Medical Alert Card for RLS - Restless Legs Syn...

Restless Legs Syndrome

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Medical Alert Card for RLS

Joolsg
Joolsg

I’ve just received my membership pack from RLS foundation in the USA and the medical alert card is really useful. It contains a list of meds that worsen RLS (including Dopamine Agonists) and lists safe alternatives.

I’ve attached photo below as it’s a great tool.

I think our UK help forum is much easier to use and more helpful but I do like the USA alert card!

32 Replies
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Thanks for posting Joolsg, very useful to have at hand.

That would be useful for ALL Drs I have ever attended for rls issues.

Would be a good idea if we in the UK had one for meds to avoid

Joolsg
Joolsg in reply to Elisse2

Agreed. Maybe Daragh can consider?

Kaarina
KaarinaAdministrator in reply to Joolsg

Hi Jools, your message has been passed on to Daragh for his consideration. :)

Joolsg
Joolsg in reply to Kaarina

Thanks so much Kaarina. X

Kaarina
KaarinaAdministrator in reply to Joolsg

Hi Joolsg,

This idea was discussed at a recent Trustee meeting and we will take it forward in the future.

Joolsg
Joolsg in reply to Kaarina

Thanks so much for getting back to me on this Kaarina. Great news,

Jools

Kaarina
KaarinaAdministrator in reply to Joolsg

Hi Joolsg,

Please accept my apologies for not getting back to you sooner. On further discussion, the trustees agreed that there were too many risks involved in producing a list by drug name of those best to avoid and the mention of safe options and the advice was to check with a GP.

Joolsg
Joolsg in reply to Kaarina

Thanks Kaarina

I totally understand that decision.

The only problem, as we know, is that most GPs do not know which drugs to avoid( mine had no idea anti histamines made RLS worse & my neurologist prescribed amitriptyline which made it 1000% worse).

However, the good people on here are always available to point people in the right direction.

Thanks again

Jools

Thanks Jools!

Thanks Jools - that’s really useful. I’ll print a copy off to keep on me and also let my family know.

‘Avoid restraints’!!! I can imagine nothing worse. If someone was going to torture me I give in straight away 😱

Joolsg
Joolsg in reply to Pam34

I know- utter torture.

raffs
raffs in reply to Pam34

If I was put in restraints I would loose it, I don't think I could mentally cope and I hate to say this but I would take revenge on all who tied me up when I was released - beat me, burn me even but do not tie me up.

Thankfully the other half isn't into bondage - we did try it once; one night I was horny she tied me up and then went to sleep :( :O

Elisse2
Elisse2 in reply to raffs

Good for her.!! LOL

raffs
raffs in reply to Elisse2

STOP!

She doesn't need any encouragement 😭 😭 😭

gypsy49
gypsy49 in reply to Pam34

i couldn't bare being restraint to the point when i broke my ankle didn't go to hospital i was more scared on being put in plaster than a broken ankle they'd have to knock me out for the whole time lol

Raffs you are as we say over here- incorrigible- but Jeez you make me laugh! And that's as good a way as any to release some dopamine.

raffs
raffs in reply to Joolsg

Laughter is the best medicine and a great healer - no matter how low I get I try and make a joke of it and if I can get a good belly laugh, mind you that sort of behaviour rarely goes down well at a funeral or in intensive care :)

Australia is so behind with rls. Some doctors here don't even know what it is.

Madlegs1
Madlegs1 in reply to Kylieanneh

No rope in Oz?🤣😎

Pippins2
Pippins2 in reply to Madlegs1

Madlegs that just cracked me up hysterically! X

I agree they are very useful. I decided not to continue with RLS Foundation because of the cost.

Joolsg, if you contribute to the annual RLS Foundation drive you will get another one with the thank-you letter.

I gave 2 X $10 last year, so now I have three cards, and I can keep one on the fridge, one in my wallet, and one spare to give to doctors so that they can photocopy it.

I bring the attention of my friends to the one on the fridge, just in case.

How do I request one?

Joolsg
Joolsg in reply to Seehowyour

You have to join and pay the membership fee- $35 if live on USA, $45 for everyone else. Money goes towards research & you get access to monthly webinars by RLS experts.

LanaCSR
LanaCSR in reply to Joolsg

Can you post the link to join?

Joolsg
Joolsg in reply to LanaCSR

rls.org/

Hope that helps but read Elisse’s reply- you can research all the info without paying for membership- she is right. I just wanted to watch a few webcasts on opioids etc.

Great. Ta for posting.x

Dont want to upset the apple cart, but most up to date info can be got from the internet, if you look at the right website's.

Hi if you go on this page you'll see it says Medical Alert card click on it then click on the blue typing you'll be able print off the full card then could laminate it put in your purse

hope it helps

rlshelp.org/

gypsy49
gypsy49 in reply to gypsy49

ohhh and it's free lol pretty good site for info just a shame they don''t have a search bar so you can look things up quicker rather than go through the whole thing

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