Hi, I know that not everybody here is from the UK but I just got the most pleasantest of shocks when I was scrolling through the channels on my sky remote and came across this.
This Wednesday, June 23rd at 8pm on Channel 5
Is a Documentary entitled “Restless Legs Syndrome…Desperate For Help.”
It says that it is a “Documentary about some of the many sufferers of restless leg syndrome, a condition that, for some, is so severe they want to have their legs chopped off.”
I’m hoping it might be informative and educational and truthful.
Sorry if this has already been posted but I looked and couldn’t see any posts about this.
Thanks for letting us know 👍Let's hope it is an improvement on the last documentary Channel 5 did on restless legs syndrome which just concentrated on people in enormous suffering without really taking any time to focus on treatments!
Yes I got excited when I saw the first Channel 5 documentary advertised a few years ago now but I personally found it to be a very disappointing offering, maybe it was just me...Hopefully this one will be an improvement. I will wait with baited breath 😀
I’m glad I found it but I’m glad that you said what you said too. I have high hopes and I hope it’s not another exploitative channel 5 documentary and is serious and honest.
I got excited in the same way I used to feel when I found an amazing book and I thought I hope it helps other people understand.
In some ways RLS is lonely and it’s terrifying thinking about it getting that bad again.
I am SO glad that I found this space when I did.
I am so fortunate to be learning about medications such as Dopamine Agonists prior to have confronted them because I would have taken anything during a long period of 2020. I was sleep deprived, mentally exhausted and scared it’d never go. That it would stay that bad.
Hopefully we will be pleasantly surprised and the documentary will be informative rather than exploitative 😊I have just read some of your posts and I'm sorry to see that you have been through the mill with restless legs but glad for you that you found this forum so that you can make informed decisions about medications etc.
I am going through severe ropinirole augmentation myself and am trying to gradually wean myself off the tablets. It has been truly horrific and I wouldn't wish it on anybody! At the moment I am awaiting a referral to neurology and have been prescribed oxycodone slow release 20mg at night 5mg in the day which has given much needed relief as I felt suicidal due to 24/7 severe restless legs, unable to sit, lay down or even just stand still and local GPs just didn't know what to do with me! I'm just praying that the neurologist will allow me to stay on the oxycodone while I withdraw from the ropinirole otherwise I really don't know what I will do!
It's so sad because all those years ago when I first visited the GP about my severe restless legs none of the basic checks were done such as ferritin or checking which antidepressants I was on. I was just put straight onto ropinirole and yes it did work incredibly well but boy have I paid a high price in the long run and probably for years to come
😭Check out the pin at the bottom of the page encouraging us all to write letters to campaign for the better education of GPs regarding RLS, this is a vital campaign if things are ever going to change.
I truly hope that you are in a better place yourself at the moment with the dreaded legs and depression and I wish you all the best as you go forward 🤗
I was taking ferrous fumarate 322mg daily until really recently but I have now started taking 2 tablets every other day rather than one tablet every day.
I take pregablin, 150mg in the morning and 300mg at bed time. I also take zapain but only when I need it but I am on prescription to take 2 30mg tablets, twice a day.
I’m taking sertraline for my depression but I am seriously considering trying to manage without it as I’m scared I’m just storing up another problem for the future by taking it now.
I use a magnesium spray which I rub into my legs mainly in the evenings and finally I’ve started taking a combination of calcium, magnesium and vitamin D3 which is one tablet 3 times a day, high strength cod liver oil and a vitamin b complex oral supplement too.
I am in what I call an experimental phase trying to find out what combination of drugs works best for me, what dosage? what timing? etc. I was going down the route of including a low dose DA and switching out periodically to avoid augmentation and other side effects.
However, recently I have seen more and more "negative" comments about these drugs from much more experienced and learned forum members such as Manerva, Joolsg, involuntarydancer, Madlegs1 and LotteM. I also have learned but not yet absolutely confirmed that DAs are no longer considered first line treatment for our condition.
Consequently I am having to rethink my plan. At the moment I am taking 0.044mg of pramipexole, 2mg of Oxynorm and supplementing with a small does of Kratom. I also take Gentle iron and Magnesium Bisglycinate. I sleep quite well but never wake up truly refreshed and suffer from brain fog through out the day. So I'll keep experimenting for now
My specialist does not seem to acknowledge the high risk of augmentation and has prescribed a transition to 1-2 mg Rotigotine. Not only another DA but a more than 3 fold increase in the equivalent dose of pramipexole I am taking. I will be challenging this and looking to perhaps try Pregabalin. Do you get any side effects from Pregabalin?
I instinctively agree with your thinking on Sertraline but would seek advice from others on this forum.
Here's hoping your treatment plan gives you the relief you need.
Regards Covenant
I am in a much better place, my gp tried iron and I responded really well to it. I can handle the constipation and I’m just praying that it continues. My legs still get me up and I get pain and that dreaded creepy crawly itchiness in my legs.
I’m no longer sleep deprived and exhausted and surviving on no sleep and feeling like everyone thought it was in my head because i couldn’t explain it and it didn’t make sense to me that it was the walking that would help because I was tired and just wanted to be still, to be oblivious, unconscious for a while.
I read your reply and wanted to give you a hug. Don’t lose hope Nettles, though I’m painfully aware of how hard that can be in the grip of this.
I am so sorry to hear what you’re going through.
I’m going to look up Oxycodone as I don’t know anything about it but I think it’s probably a codeine based pain killer or something similar.
I would hope that if that helps and doesn’t harm you then they wouldn’t remove it from you and cause you further worry, distress and a possible worsening of symptoms were you to be without it, especially if you have been on it long term.
in reply to
Oh my God you’re gonna think I’m completely cuckoo. It hasn’t gone up the top it’s in the right place 🤷♀️🙃
I had a really good night last night. I only woke once and that was from a strange dream where I had a hole in my finger that when I smoked the smoke came out the hole in my finger and the smoke turned into little elephants, like Dumbo!
I'm so pleased to hear you had a good nights sleep last night, that is brilliant news.
I'm not too bad thanks. My sleep is quite disturbed at the moment but the oxycodone is keeping my awful augmentation/withdrawal symptoms under control so I am grateful for that!
I just noticed in another message you posted you spoke about possibly coming off your antidepressants, just a word of caution, please reduce them gradually. I came off prozac earlier this year far too quickly ( after taking it for years) and really suffered horrible withdrawals! I imagine that is the last thing you need at the moment so please take it very slowly.
I take iron tablet every other day and magnesium on the alternate day which seems to balance out the affect of constipation from iron. Not sure if its the right thing to do but it helps me.
Aw thankyou Mercurial for your lovely encouraging reply, very much appreciated ☺️I'm so pleased to hear that you are getting some relief now and hopefully as you continue with the iron things will get even better for you. I hope your family and friends understand a bit better now too what you are going through. It can be very hard for others to get their heads around this strange condition at first especially because so little is openly known about severe RLS!
I am getting much relief myself from the oxycodone ( a potent opioid) it has relieved my RLS/augmentation /withdrawal symptoms greatly although I still have very broken sleep and some puzzling, unpleasant symptoms that I am unsure are related to augmentation /withdrawal from the ropinirole or something else! I'm not pestering the GPs again at the moment though because getting the oxycodone was like trying to get blood out of a stone and I'm scared to rock the boat! I'm just grateful that I have relative peace for now and am able to rest physically and mentally until the next reduction in the ropinirole.
I try and hold on to the thought that this is all temporary and a process I have to go through to reach a better place. I am also blessed with a wonderful understanding husband and supportive family and friends which makes such a difference!
Keep us updated from time to time with how things are going for you please.
Thanks for this I will put it in my diary, a definite watch irrelevant of what else is on, lets hope theres a breakthrough, maybe we should tell our GPS, they may learn something??
Thanks for the info on the documentary. Is there anyway you can view this in the USA? Is channel 5 the BBC? If so, will it also be on BBC-America? Any additional information is very much appreciated.
Hi everyone with the painful condition of restless leg syndrome please please give tens machine a go with an open mind I use mine all the the time and have it on for several hours before bed, please read the instructions carefully and don’t put in on so it’s painful , I really believe in this so give it a go , best wishes
Watched this programme with great anticipation however I found it too be all about people who suffer with this awful disease and no information on treatments therapy etc!
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UK broadcast Channel 5, Restless Legs
Anyone from Wales UK?
TV Documentary
