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.