ORP: our research project

[jumpyowl]

In another thread (topic) I stated:

Who would think this discussion board is only about five months old? It is really growing by leaps and bounds ... thanks to people like you who are willing to draw on their limited reservoir of strength, to overcome their natural retinence to "violate" their privacy, and share, share, and share in the interest of public good (pro bono publico!)

This has really done it! It has pushed me over the "fence", actually the obstacle of my own natural resistance against hard work.

I have been thinking. Actually someone else came up with a similar idea. To make a survey among us. This sounded like a good idea- because it implied the harvesting the fruits of this highly capable group and organizing the information collected through a survey!!!

So to get off the ground, I am starting this new topic entitled OUR RESEARCH PROJECT, or ORP for short, in the forum of General Topics. Please read it and, if you think the idea is any good, please contribute to the first step which I will describe there.

What I have in mind is to make a well designed questionnaire on this discussion board concerning RLS/PLMD. The emphasis is on "well designed." I could start on that but I am not ready yet so I definitely need your help now.

So as step #1 I would like to request everybody (even the lurkers) to contribute to this thread (please make sure it is to this thread, so it is easier to find) with ANY idea that occurs to you. Absolutely anything that occurs to you even if you have doubts as to its value. I was taught early in my research career that new ideas have to be treated gently and not exposed to the scrutiny of others because they are vulnerable at that stage. So do not even criticize your own ideas, just send them in.

If you are of the bashful type or just want to preserve your privacy, use a handle, anonymus + a number, but please give your gender and age (e.g. M/69)

Now once all of your ideas are in (it could come in as a fragment of a debate by several people) then somebody (I am volunteering ) should use this information to make a questionnaire. Then expose it to public scrutiny for critique, additional suggestions, vetoing, clarifying, what have you.

One we have the questionnaire as polished and utilistic as we can make it then it will be posted in an easy to answer form. And then hoping that as many people as possible will return it.

Then again somebody (I am still volunteering ) will compile the results and look for possible conclusions that can be made on the basis of information thereby collected.

So the stages:

#1 Comments, preliminary ideas, suggestions, whatever. All to this thread or to my e-mail address: fjholly@dry-eye-institute.org.

#2 Construction and composition of a tentative questionnaire. Exposure to your critique and further suggestions.

#3. Improvement of the tentative questionnaire. Then "publishing it" in an "easy to answer" form. Also a flexible form so odd fragments of information can still be included.

#4. Evaluation of the survey. Possible conclusions, questions, suggestions for future research, etc. This could be written up and disseminated in one way or another (even at the Fall meeting of RLS )

I think considering the excellent, highly interactive group we have as a seed here, this could become a valuable piece of work and could even be publishable.

If somebody else would like to take over at this point or would like to be nominated to be the project leader, please speak up and we should do what is best for the project (egos are out during this effort).

Please also let me know that I am all wet, it will never fly, etc., etc. I will listen but I have to be convinced!

PLEASE COMMENT!!!


P.S. I really think something valuable can come out of such an effort because, with this affliction, the patients are the most knowledgable as far as the symptoms, effectiveness of treatment, morbidity, and recognition of booby traps are concerned. It is our skin afterall!

[Sole]

Ok Jumpy, I'm so into this. I think it's an awsome idea (although I'm not really sure what you're asking for. SOmetimes you use too many words for me to process and I've always thought myself to be a pretty smart gal). One problem. What exactly do you want me to do? I need specific instructions e.g. tell me about this or that or what do you think abou tthis or that. Very specific instructions. And I'm all over it! Baby steps. That's what I need.

Sole

[becat]

i'll help as well. I vote jumpyowl our project leader.
love ya.

[jan3213]

I think it's an excellent idea! I'm with you 100%

Jan

[sardsy75]

hey guys...

whatever u think i can help with, let me know....

[jumpyowl]

Thanks for the enthusiastic reception!

It is clear from the initial feed back that Stage #1 needs more elaboration.

#1 Comments, preliminary ideas, suggestions, whatever. All to this thread or to my e-mail address: fjholly@dry-eye-institute.org.

What I am looking for here are any thoughts and ideas you all may have which should be included in the questionnaire.

For example: sensations could be classified. The simplest division is whether there is pain or not. But this could be refined into what type of pain if any. I think there could easily be 5-10 different sensations as to type and then as to location in the body.

Whoever contributes should not worry about structure and organization. I am looking just for suggestions the more the merrier.

I think I will soon make a crude, partial questionnaire because it is always easier to add or criticize than start from scratch. So that would possibly help. Just think what you would like to be asked about your own affliction. [This begins to sound like one of those TV shows which I do not have time to watch. ]

Main part would be about symptoms, and the various regiments that had been tried and with what results.

It will also be important to grade the morbidity or the effect it has on the quality of life. And how much improvement/degradation one manages to achieve with certain pharmacological or nonpharmacological methods.

Such study or similar has already been done but not by patients.

Are there any questions?

SO BASICALLY I AM LOOKING FOR SUGGESTIONS AS TO WHAT TO INCLUDE IN THE QUESTIONNAIRE!!!

[becat]

i thought about this for a long time and will work to have my thoughts to you by tomorrow.
becat

[Sole]

Not sure if this is what you're looking for but here goes nothin. Much of it will be repeat information but all in one post.

I started having severe RLS symptoms during my second pregnancy. I was 19 years old. Yeah, I know, very young. Married and everything. I didn't know it was RLS. My symptoms included severe legs cramps (charlie horses) in my calves and restlessness at night, and any drives in the car (whether short or long) were unbearable. After the pregnancy, the symptoms went away. I don't recall having problems with my third pregnancy. Over the next ten years it just became a normal part of life. I didn't know it was a disorder/disease so I never sought help. In fact, I never really thought of it as an "it." I thought I was just an antsy person who couldn't sit still and a night owl. I never realized how accustomed I'd become to constantly bouncing a leg, while sitting and watching tv or what have you. And not even realizing it. In 2000 I started some psych therapy. I was prescribed Klonopin for anxiety. Within 20 minutes of the very first dose, that night, my legs were at peace. It's hard to explain because I didn't know they WEREN'T at peace, until they were. Does that make any sense? I reported this to my prescriber and he diagnosed RLS. I continued the Klonopin way after the counseling was completed but now I was taking it for the RLS. When I became pregnant with my fourth baby in 2002, I had to stop taking it for the first trimester. Man was that hell! Night and day I spent in the tub, with the water as hot as I could stand. I took iron supplements which didn't help at all. I had my husband push down on my legs so I couldn't move them and then I would reisist his pressure until my legs were exhausted. That worked for about five minutes afterward. The only relief I got in those first three months were from orgasms. And only ones I would give myself. Any I had with my husband only made things worse. No idea why that was. But it's still that way today. In my second trimester I was able to start the klonopin again. It brought some relief but not nearly enough. It was just a very terrible pregnancy with very little sleep. I am sure I have fibromyalgia/CFS but have never been diagnosed so they all made each other worse. Even when I am able to sleep, I wake up exhausted. I have energy about one day out of every 14, if that. I do not regularly excercise because my body hurts all of the time and just walking short distances leaves my shins in shambles for days. During the past three months or so, the RLS has become full blown. Partly because I became pregnant again but I had a miscarraige in early June and yet the symptoms only worsened after the miscarriage, unlike my previous pregnancies. Maybe I should clarify symptoms. The need to constantly move my legs when riding in the car (only when I'm a passenger), sitting or lying down. Involuntary jerks while lying in bed. Panic from fear of not being able to sleep. Terrible shin aches after very little activity like grocery shopping and the bottoms of my feet feel like they're terribly bruised for days. My feet get extremely hot if I have shoes on or if it's a warm day, without shoes. Oh, I smoke. Thought I'd throw that in there as I just looked and saw I only had one left and it's four hours till hubby gets home. Other observations.....I notice that my legs are worse if I lay on my left side. My left leg seems to be worse than my right. There's a strange thing that I do with my eyes, when they're closed and I'm in bed. There's a certain eye position that I've found actually reduces my restlessness but when I try to figure out the eye position, the eyes move and I lose the effect. I wonder if there's been any research on that. The klonopin has, for the most part, stopped being effective. I was taking up to 3 mgs a night. My OB/GYN said my blood work showed low iron so I started taking Slow-Fe, iron tablets. Two,once a day. My dumb **** family Dr. decided to ween me off of klonopin and start me on trazodone and elavil. I didn't have any withdrawals from the klonopin but my RLS didn't get any better with these medications. In fact, I think the trazodone caused me to have very vivid dreams which left me even more exhausted. Two nights ago, I started using the "scream louder than your legs" method. I play music loud enough that I would normally not be able to go to sleep to it. I actually try NOT to sleep. I get in my sleep position and lip sync the words to every song, listening intently to the words and instruments. I do not "check-in" with my legs to see how they are or they instantly start up. This takes a lot of concentration. Both nights I have fallen asleep. The first night I got four hours and last night I got 4 and half. Both mornings, like every morning, my legs woke me up and I can't go back to sleep. So there you go. Is this some of what you're looking for? Or do you just want an A,B,C listing? I'm not good at those. If this isn't helpful.....don't tell me.

[Sole]

SO BASICALLY I AM LOOKING FOR SUGGESTIONS AS TO WHAT TO INCLUDE IN THE QUESTIONNAIRE!!!

Age
Sex
When or if you've been diagnosed.
How the diagnosis was made
Symptoms - in your own words. Not the text book version.
Occupation
Drug therapies and their results
Non-drug therapies and their results
Reactions from physicians
Average sleep pattern ( or non-pattern. Yes, I know that's not a word)
Other ailments, disorders or diseases
Lifestyle modifications, if any

There...a list.

[jumpyowl]

I appreciate the prompt contribution of Sole. Both of them. She wrote:

So there you go. Is this some of what you're looking for? Or do you just want an A,B,C listing? I'm not good at those. If this isn't helpful.....don't tell me.

As long as the suggestions are sincere and are made in a constructive manner, there are really no "wrong" contributions. They are all helpful to me and will be to everyone once the project is completed.

I also received some suggestions privately. This first stage is really very informal on purpose. It is so that nobody has to worry about "writer's cramp." Just jot it down when you think of it. Have a piece of paper and pencil or pen next to your bed. Some time the best ideas are circadian in nature and come early in the morning.

[Heronak]

Great idea, Jumpy, I'll start thinking of ideas and post soon. For now, count me as supportive and here's what' off the top of my sleepy head:

Blood relatives with RLS?
What steps have you taken to alleviate symptoms? What worked and for how long?
Have you discussed your symptoms with your primary care physician?
If so, did your doctor know anything about RLS?
Were you refered to a neurologist?
Have you been diagnosed with RLS?
What resources have you found to be helpful? (internet, brochures, forums, newsletters, etc.)
What resources would you like to see?
Are you a member of the RLS Foundation?
If no, why not?
If so, have the membership benefits proved worthwhile?
Has RLS made you depressed?

That's it for now, there was more in my head this morning than I thought!

Heron

[jumpyowl]

These are good ones. Thanks a million!

If anything else occurs to you, keep them coming!

[jumpyowl]

to be included in the questionnaire:

JumpyOwl to Romes:

Let us see whether I get this right. You think that you are not getting enough uninterrupted deep sleep (stage IV) because of the Xyrem medication or RLS medication??? If the latter why would you decrease the Xyrem dose? How will it help your deep sleep?

This is a complex situation and I am just feeling my way around it. First of all I am sure you had at least one sleep test and they have taken a polysomnograph. This should have shown that you had, probably severe, (PLM) periodic limb movements with near arousals (enough to interrupt you delta phase sleep pattern every couple of minutes or so).

So in your case it is not so much the RLS (it is as far as it is keeping you from falling asleep) but the PLM which have to be stopped. Even the narcolepsy could be secondary to RLS/PLMD!

[Guest]

jumpyowl this is great I just found it god bless you what better way to help sufferers with rls than from those of us who have it we have to stand up and say I AM NOT GOING TO TAKE IT ANYMORE I am 50,female,have father,brother and 2 daughters with rls my symptoms are painful legs cold feet tingling crawling feelings in feet and right ear jerking in legs when I try to sleep muscel aches insomnia anixiety depressionand suasidal thoughts (spell) i have suffered for over 45 years I have been on just about every kind of meds i can think of the one thing that did work for me was the klonapin but at the time i was drinking and ended uo abusing the meds i am sober now and not interested in getting high maybe I should ask for the klonapin again I dont know what to do I think I am about at the end of my rope hope this helps any suggestions would be warmly taken and any help you might need would be gladly given thank you lyndarae

[jan3213]

Jumpy, you said

Why do you not post things you come across in the thread of ORP?

You are EXACTLY right. I should have posted here. I said

I'm always up for any advice on what foods might trigger attacks. I know it depends on the individual, but I think too much sugar has an effect on me, but there may be certain foods that might HELP RLS that I don't know about.

I think THAT would be a good question to add to our ORP. What foods, if any, do you think might trigger episodes of RLS? Do you think there may be foods that might help RLS?

How's that?

Jan

(If I think of anything else, I'll be sure to put it here. This is getting VERY interesting, isn't it?