Someone actually listened - RLS diagnosis after 13years

[Missthomas]

Hi,

New here like many others. I have been having problems with excessive and increasing daytime sleepiness for 13 years. My GP told me it was just the way I was 'made up' and prescribed anti depressants.

Finally, last year, the GP agreed I should contact my work consultant when I started randomly falling asleep in work and was worried I'd get the sack. Anyway after seeing the work consultant, my GP took no action on his recommendations so I went to see another doctor in my practice, they agreed to refer me.

I've just been diagnosed with RLS I was already taking Sertraline which I feel disturbs my sleep and makes me feel down, the Neurologist has started me on Mirapexin 0.18 once at night. I'm not sure but I think I am waking more and a lot more active during my sleep and twitching when falling asleep.

I don't feel on good terms with my GP but he is the one who prescribed the Sertraline, I don't know whether I need to tell someone about the extra activity?

Can anyone help me please.

[ViewsAskew]

Sertraline - Zoloft in the US - is not for RLS! In some cases, it can actually worsen it.

Do you know why the GP prescribed the Setraline? If it was because you were down and tired because of the RLS, you may not need it. The Mirapexin may do the job all by itself.

When I started Mirapexin, I got odd twitches and tremors. It stopped after a few weeks. Not sure that is what you're experiencing.

Mirapexin can also cause some sleep disturbances. I appear to be very sensitive to it - I didn't sleep well for at least a week, if not two, when I started it. I eventually got used to it. I also cut the dosage that the doctor prescribed and increased more slowly. That helped me a lot. Not that I'm suggesting you should do that...just that it may be an option to discuss with your doctor.

Welcome to the message board.

[Missthomas]

Thank you for your reply. The GP did prescribe Sertraline (I am in the UK)for tiredness and recently increased it to 100mg as the tiredness didn't improve.

I've feel I've got no choice but to go back to him and ask him to take me off them, I did feel that it was making my sleeping worse, but I dread seeing him.

As for Mirapexin, I slept all night (well 7 hours) last night and woke up with a jolt (my legs) this morning, hopefully this the start of good things.

Thanks for your reply again.

[badnights]

Hi missthomas and welcome to the group. If you feel nervous about talking to your GP, first let him/her know you have been diagnosed with Ekbom Disease (new name for RLS), and second, try taking some documentation with you so you can show him that SSRI anit-depressants such as Sertraline are known to make Ekbom (RLS) worse in many cases.

One document that will give your GP basic information about RLS is the medical bulletin published by the RLS Foundation
http://www.rls.org/Document.Doc?&id=2112
but there is only part of one sentence about anti-depressants (near bottom of p4 under Non-pharmacological treatments, the paragraph starts with "It is also helpful to examine other substances the patient is taking that may exacerbate their RLS symptoms...").

I am sick right now and can't think straight, otherwise I would look for a better reference for you; maybe someone else knows of a paper that speaks directly to the anti-depressant issue.

But you don't really need it if you have a printout of the link above. This is how you can approach it (it might not work for you, but it's an idea). You can tell him you were diagnosed with RLS, so you started reading about it, and you came across this bulletin where it said anti-depressants could worsen the RLS (show him p4 with highlighter on the relevant part). Then add that the people in a discussion group you joined say it's a common problem.

Remember it's your choice what drugs you take, so if he insists you stay on the Sertraline whereas you're convinced you want to try life without it, then tell him you'e going to stop taking it anyway and you'd like his advice on how to wean off it safely. But hopefully after you tell him what you've learned, he will not try to dissuade you from weaning off it.

I think it will work out. Probably your GP never heard of RLS and will need some time to digest the information in the bulletin (leave it with him). So good luck with all of this and let us know how it works out

[sleepdancer]

Hi. Just wondering, though you were sleepy during the day, I'm surprised you didn't mention any of the hallmark symptoms of RLS/EKD so I'm wondering how they diagnosed you. Daytime sleepiness alone isn't enough. There is a movement disorder called PLMD (Periodic Limb Movement Disorder) that can disturb sleep and result in daytime sleepiness. It is diagnosed by a sleep study. I'm a bit surprised they didn't want to rule out possible other sleep disorders causing your problems. Unfortunately you may have to become your own sleuth. I've heard so many stories of people being given meds that are known to worsen RLS, given by doctors who are "winging it" and not knowledgeable or experienced in treating this. A sleep doctor might be something you'll want to consider.

[Missthomas]

Hi,

thanks for the replies, I've found some information to take to my Gp and am going to make an appointment this week.

I was diagnosed following a polysomnograph, I was finally referred after years of increasing EDS and I was falling asleep in work and during conversations etc.

I did a bit of research myself in the end, I knew I had restless legs as I had the sensations but didn't realise it was contuing whilst I was asleep, until I got the results.

I've woken a few times to find myself doing strange things like - waking whilst getting out of bed, getting undressed in my sleep but the most worrying was the sensations I had whilst asleep like being span round by my ankles and floating round my bedroom, it was so freaky I worried about mentioning it to anyone. It was almost as if I was awake when these things were happening but obviously when I thought back after I had woken I was asleep.
Thanks

[sleepdancer]

What kind of details did your sleep study report say about your limb movements?

[Missthomas]

I don't know maybe I should request a copy?

[sleepdancer]

I personally keep a home file of every test result. Saves complications and waiting if seeing a new doctor. And I can't tell you how many times I've discovered by reading over my copy details that really mattered that the doctor hadn't mentioned. Also, usually when we get lots of info from a test coming at us, it doesn't all compute. Better to review it later at your leisure. And every little word could mean something later as more information develops.

I kinda have a soapbox mentality about multiple sleep disorders, as so often the secondary ones go unattended for years till they've caused so much decline. Actually, it took years and multiple studies for the lab to be able to capture my obstructive sleep apnea, although my docs and I were convinced I had it, but my daggone jumpy legs wouldn't let me sleep well enough for them to see it.

Oh, to answer your question - yes! And ask them for the full report (probably about 5 pages) and not just the short summary. I know some who request all the graphs and data etc. but I don't take it that far.