Last we spoke, I’d been newly diagnosed with Fibromyalgia, in and out of the ER, and coping with the intense flare that stress brought me. Since that time I’ve made it through the holidays, stayed out of the ER, and weaned off my fibromyalgia medication due to terrible side effects. I’m not really doing any better than I was. In fact, for the past two weeks, I’ve been almost entirely bedbound. We just know now that the ER can’t do anything for me.
It’s been tough. It’s been depressing. It’s been defeating. I’m not going to lie, I’ve cried a lot.
I’ve weaned off the Lyrica because it wasn’t doing much for my fibromyalgia symptoms and was causing a lot of added depression, anxiety, and vertigo. My doctors have officially decided to stop treating me with any additional prescriptions since I’ve had more trouble than luck with any of them. Although it is very frustrating to be medication resistant, I am grateful for doctors who are willing to take alternative routes when needed.
You may remember that I was referred to the center for functional medicine at Cleveland Clinic and put on a 6-month waiting list. Thankfully my doctor has connections with a doctor in Toledo who is heavily involved in the functional medicine center and has referred me to her. This means that I can see her and get straight into the Cleveland Clinic without a wait if she thinks that’s the best route or, better yet, receive the same level of treatment here in the area.
We’ve also found a lot of emotional trauma that is resurfacing and contributing to my depression and anxiety, so I’ve decided to try counseling again in the hopes of working through all of that in a healthy way.
As for my physical symptoms, my doctor says that my fibromyalgia is 100% active throughout my entire body. While you might think that just means pain (and it does include a lot of pain), it also includes a LOT of other symptoms including burning, nausea, spasms, anxiety, insomnia, and just all around misery. Honestly, before this, I always thought of fibromyalgia as just pain… I now know I was so very wrong.
My POTS symptoms are heavily active as well. I’m experiencing a great deal of blood pooling, near-syncope episodes, low blood pressure, and lots more. And the stress of it all has my Chronic Fatigue Syndrome flaring with adrenaline rushes, panic attacks, and extreme fatigue. My list of symptoms is extremely lengthy.
Basically, my body hates me. Or at least it feels like it. But I’m taking time to love it back in the hopes of winning it over eventually. Because body transplants aren’t a thing yet.
I’m doing my best to remain strong and continue fighting. I haven’t been good with being alone so my mom has been staying with me, which helps a great deal. And if you follow me on social media you’ll see I’ve been clinging to the Psalms for encouragement and peace. I’m in survival mode right now, and that’s okay. It’s what I need to do.
But being in survival mode means that I have to be extremely careful with my energy and my time. It means I might not respond to messages right away or answer phone calls, it means that I probably won’t be up for company, and it means I’ll take every bit of love and encouragement and prayers you send with utter gratefulness.