My Journey into RLS and the Autoimmune World

At 74 years of age and more than 60 years of dealing with numerous autoimmune conditions, I did not realize how much it would mean to have re-affirmation from this site. It has given me hope and encouragement just when I needed it. Thanks to so many of you for sharing your stories and your attempts to solve this exasperating puzzle. My journey has been full of bumps but there have been some special memories that might not have happened if not for these unrelenting autoimmune issues.

The most difficult part for me has always been trying to keep up with my medical information AND learning what's new in each field because the docs can't possibly remember it all (especially when it's necessary to relocate or change medical practitioners). This site has been so incredibly helpful by providing support and information that may lead to finding one of those mysterious puzzle pieces.  I hope sharing some of my story will encourage others because from time to time I hit one of those bumps, some bigger than others, and find hearing from fellow puzzlers quite helpful.

Dealing with multiple health issues

At about age 12-14 I started having migraines which also negatively impacted my sleep. I soon found out that I had RLS but it really did not bother me, just those who shared a room with me (my sister, my college roommate, my husband) until about 5 years ago. Of course, 60 years ago I just had sick headaches and twitchy legs!

In my 30s I saw an internist who referred me to a gynecologist for what turned out to be endometriosis. They also informed me that in addition to migraine and borderline depression, I had these funny sounding conditions that I now call Chronic Fatigue Syndrome and Restless Legs Syndrome. The relief from finding names and causes for the way I felt did not last very long as I began to look for treatments. However, I was motivated to become my own advocate and keep records, remembering to remind doctors of things I considered to be significant as one issue impacted another and issues changed over time. The resilience I saw during my career in helping children and adults with special needs constantly inspired me to keep on keeping on.

The strategies I've tried

After some health issues about 15-20 years ago and my resulting retirement, I thought I must be through the worst of it. Instead, I came to realize that this is a lifelong journey of recognizing a piece of the puzzle is missing and making the effort to find it or keep searching without losing hope.

The year 2023 has been very difficult, but when I read some posts on this site I realize how lucky I am and how much I have to be thankful for. I continue to try even random things like Irish Spring soap between the sheets and eating pickles. I don't know if either works but I continue because they don't seem to hurt! Currently, I am on 1 mg of Requip at dinnertime along with Seratame twice daily and SaltWrap Mag R & R at bedtime. I take a lot of magnesium throughout the day and iron + vitamin C every other night at bedtime. I also use a calming leg cream and take HyIand's Restful Legs (dissolved under the tongue) as needed.

Identifying my triggers

I found that sugar, decongestants, antihistamines, statins and antidepressants all trigger my RLS but I have been able to tolerate low doses that seem to be working (so far). I am fortunate that I have a supportive GP who listens to me as much as I listen to him in determining which puzzle piece to try when. A recent episode of what may turn out to be narcolepsy resulted in a sleep study scheduled for this coming weekend.

My strategies for coping

I have tried to find hobbies that help distract me when the RLS (my current primary issue) becomes overwhelming. I love to work in the yard but when that is not possible I weave on a small loom or draw and color. When my legs will not let me stay seated, I have put together a standing desk of sorts where I can continue to draw. If I am so tired that I can't stand up any longer, I use one of those leg/foot exercisers until the RLS abates.

Surely I have gone on too long but it has been rather cathartic so I thank you for your patience in letting me express myself. I do hope it helps someone because this site and the supportive people who use it have definitely helped me. My husband and a few very special friends also thank you for giving them a break from listening to me! Actually, they remind me of the progress that has been made and will continue even in my lifetime. BarnGir1