So I'm Simon. I am new to this forum, but unfortunately I am far from new to WED/RLS.
For as long as I can remember, I was a fidgeter. It’s how my mother always described me - and quite accurately too. Long journeys in packed cars, sitting in tiny seats surrounded by others at the cinema, sitting on the sofa, and going to bed. It was always... uncomfortable, painful. For 30 years I endured countless visits to GPs and various specialists and their insistence that I had growing pains, depression, an iron deficiency, sleep deprivation, a central nervous tick, sent for MRI’s, told I had an abnormal fundus… I still don’t know what that one is… and then back to depression again.
I don't blame them. Apart from the fact that I no doubt look pretty depressed, the majority of the medical professionals I encountered knew woefully little about WED/RLS.
It took moving a hundred miles away to the South West and a brand new doctor to finally be diagnosed. I've been taking a steadily increasing dose of Pramipexole for the last 5 years or so, and along with some lifestyle changes I am able to mostly manage my disease. Of course, it is far from a cure. I have good days, and have some not so good days.
But during my 30 year journey I read about other sufferers - all with their own story, shaped by their individual experiences. The severity of their condition, pain relief, support and diagnosis.
Around 5 years ago I founded Red Dog Productions, a local video production company working with bands, businesses and communities throughout Bristol and South West UK. In this time I have been lucky enough to interview so many incredible people, working on amazing initiatives - such as The Bristol Energy Cooperative, Bristol Women In Music, Musicians Against Borders.
Now I am putting together a series of videos on sufferers of WED/RLS, and am inviting any of you to be interviewed and talk about your experiences with the disease. Earliest memories, diagnosis (incl. challenges in actually getting diagnosed), treatments - successful and otherwise, living with the disease - work/home life, and anything else you wanted to share.
Your interview would then be edited together with those from fellow sufferers into a video (or potential series thereof) to be shared across social media.
Depending on the volume of interviews we are able to conduct, our primary goal would be to produce one overall video on WED/RLS, featuring clips from a number of interviews, with links (on screen and in video description) to full(er) individual interviews.
In addition to interviewees, I would love to hear from any WED/RLS organisations who would be interested in help with things like marketing and promotion.
My story is much longer than what I have shared here today, I didn't want to bore you all straight off the bat. But I'm more interested in your stories. And above all, I'm interested in telling your stories.
If any of you have any questions, feel free to ask them below.
If you would like to discuss being interviewed, or taking part in any way, you can drop me an email via [Email address deleted - not allowed on our forum)
For those curious, we have a Showreel of our latest work here:
Many Thanks,
Simon
Simon Regan
reddogproductions.co.uk
(Ps. Sorry for calling it WED/RLS the whole bloody time!)
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Ha! Just checked your profile and yes New Zealand may perhaps be too far on this occasion. Depending on interest levels, perhaps we could sort something out over the internet. I will certainly keep you in mind, and will most definitely share the finished piece with everyone on here.
There are plenty of us all over the world who would love to actually see something substantial in the form of BIG documentary to let people including Drs understand just what RLS is like , anyone we try to explain this illness to just doesn't understand so please try to get the finished program onto WORLD WIDE TV and get it stated as an illness and should be treated like one
I recently participated in a film project on the early women's movement in Boston during the late '60s and early 70s. The interviewer used Skype and FaceTime to record the people who were too far away. She says she'll be able to edit from this footage. Just an idea. Also, the American RLS Foundation has a wonderful 20 minute video about the disease, filmed in the form of personal interviews. You can find I t on YouTube. Sorry I don't have the link in front of me but search YouTube for rls.org or find it on the website, rls.org. It may give you some ideas. They used the beautiful landscape of New Mexico as the backdrop.
Hi Kaz, that is my worst nightmare, that my two children get RLS. It would really kill me if they had to suffer as I have done since I was 13 years of age. It is bringing tears to my eyes even thinking about it and typing this...... How old are you boys, and how badly are they suffering now? Best wishes to you all x
Hi Kaz, that is a big fear for me. My wife and I don't have any children, but we hope to - and I really worry that I am being unfair by potentially passing this disease on to them. The lack of research and awareness (amongst both the general public and the medical profession) is causing real harm for sufferers present and future.
I definitely agree that this is something you almost need to experience to truly understand. Well hopefully I can get enough interest in this project and we can help get the message out there.
Thank you for replying and sharing your experience. Are you happy for me to add your name to the list of potential interviewees?
But I been waiting till I was 7 to tell people I I've felt
I broke my foot to stop the pain but I was seven
Makes me feel like I needed help then
I did , but it wasn't till years later when I had my foot X-ray, doctors said have you ever broke your foot
I kept quite
But the pain stop
When I kicked the z bed
And no doctor understand
Hi Simon,
I would be very interested in taking part and sharing my ghastly experiences.. if we are not allowed to put our email maybe look at my website and find my contact details.. My name is Anita. I live in Devon.. childrescue.net I am cofounder..
Anyone who has not suffered this awful and mostly unknown condition would have no idea what we go through. Good on you to publicise it..
Thanks for your reply and willingness to share your story! This is something that I have wanted to do for a long time, and has been in the planning stages for a while now. The ordeal I had to go through just to get a diagnosis and acknowledgement that this pain was real - and not some figment of my exaggerated imagination - was maddening and hugely disappointing.
I will add your name to my list of potential interviewees and be in contact with more details.
Thank you to everyone for your interest in contributing your stories. I've already received quite a response, but wanted to quickly expand on a few bits based on some frequently occurring questions so far...
At the moment we are still in the early stages of pre-production. At present I am researching websites just like 'HealthUnlocked', looking for fellow sufferers who may be interested in participating - just like some of you.
My hope is for my crew and I to travel to as many people as possible, and simply listen to their stories. I will have a list of prompts, just to make sure everyone covers the same broad subjects (Earliest memories, diagnosis/challenges getting diagnosed, treatments - successful and otherwise, living with the disease - work/home life) but my intention is to let everyone tell their story, rather than conduct any kind of formal interview.
But all of this will naturally largely depend on how much interest I get, and from how many corners of the country.
Ultimately, I'll then turn those stories into something we can share with the world - across the internet.
I hope this helps answer some of your questions. As Kaarina mentions, please PM me any questions or notions of interest.
Hi Simon, I live in Surrey and have just taken part in a study for a mature student at Westminster University who is doing a study on RLS. I would indeed be interested in helping out in any way I can, being a suffering for over 30 years. I will PM you with my details.
Wow, I would love to hear how the study went and what it involved! I have received your PM and will add you to my list accordingly. I will be in touch again soon once I have collated a significant pool of potential participants and can formulate a plan of action for when we will be conducting the interviews. Thank you so much for your interest, it really means a lot.
Hi Simon , I would be happy to contribute via email or similar, not keen on appearing on camera. After more than 20 years of no good sleep I look very tired ! Lol. I've had RLS almost all of my 60 years & it's all through my family unfortunately. I think it's vital that we educate people & especially the medical profession about the torture of this hideous condition. I was told by a specialist at a Sleep Institute that I was the worst case he'd heard of, great claim to fame. Please let me know if there's something I can do to help " spread the word " regards Vichic
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