Since I could remember I’ve had sleep issues, so naturally the next progression of my medical journey would be to tackle the never ending cycle of no sleep.
A few weeks ago I finally had my appointment with a top sleep specialist in my area, and quite a bit was discussed. To start off the consult we discussed everything about my sleep habits and any issues I had. From what I could remember my sleep issues started when I hit puberty and since then it’s only gotten worse. My nights consist of routines in order to even fall asleep which include finding the proper amount of weight in the blanket combinations then being able to breathe in the cold air, and if the air isn’t cold then I need to make it, then on to my legs and feet which have always been a problem. About every night my legs have some sort of pain, whether it is a deep ache that spans my entire calves or sharp shooting pains that go into my feet. Regardless my legs and feet twitch, and some nights I even sleep with sneakers on so that my toes don’t bend backwards and spasm. Finding the right spot in order to keep my legs happy is always a challenge. Sometimes it keeps me up for hours or wakes me up periodically throughout the night. And I never wake up refreshed. I never actually feel like I slept at all.
When I actually reach the critical point of falling asleep is when I hit more trouble. Even when I was a small child I had vivid in depth nightmares which continued through my adolescents and into my adulthood. The nightmares typically do not have a reoccurring theme, but always play on my fears as nightmares would do. The main issue I have is not that they wake me up in a panic, which sometimes they do, but the fact I wake up and remember a majority of the dreams well into the day. Then to add to this I feel like I was actually living my dream the entire night so I wake up exhausted. Many times I wake up feeling like I had been running the entire night or have the bottoms of my feet so sore as if I was standing around just like in my dreams. Then I also have lucid dreams, and not the cool awesome kind, the sleep paralysis ones where it feels like someone is there or you are about to be killed. The dreams are so bizarre because my eyes are essentially open (I think, at least my mind creates the exact picture of my room as if my eyes were open) and there is either someone coming up the stairs to kill me or a ghost in my room. It freaks me out and those are the dreams I wake up in a full panic because it really throws you for a loop. I mean it seriously feels real!
During the night I also wake up with extreme thirst and typically have to get up to go to the bathroom 2 to 3 times. This of course wakes me up and doesn’t allow me to fall back asleep for about 30 minutes since I have to hit all the proper items I need. Every time I wake up I reset all of these processes. My nights usually end around 10pm, and I typically wake up around 6 or 7am to actually get up for the day. Even though that seems like a long time to be in bed, I am really only getting about 5 hours of sleep if I am lucky. Between taking forever to fall asleep and having issues staying asleep my sleep cycle is a nightmare.
So finally after seeing my rheumatologist for a few visits and getting medication for my fibromyalgia started he strongly recommended I have a sleep study done since a majority of my pain could be caused by the lack of restorative sleep.
When I did actually reach the sleep consult we discussed an overnight study then a day study. She strongly believes I have restless leg syndrome and potential for daytime sleepiness and nightmare disorders. The day study consists of a series of 20 minute naps throughout the day which can show more results than just the night study. My appointment, which was the soonest they could do, is April 12th and it couldn’t come any sooner.
For years I had thought of restless leg but always thought it was a disorder for the elderly, plus I had no doctor suggesting it could actually be something. And even though I have been on a variety of sleep medication not once has a sleep study been suggested, but as soon as I get a second opinion for the misdiagnosed POTS and the correct doctor it was practically immediately told to me that I need to have that addressed.
I have to say that in the past few months my sleep has been getting worse and worse just on my leg habits. During the day they fall asleep and at night they ache like someone has been beating me with a bat.
Since the consultation my mother has been doing research on ways to help my legs until we hit the actual study. The night last week where I had a horrible flare up (which still hasn’t subsided) and I came home like a zombie, my legs were at the point I just wanted to rip them off. The pain was beyond words. And worst of all the pain was all over my body making it harder to handle. That night when I went to bed my mother came in with a bunch of heating pads and wrap for my legs. She thought that wrapping them might help, so I laid there in bed completely out of it ready to cry as my mother carefully wrapped each leg making sure it was just tight enough. She searched all over the house for her old knee socks and put those on as well to keep the wrap in place as I slept. Then she wrapped the heating pads around each leg and got me a bunch of potassium filled munchies. I was so thankful for everything she was doing and the support she was able to give me when I literally couldn’t move. She is amazing in every way.
For now each night I heat my legs and wrap them before I attempt to go to sleep. Today of course I woke up with extreme pain since last night I felt I didn’t need to wrap them, so I wrapped them today which seemed to help. All I can say is that I’m ready for this sleep study. It is so overdue and so needed.
Imagine if I fixed my sleep and my pain subsided. Now that would be a miracle. Imagine if fixing my sleep could fix a majority of my problems. Imagine waking up refreshed and happy! Now that is a future I can look forward to. It is a future where I can truly begin to bloom.