THIS IGNORANCE ABOUT RLS HAS TO STOP

[HilsK]

Yes I am in a really bad place at the moment with RLS Augmentation but at least I have a specialist who is helping me. However, this morning, my husband's Carer is telling me about his wife who is in so much distress and has been for years and years with RLS. Doctors ignore her .. will only look at one thing to do with it in a 5 minute consulation, never refer to her notes, they are only giving her sleeping tablets to sleep as she is writhing round all night. Told her to take paracetamol for the pain.

She is severely anaemic ... very low iron and ferritin.

She and her husband walk 4-5 miles a day just to stop her pain. WHAT KIND OF IGNORANT MONSTERS ARE THESE MEDICS WHO BEHAVE LIKE THIS. She has become so with drawn she won't talk to anyone about it.

This makes me cry ..... I know what hell this is for her ..... It HAS to STOP.

[Heatherlss]

It really does need to. How I wish I could make those same people suffer with RLS at night. The very next day they would sit down with me and talk to me like my fellow brother would.

Refusing treatment just because they are too egoistic to listen to a patient. Appalling to say the least. I was told by my doc not a long time ago that "if it was that easy, everyone would be a doctor".

[Netball-50]

This syndrome is awful and affects your relationships and no one listens to you you are just left to try out things on your own. All gp's and neurologists do is try and get you on a DA although I thought I'd got through augmentation my rls has come back with a vengeance so I'm in a dilemma myself. If it wasn't for this forum we would just be left to suffer with no help at all good luck with everything ❤️

[Heatherlss in reply to Netball-50]

I agree. The worst part of this disease are the doctors. They are meant to help us instead they make it worse for us. I spend most of time looking for doctors near me. Someone who is not outdated. So far no success and I have been looking for more than 1.5 years.

[HilsK in reply to Heatherlss]

Bear in mind that many of the doctors now operate by video consultations. You can even request that. They do not need to be on your doorstep. You don't have to attend. That means that you can chose a known good doctor some distance away from where you live. Look at the list that Kaarina has got together.

[Heatherlss in reply to HilsK]

I live in India Hilsk. Thus the consistent failure.

If I were in US, I like to think I would be at Dr B's doorstep.

Hopefully, some Indian doctors are going to upgrade themselves in the near future.

[HilsK in reply to Heatherlss]

Remember Heatherlss you can speak to any of the Doctors via zoom video links. You do not have to be on their doorstep these days thank goodness. I know that some of American docs do and I ma sure some of eth English ones do too. Remember as well you have the website and the medical information on that to confront any Doctor with.

Good luck XX

[Ranjits in reply to HilsK]

Please tell me how much iron leave should be go for us thanks

[HilsK in reply to Ranjits]

Hi Ranjits .. There is a great article and two videos shown on the website connected to this forum rls-uk.org/news/rls-and-iron I'm sure it will help . There is now specific answer to your question cos it depends on how iron depleted you are. Hope this helps X

[Biscuitface in reply to Heatherlss]

Dr B will reply to emails. He is extremely kind and a World expert on RLS

[LotteM]

Hils, this is once again a nasty story. But as you husbands carer told you this, can you not provide him with good information? For his wife and from your story, iron should be the first point of attention. Actually, it always should be. Can you print a list of websites or pages from trusted sites? Maybe the NICE guidelines and highlight the parts about iron for him. As they already know his wife is low in iron, she could safely start taking iron (bisglycinate) once every other day. No doctor's prescription needed.

[HilsK in reply to LotteM]

I am just a little offended by this LotteM ... For a start did you read the first sentence? I am in a bad place at the moment ... I have to be looking after me especially as I have had to be hospitalised twice.

If you have read any other things I wrote on this forum you would know of my intentions and actions. It is what I do ... immediately providing some information on exactly what you suggested. I gave her amongst other things a colourful informative pamphlet I have personally created and had printed about RLS. and approaching someone for help.

I do not need telling to do this. I have created a lot of other material for doctors and health professionals in my community about RLS. It has transformed the way my own GPs deal with me. I have 3 surgeries involved, 8 health professionals and three doctors. I am working locally to inform an assist those with RLS .. and more and more turn up daily.

I am doing this between my hospital admissions due to drug issues with augmentation and trying to come off pramipexole. My life is hell but I am determined that ultimately no one else is going to come across ignorant doctors and health professionals in my local area. That includes those I meet in hospital.

I have spent three months making sure I was well informed, listening to sufferers and professional medics who do really care, just so that I can inform others. I am a biologist and have been a research biochemist so know what I am doing and talking about. I am also in touch with some of the American team who are researchers, and those who are doing exactly what I am doing, informing others.

There are days when I am too ill to do any of this but at least people in my area know where they can get information now. Needless to say I refer everyone to the rls-uk website that is associated with this forum.

If we all did this there would not be a problem.

[LotteM in reply to HilsK]

Dear Hils, I am sorry you took my reply the wrong way and that I offended you unintentionally. If I thought anything specific while replying to you, it was that due to your being in a bad place you simply forgot to do the obvious. I know I could have when I was in your situation.

Now that you mentioned it, I looked back at your earlier posts and replies and sure I could have assumed you would have done the obvious. I think it was only meant as a gently reminder.

I do hope you'll soon find yourself in a better place. People like you with a relevant and strong background to understand the complex neurology and other interactions involved in RLS are very valuable in spreading the current knowledge. Thanks for doing that.

[Lambretta175 in reply to LotteM]

Do not be offended.As a daily viewer of this forum and fellow rls sufferer,I appreciate that everybody on this forum is trying to help fellow sufferers with as much info and help as possible.Everybody can react and suffer different symptons after trying something on this forum.At the end of the day we are all trying to help each other.

[HilsK in reply to Lambretta175]

Yes I get all of that .... As I indicated in my original post I know I am also super sensitive at the moment as my body is not tolerating the drop in dopamine at all at any level and I keep ending up really ill in hospital. and at the same time acting as Carer for my husband who has dementia when I can't look after myself. and trying to help others with RLS.

Thankyou for your concern. I am aware over the last 4 months that with out the support from people on this site I would not be here.