RLS Unbearable

[williamghenry]

My RLS is the worst ever tonight It is 2:00 am in the UK and my body is burning all over especially my right side I have tried compressed socks but when my RLS is bad they have no effect

I telephoned 111 several weeks ago and they asked me "How did I know I had RLS" The person I talked to sent a report to my doctor This has now stopped me having a meaningful conversation with my doctor about my RLS

I am having a Blood Test today and my Surgery told me a blood test could be only authorised by my doctor They checked my records and saw that I had regular blood tests and they agreed to give me one

Tonight is absolute purgatory

I haven't slept properly for over a year

I keep a diary of what I eat and my bowel movements I am on Laxido to help my bowel clear itself

My doctor nor the NHS won't discuss RLS They tell me it will go away It has been over a year since I had over a quarter of my bowel removed

I am just above the minimum reading for my Iron Levels My doctor thinks this is okay

It is hopeless with the NHS and my doctor

An Iron Fusion is out of the question because my Doctor won't prescribe it to be done

I walk app 24 Kms per week

No success in suppressing RLS I may get another hour of sleep tonight

[Sappington]

Good afternoon from Austraalia. I have also had RLS for over 40 years. If your inept doctors are unable to even understand what the complaint you have is then they are never going to be able to treat you and give you some relief. I have used magnesium powder as a supplement to my medication and find that it will stop the RLS for a period of time. You could try that as it can be purchased without a perscription. I assume that you are avoiding the absolute no-no's of ceffeince and alcohol. There is also a spray available here which is sprayed under the tongue to relieve RLS. It is made in Australia but may be able to be posted to the UK. the website is martinandpleasance.com That also works for me for a time and at least lets you get to sleep. If you take the magesium and have a cup of hot Horlicks just before going to bed then that can help you get some sleep. I just hope that we never get to the point here where calls for help from a doctor are screened by some unqualified person who then determines if you will get to see the doctor or not. Truly unpardonable conduct.

[williamghenry in reply to Sappington]

Thank you very much for your help I use Magnesium Spray on my body every morning and evening My legs are covered with sores because I keep scratching them I know I shouldn't My RLS is made worse by the weather My previous doctor told me I should move to a hot climate He said I had excema and prescribed cream and then proceeded to tell me his wife was a DetermologistThank you

William Henry

[Sappington in reply to williamghenry]

Hello again William. I have found the powdered magnesium very effective as it works in less than 10 minutes. As for moving to a warmer climate to stop the RLS. .if that worked then there would be almost no RLS here in Australia. Don't think that doctor had much of a clue.

[Madlegs1]

William-- sorry to hear of all your troubles.

What medications are you taking, apart from the Laxido??

Who diagnosed your RLS?

It sounds much more like a neuropathy condition.

They are often confused.

Look forward to hearing from you.

[SueJohnson]

You need to change doctors even if it means you have to go private. Where in the UK are you located?

[williamghenry in reply to SueJohnson]

I live in Mid Suffolk near the Norfolk borders Thank you

Regards

William Henry

[Marzipana]

Oh, man, Williamghenry, I'm so sorry to hear about your miserable night with RLS! It sounds like your doctor is being a pain in the ass as well, and that is adding injury to insult!I have no medical insights regarding your situation, but truly feel sympathy for what you're going through. You're in the right place with fellow RLSers who, I'm sure, all understand much of what you're experiencing with this "disorder" (it's not considered a disease, right? RLS is not fatal, but I'm sure many of us have felt close to comitting hari-kari, walking around, exhausted, in the middle of the night). Most of us have also experienced the disregard many doctors have for the symptoms we have, as well as for us as patients. It's very discouraging!

Sending loads of sympathy to you and everyone with RLS, along with prayers for perseverance and peace!

[SueJohnson in reply to Marzipana]

Actually the other name for it is Willis-Eckborn Disease.

[Hidden in reply to SueJohnson]

Or more commonly, Willis-Ekbom disease.

[SueJohnson in reply to Hidden]

Whoops - where was my spell check! 😕

[Marzipana in reply to SueJohnson]

I'd hate to have this disease named for me!

[Dizzydisturbed]

Hi William, so sorry you’re going through this! Until I FINALLY got a GP referral to a neurologist (as RLS is to do with nerves), it was hard to get anyone to take this horrible invisible disease seriously. Please push your GP (write a letter! That usually - eventually! - does the trick) to get you referred.

When you actually get to see a specialist it’s a relief in itself that there is someone who believes you, the first step!

I urge you to do this please.

Sending much empathy.