Yesterday's blog was about the renaming of restless leg syndrome to Willis-Ekbom disease and I described symptoms and the seriousness of this disease on quality of life. Today I want to share my personal experience with this disease. If you go to the RLS Foundation Web page there is a button to click that shows the faces of RLS. There are so many children that have this disease and the faces really bring a human element to this debilitating disease. Your face may be one of the many faces that remain unpublished. I know mine is.
When I was growing up I would have restlessness and that crawling sensation in my legs on occasion. My mother told me it's just growing pains since that's what she was told as a child. My maternal grandmother was also a "Nightwalker". Sounds sinister don't you think?! So I too am now a "Nightwalker", so is my daughter and my sister may be a "Nightwalker" too and her daughters and her granddaughters. That name reminds me of the zombies on AMC's The Walking Dead! Ha! I have severe Willis-Ekbom disease, which may have been excacerbated by Fibromyalgia since this disease is frequently a feature of FMS. In my 20's and 30's I continued to have intermittent episodes, which seemed to be related to slumping down on the sofa and reading. It was probably more about being in a resting position that triggered the episode. I was injured at age 41 and began to have more frequent episodes and would experience spans of time (several months to years) when I had daily symptoms when I would rest in the evening or when I would get in bed for the night. I had also developed tingling in my legs and trunk that was present both day and night. I attempted to correlate the symptoms with body position such as slumping down while reading. I would attempt to just ignore the symptoms of restlessness and crawling, but it would only get worse until I would get out of bed and start walking around. I started a routine of getting out of bed when symptoms would start, turning on the TV and I would try to get the feeling out of my mind. I would feel tired and eventually the symptoms began to wane, but I would be afraid to get back in bed. It was almost as though the symptoms were attached to the bed. So I would lay on the sofa, get a couple of hours of sleep and then wake up and get back in bed to complete my night's sleep. Needless to say I was losing a lot of quality sleep. This continued for years and the FMS symptoms had gotten better, but 8 years ago the symptoms began to gradually worsen and I became more severely ill again about 4 years ago. With this excacerbation of FMS also came an excacerbation of Willis-Ekbom disease. I developed a constant tingling, shooting pain and the restless crawling sensation in my arms, hands, legs, feet, trunk and head. I also have burning pain in the bottom of my feet, all of that in addition to the FMS pain too. I have told people in the past that I don't have any disease that could finish me off, I'm just going to live a long and miserable life. That was my sense of humor speaking, but there is always some truth in the jokes we make. Maybe you can relate . . . I was to the point that I had severe Willis-Ekbom disease that would worsen at about 7:00 pm every night and would not subside until about 2:00 am. I have found some relief with Requip 1 mg in the morning and 2 mg in the evening. I am concerned, because this is a progressive disease and the effectiveness of medications used to treat this disease is only a temporary measure. In addition, Requip can cause symptoms to worsen also. I will be talking with my doctor about that possibility and looking at a new medication that is a topical patch, which may also be easier on my liver. I had a very bad night a couple of nights ago. I had tried to get Requip refilled but the front desk staff would not ask the doctor to okay it. Instead I was told I had to come into the office first. That put me in a position that I had no medication for three days. By the third day the symptoms were so severe that I was unable to sit still for 27 hours straight and finally got relief when I could get Requip refilled. My doctor was dismayed this had happened in her office; I changed doctors so this wouldn't happen to me again.
I just want to reiterate that this is a serious movement disorder related to Parkinson's disease. You know, when I saw the sleep specialist the other day he told me that I have a severe case of Willis-Ekbom disease and that many people's attitudes are "Just get over it", because they don't understand the severity and debilitating nature of this disease. Last night I called my 87 year old mother to talk with her about this, because I know she has some symptoms. She was quite impatient with me and told me "Just get over it". Isn't that classic?
Please share your experiences here on my blog under comments. Whoever you are I know you need some emotional support. In closing, I would like to share with you a lovely flower that is one of the Ladyslipper orchids. Going to the garden gives me peace and tranquility in the face of life's most challenging moments. Blessing to you and may you enjoy every moment of your day!