Lonely

[Jenny198619]

Sat downstairs again alone, it's now nearly 2 am. I believe I suffer with rls. I'm 32 and this started around a year ago. Doesn't affect me until I get in bed, then no matter how much I tense and bend and stretch my legs they eventually force me out of bed. Happens a few times a week now. Haven't seen the doctor yet. It seems to pass when I'm up and about, then when I lie down again it returns. Quite tired now. Hello all.

[LotteM]

Hi Jenny, I am so sorry to read this. Yes, it sounds familiar and like RLS. You can check out the list of diagnostic criteria on rls-uk.org. It is a nasty disorder, but you’ve come to a place with lots of experience and good advice. Welcome!

Has this happened before? Has anything changed about a year ago? Do you take medicines, as some, such as most antidepressants and antihistamines and even over the counter ones like Benedryl may induce or worsen symptoms. Also, low iron, especially ferritin (should not be ‘normal’ but at least above 100, preferably higher) may induce or worsen RLS symptoms. And many find diet elements, such as sugar, alcohol, trigger RLS. Do some more reading on the rls-uk.org website and on here.

For now, it helps to move. Many, me included, find that good stretches of especially the lower legs/ valves but also hamstrings helps to quell te symptoms just enough to allow another bout of sleep. Also, intense distraction. E.g. I’ve been doing scrabble on my mobile, whereas others do chess. Hot or cold baths may help. And application of magnesium oil on the legs.

I am far from complete. Others may tune in later with more suggestions.

If the symptoms and the resulting poor sleep start to affect the quality of your life, you may consider medical treatment. If you go that route, make sure you arm yourself with info first, as not many MDs are knowledgeable about RLS.

Work to do! For now, I hope you can make it back to bed.

[Jenny198619 in reply to LotteM]

Thanks for the reply, I don't take any meds. No changes a year ago when this started. I cut sugar out of my tea a couple of years ago and I don't drink alcohol at all. Also quit smoking a couple of years ago. Been playing sudoku for the last hour, going to go back to bed and try to go to sleep again now. Fingers crossed.

[Highlighters]

Hey Jen ur symptoms are much the same as mine, I take pregabalin about half an hour before going to bed, then I am quite relaxed in till I fall to sleep, better still have a good joint before u go to bed.

[restlessstoz]

Hi Jenny- I know just how you feel. I've had RL for about 15 years and they drive me to distraction. I'm typing this now standing up as I simply can't stay sitting down.

I have tried so many things to help and in a lot of ways my legs are more manageable than they were but in now way are they gone and they affect me from morning through to night and sometimes in the night as well.

I have made significant changes to my diet. No refined sugars, including maple syrup and rice syrup etc. they are just as bad for me. No added salt, no alcohol, no caffeine and now no gluten and no dairy! I used to take the sedating antihistamines but cut them out as soon as I realised they had an effect. I take magnesium, iron, and several drugs to help. (The neurologist I see says I am in the top 2% of sufferers. Oh joy, the only thing I excel at!!!

I try to do some exercise daily and am an avid gardener. If I do too much though it backfires. It's more complicated now that I have arthritis in my feet, ankles and knees which triggers the RL. I'm on Tramadol to try to control the pain and thus the RL.

I know what it's like to stay up all night and feel like your the only person in the world awake and have been driven to tears of frustration when I have to stand up all the time, even in meetings and when I try to go to meditation!

Trying to take your mind off them is easier said than done so your Sudoku is a great thing to do.

Good luck in your RL journey. I know there's a lot of advice out there and all you can do is try different things but you should see a doctor to confirm that it is RL although it definitely sounds like it.

[Jenny198619]

Thanks for replying, got a few hours sleep in the end so could've been worse. I had hoped that over time this would pass but after reading all the posts on here I don't hold much hope lol. I'll pop to my doctors after the holidays. See what they suggest. Sorry you are still struggling with it after so long x

[Woody4]

You need to read as many of these posts as you can stand. Reason being, what affects one person, helps another. One example, where I have read some say stop all caffeine, one person posted that coffee helped them when awakened by rls. The jest being, rls seems to be different for just about everybody, in what triggers it and what stops it. I read the posts everyday. Thanks to all of you posters. It helps!!

[btthemd]

Jenny, Welcome to the RLS community. Oh yes you have RLS. There is help, you need to find a good doctor who is familiar with RLS. Also contact the RLS org. and read the information available for RLS. There is no one path to take for relief from RLS but there is help, but you need to seek it out. Wishing you the best, as I have been dealing with RLS for over 30 years.

[Jenny198619]

Thankyou everyone for replying x

[RLSBOGEY]

Jenny,

Just from my experience, many doctors do not have much knowledge of RL. The doctors at Sleep Centers seemed to be most helpful and understanding of this condition.

[Jenny198619]

There is no sleep centre anywhere near me unfortunately, I'm going to try the doctors after the holidays. Thank you

[Brica]

The RLS Foundation website can list Doctors near you who treat RLS. That is how I found the neurologist who treats me now after years of agony; so many sleepless nights, etc. I am taking iron supplements and have had excellent response, but not the same for everyone. Cannot go by the normal average values. Johns Hopkins Hospital in Maryland has a website with info on research re. RLS; very informative. Best of luck for relief in 2019. Brica

[Jenny198619]

I live in the UK not America. Thanks anyway.