Introduction!: Hello! My name is Mel, i... - Restless Legs Syn...

Restless Legs Syndrome

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Introduction!

mel_hancock
mel_hancock

Hello! My name is Mel, i am new here! I am looking to find some support/advice from others who are suffering with RLS the same as i do.

Im fairly certain i have had RLS my whole life from a young child, I always put it down to a bad habit of constantly moving my legs. It was not until i got a bit older that i realised that i had this horrible, crawly sensation every time i stopped. I noticed this when i was pregnant.

I had a terrible period of depression a year or two ago and this was when my RLS really became unbearable, keeping me awake at night or waking me early - it really affected every aspect of my life. I find the only way of relieving the symptom is by rolling my ankle joint or moving my foot up and down to stretch the muscle.

I have been to my GP and had a blood test, all of which showed normal results so i was started on a course of Dopamine which did nothing for me and also Ropinirole.

During the summer months, i have noticed a major decrease in the urges and sensations. But now we are experiencing darker mornings and evenings, my symptoms seem to have peaked.

Has anyone else noticed their RLS is linked to the seasons or seasonal affective disorder?

If anyone has any advice or quirks that have worked for them, i am more than open to listening!

Thank you :)

12 Replies

Hello and welcome Mel. Take a look at the search bar at top left of the page, lots of information there, check out iron and augmentation to get you started.

When you noticed the increase of symptom when you became depressed did it occur after starting an antidepressant? Many can play merry hell with RLS.

I'm stuck using a phone or else I'd have given a better response.

Take care.

People do comment on their rls being affected by different meteorological conditions but they don’t seem to affect me much.

There are loads of suggestions on here of things that help but everyone is different and this pesky condition is inconsistent. Raising iron levels works for some (you need to get your serum ferritin checked - and get the actual figure - not just that you are ‘normal’ - normal for rls is over 100). Magnesium, taken as a supplement or topically also helps many.

The prescription drugs are: alpha2delta ligands (pregabalin - lyrica - or gabapentin), the dopamine agonists (pramipexole/mirapexin, requip/ropinerole, neupro patches) or the opioids. These all work to a greater or lesser extent but all bring their own problems - particularly the dopamine agonists, so it is important to do loads of research before starting them. The chances of your doctors knowing much is slim.

Hot baths, cold water, stretching exercises, elevating the legs, compression stockings, dietary changes etc etc. there are loads of suggestions out there.

Good luck.

Lookoqop

Hello Mel

Can you explain what blood tests your doctor did, and what the results were? If the tests were for ferritin levels, you need to know the number, not a vague 'everything is normal'.

And can you say what does of ropinirole you are on, and for how long? Dopamine agonists come with their own set of problems, particularly 'augmentation'. which means that the medication deals with the symptoms, but makes the condition worse over time, spreading to new parts of the body, thus requiring a higher dose, taken earlier in the day. This is not good.

Depression is common among us, for obvious reasons, but we must avoid SSRIs, which make the condition worse.

I attach a few documents for you to read, from the RLS Foundation in the USA.

Browse through this site at random, you will learn a lot, and understand that you are not alone.

rls.org/file/understanding-...

rls.org/file/depression-052...

rls.org/file/what-is-augmen...

rls.org/file/member-publica...

Here is one more for you.

rls.org/file/triggers-05201...

Hidden
Hidden

Hey, another young person! Finally!! (no offense guys). A big hello👋

raffs
raffs in reply to Hidden

That's a bit unfair, I was told just yesterday by my wife that I was acting like a 6 year old - so at least I am young at heart :)

Hidden
Hidden in reply to raffs

I’m sorry — physically young person. Is that better?

raffs
raffs in reply to Hidden

Well if my knees keep playing up I might get new ones and if I averaged brand new with my 'real' age I'd still come out young enough :)

Hidden
Hidden in reply to raffs

Ok, you got me. Darn....🤭

Mine gets worse with seasonal changes. Its actually temp changes. I fin the only thing that helps is two 5/325 hydrcodone or mirapex welcome to the forum.

Hello and Welcome!

I do not seem to be affected by seasonal changes, but my depression does. I have the most trouble with my RLS when I’m exhausted, have worked all day and had very little sleep. So frustrating! There’s nothing worse than being completely exhausted and having a terrible episode of RLS. I end up feeling close to hysteria and crying. The only thing that seems to help me when at this point is cannabis. I have augmented on Mirapex and seem to be stuck at 0.5mg. I’m trying to wean off the Mirapex and this is such a challenge! I roll my ankles too and the RLS makes me feel like I have to stretch my legs constantly. Rolling my ankles doesn’t stop my symptoms but it does make me feel a little better momentarily. I have many symptoms in my ankles, feet, legs and arms. I suffer no matter what the season or weather. Sorry no paragraphs! I hope you find relief soon!

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