The Demon That Is Sleep and Restless Leg

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.

rest

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.

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Weekly Photo Challenge: Fresh

Weekly Photo Challenge: Fresh

You can’t change who you are, but you can change what you have in your head, you can refresh what you’re thinking about, you can put some fresh air in your brain.

-Ernesto Bertarelli

This weeks photo challenge was “Fresh” and for me all that is fresh is represented in nature. This shot was taken at Longwood Gardens, which is my absolute favorite place to shoot. The conservatory always highlights foliage from around the world and just breathes new life into anyone lacking inspiration.

Connecting the Dots

It was 3 months of waiting around for the rheumatologist appointment. 3 months of realizing my entire life was practically a lie, a lie told and set in stone by someone you should trust and depend on.

I was walking around on a day to day basis telling myself I don’t have POTS. It was hard and honestly it was weird. Every pain I had, every inability to complete a task, I never went back and associated it with POTS. It was something else, something yet undiscovered.

The cardiologist left us with the lingering thought that I might have some terrible nerve damage or some other extremely rare and untreatable ailment. But through research my mother and I came to the conclusion before the appointment that more than likely I had fibromyalgia. It was shocking reading articles online about the condition and how just with a quick google search the top 10 symptoms of fibromyalgia I had. Before the POTS diagnosis one of the things my mother was thinking was fibro but no one ever told us to pursue it. Now here I was 6 years later about to find out the truth and have a definite answer.

Going into the rheumatology appointment I had made a list, just a general “all the things I can remember that are wrong with me” type list. This time no stone was being left unturned and everything was being ruled out. The list goes:

  • Head tingling
  • Neck pain with/without headaches
  • Difficulty focusing eyes
  • Brain fog (memory & concentration; slurred/stuttered speech)
  • Face rash with chills
  • Elephant on chest
  • Rapid heartrate (heart feels “weird”)
  • Chest pain (worse when active)
  • Acid reflux and gastroparesis
  • Arm/hand rash (little clear bubbles & at random times)
  • Bathroom habits (half constipated or not normal)
  • Can’t feel feet/legs (sitting or at random times)
  • Cold hands and feet
  • Muscle spasms in leg, feet, back, arms
  • Chronic fatigue
  • Constant aches
  • Severe insomnia
  • Random pain like electric shocks in various locations
  • Chills and sweats
  • Dizzy spells

And that was just what I could think of off the top of my head that I have experienced in the last month on going. As I wrote it I felt this wave come over me like, oh my gosh am I messed up. I could think of no area where I was so and so “right”. But at the same time I felt like I was regaining some power in my life. I was about to go to a doctor that hopefully could help me and really look at this list with a brand new set of eyes.

Can I just say he is the nicest man. He comes into the appointment with his aged face and wrinkled hands and cracks a joke. He goes on to crack wife jokes about how he is a “bad husband” but all in good fun. But then he got down to business. I gave him the list after telling him my story and his first response was.

“Some people might look at this list and think these are all random, unrelated things, but I am looking at this list seeing a connection between each and every piece.”

I almost cried. I was so happy inside. For once it was recognition that I wasn’t making this up, it wasn’t all random, and best of all IT WASN”T ALL UNRELATED. The pieces of the puzzle were finally coming together.

The referring cardiologist suggested somethings for him to rule out and it was all done with simple blood tests. He was a little suspicious that I might have celiac but the results came back negative. In fact the results came back negative in everything. The only area was my thyroid which had me going to a different doctor to rule that out. After that was ruled normal, and just a skewed blood test result, it was time to give a final diagnosis. It was after all fibromyalgia. All the symptoms fit together, everything made sense, and it was time to discuss treatment.

For some people fibro seems like a grim diagnosis, and to my surprise it is so far from it. Like so so far from it. The first medication we tried was Gabapentin, which I could not handle on a higher dose so we switched to this magic medication called Savella. We have been figuring out the dosage and at this moment in time I am on a very low dose. I was having to severe side effects to continue upping the dose so for now it is on the lower end.

The first few weeks of taking it was a miracle. Literally a miracle. I woke up feeling WELL RESTED. I woke up PAIN FREE. I woke up feeling human. I spent my days like someone without all these things would do. I was normal. For the first time since early childhood I felt right. It didn’t exactly last long, but I can say for 3 whole weeks I felt alive again.

We started playing with the dose after 3 weeks and I crashed. The headaches were insane and I couldn’t really eat since the side effect of this medication was extreme nausea. So where I’m at now is getting my sleep issues resolved. My rheumatologist believes after I can have normal sleeping habits again we can play with the dose and prescribe maybe a counter for the side effects.

The hope is seriously there. Every day I wake up and believe that this year might be the year I finally get a handle on my medical issues. And with each appointment that passes my hope grows stronger and stronger.

hope

Harajuku Fashion Show

One of my goals for Spring Break was to finally finish editing shots I recently found that I took in 2013. These shots are from the 2013 Subaru Sakura Sunday in Philadelphia. The designer was a local artist, Lele Tran who was inspired by Harajuku fashion. Here are some of my shots!