RLS

[BKosi]

Hello all

I am new here but it look very promising and interesting. I am just wondering if you can remember when you started to have this RLS? Because since I was finally diagnosed in May 2015 I have been reading lot of research, books and the whole world wide website. There were so many information that I finally understood why I have RLS.

I first remember when the RLS started was when I was 7 or 8 years old and had trouble getting to sleep because my legs was playing up. So I then decided to try to move my feet back and forth while counting "the sheep" and then slowly I was able to fell asleep. And since then I am doing it until in May 2015 I was finally diagnosed! It was such a relief to finally getting some recognition about my problems.

My previous GP always thoughts I am making all up. But since I got the new GP now because he retired, she then finally recognised and accepted it.

I am taking Gabapentin 300mg daily morning & evening. So far it's very helpful.

What about you? When did RLS started? And how? And now what are you doing to cope with the RLS? Do you take medications?

[Madlegs1]

Hi Bkosi- welcome to the site.

Your story is very familiar to many of us who have primary rls - genetic- .

As you have done a load of research you will find accounts of most of our personal journeys on this site. Well worth spending a few hours reading through them.

It would honestly be too tedious to expect everyone to answer specifically your 'questionaire' - this is the second request for such, in a matter of weeks.

But they are there in the posts- it may come up through the search button. Top of page 'more' - drop down - search.

Be assured that rls affects everyone in different ways and different solutions are very individual.

Good luck.

[Pippins2]

I started with RLS when I was aged 26. Mine is genetic inherited from my mother, my daughter has inherited from me.

I take a combination of meds Neupro patch, a tiny dose of slow release opiate and Pregablin.

Gabapentin didn't work for me and Pregablin doesn't work for my RLS, I take it for back pain.

Welcome to the group x

[BKosi]

Thank you... yes exactly... it's different for each off us. My previous GP didn't believe me. It was a huge struggle.... years for years misdiagnosis after misdiagnosed until in 2015 while I had an assessment with a health carer finally been recognised. I knew already and I told many times but the previous GP never believed me. Sigh...

It was the same when I told him I might have Carpel Tunnel Syndrome and he didn't believe me. Took me 2 years until he finally accepted it but only because I had to do an electronic test at the hospital. And there he could see the result that I was right all time along.

I really wonder what is the point of going to the doctor if they can't believe you what you might have? I know there are people who exaggerate stuff or so but the doctors need to know that each person are dealing with pain differently.

I do have quite a high tolerance to pain but even I needs pain medication.

Anyway, I am waffling all over again.

Have a lovely day.

Lot of hugs to you all.

[Hidden in reply to BKosi]

Hi,

Yep, I know exactly what you mean regarding doctors. They need to trust us when we say something is wrong. WE are the ones who know our bodies, and WE are the ones who know when something is not right. it's as if they need proof that something is wrong. I wasn't sleeping welll and, on nights I did sleep, was waking up feeling unrefreshed. My ENT referred me to the hospital for a sleep study. The results of that study didn't provide an explanation as to why I wasn't feeling refreshed upon waking, so I was about to be dismissed. Here I was, suffering beyond anything a human being should have to suffer through, and I was about to be dismissed! I was not about to let that happen, so I told them to help me further. They relented and did a different test, and do you know what this yielded? A poor sleep quality. I did my silent victory dance!

So yes, we know our bodies!

[DicCarlson]

I had "growing pains" a a kid (less than 10 years old) and I remember being treated for iron deficiency anemia. So, fast forward 55 years or so - out of the blue - wham - severe RLS. Absolutely no sleep! As with many others I went to GP - nothing. Doing my own research, and it took many weeks, I stumbled on the iron connection. I have eliminated the RLS symptoms, but insomnia remains. So - my conclusion is that many people are predisposed to RLS and they might live many years "on the edge" then one trigger can set it off. For me it was probably an diagnosed concussion 6-8 months earlier.

[Ikeeptrying in reply to DicCarlson]

I'm puzzled by the "iron connection" you mention. Was your rls caused by iron deficiency or too much iron. I'm interested because if it's something as simple as iron intake maybe it can be cured by regulating it. Thank you.

[LotteM in reply to Ikeeptrying]

For some it is as "easy" as that; too low iron. To be assessed by ferritin levels in the blood, should not be just 'normal', but above 75 or even above 100 for rls-ers.

For me - although I have a long history of low blood-iron- and for many more it is not that simple, however. Hope it is for you!

[DicCarlson in reply to Ikeeptrying]

It took me a couple of weeks of "research" all with - no sleep, trying to sleep with my legs elevated to vertical, Mg and a bunch of other supplements. Somewhere I read that Black Strap Molasses might help RLS. Well, it did help. Then I found the Johns Hopkins Website and this one sentence "Since the 1950s, it has been known that iron therapy, even without the presence of anemia has benefits for RLS symptoms" My serum Ferritin level was 49 and my % saturation was 25. With supplementation daily, then 3x week, now none - ferrous bisglycinate - RLS symptoms has vanished - insomnia remains. hopkinsmedicine.org/neurolo...

[Ikeeptrying in reply to DicCarlson]

Thank you for the reply. This really sounds helpful.

It's wonderful the RLS has gone even if you still have insomnia. You took ferrous bisglycinate, is it otc? What was the dose you took? Maybe I'll buy some black strap molasses and dose myself everyday.

Have you tried trazadone for the insomnia? It sure works for me. These message boards are a godsend. Good luck with the insomnia.

[DicCarlson in reply to Ikeeptrying]

Many brands use Albion® Ferrous Bisglycinate Chelate - 18mg. There is also a patch you can use - sold at patchmd.com Definitely get your iron level checked before supplementation. Ferritin should be above 75, % saturation should be above 20%.

[Elles5]

I started in my late teens but didn't know what it was. If I went to the cinema or theatre I had to have an end seat as my legs would play up at some point. I wasn't properly diagnosed until about 5 years ago, it took about 40 years! Seriously, up to that point it was a nuisance but then it became bad that I would walk up and down all night and sleep a couple of hours every day. I am on a very large dose of Ropinerol plus Clonazepam, and I take magnesium and Vitamin D. I also had Serum Ferritin infusions a few weeks ago.

[BKosi in reply to Elles5]

Oh yeah me too... I have also this problems in cinema or theatre hence going there rarely. Yeah totally stressful with the walk up and down when trying to get some sleep. I have those moments too but since taking Gabapentin it's got less and less now.

[Elles5 in reply to BKosi]

It's trial and error with the meds I think, Gabapentin didn't help me at all and I was putting on a lot of weight. I know it works for a lot of people though.

[Thea2014]

Hi bkosi I have had rls for many started with it being quite mild but it was troubling me saw doctor prescribed tablets ok for yours but now not working it got to the stage it’s mor or less constant and severe I would not wish this on anyone my wife is very understanding as I don’t sleep well I get moody bad tempered my quality of life is not good