Living with RLS/PLMD

Hi my name is Kelly. I am 32 years old and I suffer from RLS, Fibromyalgia, neuropathy and ADD Since I was a small child I’ve been active. For years moving my legs at night when i go to bed became normal to me. I didn’t know anything different. Finally in 2006 the feeling of creepy crawlies and pain were told to me as RLS and it finally made sense why I can’t seem to keep my legs still alot of the time. At night I am forever moving my legs it’s actually how i fall asleep now.

I have been having some success with the creepy crawlies and pain since I started taking Lyrica. Thus far it is working very well. For me pain and weird things go hand in hand. Fibromyalgia is a non-stop pain from the time i get up to the time i go to bed.

My personal hot areas for fibro are my neck and lower back. The pain i have feels differently at different times of the day. Sometimes it’s a stabbing pain others it is burning pain. Some pain makes it hard to get out of bed. It’s easier just to stay in bed. This pain never goes away. Some meds for pain help lessen it but never fully go away. The best way to describe for those who don’t suffer with this.. think back to when you had the flu a bad flu even and that is my reality my life. I don’t have the fever but that is how i feel day in and day out. My daily medicine for pain is vicodin and percocet. The latter is for my bad days and the vicodin for my “normal” pain days.

I am on a daily muscle relaxer to help keep my muscles out of spasms. I’m not going to lie… i do have depression from the fibromyalgia but I am on meds and I take one day at a time. Life is different i’m not gonna lie but it has also given me a greater sense of how others with pain feel and also given me more compassion for others. I always have had compassion but before I might see someone overweight in a motorized cart and think why don’t they walk. Now I am that person that is overweight using the carts. It’s not because i want to but you have to pick and choose and lot of the time if i don’t use the cart i won’t make it through to get all my groceries.

There is a wonderful way of demonstrating this that I got when i first was diagnosed. It’s called the Spoon theory. It is originally for Lupus patients but it has become a major staple of fibromyalgia as well. Take a ton of spoons from the drawer. Ok for each spoon is assigned a task. Now most would say one for getting up brushing teeth and eating breakfast. With fibromyalgia one spoon is to just get out of the bed,another for teeth brushing,another for a shower in fact that usually takes two spoons. You keep this going and basically at the end of the day if you are lucky you are left one spoon. most would say go out get dinner instead of make it but in reality for us that means two sometimes 3. It is a hard road and the only thing that makes it a little easier to take is that no matter how bad it gets it cannot kill you.

I think that alot of people with Fibromyalgia are creative people. I know so many who have come up with ideas that help them with day to day life. Please if you are diagnosed don’t think that life is over. It isn’t. It is just a new way of thinking about life and learning how to cope as best as you can.