ORP: our research project

For everything and anything else not covered in the other RLS sections.

Should we attempt to do this?

Poll ended at Mon Jul 19, 2004 8:35 am

Yes
9
100%
No
0
No votes
 
Total votes: 9

Anonymous

sole...

Post by Anonymous »

sole, that's an excellent point!

On the hysterectomy support site I visit there is a place in the profile to list the reasons for surgery, surgery date, type of surgery...you get the point, right? Well...it would be great if something like that was done here. I like that idea.

I know when I answer a post I'd hate to reply with good intentions, only to find out that I was way off from my lack of understanding the person's history with treatment approaches etc.

Rita

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

No, no Jan. I didn't mean, at all, to imply that you should have posted your meds. Not at all. I was just saying, that in my mind, I try and reference people's experiences when I read their posts and I was trying to think of a way of doing that without researching old posts or asking for repetitive information. Really, I wasn't critisizing your post in any way. On the contrary, I guess I'm overly interested in people's experiences. :-)
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

jan3213
Posts: 1706
Joined: Wed May 26, 2004 8:46 pm
Location: Illinois

Repeating experiences when posting

Post by jan3213 »

Sole said:

....your post brought up a frustration I've been having when reading posts by regular posters. ......I remember you telling us about your experience with the surgery but I can't recall what meds or measures you're taking right now that are helping or aren't helping with the RLS. ....I just wish there were a way to quickly reference people's experiences. It's ridiculous and redundant for people to have to repeat themselves all the time, in individual threads so I don't ask people to. Anybody else share this frustration?


I may have misunderstood what you wanted, but that's the way I took it. I really didn't take it as criticism, just as a suggestion. Anyway, I really don't see that most people repeat their experiences over and over when they post replies unless part of their experience is relevant. They just reply to something and that's that. But, thanks for the suggestion.

Jan

claradragon
Posts: 93
Joined: Wed Jul 21, 2004 5:15 am
Location: kent,england UK
Contact:

Post by claradragon »

ref previous post.
there are no stupid questions...right?
would it be possible to adapt user profiles to hold basic med info? :?

cornelia

introducing myself for ORP

Post by cornelia »

Hi, I was the one last night that posted about EECP. As it was already late (I live in The Netherlands), I didn't introduce myself, so I will do it now, on Sunday morning.

I am a female RLS-er (57) and, after 6 years of minor RLS, it all of a sudden went into high gear and 24/7.

After having tried all the DA's (including cabergoline, the expensive one), I am now on a combo of twice a day 0.50mg Requip and appr. 0.19mg of Xanax (I cut the pill).

I lost my job, which I loved, because of severe fatigue. My neuro knows a lot about RLS and is a nice person. He says that I am not to increase the Requip, as, along with RLS itself, it takes away the energy, like al DA's can do.
I find that taking more does not always mean better.
I do sleep however, but the sleep is not restorative at all. I feel worn out in the morning.
We have been trying to boost energy by using a low dose of Trazodone and Remeron: they both made my limbs go wild.
Now I find that 10 - 15 drops (1 drop is 2 1/2 mg) of Tramadol give me just enough energy for most of the day to get some things done and sometimes meet some people for an hour or so.

A few months ago some neuro's in Turkey established that RLS patients are high in stress/depression levels. Well, aren't they right! I am certainly not depressed, but I can't take any stress anymore.

So, I am very pleased to have joined this group. Am I the first from Europe?

Thanks, Corrie

jumpyowl
Posts: 774
Joined: Sat Mar 27, 2004 2:59 pm
Location: Yantis, TX
Contact:

Possibly the second!

Post by jumpyowl »

That is if England is part of Europe :wink:

Welcome, Cornelia!

You wrote (my comments are in red within the quote):

I find that taking more does not always mean better. (very astute).I do sleep however, but the sleep is not restorative at all. I feel worn out in the morning. (need a sleep test).
We have been trying to boost energy by using a low dose of Trazodone and Remeron: they both made my limbs go wild. (anti-depressants - bad idea).
Now I find that 10 - 15 drops (1 drop is 2 1/2 mg) of Tramadol give me just enough energy for most of the day to get some things done and sometimes meet some people for an hour or so. (interesting)

A few months ago some neuro's in Turkey established that RLS patients are high in stress/depression levels. That is to be expected, is it not? Well, aren't they right! I am certainly not depressed, (one more reason not to take antidepressants) but I can't take any stress anymore.
Jumpy Owl

cornelia

ORP

Post by cornelia »

Thanks, jumpyowl, for your comments.
I had 2 sleeptests and they both said: not many PLMD's with arousals, so for me the RLS is the culprit for all the misery, I would say. I do not so much suffer from the creepy-crawlies, but from the electrical feelings, which
especially at night of course can be excruciating.
Corrie

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

claradragon wrote:ref previous post.
there are no stupid questions...right?
would it be possible to adapt user profiles to hold basic med info? :?


I looked at my profile page and don't see anywhere to put that information. Too bad...sure would be helpful.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

becat
Posts: 2842
Joined: Thu Apr 29, 2004 11:41 pm

Common thread here

Post by becat »

n/a
Last edited by becat on Mon Dec 28, 2009 1:42 am, edited 1 time in total.

Anonymous

one more questionaire point...

Post by Anonymous »

In another post by (((sole))) a good point was made (well, I agreed with it, so I'm partial to calling it a good point, lol) :wink:

My father, his brother and I have had RLS (I'm the only one still living).
We were/are all sensitive people...more sensitive than the 'average' person (I'm speaking about being emotionally sensitive).

Maybe the questionaire could include something that relates to that. Like, on a scale of 1-10, how would you rate yourself when it comes to emotional sensitivities? I would be curious to know how people view themselves. Now, clinically speaking, it could be argued that the emotional sensitivities come from a lack of adequate rest...because everyone is more reactive to emotional stimuli when exhausted, but I think it goes deeper than that. I sometimes feel like my emotions are wired too sensitive. I care too deeply...I always focus too much energy on other people's emotions. I FEEL too much...both within my legs and within my heart. It's like my whole existence is too sensitive.

Okay...if I sound wacky then just chalk it up to lack of sleep! :lol:

Anonymous

one more thought...

Post by Anonymous »

I don't know if this relates to the questionaire or not, but thought I'd write it down just in case.

I wonder if it could include how people have dealt with the RLS symptoms before diagnosis? Could it also include what activities we avoid due to the RLS?

I'm asking about the "how did you deal with it before diagnosis" because of this:

This is hard for me to admit, but I had an eating disorder, and part of the way I coped with the RLS was to either exercise all night (burning calories and avoiding the long, painful nights of trying to sleep) or I would binge and purge (vomit) and for those who don't know this, the reason a bulimic will vomit is because it is similiar to using a sedative. If I purged (vomited) 5-10 times a night I could sleep without the interuptions of RLS, most of the time.

I don't have the eating disorder anymore (after 20+ years, I have survived and recovered) but I do miss how useful it was to purge...because it indirectly helped ease the RLS symptoms for me. It's been hard not to return to that, just for some relief. Unfortunately, having my esophogus rupture or my heart stop isn't a good alternative! :lol:

Okay...I don't know if that is useful info or not, but I'm willing to risk being vulnerable if it means it could help someone...somehow...someday.

Hugs,

Rita

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Post by Sole »

You wrote everything I was afraid to, Fussy. No I don't believe we can attribute all of the emotional sensitivity to lack of sleep because I was this way from the time I was born and so was my son. You put it well when you said your whole existance is too sensitive. I concur.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Re: Common thread here

Post by Sole »

becat wrote:just to add to what I've noticed as common threads among us. Hope it helps with the questionaire.

1. Depression:
a) side effect of RLS
b) chemical imbalance in the body
c) life events.

2. Other medical problems in common such as :
a) stomach problems, general GI problems
b) energy with or without meds. (side note should the energy issue be address with doctors, as in should we be aloud to have SMALL amounts of uppers to help with daily alertness? Never thought about that until I read Cornelia's post. hmmmmmmm that's a thinker.
c) sensitivities to light, sound, and touch.
d) headaches, side effect of meds AND or apart of our physical makeup. Also contributed to stress and diet, lack of sleep.
3. Sleep:
a) It seems to be common that we all seem to awake within 1-2 hours of falling alseep. What is the depth of sleep at that point? What should the body signal be at that point?
b) It generally take most of us an hour or more to fall back asleep, is this a constant resitting of the body clock?

4. Stress;
I would doubt that any of us has a great lack of stress. As Humans we cannot always predict events or our reaction to them. Maybe our chemical make up is such, that stress for us produces more than a fight or flight reaction. Or maybe our stress is not always correctly directed in our bodies chemically. i don't know just a thought.
Ok I'm sone for now, just need to purge my brain a bit.


Very nice, B!! :-) I, too, am interested in knowing how or if our bodies handle stress differently than other's. You mentioned uppers. They do believe there is a connection between ADD and RLS. I was diagnosed with adult ADD not to long before I was diagnosed with RLS. I was taking Adderall. Yes, it helped fight the fatigue, the brain fog and even the parathesia. I understand why it helped the fatigue and brain fog but have no idea why or how it helped the RLS. I read what I could but haven't found an answer to that question.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

Anonymous

(((sole)))

Post by Anonymous »

Sole, 'm glad you weren't too afraid to post in in another thread, because when I read your post I felt relieved!

My dad once told me, on one of those long nights when we were both up watching late night TV and pacing around the room, that he wondered if our whole bodies weren't too sensitive. Of course, in my ultra-sensitive state I worried that he would get hurt being too sensitive (lol...it can be a vicious cycle).

You made it easier for me Sole, because you had the courage to say something about it. I had learned for so long to keep quiet that I still hesitate to say things, but you made me feel so much less alone (ahhhh...that's can't be gramatically correct, but who cares, eh?) because you had the courage to say what was on your mind.

Thank you sole!

Rita

Sole
Posts: 212
Joined: Sat Jul 03, 2004 9:25 pm
Location: Oregon

Re: one more thought...

Post by Sole »

fussybird wrote:I don't know if this relates to the questionaire or not, but thought I'd write it down just in case.

I wonder if it could include how people have dealt with the RLS symptoms before diagnosis? Could it also include what activities we avoid due to the RLS?

I'm asking about the "how did you deal with it before diagnosis" because of this:

This is hard for me to admit, but I had an eating disorder, and part of the way I coped with the RLS was to either exercise all night (burning calories and avoiding the long, painful nights of trying to sleep) or I would binge and purge (vomit) and for those who don't know this, the reason a bulimic will vomit is because it is similiar to using a sedative. If I purged (vomited) 5-10 times a night I could sleep without the interuptions of RLS, most of the time.

I don't have the eating disorder anymore (after 20+ years, I have survived and recovered) but I do miss how useful it was to purge...because it indirectly helped ease the RLS symptoms for me. It's been hard not to return to that, just for some relief. Unfortunately, having my esophogus rupture or my heart stop isn't a good alternative! :lol:

Okay...I don't know if that is useful info or not, but I'm willing to risk being vulnerable if it means it could help someone...somehow...someday.

Hugs,

Rita


Rita,

Thank you for be so open and candid. My daughter started purging last year. She too said it helped her to get to sleep. I always just thought it was psychological and never considered the possible connection with RLS symptoms. I will deifnitely talk with her about her experience. She's doing wonderfully now. Hasn't purged for 5 months. I think we caught it early enough to deal with it before it took over her life. Close call though, to say the least. Thank you again. You've already helped one person by sharing your experience.
Sole

"If you ever drop your keys into a river of molten lava, let'em go, because, man, they're gone."

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