After some needed gum graft surgery, I was shearing our rescue llamas. Usually I can do our small herd of 5 with no problem. Not that day. I woke the next day crying with pain, thus beginning my long journey to where I am today.
Originally, testing showed wonky IgG levels, other high indicators of inflammation. High dose steroids…over 60mg per day…worked at first, but as soon as we started the taper, the pain came roaring back. So, on to the rheumatologist
What a joke. Because I was nearly 70, I was instantly diagnosed with fibromyalgia. Problem being that I don’t have any of the bio markers. The doctors ignored the fact that as a fiber artist, I’ve worked with my hands for over 40 years. They ignored the fact that I’m a rancher, so I am strong (or was). I was accused of “just wanting drugs” (I take about 6 aspirin a year). When a young, arrogant doctor, ignoring my physical history, decided to do a “strength test” of squeezing his fingers, pushing and pulling his hands, while saying “At your age you should expect a few aches”, I decided not to be polite and do as requested. He didn’t believe I could push him.
I got sent to our local major teaching hospital. I won’t drag it out, but repeated visits (2 hours drive each way) saw me in tears, as doctor after doctor, nurse after nurse, insulted my intelligence, lied to me about test results, told me I was a druggie, and more.
I went to functional medicine doctors, who, despite high fees, were unable to help. I’m not gluten intolerant.
Meanwhile, a dear friend in Scotland said “Kris, have they even tested you for ME? (Myalgic Encephalomyelitis) and sent me links to the incredible ME Association in the UK I read. I sent questions. I got respectful, thoughtful replies. I got questions to ask my doctor.
Along with this, my acupuncturist decided to go back to square one, and has been working hard since then to treat me and my symptoms with the goal of relief. It’s not perfect, but I’m still walking.
Late in 2019, I took a last chance, based on the recommendation of a trusted friend, on a doctor. Imagine my surprise when he didn’t dismiss me, or the probability of ME. He ran tests, found that my EBV (Epstein Barr Virus, cause of mono) were sky high. He then found a flipped FGFR3 gene, which tends to cause muscle pain and weakness that can come and go, exhaustion, and other markers consistent with my ME. He agrees that I have ME!
Since then, we’ve tried IV steroid infusion, in hopes of kicking my immune system back into gear, some other medications, which haven’t shown the improvement we hoped. He keeps looking.
I’ve had to give up wonderful llama hikes, spinning on a treadle wheel and going to an electric wheel. Before ME, I loved going to fiber conferences, connecting with friends from across the world. That’s a no. Last time I tried, after ME hit, I had to come home early, and spent a week in bed
I now rely on acupuncture, CBD, and hope There is always hope