Sharing and learning

[kika82]

Hi all,

I am 36 years old and I have RLS since my childhood. I believe it is a genetic problem of iron that runs through my mother side family and we all have different symptoms related to low iron, but as far as I know I am the only one with RLS.

I don’t have it every day and I just take medication when I feel it got out of control and is disturbing me to fall asleep or simply keep watching TV at night. Rarely it gets to my arms but when it does it is the most annoying moment for me.

I am happy to share all my experiences here related to the syndrome as well as get to learn more and more of how to deal with this disturbing thing.

Cheers

Erica

[Madlegs1]

Have you connected your attacks to possible triggers? Especially,since they are episodic.?

Keeping a diary can be helpful in pinpointing causes.

Also, if you think iron may be a factor, then have you got a ferritin test? The figure needs to be over 100.

Cheers.

[kika82 in reply to Madlegs1]

I try to connect to triggers but it been the hardest part for me to make any sense most of the time.

I know for fact about some medications, i.e Nytol for sleep I had another day, so I do normally try to bare with the ones that can trigger and I alert my doctors about it.

I believe anxiety might be a trigger too. I did therapy all my life for personal reasons and nowadays I have a psychoanalyst who recommended me to take Fluoxetine for 1,5 year. Nothing changed on how often I have the rls attack’s tbh in this case. I do exercise constantly as well a healthy life style.

List of possible triggers or not can be huge here tbh so I find a diary a bit exhausting once it comes and goes without a frequency.

Cheers

[kika82]

Also I did the ferritin test when I was diagnosed with the rls and as some medications kept under control I never did it again. And I don’t know how it works here in the UK once we normally just go to a doctor when we have a real symptom.

By the time, my doctor in Brazil said that this sort of lack of ferritin cannot be compensate through food or vitamins because it’s the way that my body holds the necessary amount I need in my body. But this was years ago and maybe nowadays might have some sort of special iron supplement maybe??

Cheers

[Madlegs1 in reply to kika82]

I don't know enough about iron supplements, others will come on to answer that topic.

Antihistamines and antidepressants both can set off rls.

Also many foods, such as artificial sweeteners, monosodium glutamate, high salt, preservatives, raising agents and so on! I find preservatives in meats and chorizo etc are dynamite.

In your case ,it may be worth trying magnesium citrate tablets about 200 gm- which will help calm things down. About an hour before bedtime.

If you read back on posts here, you will get an idea of what people try.

Keeping away from processed foods is a good start- but not easy!

Stretching exercises- especially the glutes( thighs) and hamstrings. Plenty on YouTube 🤩

I hope you can get some relief, by trying some of these things.

[kika82 in reply to Madlegs1]

Thank you so much Madlegs! I’ll def try the magnesium tablets! I’m sure it’s a gold tip! And I’ll def keep reading here the back posts. It been very helpful already!

The best thing is to share our experiences here!

I hope you have all under control too!

Cheers

[Madlegs1 in reply to kika82]

Thank you- I have the ultimate Gold standard treatment- Opium!

I had a bad accident years ago, and was offered opiates for pain control- but they also completely prevent the rls, unless I drink alcohol or other triggers.

Chocolate will also keep me awake, but without the fizzy legs, and when the tablets are near the end of their time, I have terrible rls, until the next tablet kicks in .

That's why I stay on this site- to give back some of the support and help I have got from some very good people here.

Mind yourself.

Good night! ( I'm in New Zealand and it's midnight- and my legs are fizzy!😂)

[kika82 in reply to Madlegs1]

Thanks for all your support Madlegs! I hope you manage to sleep having your legs under control!

I’ve been reading here about Opium but I don’t understand too much about it and how it works so I’ll intensify my researches about it and rls.

We def keep in touch and again thanks a lot for your prompt support!

Sleep tight

Cheers

[Hidden in reply to kika82]

A couple of things about living in the UK.

Firstly, you don't just go to the doctor when you have a symptom. If you have a long term condition like RLS, your doctor should be aware of this and you should be able to approach them with any query. It may just be a telephone consultation. You may need to be quite assertive with receptionists.

Secondly, your GP most likely will know very little about RLS and you may have to educate them about it. In which case you need to be quite informed yourself.

Thirdly, the first choice of medication for RLS in the UK is a dopamine agonist.

You say you take medication intermittently, but don't t say what it is. In relation to this.

a) it's best to take any medication every day to maintain some level of it in your blood. Otherwise you get a yoyo effect.

b) Nytol contains an anti-histamine. Anti-histamines are a trigger for RLS. Not a good idea for anyone with RLS to take anything containing an anti-histamine.

Lastly, all medications used for RLS have side effects and risks. You could first start with medications with least of these and only change to higher risk medication if any cease to work. Definitely don't rush into taking any medication just because you read anyone saying how wonderful it is, especially when it's a higher risk medication.

Luckily, you will find it very difficult to persuade any UK doctor to prescribe higher risk medication for a start.

In fact, since it sounds as if your RLS isn't severe, you might try exploring non-pharmaceutical remedies first.

[Zbirth1 in reply to Hidden]

Thanks for sharing this valuable info.

[Zbirth1 in reply to Madlegs1]

Great advice as usual Madlegs.

[davidofqwerty]

I was diagnosed with RLS when I was 20. And I've had the extreme version of it which was also in my arms and neck. I'm now 40 and do not suffer from it any more because of a tablet called subutex which is used for heroin withdrawal in addicts. I started taking them 3 years ago and am currently taking 16mg per day. Within 35 minutes of taking it for the first time the RLS completely disappeared. I stopped taking them after 18 months and within 48hrs of stopping them the RLS returned with vengence, so 2 days later i started taking them again and again within 35 mins it completely stopped again and I'm still taking them today. I honestly believe the subutex saved my life.