Patient expertise.

[Madlegs1]

This article may help explain the value of this site. Some people wonder about our questioning of authority. I think this article helps answer that.

theguardian.com/commentisfr...

[Hidden]

There is a much more intense pressure on some one suffering to get well than on a Dr to help them get well. With all the best intentions in the world no Dr is going to be with us as we pace the floors at night contemplating drastic measures as our ability to cope is destroyed over weeks, months, years and for many here decades of suffering - a Dr will go to bed at night just as easily if we are like that or are in our own beds. They will not feel our pain and desperation.

Sure they have a monetary and maybe professional push but I guarantee every one here it is not nearly as intense a push!

Thanks for the article Ml1

[Joolsg]

Thanks Madlegs. Very timely.

It’s clear that post Covid syndrome will be here for decades. My goddaughter is a Neuro physio who has been working on Covid wards throughout the pandemic. She says the after effects of Covid are terrifying. Hundreds of her patients who have survived Covid will need organ transplants and lifelong medical care.

In the past, doctors have dismissed post viral illnesses as psychological and/or hysteria (POTS,ME etc) but they now have to accept the overwhelming evidence before them. There are fascinating articles on Twitter about medical schools teaching medical students how to deal with’hysterical’ patients- and as we know, RLS patients fall into this category for many ignorant doctors.

This disease doesn’t show up on MRI, X rays, blood tests etc so it’s easier for doctors to dismiss RLS patients.

I’m appalled that we still get sufferers on this site who’ve been told their RLS is ‘psychological’ and that there are members who still blindly believe that their doctors know best.

Thanks again- I think we should post all related articles we can find.

[Heatherlss in reply to Joolsg]

I had my family physician tell me I should go to a psychiatrist rather than a neurologist inspite of neurologist's prescription diagnosing RLS. In addition, he told me I should avoid iron infusion as well as it is going to be of no use and is unnecessary risk. I ignore him for the most part but some of it stays in mind and instills fear.

[Joolsg in reply to Heatherlss]

That’s appalling Heather and I can understand your disquiet. I lost all respect for my GP when she told me to drink milk when I was sobbing through sleep deprivation during Ropinirole withdrawal. Luckily I’m a stroppy old bird so once I was through withdrawal I changed doctors.

The ignorance is astounding.

[Pam34 in reply to Heatherlss]

My GP told me augmentation was all conjecture and just wanted to up my ropinorole dose as none of his other patients had complained! This was despite me printing off all the documentation regarding augmentation that I could find! I left in tears.

Months later I found an article in the BMJ supporting evidence that dopamine drugs did cause augmentation. I copied this and sent it to my GP with a letter of complaint suggesting that he read it in the hope that his next suffering patient may be treated with more empathy.

I then left the practise, educated myself regarding RLS as much as possible and found a GP who listened to me. There is nothing wrong in admitting you don’t know, nobody expects a GP to know everything but what they should all do is listen.

Pam

[Joolsg in reply to Pam34]

👏👏

[Madlegs1 in reply to Pam34]

Exactly. I posted the article to support people like those here who have related their unfortunate experiences with so called 'scientific authority'.

There is a problem when parts of science ( ie medicine) become a religion, and practitioners regard themselves as 'priests' being the only ones who can preach the dogma.

Many ,many medical practitioners are sincere, professional empathetic individuals, who are open to ongoing professional development, even under massive time constraints.

It is the other dinosaurs who give the caring orders a bad press.

We, as sufferers, have a responsibility to educate ourselves fully about our own conditions. And keep up with all new developments.

That is the importance of sites such as this one.

Keep the faith for you all!😎

[Hidden]

Thanks for sharing this – an interesting read.

-

I’d like to make a simple comment, but it’s not a simple issue.

-

I started writing a response long before any other response appeared.

-

It got rather long and convoluted and in the end I didn’t think it worth posting.

-

Typical.

-

I recognise the value of being a patient expert, I am one (for another condition) having undertaken an official course. I’m also a trained patient expert course facilitator

-

I can see how it might be unsettling for some people to read members contradicting what their doctors have said. Not so easy to accept that a person you feel you have to depend on isn’t too reliable.

-

It also must be difficult anyway for non patient experts to recognise a patient expert when they come across one. There are a few tell tale signs of who isn’t one.

-

Guess!

[Hidden]

Understand your point of view. Restless legs can be the sign of many illnesses so treating the symptoms with drugs for the symptoms rather than the cause might be questionable.I read a post by someone has been in drugs for restless legs and has found that magnesium levels are too low. They have found taking magnesium with drugs has helped.

The Link between Magnesium and Restless Leg Syndrome is explained by an article

healthline.com/health/restl....

Info July 13 2018 says magnesium is sometimes used as a natural or alternative remedy for RLS . With diets today diets may be deficient in magnesium and supplements for daily dose need, might help. RLS can cause insomnia. It may be because calcium is not blocked with deficiency so nerves become overactive and trigger muscle contractions.

[Joolsg in reply to Hidden]

Yes but try finding the cause. Even the top research medics ( mainly based in USA) don’t know the cause.

We know magnesium helps many ( but not me) and IV iron infusions can provide relief for 50% of sufferers as it gets iron to the brain.

We also know that kidney disease and diabetes can cause RLS. My friend had a kidney transplant and her RLS disappeared.

Many have RLS because of scars in the brain & spinal cord caused by MS or surgery.

There is no ‘one size fits all’ in the RLS world and finding the cause can prove impossible. That’s when drugs become invaluable.

It’s wonderful when someone reports that they have found a non drug method that resolves their RLS. But we are all different.

[Hidden in reply to Joolsg]

So right. Its when you have several illnesses running concurrently that it is difficult to find an answer. I was not aware that food intolerances were affecting my immune system when. I already had one known immune disease . Food intolerances may affect absorption of vitamins which are made in the gut so iron deficiency occurs. Scar tissue and nerve damage as you say can be accidental causes of RLS. It's when the drugs prescribed have unwanted side effects which can damage organs over a period of time that people need to know if the treatment is harmful. In the UK there is a UK gov.yellow card report system with a drug profile analysis in graphs of side effects in patients whether mild moderate or severe which can be accessed without giving personal information. Glad you find medication is keeping you well.

[Hidden in reply to Hidden]

Great that you've found something that helps with your RLS.. It is known that a magnesium deficiency can be one of many factors which can contribute to exacerbating RLS. There are other deficiencies that can exacerbate RLS too, e.g. vitamin B12 and vitamin D.

The most significant deficiency in primary RLS is brain iron deficiency and brain iron levels in people with RLS are lower than for people who don't have RLS. Research by Dr Earley shows that 60% of RLS sufferers can get total relief from RLS without medication for up to 24 weeks by having an IV iron infusion.

As jools says the "root" cause of RLS isn't really known and it's possible it never will be. There are many known factors that affect it however. Magnesium may be one. For many it won't work as there may have no deficiency and there may be other, even more significant, factors at play.

In addition, I wouldn't call magbedium a "natural" remedy. It"s a chenical and it can be toxic.. Also being natural doesn't necessarily mean something is safe.

You appear to have discovered some information for yourself which has helped you manage your RLS. This suggests you are a patient expert.

It demonstrates one of the advantages of being a patient expert. If your read posts on here a lot, you can see how many people have gone to a doctor and if their RLS has been taken seriously have been prescribed potentially harmful potent drugs without any warning and without any consideration of all the factors affecting RLS. Everyone is treated the same.

This isn't doctor knocking, it's simply an observation.

[Gmc54 in reply to Hidden]

I had to smile when I read your quote ‘being natural doesn’t necessarily mean something is safe’. I once had a GP, (now retired) who, if a patient said “I’m taking something natural” answered “so is deadly nightshade!”

[Hidden in reply to Hidden]

Thank you Manerva. You are right about trying to find the cause of restless legs syndrome as it is a vast subject . I found a cause from diabetic neuropathy which is not usually mentioned . Occasionally I recognise that IBS sufferers may not be able to absorb certain vitamins and minerals so this can create deficiencies. The gut is now recognised as a major part of of body and brain health and if there are intolerances or genetic profiles for people overweight, there may be enzyme or proteins which are prevented from helping metabolism. I understand your reference to magnesium as a chemical toxin but I prefer to find foods high in magnesium such as bananas and avocados but shopping is difficult during lockdown.

myfooddata.com is very helpful with finding foods high in each vitamin and mineral with a nutrient ranking tool. It gives the daily value of many common foods and foods thought to be high in vitamins unless fortified may lack these vitamins. As you say the GP will prescribe medication but it may not always work. Many drugs can deplete vitamin levels so optimal levels may not be achieved. You are the expert in augmentation and the drugs used so any comments or observations I make are personal observations linked to my own diet and from research.

[Hidden in reply to Hidden]

You are an expert! Magnesium tablets are chemical Great that you've found food sources.

It is known that diabetic neoropathy, small fibre neoropathy and basically any peripheral neuropathy are also factors. Any bowel inflammation, IBS, SIBO, gluten or lactose sensitivity, etc. Inflammation is a known factor in RLS.

In fact almost anything you swallow could be a problem

It's good to see someone that's looked into all the dietary aspects, nutrients and is modest about it.

I'm sure other people could benefit from what you've discovered.

I take my hat off to you, but I'm not going to eat it - it's polyester.

[Hidden in reply to Hidden]

Ha. Wish I knew what questions to ask long ago. It's because better diagnostics may be available but it is a shame there are no patient leaflets in clinics as people suffer in silence not realizing cluster symptoms may be part of several diseases. Must watch polyester beads in shampoos, shower gels, and cleaners which wash into the water supply. How much polyester and plastic are we taking in when companies are not removing these toxins and advertising them?

[Walras in reply to Hidden]

Could you explain what you mean by calcium not being blocked? Thank you.

[Hidden in reply to Walras]

Sure -was referring to the ability of magnesium being able to block calcium which helps to regulate nerves and muscles rather than calcium activating nerves. If magnesium is too low calcium is not blocked, nerves becoming overactive triggering muscle contraction.

[H12X]

How long will we have to listen to RLS sufferers trying to get help from their GP and finding they have no idea? My first GP asked me if I was using recreational drugs. I was on my knees from no sleep and so tired of walking around the house night after night. That was 30 years ago and today I am still trying to reach my new GP who doesn't seem to understand. He begrudgingly gives me a prescription and I leave the conversation with him feeling so miserable and depressed. What can we do? Just try to be strong, read everything we can, print information out and make sure we get our doctor's attention. Good luck Madlegs1 you are not alone, keep strong.