I would always be embarrassed to tell people what I had. I wouldn't be embarrassed to describe the symptoms, but to put a name to it, a diagnosis I would be embarrassed because I always felt that they thought I was making it up.
VINCY M.
1. Living with the Symptoms of RLS
The RLS definitely affected the quality of my life. I would hate to get up in the morning. You know, I'd stay up until 3:00, 4:00 in the morning, 5:00. It would vary, but I certainly wasn't going to sleep after 20 minutes upon going to bed. And uh...I hate to get up in the morning. I'd be groggy and sleepy. You know and have to go to work and there were times I actually called in sick because, you know, within hours, like I knew I wasn't gonna be able to function right. I was just so exhausted.
2. RLS Can Be Difficult to Diagnose
When I would go to my doctor I'd tell him about, you know, RLS and what I was experiencing. I kind of felt like that I wasn't being validated; that I was kind of, you know, it was being minimized and, but I tried what he told me to cause I was looking for some kind of, you know, relief from that and uh...none of that happened unfortunately.
It must have taken a couple of years before I finally uh...found the diagnosis, the validation uh...along with the diagnosis and the most important thing for me was that there was a treatment that was available to me.
3. RLS Is a Real and Treatable Medical Condition
I was officially diagnosed with RLS finally when I went to a neurologist. When I went to him and I described what I was feeling and I told him what I thought I had or what I assumed I had I was kind of happy because he seemed very nonchalant about it, kind of like my general practitioner did. I was seeing a specialist now and uh...he said, "We can help you," and I got really excited. You know, um...and I felt validated.
I was lethargic at work and I'd get home from work and didn't want to do anything. I just wanted to lay around, relax. Didn't want to get out and do the fishing or the... I, I did a lot of rollerblading and just felt too tired to do anything.
TOM N.
1. Living with the Symptoms of RLS
When I first started noticing the RLS symptoms they were in my legs and I would usually get up at night and pace the floor. Sometimes it would take an hour, sometimes two or three hours and they would eventually go away and I could go back to sleep. The symptoms just felt like uh...like, like something crawling through your legs.
My decision to talk to the doctor was more my wife's because she said I was keeping her awake, kicking her at night, hitting and she said I had to do something about it and see what the problem was.
2. Treatment with MIRAPEX and Lifestyle Changes
TOM: I started out with herbals and the herbals didn't work and tried another thing that he had come up with and finally I suggested the Mirapex because my mother was on it and the Mirapex works great.
The doctor I went to was wonderful. She told me I have a place for you and it was a sleep center that deals with restless legs syndrome. So that's where I finally started getting help.
PATTY B.
1. Living with the Symptoms of RLS
Having restless legs syndrome did have an adverse affect on my day life. I was often very, very tired during the day because I was up most of the night. Um...when I was first diagnosed, my children were very small. I didn't have a lot of energy for them as a stay-at-home mom and it made it difficult. I was looking often for times to take a nap. Let's take a nap, it's nap time, it's reading time, let's lay down. But I would notice if I lay down during the day the symptoms would start.
My symptoms definitely had an impact on my sleep tremendously to the point that I thought I had insomnia, and at one point was treated for insomnia and was given a medication that put me out at night. No dreams, nothing, 10 hours of blackness because of my legs to get me to sleep.
2. Diagnosing RLS
When I finally started to talk to a doctor about the symptoms that I was feeling in regard to the restless legs syndrome, it mainly circled around my lack of sleep. I still was focusing on the fact that I couldn't sleep. So the doctor was hearing, this patient can't sleep, I'll take care of that by giving her a sleep medication, never exploring why aren't you sleeping. What is disturbing you that you're not sleeping? It was simply, here's a prescription, this is going to put you to sleep.
It took about two years to get the correct diagnosis that I had restless legs syndrome.
3. Treatment with MIRAPEX
Once I began taking the MIRAPEX, even though I was reluctant, once I saw what it did for me....I would never change anything now in regards to taking that medication.
I found relief and I knew from then on I was going to be okay.
So it, it definitely has impacted um...our lives collectively as a family uh...and since taking the medication ...she now is capable of sitting down and enjoying a meal, enjoying a show with the kids ... on movie night.
BILL B. (Patty's husband):
1. Living with Someone with RLS
The RLS symptoms have affected the family uh...in a, in a number of ways uh...through lack of energy, um...her inability to sit still for any long period of time, uh...her need to, to be up and, and moving around interferes with things that we would want to do as a family ah...outside of the home.
Um...and even just sitting around watching a show together uh...the RLS is definitely impacted that where, you know, because of the lack of energy because she doesn't get a good night's sleep, there's, there's not a lot of activities in the evening and to sit down and try to enjoy a show with her is very difficult. She's up and pacing around often, minutes into the show. Ah...and when we're entertaining it actually impacts um...the guests as well because she, she finds it very difficult to sit down and enjoy a conversation without getting up and moving around and being busy.
Um...the, the lack of sleep made it very difficult for her to be active in the evening so, and be attentive for the children. So when I would come home from work it was kind of, "Here you go, here are the kids uh...I, I need a break. I have to go take a break.." and, and my job involves travel which makes it very difficult for her when I'm gone because she doesn't have that release ah...or that relief.
2. RLS Can Be Difficult to Diagnose
Her doctor had told her that that was probably what she was experiencing was a form of sleep disorder so she actually started off treating herself with um...sleep...sleeping aids.
It took a couple of years and a couple of different doctors before she actually found a doctor that um...ah...sent her to a sleep center and then it was at that point that they, they realized what it was she was experiencing.
3. Treating RLS with MIRAPEX
When they did say there is uh...a medication to treat what you're experiencing, we were both very happy. Uh...I have to say it was the happiest I'd seen her in a while.
She's been taking MIRAPEX for a few years now and I would uh...absolutely say she's experiencing relief when she's on the, the medication.
