So upset

[Andreadrea]

I just hung out with a bunch of friends tonight, and when I mentioned what's been going on with the RLS and missing work and stuff, one of them kept ragging on me having "an imaginary disease". He kept it up all night, like he would suddenly rap a few times on the table and say "oh sorry, restless hand". I've had the week from hell with augmentation on Mirapex and some pretty severe dystonia and constant symptoms in my arms and legs. I just don't need this crap, and I'm VERY depressed. I can't concentrate at all, I eventually gave away my poker chips and went home, and now I can't seem to stop crying. Someone please tell me this might get better. I see a neurologist for the first time on Monday, I just need to get through the weekend. Thank goodness for video games, they are the only thing that seems to distract me enough.

[Polar Bear]

My first reaction is..... what a smart a**. May he never have to find out what rls is like to live with..... or perhaps he could try it for a month...
Perhaps he is already feeling bad about his attitude.
I'd like to find a really good article which thoroughly describes the agonies of rls which includes coping with the attitudes of other people, and give it to smart a** to read.


Monday will come and you will see your neurologist. Do you have a copy of the Mayo Clinic Algorithm, this will give you some knowledge if and when you and the neurologist get to discussing medication. See the link in my signature.

Be good to yourself this weekend, treat yourself.

[dogeyed]

You poor thing, Andrea.
For so long I'd try to explain RLS, and they didn't understand, so finally I'd just say, "I have bad legs." That was enough for folks to understand. By the way, men do not sympathize the way women do. They've been raised to go out and kill the mammoth, so their fathers don't offer any sympathy, rather they kick them around and offer just "buck up" stuff.

Yes, your neurologist should be able to help you, and if he doesn't, find another one. Sometimes it takes visiting a few docs to get the right one who knows about RLS. This syndrome is VERY draining and disastrous. Until a person has the severe kind, they cannot know that it's like having a bear gnaw on your legs. And the worst of it is, RLS gets worse exactly when you need to lay down from exhaustion in order to rest.

Since Mirapex did not work, then neither will Requip, by the way. They work under the same theory. Your doctor might bite the bullet and give you opiate derivative drugs, it's really the best. In nearly all patients, it stops the spasms of RLS cold. Plus you can take those type of drugs for a long time, not much chance for "abuse," and they only need to be increased every few years, and with minimum side effects.
Hope your doc visit goes well, let us know, GG
P.S. Here is a link to another website that I like, you could also give a printout of this National Institutes of Health government page to your doc, too:
http://www.ninds.nih.gov/disorders/rest ... s_legs.htm

[Scarlett46]

I don't talk about my RLS at all to anyone. Even my husband is skeptical, even though he's seen me squirm and moan and cry about it, and he knows that I take medicine for it. I'm actually dreading having to mention it to my surgeon (I'm having hip surgery in two weeks) at all, not to mention with my husband there with me. I'm totally expecting to hear something along the lines of "why bother risking the doctor changing up stomething that will make your recovery harder by mentioning RLS..." after the appointment. I just know he doesn't understand how much harder RLS could make the recovery... And he's so worried about me and the surgery as it is, RLS is far less relevant to him.

But I'll do it anyway. I plan to go to my pre-op appointment with a list of questions, and RLS will definitely be one of them. And thanks to this board, I'll be armed with documentation as well!

[Neco]

I'm very selective in who I tell the actual details of what I have.

Everyone else gets told I have a painful neurological disorder. You're not really telling a lie, just withholding information they haven't proven they deserve to know, yet.

although when it comes to doctors, you really can't bend the truth because its your life you are dealing with.

[Andreadrea]

Yeah, I had no intention of telling anyone anything, until someone said, "Hey what's going on, you seem down." Even then I just said it was a neurological thing, but my jackass "friend" pressed me for details, then ragged on me. I think I'm going to take a break from this group of people. And it drove me crazy to sit still at a poker table for 4 hours.

I'm better today, I was just so miserable last night after those comments. My boyfriend doesn't "get it", but he tries to understand and is super supportive. I think I'm also having emotional ups and downs after having a bad reaction to Mirapex, and stopping it. Anything that affects Dopamine levels can affect moods. Thanks for all the kind words, everyone. This disorder drives me NUTS sometimes! But I'm better now, and can distract myself at work all weekend

Andrea

[cornelia]

Yes Andrea, when you stop a dopamine agonist you can become very depressed. I have drug holidays from them a every 6 tot 8 weeks and I am always depressed for 4 to 5 days.

Corrie

[ViewsAskew]

Sometimes....I could wring some people's necks!

None of us should have to no say something or to be careful what we say. it's ridiculous.

[Wayne]

I'm like Zach. If I tell people at all, I tell them I have a neurological disorder in the leg nerves, that it disrupts my sleep and leave it at that.

I only go into details if they ask. You won't get much sympathy if at all from casual acquaintances. That's reserved for those scary fatal conditions like a heart attack, stroke, or cancer.

[badnights]

I have a tendancy to tell everyone everything, but I've had to really curb it since this RLS thing got wild in me, and like zach and wayne, I am now very selective who I tell the whole story to - and they have to really be interested to get it out of me.

Other than that, like for co-workers and people I've just met or know casually at hockey, I have a few standard one-line summaries. I think we all eventually devise some kind of Short Version. "I have a movement disorder that disrupts my sleep" or "I have a neurological disorder that causes incessant pain in my legs if it's not treated" (I don't actually experience my sensations as pain, but I think it's fair to say they're equivalent - my sensations are just as distracting and disrupting as if they were pain - and people understand pain.)

As for butt-wipes who make fun of people in grief, you're better off without them and you're obviously a sensible and wise person because you've made that decision already.

[SquirmingSusan]

LOL Beth, I used to have a tendency to tell everyone everything, but with all the health problems I have and we've had in my family, I've gotten really tired of hearing myself talk about this stuff. And I get tired of the stupid comments that come back at me, like, when I tell someone I have narcolepsy, they say "O, I get tired a lot too." And RLS comments just aren't worth it. I'm more likely to just say something like that I have chronic neurological disorders that leave me sleep deprived and in pain, and then change the subject.

Once a week I take my dog and we go visiting people at an assisted living facility. It's nice to listen to someone else's problems now and again.

Sorry you had that experience, Andrea. Some people just suck.

[badnights]

"O, I get tired a lot too." ??!! That's hilarious

[fraujoolie]

I would've introduced him to my "restless fist."

Hang in there!

[ViewsAskew]

I imagine that most of us have learned to make adjustments. I felt similar to Susan so I just stopped talking about it because I refused to let it own me or define me.

I'm fortunate - I have not had one person doubt me to my face or diminish what I go through. Not sure what happens behind my back...but I imagine it's not different.

I don't have the same set of friends I had 8 years ago when this all started, though. Only the tough ones that really care about me have hung in there. I don't have the energy or time to bring the others along. They didn't want to do it themselves, I let them go.

What's interesting to me isn't the event (though it infuriates me), but how we cope and what we have to put up with. As the study shows from a few years ago, the toll on our lives is just like that of any other chronic disorder.

[Polar Bear]

Yes, this rls certainly burrows into all espects of life........And then add into the mix a couple of other chronc disorders which creep up on us and which also need .worked around.

When I get pi--ed off my little 3 year old granddaughter and I put on The Jungle Book and we do the elephant march around the house....... followed my Mamma Mia where we sing and dance badly and heartily allong with the abba music. We've got all the moves. - superbabes !!

But tonight for instance I am going ot a Fashion Show..... Gotta sort the legs/arms well in advance. Then I have a recent pulled muscle, the meds for which will be taken just before leaving home.

Its hard to lie and rest my back when limbs are screaming for walkies.

A chronic Urinary infctn in the middle of this which has not been relieved by 2 courses of antibiotics When you gotta go- you gotta go.

Please let next year be full of good things for all of us.