Restless Legs Syndrome Foundation Blog

It was back in my second year of college that I started noticing that my sleep was not as peaceful as before.  My sleep pattern was completely off.  I would wake up several times during the night having trouble breathing and my roommates were saying I was making noises in my sleep. I would wake up in the morning feeling groggy and miserable as if I hadn't slept the night before. The first diagnosis was that of a deviated septum, and I was looking forward to getting home from college and having the surgery done so I could finally sleep again at nights. 

However, after a successful corrective surgery, my problem still wasn't solved. I started on a long, difficult and frustrating journey of trying to find the root of the sleep disruptions. Thus started the lengthy, time consuming, and costly  process of doctors' appointments, sleep studies, extensive blood works, neurologists, cardiologists, scans and MRIs.  I was put on medication, changed medications, increased dosages, and was in constant communication with my doctors. I was even working with a nutritionist, writing down everything I ate every single day and how I slept that night trying to see if there was a correlation between food and my bad nights. All the while my sleep was getting worse and worse. I got out of bed every morning miserable and I even had to stop studying for the financial analyst exam I started preparing for because I could barely manage to concentrate in my college classes and keep up with the work load that in the past was so simple.

Anybody who has ever not felt well for an extended period of time knows that not knowing what is wrong with you is a painful process. You are fighting against something, and you don't even know what it is. As you can imagine, it was a relief when, after two years, I was finally diagnosed with WED/RLS. It was only then that I could start doing some research, understand what it is that I am going through and start working toward feeling better. One of the things that amazed me the most when I was researching WED/RLS was that 7-10 of the U.S. population suffers from this condition, yet at the same time while doing research on WED/RLS, it seemed so unknown.   

I have given a lot of thought to how I can be more proactive about educating the public and  raising awareness of this condition. I know that if more people would have known about the condition I would have found out my problem sooner. I would like to make a difference in the lives of people who have it or will have it in the future.  For such a common disorder effecting such a large proportion of the population, there hasn't yet been enough of an advancement in this area. This disorder is genetic and I'd like to make sure that by the time I have kids and they get older, there will be a lot more known about WED/RLS and hopefully a cure.  

Being involved with the WED Foundation is very important to me because I know that they are engaged every day in working toward finding a cure. Also, equally important, the Foundation is there to educate and offer support to those who are impacted.   

I am grateful for the Foundation's staff who have been so supportive and helpful in helping me coordinate and publicize this upcoming fundraising and awareness night at the Marlins game on Tuesday, August 19th. This is the first event that I have planned. It is my intention to continue coordinating future events and fund-raisers, both in Florida and in New York, that will bring awareness to the organization. I believe that it is up to each and every one of us to take a proactive role!

For more information regarding the upcoming event please see the attached flyer.

To purchase tickets please send an email to:   FLMarlinsWED@gmail.com .

I hope to see you at the game!

Unable to attend and want to help? Make a donation in honor of Lior Goldstein at https://willis-ekbom.org/donate-today/.

Lior Goldstein

THIS HELL WE LIVE WITH.....

When I was asked to do a blog entry about my WED/RLS I wasn't sure where to start.  It is not very often I allow myself to spend this much time thinking about this Hell we live with.

The sensation in my legs has been my companion for as long as I can remember.  When I was little I used to cry and say my legs “tickled” when I went to bed and my twin would complain because she could hear me moving them from across the room.   I live with “The Mystery of the Tickly Legs” (a mystery even Nancy Drew couldn't solve, until I could stand it no more and my husband encouraged me to try to find out what it was. I finally found a doctor who listened and he sent me for a couple of sleep studies.  What did they say then?  “You have something called Restless Legs Syndrome (RLS)....live with it, we can't do anything about it”  I was just happy it had a name.

                                                

It was about that time (because I think we all become more aware when we know we suffer from something), that I realized I had inherited this from my dad, who was always shaking his legs when he sat down.  And then I realized and understood that is must have been why he an mom had twin beds...she couldn't get any sleep with him beside her.

                                                

I coped by starting a Support Group up here in Hamilton, Ontario Canada and it was a huge success....until Mirapex and Requip showed up on the scene, and everyone seemed to think they were “cured”.  It was truly frustrating for leaders....BUT I met some of my closest friends (and one closest to my heart), when I was asked to join the Foundation and be a rep. on the Support Group Advisory Board.  It was there I learned about some triggers, although I have never really identified one for me.  I used to cope by having a scalding hot bath in the middle of the night when my legs were bad, but Mirapex has helped enough that I don't do that anymore. 

I am blessed to live with an totally understanding DEEP sleeper.  No matter how much I am up or down, he doesn't notice, so we are  still be able to sleep in the same bed.  I may be rambling a bit, and I'm sorry, but as I said, I don't allow myself to wallow in this too often....I guess I needed to.  You see, I am 57 now as it sure isn't going away. 

                                                

My WED/RLS has always been predominantly on my left side, and I feel it all the time in my leg....and even worse, in my left arm.  I have not found anyone I know who feels it in their arms, but I sure do.  There are many times the arm is worse than the leg.  I take my Mirapex like a good girl, sometimes even remembering to take it early enough so it helps at bedtime, but I know that I will always be on it or something else to stay sane.  I stretch a lot and stand up at meetings a lot and do weights with my arm because sometimes by wearing it out it gives relief for a time.

Do I think it's fair that I have this?  NO! 
Do I wish it would go away?  YES! 
Do I wish I never had it?  NO!  Surprised? 

Well you see, without it I would not be able to understand others with it, nor would I have met my wonderful empathetic friends who I can't imagine life without...BUT IT CAN STOP NOW ALREADY!!!!

                                                

As most people do with this Hellish thing living in us, I am always, always tired...tired physically, tired mentally and tired of trying to explain what it feels like to those blessed enough not to know.  I hate it, I resent it, and I am terrified that it is going to only get worse as I get older.  Is there enough Mirapex in the entire world???  When my dear dad lay in bed in his last days, he was on so much morphine that he was unconcious...and his legs still twitched under the sheets.  Is this what is in store for me?  Is it?  It terrifies me.  I have made my husband promise that if I die from a terminal illness, he must make sure I get enough of whatever I take then, so I don't feel it anymore.  PLEASE!!!

What kind of conversation is this to have?  I mean really????

                                              

To anyone who has WED/RLS and understands what I am saying tonight (I am going a little nuts because when I talk about it I can't ignore it), I understand and there are so many of us who do.  And I ask this of you.... Talk about it, don't hide it...Let people know why you are tired all the time, or move all the time.  If they laugh or don't understand...Nuts to Them!  I understand and many others do too and only by sticking together can we make the world aware.

I pray for patience...I pray for relief....I pray for a cure, and I will keep praying for them until all are found.  Let them be in my lifetime!!!

Wendy Ann Lowden

Corner Brook, Newfoundland and Labrador

Canada

I have to be honest; the current “cartoon” about renewing a WED Foundation membership is not exactly how I originally envisioned it.  My original title was “What Have You Done for Me Lately?” and showed a person with arms crossed, saying “You want me to donate to the WED Foundation?  What have they done for me?” (see image below)

The reason I wanted to present the cartoon this way is because that question has been asked of me several times and in just that tone of voice.  I talk to a lot of people about WED/RLS; I am a support group leader in Missouri and am on the board of directors for the Foundation.  I also help moderate the Facebook page and am in contact with a lot of people.  I have made some wonderful friends because of this horrible disease but I have also come in contact with people who just have a different view of things. 

I am incredibly amazed and thankful for the many people who make donations to the Foundation because they see the reason for it.  Those donations may be for a specific area, such as research or education, or they may just be sent to be used where needed most.  These people realize that donations and memberships have to come in order for the Foundation to continue to do the work it does.

Many years ago, we received money from pharma companies for various activities.  But the Foundation received a lot of criticism from the media and yes, from WED/RLS sufferers for this so that practice was stopped.  Now we depend on donations and memberships to provide the services we offer.  Without these, the Foundation would have to close its doors.  As it is, we have had to make a lot of cut-backs and stop doing some of the truly beneficial things we used to.  For example, yearly patient meetings were held for a long time with various doctors attending as well as great speakers.  These were extremely popular but when funding went away, so did the meetings. 

Again, I want to thank the many people who consistently make donations and for the people who decide to become members.  I can’t stress this enough.  Without them, the Foundation would no longer exist.  What is tragic are the people who cannot seem to see the many benefits they gain from the Foundation.  These people never seem to be satisfied.  A free on-line diagnostic tool, free educational materials, free patient webinars, research grants in the amount of $1.4 million, free discussion board for support and help, free Facebook site…..so what?  Why should I make a donation?  What have you done for me lately?  I don’t understand them.  These “free” things take money to continue for everyone’s benefit.

There are also people who would gladly make a donation or become a member but just cannot afford to.  This cartoon is NOT aimed at them.  Times can be tough, other things take precedence; completely understandable by anyone.  There may come a time when they can make a contribution and in the meantime, the Foundation will continue its work for everyone.  And yes, I do mean EVERYONE!

I have been on both sides of WED/RLS; as a sufferer who is looking for support and information and as a board member who is trying to do the best possible with the funds available.  I make a monthly donation—because I AM on both sides and know the need.  If you can find your way to make a donation or become a member, then I say “Thank You!”  You can even send extra to cover someone else’s membership that can’t afford it.  But even a $5 donation is $5 more than we had.  If you can’t, then it is okay; maybe someday you will be able to.

So the “cartoon” was redone to give good information about what your donation helps pay for and also to be more positive.  Much more productive than my original idea!  However, I do realize that one thing is missing from this “cartoon”—a huge thank you to everyone who supports the Foundation in any way.  So here it is, the final panel for this cartoon:

THANK YOU FOR MONETARY DONATIONS

        THANK YOU FOR SUPPORTING OTHERS

                THANK YOU FOR VOLUNTEERING TO HELP