a fall due to RLS. I was one who really was considering the alternative to living when I was augmenting on Pramipexole. Weaning off it was hell. Thanks to Shumbah and her experience and information which she freely shares, I am now on buprenorphine, the patches not the oral medication, and it's helping me live a near normal life.

[Merny5]

shumbah, thank you so much for stepping up to bring awareness to the general population as well as the medical profession. I want to thank JOOLSG as well for her dedication and perseverance! I commented on your instagram page and I am willing to assist you with my story as RLS and dopamine agonists have destroyed much of my life!

[Drls]

Hello Shumbah, I echo many of the comments here, thank you for your tireless afforts. Unfortunately I appear to be one of the people that buprenorphine does not work for - however I am persevering with the dosage in the hope that new research will present alternative options soon.

The past year for me has been hell due to me falling and breaking my foot having had no sleep for 4 days and nights - it has taken almost a year for my foot and leg to recover enough to go for daily walks so I am so delighted with this ability to move that I am managing to cope with the continued limited sleep by walking more.

It is indeed a tortuous existence to have refractory rls and limb movement disorder which I now have too - I will support your efforts along with many others and thank you for caring xx Dawn

[Shumbah in reply to Drls]

Hi lovely what dose bup / I have one lady who had to take 8 mg subliqual no naloxone that worked she is no down to 4 mg and living her best life.

[Drls]

hello Shumbah I am on 0.8 mg sublingual buprenorphine plus 150 pregabalin - the Dr doesn’t want me to take more than 0.6 mg but I have put it up. I think the problem is I am on too much pregabalin to increase the buprenorphine any more…the combination def affects my breathing . But when I’ve tried to reduce the pregabalin by 25 mg at a time I’ve got really bad withdrawal symptoms and have had to put it back up

so my next plan is to split the 25 mg pregabalin tablets and reduce by 12.5 mg a week / two weeks. And then when I am 25 - 50 down to try upping the buprenorphine to 1 mg etc

Unfortunately I seem to have severe withdrawal when I reduce anything ! By keeping changing from 0.6 to 0.8 buprenorphine I was having terrible withdrawals too …..

However I need to move forward and give the buprenorphine a full go before trying to come off so that is my current plan .

In your experience how much buprenorphine do people need? X

[Shumbah in reply to Drls]

Any chance of a photo

Is it Mcg or or mg

Just checking it’s not 5 hr half life version

[Shumbah in reply to Shumbah]

When you can please send me a pic it’s midnight here so no rush .

[Drls in reply to Shumbah]

I’m currently taking two

Box of tablets

[Drls]

hi it’s the same as jools takes - accord brand - im taking two 0.4 tablets …. Can’t take photo at the moment not at home - think it’s mg - 25 hour half life .