I now think going to the doctor when you’re miserable in pain is the equivalent of going to grocery store when you’re starving – you’ll grab at anything that fixes your immediate problem, no matter how bad it may be for you! Although a doctor seeing you in pain may help them take you more seriously (how… Read More
It’s frustrating when things are “normal” yet you know they’re not “normal”! My EMG/NCS was normal. My muscle enzymes are normal. All of my MRI’s (head, spine, thigh) have all been normal. Even my sleep study was normal. Yet I have fine motor control/dexterity/muscle issues. All of these tests (with the exception of the sleep… Read More
When talking with my rheumatologist today about my concerns, I was trying to stress that it’s not the dry eyes and dry mouth (the “hallmarks”) of Sjögren’s that is concerning me…it’s the fatigue, muscle weakness, loss of fine motor control, joint pain, etc. If it was just the dry eyes and mouth I would be… Read More
My muscle weakness has been getting more consistent, and occasionally more severe. It’s in my quads and my biceps. Things like walking, stairs, washing my hair, cooking, etc., make me cringe. The best way to describe it is it constantly feels like I just finished a vigorous, intense workout. That shaky, weak, tired, just finished… Read More
When I had small children, I never understood why they fought nap time. I always thought to myself “If someone would tell me to take a nap everyday, I’d love it…I’d never fight it!” Of course, this was from the perspective of a normal, healthy, energetic, busy, efficient, successful mother of two young children. Several… Read More
I wrote in my last post about my increasing muscle weakness. I’m afraid that was just the beginning. It’s continued – sometimes worse than others, but almost always present since then. It’s primarily in my quads and upper arms. Going up stairs (even the half-flight in my house) is becoming difficult – especially if I’m… Read More
As I mentioned in my last post, I was scheduled for an appointment with a neurologist after being able to more accurately and effectively communicate what’s going on with my hands. I’ve tried to describe it consistently as “they just don’t work right…they don’t do what my brain tells them to do…they’re clumsy and weak…I… Read More
I’ve come to the realization that lately my life contains a lot of “lesser of two evils” decisions. I’m faced with a lot of choices where neither outcome is exactly pleasant. I know that I’m an adult and not everything is rainbows and unicorns, and as an adult we’re often making choices that aren’t always… Read More
I’ve been through the holiday season several times since beginning this autoimmune journey. However, since it keeps getting worse (new and worsening symptoms) over the years, this holiday season has already started out with several frustrations. It’s amazing how little things can really affect your day/mood/attitude. The first one has nothing to do with holidays,… Read More
There seems to be a “sweet spot” for diagnosis and for people reacting to what’s going on with you in a way that reaffirms what’s happening. I was 31 when I first reported symptoms to my PCP and optometrist. I know that I was younger than that when symptoms first began showing up. It took… Read More