Light at the end of the Tunnel?

[HilsK]

About 8 weeks ago, from a place of severe augmentation from 22 years on Pramipexole I found this forum. The relentless pain and utter distress at this severe form of RLS that was affecting my whole body, alongside the lowest mental space I have ever been in I discovered a whole huge number of similar souls who immediately surrounded me with a hug. But so much more than that they helped me to become informed about the whole thing that I'd contended with since I was a child.

I had found that my GP surgery and a neurology consultant knew nothing about this other than was on the out of date NICE website at the time. Furthermore they showed no interest in learning. How things change! I read everything you have all said, topped up with information from the RLS UK website that has just been updated, and equipped with paper work and links galore, made them a short video and asked them to watch it. I lent the consultant my book by Restless Leg Syndrome, published by the American Academy of Neurology, by Mark Buchfuhrer, Wayne Henning and Clete Kushida.

I then asked them to check all of it out since over 4 million Brits are coping with this and get back to me. Indeed I asked my GP how he could ever give advice on RLS without this knowledge. I never expected them to actually look at this but they did. I must have the best informed GP in the country and who wants to use my videos to show other medical professionals in the area.

This is the BEST reward I could have ever dreamt of. That some people will not have to meet ignorance and apathy. They can be engaged with their own experience and seek help. I keep saying thankyou .. but the many who held me with that gentle supportive hug and shared their own knowledge and experience, have ensured that I will to support and help wherever I can those with RLS.

Blessings

Hilary xxx

[Madlegs1]

Hilary-- you're hired!

Job has no pay but loadsa gratitude from the other 3million 999 thousand 999 sufferers.

Textbook illustration of how to educate your med people.

Incredible job. We'll done.

Respect.😎

[Hidden]

You have done a wonderful thing. Now there will be less RLSers who will suffer due to your hard work of collecting all the info needed and got your doctors to accept and look at it all. I salute you.

[Hidden]

Absolutely brilliant. Well done.

[Kaarina Administrator]

Hi Hilary

What you have achieved for RLS sufferers is huge. Thank you so much for your enterprise and dedication. To get your GP on board and willing to use videos you submitted to show other medical professionals in the area about RLS is mind blowing! I shall let the RLS-UK trustees know this good news. You have made my day!

[HilsK in reply to Kaarina]

Thank YOU Kaarina

As I said without this Forum support and the website, I would not be in the place I am now to do this. As I have replied below to TheDoDahMan, I'll let you know when we have created the videos and the helpful pack for Doctors from a patient's point of view .. which will point them here .. I'll let you know. I have my own battle to face as I try to withdraw from the drug causing the augmentation over the next months, praying that the NHS support and monitoring in the UK that I need doesn't suddenly disappear because all the attention is focussed on COVID19. But I will get there.

HilsK

[Esme2007 in reply to HilsK]

This is brilliant - especially after a horrendously night last night - I’ve hurt my hip and have put a great big hole in my bottom sheet thrashing my legs about !!!!!!

[TheDoDahMan]

You Are Fabulous, HilsK!

Any chance you could put your video on YouTube and give us all a link to it? Imagine the circulation it would get! And so many of us would love to use it as an educational tool for our quite uninformed doctors.

Thank you so much.

[HilsK in reply to TheDoDahMan]

Hi .. Thank YOU

Yes, I'm going to do exactly that!! I have a friend who's going to help me with this. I'll put a link here asap. I will also set up a new FB page etc around this. I want to encourage people to create their own short 'Lives' online to tell their experiences too. This community has so much power for change behind it. We can change attitudes by firstly informing ourselves of what is going on uniquely for each one of us and then allowing our voices to be heard. Will let you and anyone else who's interested know when I've done that. It takes a little time as I am a full time carer too!!

[TheDoDahMan in reply to HilsK]

THAT'S GREAT, HilsK!

Am so pleased with your quick reply! Bless you and your helper friend! Take the time you need; I know that many of us are lucky to find much spare time nowadays.

[Heatherlss in reply to HilsK]

Hey, You're doing a wonderful job. Hopefully things will get better for you and your friend. Wish it gets better for all of us really.

I have a suggestion with regards to setting up a fb post. Doctors don't like listening to the word google anyway. Tell them about facebook and it will bust their eyes out. So rather I see that many doctors are active on Linkedin and twitter,which for some reason gives that professional vibe. So I would encourage you to try to the same on those platforms instead. I'm here to help with those things. Anything for raising awareness and making our lives better.

[Palamino]

Well done that's amazing . I'm

trying to educate my doctor a pack and video would be brilliant to give to our doctors I would happily pay for something like that to spread the word and help others . My own doctor actually out impatient intouch with me so I could talk to him and we support each other .....that's the doctors job but I was happy to do it

[HilsK in reply to Palamino]

To me there has been nothing more frustrating and in a way, debilitating, than meeting a doctor who has no idea of what you are going through. I felt inadequate in the way I was trying to explain how it felt, blaming myself.

Because his 'books' didn't mention pain, he didn't believe me to begin with. One of the other GP's told me it was all in my mind and another a couple of years ago, told me I was a hypochondriac when Augmentation was beginning to kick in and things were going pear-shaped. I sat with worsening Augmentation, and night after night of pain and no sleep for 8 months before seeing another doctor. Perhaps you can see what is driving me. I don't want ANYONE to be treated in that way.

EVERYONE deserves to be listened to whether it's just minor irritating discomfort or something much more full on. That's where the NHS fails so miserably. I am a counsellor and Listening Practitioner and have spent much of my life listening to others. So you may guess how I feel about people not being heard when they need it most. This forum LISTENS .. really knows what that's about. We are so lucky to have it. Wishing you all the best and as soon as I've got it together I'll put it on here. and give you the heads up!!

HilsKx

[Esme2007 in reply to HilsK]

Amazing

[Palamino in reply to HilsK]

Thank u , I know exactly wot u mean it's like bloody torture and people just think it's a little irritation !!!if only . All of us on here know wot it's like it's a pity it cant be replicated so others can feel wot it's like nite after nite year after year . My doctor listens to a degree then gets fed up with it all and doesnt bother . I know their general practitioners and not specialists but we are the experts . Just gives us a low dose of an opioid and most of us would be ok . They give it to drug addicts !! Anyway rant over for now xx

[Whymelord]

Thank you so much for what you have done, I'm sure all that work and effort wasn't easy. The help and encouragement I too have been given since joining this forum has been life saving at times, well done, excellent.

[HilsK in reply to Whymelord]

Stick with it Whymelord .. This forum listens. It is a rare and beautiful space where you will be heard. Jump up and down if you are not!! No it isn't easy but I was a teacher, counsellor and currently hold space for people to be heard .. so I was never going to take what has happened to me this last few years lying down.

Wishing you gentle times

[Jumpey]

What a RLS warrior! Thank you from the bottom. of my heart.❤

[SMPR]

Brilliant 👍😃

[Esme2007]

❤️❤️❤️❤️❤️❤️

[smilingjane]

THANK YOU ♥️

[oldfidgetlegs]

I can only add my heartfelt thanks to the previous comments - typing this at mid-day, standing in front of my laptop moving from one leg to the other. So it begins, another day to 'get through' instead of 'living' with no hope of improvement. Animals are afforded the privileged consideration of 'quality of life' but not us. You have done a truly wonderful thing.

[smilingjane in reply to oldfidgetlegs]

Oldfigitlegs

Do you have medication,

You've maybe gathered all the information you need on this forum.

If not pop a post on. Not good to think of you in the middle of the day struggling

🤔

[oldfidgetlegs in reply to smilingjane]

Yes thanks, I take Pregabalin and gradually weaning off Ropinirole - always trying to get by with the lowest dose medication possible because of side effects like weight gain which isn't kind to arthritic knees and hips. We all manage as best we can but your magnificent input will hopefully make a difference to a great deal of people. Can't wait to show my GP and Consultant!

Thank you so much for everything you're doing for all fellow sufferers on this forum.

[Lambretta175]

Thank you.Won't it be interesting to hear about how gp's reactions are to people giving them all this useful information which they could probably get if they looked for it?As previously stated,they are general practioners not experts on every disease.I find it still amazing that this disease is suffered by millions but so little known about it.Thank you again for your efforts.👍👌

[Merny5]

Wow, you are an inspiration. Can you provide a link to your video? Thank you

[bedith6]

Thank you Thank you.!! My G.P admitted she didn't even know what RLS stood for and when I requested an iron infusion she nearly fell off her chair. Reluctantly (because my numbers are "normal")she has given me iron tablets. I have at least persuaded her to give me a low dose of Tramadol which helps somewhat. I still suffer during the day and night though and look forward to seeing the video. You are amazing.

[Joolsg]

That’s fantastic Hilary. Well done you. Your GP sounds very forward thinking and you will have helped so many of his existing and future patients.

[Dougg]

Fantastic, Hilary! You have plowed the road for so many RLS sufferers. Kudos to you!

Doug

[YodaDog]

Brilliant, well done and thank you for your efforts in the past and in the future. I'm just wondering if you're going to mention that it's also known as Willis -Ekbom disease, because I think one of the issues that helps to undermine the condition is that many non-sufferers, as soon as they hear the words restless legs syndrome, just lose interest or begin to take it not very seriously.

Can't wait to see your hard work.

[HilsK in reply to YodaDog]

I couldn't agree more. There is a whole language and communication thing around all aspects of this. It is the same with many other aspects of mental and physical health too. I was challenged the other day when someone from the medical profession remarked, "Well it doesn't kill you!" I referred him to the huge mental health aspects of all of this, let alone the effects of the drugs! There was an awkward silence.

[Madlegs1 in reply to HilsK]

Great answer! It needs to be hammered into medical practitioners, the suicidal consequences of RLS.

It is now a common question in surveys on rls-- the ideation of suicide as a consequence of lack of sleep, and daytime accidents.

Keep it going. Do not hold back.

😎

[HilsK in reply to Madlegs1]

Yes. I have just completed the American survey on rls-org and did not hold back .. I haven't done when questioned by mental health teams either ...