Raising awareness

For everything and anything else not covered in the other RLS sections.
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squirmy
Posts: 71
Joined: Thu Jan 13, 2005 4:10 am
Location: Indiana

Raising awareness

Post by squirmy »

Unless you have a name for this condition, it is very hard to find out what is wrong, as most of you know. Trying to describe the symptoms is very difficult and some doctors look at you like your crazy. I went thru this and tried using Webmd's site at first with a question to their docs. It was a start, but unless you have the name
RLS
to put into the search bar it's still very difficult. So this morning I posted an update that the webmd staff and members can see on their welcome board. I hope this is a good thing that I did, I am new to message boarding, and hope I didn't break any rules. I have pasted my webmd post below:

want to give update to helpful webmd doc
by trying43834, on 6/2/2005 10:06:57 AM NEW!

Late last year I asked a question to a Webmd doctor about strange and torturous sensations in my legs. She suggested Formication, which was a good start for my later diagnosis of severe RLS (Restless Leg Syndrome). I was also recently diagnosed with SLE. I just wanted to let her know, I think it was Dr. Jean?? I can't find a way to write her, I'm sure it is here somewhere. I now use the RLS foundation support group for that and I take Sinemet for the RLS and it is helping. RLS is a neurological disorder and I went thru 2 docs who didn't have a clue, finally a rheumatologist knew exactly what it was, but most often it takes a Neurologist to diagnose. Please let the docs and people know about RLS... too many people suffer alone from this problem. And a big thank you to Dr. Jean ?, for steering me in the right direction. Tina
RLS, SLE (Lupus) and Asthma

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hi, Tina--

Seems like a good idea. Don't personally see any downside from this side. Never used WebMD, if there's a problem on their end, I imagine they'll let you know.

BTW, Tina... I finally remember everytime what SLE is when you use that abbreviation (slow learner, I know! :oops: :lol: ), but I think in some venues it's less well-known as a medical abbreviation than in others. I know several people with lupus (one with Sjogren's and RLS) but didn't happen to hear it referred to as that until I met you.

Hugs, and thanks for posting that-- Sara :D

squirmy
Posts: 71
Joined: Thu Jan 13, 2005 4:10 am
Location: Indiana

Post by squirmy »

hi Sara. I like to use the SLE abbreviation because there are different types of Lupus. SLE (systemic Lupus) affects several different organs at the same time, including the brain, so I thought it was relevant. CLE (Cutaneous Lupus) affects only the skin and sometimes joints, but sometimes turns into SLE. When I read about all the other auto-immune diseases, I don't know how the doctors tell the difference, they are all so similar. Basically with any of them, from my little understanding, the immune system is mixed up and attacks healthy tissue, causing inflammation and sometimes organ failure in severe cases.

I'm glad you liked my webmd post, I feel good about it. I know there a many people out there suffering and can't find any answers without knowing the actual name RLS. I didn't find this site until my doctor said you have RLS, then I said what's that? haha It was then that I finally was able to learn and get some understanding about this disorder.

I use the webmd Lupus support group for my Lupus questions and this site for the RLS, but it's nice to share it all with one person. Thanks for your interest. I love this site and the people here. Tina
RLS, SLE (Lupus) and Asthma

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hey, Tina--

Like you, I didn't find out anything about RLS until I happened to hear the name from someone. Then it was immediately obvious what I had. I agree that getting the name out there is IMPORTANT in reaching and helping more people... and also gaining more information for the researchers.

As for the abbreviations, you're right, with the different types it's helpful to know which, if you know there are different ones. I only mentioned it because it reminds me of my situation with chronic anxiety. I have generalized anxiety disorder (GAD) not panic disorder, post-traumatic stress disorder, obsessive compulsive, etc., and IF anyone knows anything about chronic anxiety, like your specific lupus, it is an important distinction in order to understand my point if I bring it up.

Around here, we've discussed GAD pretty often for various reasons, so I don't always write it out the first time I refer to it, but I try to remember to, just in case. It's pretty tantalizing to me to read an interesting post with abbreviations in it that I don't understand. I remember when I was first on a cancer support group, I didn't even know what "dx" (diagnosis) meant. Took a while to catch the jargon. I don't know where you posted the WebMD post, specifically, so that might be an abbreviation well-known there, or might not. Doesn't REALLY matter, anyway, because folks can ask if it's important enough to clarify. :wink:

I just remember how curious **I** was when I first saw you using that abbreviation, and also since I know folks suffering horribly with automimmune disorders, I want them to get as much visibility as possible!!! :( Like RLS, the more people realize how many people are suffering, the better for the long-term options for sufferers!

Hugs, Tina. You hang in there. Lupus is a mean disease.

Sara

squirmy
Posts: 71
Joined: Thu Jan 13, 2005 4:10 am
Location: Indiana

Post by squirmy »

I just went back to webmd site and I have two thank-you's from the staff and one young man who has been tested and tested for an unknown problem of tingling in the legs, a feeling of being a human tuning fork. He has suffered for 4 years and his docs don't know what is wrong. Sounds familiar huh? I wrote him back. I hope he gets it.

I have had a couple really good days, today I don't even feel sluggish. It's been a rough year for me, but I'm hoping for a complete remission from all of this stuff. Doc said it's possible, but might be a couple years.

Sara, I am going to view some of your past postings now, so I can get to know ya better.

Tina
RLS, SLE (Lupus) and Asthma

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

HOORAY, Tina! Glad that your post is generating interest... and hope the young man gets some answers and help.

I noticed you said earlier today somewhere that you're feeling well lately. I'm so glad! :D

Sara

squirmy
Posts: 71
Joined: Thu Jan 13, 2005 4:10 am
Location: Indiana

Post by squirmy »

hi again Sara. I read some of your past postings. You are a very nice person, encouraging and intelligent.

One conversation especially interested me. The one about primary vs. secondary RLS. Like I said before, I don't know what came first for me, kind of like the chicken or the egg thing. But I had an uncle who always tried to sleep standing in a corner because when he laid down he got the "heeby jeebies" he called it. And my mom has it in her feet, she stands on ice to help her with it. Neither of them ever took meds for it.

Anyway, is it something I should find out for any reason?

Also, I might have missed it, but how is your son doing?

Tina
RLS, SLE (Lupus) and Asthma

Sara
Posts: 493
Joined: Wed Sep 01, 2004 2:40 pm

Post by Sara »

Hey, there, Tina--

Personally, I would ask your family about RLS a little more, if for no other reason than that someone might not realize what it is, and have been suffering in silence for a long time. Even if they don't need meds (I don't, and no one I know with RLS except the folks I know here take them either), it might be important to them to at least know it's not "just them" (I found that comforting!. And for younger folks with it, it could be important for them later on, if their cases do progress.

I already knew two friends had RLS when I finally came here, because I had overheard them talking about it to one another-- that's the first time I heard of it. I also noticed a brother-in-law fidgetting one night, and we discussed RLS, too. But when Jumpy started the survey thing, I e-mailed EVERY family member and many friends because I figured that there might WELL be others who had it.

Total count, I found five positives (three family, two friends) and three probables (all family, two deceased, so we'll never be sure) out of probably 25 messages. Those who responded negative to RLS questions, were almost all very interested in what it was and why I was asking. And my gut feeling is that SOMEDAY down the road, one of those people who DON'T have it, is going to run into someone who DOES... and either will be more sympathetic or will be able to tell them "Hey, there's a name for that, and possible treatments."

So like we were discussing earlier, if NOTHNG else, even if it really doesn't "Matter" to your condition and the treatment of it, asking around ***raises awareness***... and you were COMPLETELY RIGHT... that IS important! :D

Shortly after that little personal research adventure, I found one more definite case, our 12 year old son. Thanks for asking about him, Tina. :D He's doing okay. I told Becat earlier today, I still wonder if I had RLS when I was his age. I think I may well have and just never thought it could be any kind of disease or condition. It was just what MY body did to ME at night when I was tired or ill.

His case is blessedly mild so far, and still intermittent. I think that it's less-frustrating for him, because it DOES have a name, and because he can compare notes with me. I told a funny story to some of the members a couple of months ago about him showing me all sorts of wild contortions of his body and each time asking me, "Does RLS make you want to do... THIS?" We were laughing pretty hard by the time I showed him MY favorite RLS contortions. :P :lol:

I hope that by the time he's my age, maybe the researchers and docs will understand RLS better, and have more hopeful strategies for dealing with it and/or treating it. But so far, to be honest with you, I think it's actually been something that (before I even realized he had it) was helping him evaluate his own "self-care" and make decisions (he's like me, and going to be earlier is better, RLS-wise) based on what he felt his body needed. What a good lesson to learn so young? To listen to our bodies, and obey when they seem to be saying, "Time to rest, time to re-group."

A cousin of mine believes that we are intended to "learn something" from every experience in life. And although I don't LIKE some of the lessons I've had lately, I think that there is merit to that philosophy in many cases. I wonder if Tom's "lesson" from RLS so far has been about acceptance and grace to make the most of what we're dealt?

Hugs to you. Take care, Tina.
Sara :D

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