Personal experience w/ Restless Leg Syndrome

[Vengeance of God]

I had it for YEARS. My mother said she could remember me as a teenager, having to move my legs while watching a TV movie. They would jerk and twitch and I would tell her I just felt like I had to move my legs. It would come and go periodically over the years (I'm 43 now). I remember times in school when I felt like I would go crazy.

A few years ago, it came back relentlessly. I would walk the floor until 3am. I would read a book in the bathroom, standing up the whole time. Car trips were a nightmare, when we would go to Maine in the summer I would almost be in tears asking my husband to pull over at the next rest area. I would cry at night from exhaustion, just wanting to be able to sleep. During the aesthetician training, I would have to stand up in the back of the classroom for hours at a time. I was constantly and chronically exhausted.

I kept going to the Dr saying 'something is WRONG with me'. Treated for depression, tested for sleep apnea, had labs that all came back normal. Finally one Dr sent me to have my ferritin levels checked after I did some research on my own. It's not iron but how your body absorbs and uses the iron. Normal would be about 100, doc said he'd like to see it at least at 85. Mine was 17. He put me on ferrous sulfate, Vit. C, folic acid and B12. I was taking a multivitamin but my body simply does not use the iron in that form. This summer I finally had my hysterectomy (fibroids) which greatly helped with the ferritin but didn't bring it up to a good level. In researching this, I found that my great grandmother and grandmother had pernicious anemia and my mom also had trouble with hers. My sister was having the same symptoms w/o RLS and her ferritin was 7. There is something obviously hereditary that doesn't allow our bodies to use iron very efficiently. The other supplements help the iron absorption. Since the surgery, I'm still on ferrous sulfate and the rest but I feel better than I have felt in years. And since I started taking these supplements, the RLS disappeared **completely**. If I run out - like I've done a couple of times - the RLS comes back within a day or two.

If you have a client or know someone who has this, urge them to have a complete CBC panel done and that their ferritin levels be checked as well. They'll have to specifically request it, it's not done routinely. But omg, what a difference it made. You can have a normal hemoglobin and still be deficient and most docs won't look beyond the hemoglobin. RLS is sheer misery and it may not be iron related but it's worth a shot.

 

[Memphis]

Personal experience w/ Restless Leg Syndrome

Tranquilspirit2006,
My sister also suffers from RLS, and is now on medication for it. Interestingly enough she also has pernicious anemia. As does one of our other sisters (2 of 5 girls), and our maternal great-grandmother.
So it definitely runs in our family. I know my sisters have been taking B-12 shots for years. And I know my sister who has the symptoms the worse is currently on folic acid as well as prescription meds.
She seems to enjoy a little leg massage as well before going to bed. But sometimes can't tolerate it well (can't stop moving) if the RLS symptoms are really bad.
It's hard when someone you love has RLS, I've seen how it can affect people with my own eyes!

 

[? I Like To Dance ?]

Personal experience w/ Restless Leg Syndrome

It's nice to be able to relax during a massage now! When I was in massage school, my legs would start twitching and I would have to physically move them. The first few times the other students were startled "What?? Did I do something? Did I HURT you??" and I reassured them I was fine, they'd done nothing wrong but my legs were going to move during massage and they should just ignore it.
When I was flying to Alaska during my mom's hospitalization I was thinking "Oh thank God I'm no longer dealing with the legs". I left BWI at 8am and arrived in Anchorage at 11 pm (don't know how long the airtime actually was, what with hitting all the US time zones!), and I don't think I could have done it.

Has your sister ever had her ferritin checked?

 

[shygirl]

Personal experience w/ Restless Leg Syndrome

She didn't know if they had checked her ferritin, but said she'll ask next time she visits the doctor.

Last year they flew to Maui to visit family as a 50th anniversary gift to each other. We were all worried about how she would do on the trip, especially on the airplane. But she did great!
But having the right meds apparently made all the difference.

BTW, they just got back from a big road trip last month! Who would have thought after years of not being able to even sit through a movie at a theater... she'd take it into her head to go on a huge road trip where there was never more than 2-3 days in one location! Seems like it's given her a new lease on life!

 

[Derrick]

Personal experience w/ Restless Leg Syndrome

The pharmaceutical companies did help me in one way. I didn't know this was considered a 'syndrome', I'd never mentioned it to a Dr, I just thought this was some weird thing that my body did. I first saw Requip advertised earlier this year and thought "RLS..? Constant leg movement? Could it be...?" and looked it up online. Actually I was hoping to find a message board with fellow sufferers and maybe get some tips on how to get some sleep. The ferritin thing kept coming up and that's when I asked the neurologist who did my sleep study about it. Given my major heavy 2 week periods and combine that with a family tendency to not use iron in regular supplements or food and it's no wonder I was fatigued and severely anemic. I don't usually eat much red meat but I would kill Angus burgers every day at work for those 2 weeks!

So glad to hear your sister is doing good. Yay for her on her road trip! RLS isn't just an annoyance, it's sheer misery and affects you in more ways than many would think, when it comes to having to sit at work or a theater, traveling, and then the exhaustion from lack of or interrupted sleep. Our annual trip to Maine this summer wasn't bad at all!