what to say to people who don`t understand what rls is like.

[hairyfairy]

When someone says that they don`t understand what rls is, then tell them to go to their nearest practical joke shop & buy a packet of itching powder. Then tell them to sprinkle the stuff all over their legs just before they go to bed then try to go to sleep!

[Hidden]

Tell them NOTHING. - If Drs can't understand it the common man wont. I have spent years tellling people how I have been in agony and unable to stay still to sleep, I take drugs that destroy my peace on mind and it was destroying my life only to be great with "I get that on long journeys - I need to stretch my legs". I so want to slap that man only I don't fight and he would have been able to put good manners on me!!!

There is a level of dumb out there along with an inability in most to fully understand this condition, which has a silly f**king name that minimises the sh1te we go through.

I think we should rename others:

Lung Cancer - Unhappy lungs

Impotence- tired penis

Anorexia - controlled eating.

Depression - the blues

That's a half decent start at minimising all the suffering!!

[TheDoDahMan in reply to Hidden]

Great concept, Raffs!

[Hidden]

Hi!

Honestly, I don’t care if other people understand it or not! I only know that I need help and it’s a very sneaky syndrome. I wish that I knew what causes it. Either way, I have to accept it and move on. It does, however, interfere with my life!

[nightdancer in reply to Hidden]

There are triggers for some people for RLS. I just tell people that it is a movement related neurological sleep disorder, which it is. No one knows exactly what causes it, although 70% of all RLSer's have genetic RLS. The genes have been named, and they are doing more research on that. Also, there are MANY meds that we have to avoid with RLS, they will make it 1,000 times worse. You said on another post that you are taking a high dose of Mirapex, but are you on any other meds, gratitudefirst? Things you may not think would trigger an attack, CAN and WILL. The "bad meds" are SSRI and tricyclic antidepressants, ANYTHING with Diphenhydramine in it, like Benedryl, and many cold and allergy meds. When I was on a tricyclic, Amitriptyline, it was almost my death warrant it got so bad. THAT is my worst med. And, I cannot touch diphenhydramine. Stay off of web sites that promise a CURE,. There is no cure, and they always have an agenda, like selling you their "miracle cure" that is better than all the other FAKE cures out there. There is the RLS Foundation in the US, and the RLS-UK Foundation, which this group is connected to. Also, Dr. Buchfuhrer's web site rlshelp.org The treatment page has the Drugs to Avoid list. The only thing not updated yet is the dosing of the Mirapex and other dopamine drugs, the new lower therapeutic doses. Strongly advise that you learn the Drugs to Avoid. over and over again, we meet people that are on meds that will make RLS worse, and most of the time there is a way around it.

[hairyfairy in reply to nightdancer]

I think that my condition was triggered by taking an ssri, plus Maxolon for the nausea that the drug caused. The thing is, I stopped taking these drugs more than 20 years ago, but the rls still persists.

[Parminter]

If you must talk about it, call it Willis Ekbom Disease.

Say that it can cause extreme distress, particularly at night, and robs you of sleep to the point of madness. Say that sleep deprivation is the first choice of torturers in jails across the world, as it was in Guantanamo. Probably still is.

Call it pain, for it is certainly a version of pain, and that it can be relieved by strong opioids like methadone and oxycodone, which no-one wants to give you, and by marijuana, which no-one wants to give you.

Say it is a progressive neurodegenerative condition which affects both the chemistry and the structure of the brain.

Say the limb distress is the result, not the cause.

Or just say your brain is really odd. That usually shuts them up as they await your next crazy move with alarm.

Then you could swing from the chandeliers and they'll never bother you again.

[Hidden in reply to Parminter]

😂. Love it! Ok, so I have a plan, then. Upon entering my psychiatrist’s office tomorrow I’ll jump up on his desk and act crazy. 😆

[Lolly53 in reply to Parminter]

Great advice! Such truth too!!