Hello everyone. I’m here because my doctor thinks I might have fibromyalgia, but she doesn’t sound positive. I think she’s diagnosing me with fibro because she doesn’t know what else to suggest. Maybe you all could give me some perspective.
I’m 32 years old and in generally good health. Two years ago I had a bad bronchitis that put me in the hospital. While I was there getting nebulizer treatments, I developed this completely debilitating leg pain. I worried that I had a blood clot, but they ran a bunch of tests and there seemed to be nothing physically wrong with me. The doctor decided I was faking my pain to try to get opiods, which was totally wrong-- I’ve always avoided pain meds. If I ask for pain meds, it means my pain is at a 7, not a 3. But this doc decided I was an addict, told my husband I was faking it, and discharged me. I went into the hospital unable to breathe… I came out unable to walk.
Over the next month or so the pain gradually got better, and I went back to my life. There was no diagnosis. No one had any idea what had happened to me. But now, the pain keeps coming back. I’m able to walk, but my legs feel awful. I have muscle weakness and chronic fatigue, and there are some parts of my body that are super sensitive to touch: I can’t get massages, my physical therapist pushing on my triceps is really painful, and even just my 5 year old climbing on me is sometimes excruciating.
I’m currently in a flare up, so I went to a new doctor to see if we could try to figure out what the heck is wrong with me. I have a family history of autoimmune diseases and genetic markers for autoimmune disease, but my immune markers aren’t elevated right now. She checked me for a lot of viruses, and the only antibodies I was positive for was Epstein-Barr (mononucleosis). So she suggested fibromyalgia and put me on cymbalta, which is making me crazy nauseous but I’m hoping that’ll subside if I can just push through and try to tolerate it for a while.
Meanwhile, I’m a PhD student and I’m so fatigued and in so much pain that I’m not really able to function. It’s been suggested that, if I can’t get my academic timeline back on track, I might need to leave the grad program. I could take a medical leave of absence, but I would loose my student stipend and my family depends on that money. Health insurance would also be an issue. So I kinda need to keep powering through, but it’s so hard. I’m in a scientific field, and the research keeps me on my feet all day. It hurts so bad and it’s so overwhelming to get anything done. I just want to collapse and go to sleep. I’m so fatigued.
I’ll be okay for a while, and then it seems to come back over and over. Things that trigger it seem to be stress, travel, and minor illnesses like colds. Unfortunately, stress and travel are a big part of my life at the moment, and can’t be eliminated unless I give up school. I have to present at conferences, and being a grad student is just inherently stressful. Plus, I’m a mom for a 5 year old with autism. He’s a lot of work, and it’s not optional. I don’t get to take a break from that.
So I’m just struggling a lot right now, and trying to figure out if this is ever gonna get any better or if we’ll ever really know for sure if fibro is the right diagnosis, or just the one we went with because we didn’t know what else to call it.
Thanks for letting me join you guys.