Pain is the new normal
I'm 35, single mother, payroll administrator near Philadelphia.
I'm not sure how long I have had SLE but in retrospect I could say at least 2 years. If I look back farther than that I can't pinpoint anything except fatigue and random/unexplained hand pain about 6ish years ago. But at the time I thought it was just one thing or another (and maybe it WAS just one thing or another).
The summer before last however, I began feeling knee and hip (mostly hip) joint pain with some joint pain in other parts of my body and extreme fatigue. Went to the doctor and was diagnosed with Lyme's disease (very common out here since we have deer ticks) but the (4) Lyme tests the doctor did all came back negative. At the time it made sense that it would be lyme although I never found a tick bite. I would have never thought that it would be anything else though.
That bout passed after a month and a half or so then had another time where I noticed hip pain and fatigue. Then spring of the following year I went to a tanning salon and began to get a rash on either side of my nose which I thought was strange because I NEVER get rashes…my skin really isn't normally that sensitive. I just sort of shrugged it off but decided to stop tanning just is case and I'm just not a big tanner anyway. But I do remember having at the same time the hip pain coming back.
I had gone to the doctor for the rash and she did some allergy test and they all came back fine (I'm allergic to almost nothing).
I will say that over the past two years I have noticed things like being sick more often than usual…not just colds but diarrhea and just feeling bad in one way or another. I have lost weight a bit and haven't been able to keep it on. Didn't drop a lot but it was enough to notice since I am prone to plumping up. I noticed hair loss and just sort of feeling "old".
This current bout began the beginning of October and hasn't really stopped since. I also have fibromyalgia, the Dr says, so I have been in pain in one way or another since. Hip pain, knee pain, extreme fatigue, chest pain, strange feeling heartbeat, hands swollen, headaches (all the time), hand pain, abdominal pain, muscle spasms. tight chest, pain when breathing in, I mean…it's all over.
I have actually forgotten what it's like to feel normal/good. Pain and discomfort has become the new normal. Some days I can barely walk.
The Rhem put me on a medrol dose pack (6 days) and MAN did that feel good but, as you all know, it is a serious medication with serious side effects so I am going to avoid that for as long as I can.
He has prescribed Cymbalta for the Fibro and Plaquenil. I JUST started the Plaq 2 days ago but am waiting on the Cymbalta. He wants me to begin the plaq first. I would prefer to only take just one if I can.
Since I have been learning about SLE I've noticed that I've had other symptoms that at the time I thought were just body stuff like rash on eye lids, sore on my nose, etc. little things like that. Beginning a few days ago I had new symptoms, wheezing, hoarse/tired voice...as you all know, the list goes on and on....
Thanks for listening