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I had found that my GP surgery and a neurology consultant knew nothing about this other than was on the out of date NICE website at the time.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.