RLS and Fibromyalgia

I, too, have RLS & Fibromyalgia. I ,also, have arthritis, degenerative losses in my spine (3 surgeries).
I can't remember when I was diagnosed with Fibromyalgia, probably about 35 yrs. old. I remember being diagnosed with RLS within the same year. But, I remember being a child in grade school, unable to sleep especially on full moon nights!
I have tried everything I have run across. Of course, some things work for a while, and then stop. It'll break your heart on bad nights.
I am interested in following this thread, as the results should be published in more publications.

Hi . Before coming to this community, I moderated on our sister community, MultipleSclerosis.net. Many people with MS complain about that "crawling bugs" sensation. Here is an cartoon from one of the community's advocates that might interest you: https://multiplesclerosis.net/living-with-ms/itch. Have you mentioned this to your neurologist? The fact that you are experiencing this sensation might give your doctor more clues or guidance for your treatment. Wishing you the best. - Lori (Team Member)

Even after more than 60 years, it is so nice to get confirmation that it is not all in my head! Ray, Lori, Jill, star, and others, thank you for sharing some of your symptoms and your attempts to puzzle solve. It has been a long journey with lots of bumps but 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 is quite helpful. 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 GYN 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. After some health issues about 15-20 years ago and the resulting retirement, I thought I must be through the worst. Instead I came to realize that this is a life long journey of recognizing a piece of the puzzle is missing and making the effort to find it or keep searching without losing hope. At age 74, 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. 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. I found that sugar, decongestants, antihistamines, statins and antidepressants all trigger my RLS but I have been able to tolerate low doses that are 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. 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. BarnGir1 (Martha)

I was diagnosed with fibromyalgia when I was 35. That year I was also diagnosed with restless leg syndrome. I KNOW I had RLS as a child. I would wake up at night and wander around the house, or lie down on our cold floor. We lived in southern Louisiana, and it was hot. We did not have air conditioning until I was 18.
I have all the different specialists for other medical issues, but it's my Pain Management Specialist who has made the most difference. I can usually handle my symptoms as long as "nothing happens," but when I begin to fall ill, the extreme temperature fluctuations that I experience are the sure indications that I'm becoming ill. I can actually be hot & perspiring about my head - shoulders, and cold and shivering about my legs. It can fluctuate even within a couple of minutes. I had discovered I fans when I was in my teens, and use them still.
My grandson has RLS, I'm certain. Does he has fibromyalgia? I'm uncertain, but I will continue to watch & listen. If you know a youngster who has trouble sleeping, remember to keep track of whether they have sleep/ movement issues.