Hi all! My rheumatologist just gave up on me this week. We don't know what I have, therefore, it must be fibro. "That's what we are calling it, until we find something else." Ok, I understand. ALL of my labs have come back normal - except my ANA and the B12 was normal-low (MMA was fine though). We've ruled out MS, Lupus, most autoimmune disorders, no arthritis, no inflammation. I'm a mystery - here, have a pain pill. (Sigh)
The first neuro couldn't help either - she was an MS specialist and I really liked her a lot, but after I got in two car accidents in one week last month (with my children in the car, mind you), she referred me to a neuro-muscular specialist. I just saw him yesterday for the first time. He said all the labs he would order, they already have. But they are scheduling me for an EMG - I'm a little nervous about
He said I do not fit nicely into any one diagnosis. He said, if you fit three diagnosis' part-way, none of them are correct. We are taking a "broad" approach to the nervous-muscular system.
Meanwhile, after he did those strength tests on me, I am not doing well today. I can barely use the computer and have so much work to do today (my work is all on the computer). Two weeks ago, I was with another flare and I am not sure what triggered it.
I love reading this forum because you are real people with real symptoms and experiences!!! When I read about
fibro on a checklist, it's hard to really say. So many vague symptoms. May I compare my key symptoms to some of yours, and see if this is feasibly a fibro thing?
1. Tingling and numbness: mainly in my hands/arms, one side of my face. Same places all the time - but how it spreads is based on intensity. Sometimes I lose sensation in my skin; sometimes it feels deeper. Sometimes I can even feel my brain tingling... or like it is numb. The organ. Isn't that weird? Not my scale... but the tissue.
2. Extreme sensitivity to cold: even the most subtle breeze from a ceiling fan causes incredible aching. It is the kind of ache one would feel if they held an ice cube in their hand too long. Cold definitely makes this aching much more worse. I'm also sensitive to heat, though. It doesn't hurt like the cold. And with the cold, it is anything exposed. I have to wear gloves to bed sometimes, or take a hot bath. I'm not cold persay ... but my body aches as if it were in the bare in the snow.
3. Aching: It's not what I would call "pain" ... but it is uncomfortable and unpleasant. I can't even pinpoint it. It's like it is in my bones almost... but it's everywhere. I feel it in my arms more than anywhere else... but when it get really bad, it spreads to my sternum and rib cage. It's a predictable pattern and, like my numbness/tingling, follows a pattern. It is symmetrical typically.
4. Extreme muscle fatigue: I thought it was weakness, but we've learned it's fatigue-ability. Repeated motions. Contracting a muscle. Yesterday, just doing strength tests against the doctor's force on my arms caused severe tremoring and exhaustion. Even looking at a spot on the ceiling for two minutes was painful and caused fatigue in my shoulders and chest area. (Wierd). I am suffering greatly today and all I did was "push as hard as I can" for two seconds, each test. Pumping gas, brushing my teeth, washing my hair, slicing vegetables with a knife - these are hard for me. I can no longer grocery shop, fold laundry, do dishes. Any sort of manipulation in the air, while holding something. If I DO do it, I feel the burning of muscle failure... like if you were in a push up position too long. I describe it to people this way: it's like holding a 10-lb dumbbell in your hand, palm up, straight out to your sides and just hold it there minute after minute. I cannot even do that for a second... but, the strain and fatigue you would feel in your joints and muscles. The arms would drop, the burning, the fatigue... I feel that every day doing very routine tasks.
5. Tremors: I thought my vision was jittery. Turns out it is my body - vision is fine. I constantly tremor and have for nearly two months. It gets worse after muscle use, or certain positions. If I let my blood sugar get low, it gets worse.
6. I don't even know how to label No. 6. It's like a slight tickle, or very very light electricity going through my body. Have you ever, upon waking in the morning, not been able to squeeze your hand? There is a almost ticklish feeling to it, and no strength to make a fist? I have that constantly - every day, always, everywhere. It makes me bonkers. What is that??? Is it my nervous system? ARGH!
7. There is pain in my heels when I stand, my elbow if I lean it on a counter for support, a wood chair under my butt... anything that presses against anything. It's like I need to wrapped in pillows. :)
I really appreciate anyone who took the time to read this, and for any insight you may have. Does this sound like a fibro thing, or do you think I am dealing with some sort of nervous system issue? I have read so much about
fibro and the info sites do not resonate... but when I read from all of you, it sounds like the same monster.
Post Edited (tinglyinnc) : 10/24/2013 10:11:09 AM (GMT-6)