Explaining RLS to your family

Share how living with this disease can and does impact your relationships. How do you cope? What questions to you have?
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Scarlett46
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Postby Scarlett46 » Mon Aug 25, 2008 1:00 pm

You know... it seems like lately (and I've actually just very recently mustered the gumption to mention it to anyone outside of my family), whenever I mention that I have RLS, someone says "Oh, I have that"... Which should make me feel better, right? But no, because they all seem to be fully functioning people. They don't seem to be suffering. So it totally minimizes what I'm feeling.

I really don't know how to describe the sensations - I guess the touching your tongue to a 9v battery would be the best description... only much, much worse and more widespread. And then there's the "muscle and bone" aches. But really, what I try to focus on more when explaining it to others is how it affects my life. I literally have to sneak off to the restroom during the work day - just to close my eyes for a few minutes (although I do have this terrible fear that I will actually fall asleep and end up being in there for hours...).
"After all... Tomorrow is another day!"

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ctravel12
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Postby ctravel12 » Mon Aug 25, 2008 2:15 pm

Oh Scarlett I am so sorry for how you are feeling. The next time some one says "Oh I have that too" just ask them to describe their symptoms. I am sure most do not have any idea what you are going through and are just trying to be polite.

I really hope that you are able to find the relief that you so dearly need.
Charlene
Taking one day at a time

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HeatherB
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Postby HeatherB » Mon Aug 25, 2008 3:05 pm

I had to get up and pace on day while waiting for a friend at the courthouse. There was a lady sitting waiting to go in to court. She told me I seemed awful anxious. I told her I have RLS. She was like oh my, do you have PLMD too? I told her I did. She said she has them as well. She truly understood what I'm going through. We talked for 1/2 an hour. She is the only person I have ever met that has RLS and PLMD. It was nice to talk to someone face to face who understood, even if she was a stranger and it was a short time.
I appreciate everyone on here, and how you all help each other as best you can, but boy was it nice to talk to someone face to face.

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Aiken
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Postby Aiken » Tue Aug 26, 2008 8:11 am

Charlene--

I've met a lot of people who have, or for a time had, RLS. I think the 10% statistic is a very low estimate of the real chunk of the population that's experienced RLS.

However, very few of these people have had experiences with RLS that were more than simply annoying. Most have it seldom, or had it for a while and then it passed. I think I've only met one person who had experienced pain, and only... three, I think... who had it bad enough to need medication. Everyone else bore it, and as far as I can tell, never even mentioned it to their doctor. Just those four knew how bad it can really be, out of maybe thirty who merely had the experience to take me seriously.

My point is that it's a pretty darned big spectrum, and I think most of us who come here are well to one side. It's not surprising that we'll run into people who know what we're talking about, except they don't really. It's kind of them to try to empathize, and all we can do is explain how it can hit harder or softer.

Heck, no matter how much sleep I've lost to this nonsense, and even though I do have pain on occasion, I think I myself have a hard time knowing exactly how awful it is for the most extreme cases. I can guess, but there's nothing like living it.

If it helps, one good analogy is the flu. Sometimes, you get a bug that just makes you ache and make frequent trips to the bathroom for a day or three. Other times, you spend ten days trying to throw up your rectum, and you're so feverish that your joints all feel like they have white-hot irons in them, and your brain gets so cooked and dehydrated that you see demons walking on the ceiling. So, yeah, you've had the flu, but have you ever had the flu? Same idea.
Disclaimer: I often talk about what I do and what works for me, but these are specific to me and you should always consult a healthcare professional before trying these things yourself, lest you endanger your health or life.

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ctravel12
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Postby ctravel12 » Wed Aug 27, 2008 2:53 pm

Aiken wrote:Charlene--

I've met a lot of people who have, or for a time had, RLS. I think the 10% statistic is a very low estimate of the real chunk of the population that's experienced RLS.

However, very few of these people have had experiences with RLS that were more than simply annoying. Most have it seldom, or had it for a while and then it passed. I think I've only met one person who had experienced pain, and only... three, I think... who had it bad enough to need medication. Everyone else bore it, and as far as I can tell, never even mentioned it to their doctor. Just those four knew how bad it can really be, out of maybe thirty who merely had the experience to take me seriously.

My point is that it's a pretty darned big spectrum, and I think most of us who come here are well to one side. It's not surprising that we'll run into people who know what we're talking about, except they don't really. It's kind of them to try to empathize, and all we can do is explain how it can hit harder or softer.



If it helps, one good analogy is the flu. Sometimes, you get a bug that just makes you ache and make frequent trips to the bathroom for a day or three. Other times, you spend ten days trying to throw up your rectum, and you're so feverish that your joints all feel like they have white-hot irons in them, and your brain gets so cooked and dehydrated that you see demons walking on the ceiling. So, yeah, you've had the flu, but have you ever had the flu? Same idea.


Aiken I have always said let them walk a mile in my shoes for a day,week or even a month and see what their comment is.
Charlene

Taking one day at a time

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Rubyslipper
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Postby Rubyslipper » Thu Aug 28, 2008 1:40 am

I just worked a health booth at the State Capitol today for the RLS Foundation. Not a fancy booth, just half a table shared with a lady from the Missouri Institute of Mental Health (was that done on purpose?) Anyway she had a very nice display while mine was just brochures, free ink pens and chocolate (Thanks, Becat that was a good idea). Her booth caught lots of attention but at least one in three people would glance at mine, look back and get this look of astonishment or delight on their face. They would grab info and tell me that either they had RLS, or someone close to them did. They were starved for information. At the same time, of those who had RLS themselves, most were only mildly affected and didn't use anything. A few talked of soap under the sheets, hot baths, etc. that took care of their symptoms. So in that regard, yes I agree with you, they have RLS but they don't HAVE RLS.

Three people though were having tough times. One man has had it since he was in school at least. He got in trouble for figeting so much. His doctor still hasn't prescribed anything for him. One lady had just started a medication and it wasn't working. She hated to tell her doctor. Another lady just walked it out each night. These people were almost in tears to talk to someone who truly understands. It was so funny though, because every person who took information asked if I had it too. Guess I assumed that if I was there with info, people would know I had it.

Don't really know where this is going except it was brought home to me once again, the need for the Foundation, this Board and any help that can be passed along. The message "You are not alone" needs to be shared, broadcast, discussed every chance we get. Not everyone who has RLS will really understand unless they walk a night in my shoes. A mile just isn't enough!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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ctravel12
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Postby ctravel12 » Thu Aug 28, 2008 2:17 am

Rubyslipper wrote: So in that regard, yes I agree with you, they have RLS but they don't HAVE RLS.


Don't really know where this is going except it was brought home to me once again, the need for the Foundation, this Board and any help that can be passed along. The message "You are not alone" needs to be shared, broadcast, discussed every chance we get. Not everyone who has RLS will really understand unless they walk a night in my shoes. A mile just isn't enough!


Ruby good post. I love your last paragraph. So true. Thanks for sharing that with us.
Charlene

Taking one day at a time

Polar Bear
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Postby Polar Bear » Thu Aug 28, 2008 6:21 am

Ruby, thank you.
Betty
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ViewsAskew
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Postby ViewsAskew » Thu Aug 28, 2008 7:31 am

Ruby, you are such a strong advocate. The Foundation is extremely lucky to have you. (And, please, just say Thank You.) They are also lucky to have the time and efforts of all who have moderated here or been responsible for the weekly chats, but Ruby and Lynne are truly in a class of their own. There are also several of you who don't have any "position" here yet are tireless with time and information. Thank you, too.

I'll take that opportunity to once again plug becoming a paying member of the RLS Foundation. SO many of us use this board and the resources on the main site, but we don't often think about what all of that costs. And those costs are minuscule compared to funding research, hosting regional meetings, providing newsletters, and much more.

So if you haven't joined--maybe you're new or if you didn't realize that there was a paid membership option or just didn't think through how all of this gets provided--and you get any value from the information here or at the main site, please join. We need you.

As an aside, and not something we talk about much, it's getting harder and harder for foundations like this one to accept monies from the Pharma companies. From an ethical perspective, it makes the waters murky. People can get the wrong impression. The Foundation needs your money now more than it ever has. It has more to accomplish with fewer sources of funding.

If you happen to run into a windfall in the near future, I know a great thing you could do with some of it!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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Rubyslipper
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Postby Rubyslipper » Thu Aug 28, 2008 11:49 am

Thank you, Views; I appreciate the kudos. (See, I CAN do it!) I also want to thank Becat for her work, everyone who helps with this board and all the tireless people who do what they can for the Foundation. I can only add my total agreement with what Anne said about donations to the Foundation. They are sorely needed. Thanks, thanks and more thanks!
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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HeatherB
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Postby HeatherB » Wed Sep 03, 2008 2:43 pm

My mom and I had a long conversation about RLS one night and she told me about these itchy feelings she used to have in her legs. I questioned her more and got out my pamphlet the foundation sent me. It has the list of common symptoms in it and I asked her if she had experienced each one. There is only 2 or 3 out of like 12 she said no to. We think she has RLS and we are going to talk to her doctor about it.
She has been on Tylenol 3 and Flexeral for years. Since she has been on these she hasn't had symptoms.
I think she understands now more of what I have been going through.

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Rubyslipper
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Postby Rubyslipper » Fri Sep 12, 2008 9:02 pm

When it comes to fammily and close friends, sometimes a heart-felt talk can do wonders. If there were a test to prove RLS or if everyone suffered the same it would be lots easier. My Heather has been suffering with RLS, it only hits shen she is pregnant. So at 8 months along, she is totally miserable. At least for her, it goes away when the baby comes. I am lucky enough that my hubby and kids understand.
You've always had the power my dear, you just had to learn it for yourself! (Glinda of Oz)

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HeatherB
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Postby HeatherB » Sun Sep 14, 2008 4:12 am

Well, my mom and my younger sister both were diagnosed on the 9th with RLS. I seem to be the only one with daytime symptoms and PLMD.

beth
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Postby beth » Thu Oct 16, 2008 7:46 pm

Hi
I am fairly new to the website but not RLS. Has anyone else experienced their children concerned over the use of some of the meds for RLS? I try to explain it to them I need relief due to the fact that I have it daily almost 24 / 7 but they are afraid of the types and amounts of meds. I have 7 kids ranging from 20 - 30. My husband struggles with the mention of opiates but so far we have used every for of parkinsons meds and now trying to alternate every 3 days a different med. Beth

ViewsAskew
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Postby ViewsAskew » Thu Oct 16, 2008 7:56 pm

It's hard to explain this - first, it sounds dumb, and then, you need things like Oxy or methadone???!!! People get freaked by that. heck, I get a bit freaked!

For me, I used the studies and medical literature to do the explaining. When my family was like, "WHAT???" to what I needed to do, I cited the literature. I made sure I did it in a way that showed I didn't want to go down this road, but that I didn't see how there was another option, considering the doctors recommended it. And, not just one doctor. Between the algorithm, the several books that are out (I bought them all, just for ammunition), and sites like this, they pretty quickly understood that I didn't have options if I wanted to work and have a life.
Ann - Take what you need, leave the rest



Managing Your RLS



Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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