What do you think people did with RLS before medications?

[jy13131]

Sometimes I wonder how people back in the day dealt with RLS. Any ideas?

[ViewsAskew]

My grandmother stayed up until 3-5 AM every day, slept 2-4 hours, got up, fixed breakfast, cleaned, cooked, did yard work, etc. By 4 or 5 PM if she was sitting she was doing "sewing machine" legs, by 7 or 8 PM she was whacking her legs with karate chop hands, and by 11 or so she was walking the floors.

For 40 years.

The last ten years she had some relief with clonazepam and then with Mirapex. The best thing was learning she wasn't crazy. At one point, in the sixties, they tried to put her in a mental institution saying she was crazy. All because she said she had this weird sensation. The sad part is that it was in the medical literature since the 1930's, but no one studied it to know what it was.

[jy13131]

How awful. I imagine people used opiates in whatever form they could find if had the opportunity. I just took my first loretab because my symptoms were so bad tonight. I have taken a half of one before but knew that wasn't going to cut it. It is so weird to feel the medicine just go straight to my legs and create a heaviness. Now my muscles are all twitchy like they don't know what to do in a relaxed state. VERY frustrating this WED

[badnights]

Someone posted on here a while back that a relative ended up in a psychatric institution because he went mad from WED - no one realized what it was. That story gave me the heebie jeebies, because I wondered - is he still there? Suffering from untreated WED? .. ...

There are statistics on age and RLS/WED. The prevalence of the disease increases with age, to a point; the disease is 2-3 times more prevalent in 60-70 yr olds than in 20-30 yr olds, but is not very common at all in people over the age of 70. There are a number of ways to explain this, one being that most people with WED die before they get that old.

[rthom]

I wonder what is happening with the person who was hospitalized, boy they can make it so, much worse with their drugs and then their insistence on routines being stiff-- the same for everyone. (they med you up, piss off the rls/wed and then tell you to go to bed, in a room with like 4-6 others and insist you stay there and quiet), otherwise they think you are misbehaving, up the meds that were making it worse in the first place, and on and on and on. Fighting a loosing battle. I've had the experience with nobody knowing what was really going on. And, in a lot of situation, any little thing out of the norm you do gets charted and quantified and labeled, then you get it starting all over again, the speeches about trying harder to focus, get to sleep more, try harder and behave (no pacing or leg giggling, etc.)
I hope they either have it fixed or are aware of his situation and help with empathy or something.
Wow, that stat thing is harsh to think of, but i kind or always thought people were more apt to die of accidents, due to lack of sleep or just give-up, because it's way too hard.

[Polar Bear]

Poor guy, So scarey, could happen to any one of us under some unforeseen circumstance !!

[Wayne]

I thought I was going crazy the first month the RLS came full on, sleep deprivation and never ending {insert your description of leg sensations here} had me climbing the walls. Finally went to see my doctor (GP) and told him what I was experiencing thinking it sounded crazy as I was describing it. It took him all of about 10 seconds to say, "sounds like RLS". He walked out of the room and brought me back a pamphlet and a Requip starter kit.

The Requip and later Mirapex didn't work though and he eventually referred me to a Neurologist.

I'm going to miss my GP when he retires, knowledgeable and experienced, just can't find that anymore. I just had my physical last week with him. I passed, I am ironicly healthy, for a guy that feels like a nervous wreck at the end of the day.

[badnights]

yes, a good doctor is a blessing, and hard to find. Lucky to have one. Is he at a clinic, and they will replace him? if so, the replacement will likely read up on the diseases he is inheriting. Of course, that's no guarantee that he'll be astute at dealing with new developments.

[Wayne]

yes, a good doctor is a blessing, and hard to find. Lucky to have one. Is he at a clinic, and they will replace him? if so, the replacement will likely read up on the diseases he is inheriting. Of course, that's no guarantee that he'll be astute at dealing with new developments.

He's part of a private practice with about 5 other GP's. He's been my primary doctor since I moved to this area 23 years ago. His diplomas and certificates on the wall give a good indication of how long he's been practicing, I figure he's got to be close to retirement. Even though he lives on the other side of town (where my first apartment was) I still go to see him.

I've been treated by a couple of the other doctors in the practice when he wasn't in, but I didn't particularly like them. I'll find another GP when he retires

[Baffledsilly]

If someone had hooked up a secret camera and recorded me during one of my WED rants you would probably of thought I was suffering from Schizophrenia. I find myself pacing back and forth literally arguing with myself out loud sometimes realizing I better calm down before people start thinking that. When no one listens the brain has to argue with someone and I'd rather not take it out on people who don't deserve it. So I fight it out with myself in private. I not suffering from a mental illness just an illness that is really not treated because there is really no way to treat it. How can you when everything in your arsenal fails eventually. Your fighting a good fight, but it's not really a war you can win, at best a bunch of pyrrhic victories that end in early death. I knew that long before I was diagnosed, didn't have to tell me I'd die early despite not knowing what I was dieing from.
An what they did in the old days is what we are doing now, self medicating as best we can while they figure this out. It is what we'll be doing until they come up with some sort of brain surgery or the nanites I'm waiting for, to fix us right down to our DNA. Which is the only place your going to fix this.

[rthom]

Ouch, you are having a really rough time, sorry to hear that.

[Baffledsilly]

Thanks rthom)
I am a little better, but am really tired of doctors who try to pass this off as just "sleep problems" once we get you to sleep you'll be fine... No I will not be fine, I still have to put up with this all day long... Do you want a q-tip doc?? Your ears seems to obstructed by some nonsense my last doctor filled them with. The best day of my life was firing my last doctor, and I'm writing a letter to the local paper to bring awareness to this disease. Tell me, there's got to be a movie star, or rock star who has WED who can champion our cause? Local M.P and maybe the Prime Minister himself. Though, his head so far up the President's butt I doubt he'd hear me... Lmao))

[rthom]

There is one mp, I can't remember his name but he's old now and retired. I'm also trying to get the word out locally as well.

[badnights]

On the fb page someone just posted an excerpt of something that mentioned an actor who has RLS. Post by Kathy Page, Mar 2 at 12 PM, name of actor is Taylor Lautner. (werewolf character, Jacob Black)

I like the idea of a "star" promoting knowledge of WED. We need it to become a famous disease before people will want to fund research into its cause and treatment.

[ViewsAskew]

I read that Taylor Lautner doesn't really have it; he denied it in an interview at any rate. Not sure how the whole thing got started....but Dr Oz wrote in one of his posts that Lautner does, so now lots of people are saying he does.