As a rule, I do not talk much about my health issues, because it serves no purpose for me. Honestly, it’s just something I have to deal with and I’d much rather be talking about fun, creative things. But I have sought out a specialist in Los Angeles, and I am feeling cautiously optimistic. So I have decided to share this journey, so that others might benefit from my experience. Welcome to the Fibromyalgia Treatment Chronicles!
Actually, the title isn’t completely accurate, because fibromyalgia isn’t my only health issue. But the Fibromyalgia / Chronic Fatigue Syndrome / Hypothyroidism Treatment Chronicles is just a bit long. And it is the fibromyalgia that motivated me to seek out the specialist.
My Fibromyalgia Symptoms
1. Fatigue. I am always tired. This never goes away. On good days, tired is all I am.
2. Post exertional malaise (PEM), is a medical term that means if I do something too physically taxing, I am going to suffer exhaustion. It’s the kind of exhaustion that can make a walk from the bedroom to the bathroom feel as though I have just run a marathon — pounding heart, somewhat winded, burning muscles, and slightly nauseated when it’s really bad.
3. Flu-like pain. In fact that’s how my fibromyalgia diagnosis came about. I ached like I had the flu for 3 days, but no other flu symptoms ever presented themselves. When I told my doctor about it (in 2015), fibromyalgia was his diagnosis. While pain can occur any time, it most often occurs when I am too tired.
4. Occasionally achy joints.
5. Unrefreshing sleep, meaning waking up feeling like you didn’t get enough sleep. If I can get 10 hours, I feel a bit better than usual, but sleeping for 10 hours is tougher than it seems.
6. Inability to focus, forgetful.
In order to keep the post exertional malaise and pain at bay, I try to rest often throughout the day. On a good day, I can be busy for maybe up to two hours of light activity, and then I have to rest. After resting for an hour or so, I may try completing the next item on my to-do list. Often, I don’t make it to the second thing on my to-do list. A lot of days I try to nap.
If I am going to concert or a movie in the evening, I will generally rest all day, hoarding my energy. Most of my hobbies are low energy in nature — making jewelry, crocheting, hand-quilting, stirring the muck on Facebook, uh, I mean interacting with people via the Internet, and writing. And all of this energy management is possible because I am retired. If I had to work a full time job, I don’t think I could do it.
The current treatment is low dose SSRI (that I was already taking for anxiety), and cyclobenzaprine, a muscle relaxer, when I need it. Yep that’s it. I’ve seen a few different doctors in the past few years either because we’ve moved or they have. When I bring up the fibromyalgia / chronic fatigue syndrome diagnosis to my new doctors, they all resemble a deer in the headlights.
I added a 10 mg THC/CBD edible for the pain as needed. It’s really pretty effective for the pain, but I try to hold off taking it until night as I can’t even crochet when I’m stoned.
The Search for a Fibromyalgia Specialist
The search for a specialist came about, due to my ragweed allergy. I’d gone to my local clinic, and I’d been prescribed two injections — a short acting steroid and a long acting steroid. OMG! I felt normal for the first time in forever. It was fabulous! Unfortunately, no one should be given steroids long term — unless they are going to die without them — because it will cause diabetes and osteoporosis. But it made me think maybe something could be done. I started researching, and eventually came upon The Holtorf Clinic. I will admit I went in with some skepticism, because some of their approaches have not yet been embraced by the broader medical field. But here is a group of doctors — and yes my doctor is an MD — who are willing to try rather than shrug their shoulders. It’s amazingly refreshing.
Michelle got married for the first time at age 52. Yes, it took her that long to find the right man. (In fact, she hadn’t been sure he existed at all.) Seeking life on her own terms with her beloved husband, she is curious about a great many things. Her educational / work background is in medical lab technology, business, and tax accounting, but her passions are sociology, psychology, science, and communication. Her motto: Authenticity in all things.
She writes about her hobbies and bits of whimsy at My Bijou Life