I recently have been diagnosed with Primary Sjogrens, Fibromyalgia and Raynauds. I
have a lot of burning in my knees and elbows. When I get up in the mornings I
can't walk because my feet hurt so bad and its not heel spurs. My right parotid
gland swells often and is painful. Sometimes my left parotid gland will swell
but not as bad as the right. I often wake up hot with no fever or sometimes
very low. Sometimes I have night sweats. I have pain in my left lower abdomen
and sometimes the pain is so great in the groin on that side I can't put
pressure on my leg. The pain is usually vague and sometimes more pronounced.
Sometimes it radiates to my lower back at top of buttocks (about 5 years). My
left ankle reflex is missing. I have hernated disk from C4 to C7 ??? I have a
sensation of bugs biting me all over my body off and on. Especially my legs.
It starts about an hour after I start moving around and can last off and on for
days (this has been happening the earliest I can remember 5 yrs old) along with
very dry itchy eyes. My left ankle reflex is missing. Sometimes my right jaw
line will itch up a storm. Sometimes my hair falls out for a few days. My
muscles in my hands, arms and legs will hurt when in use. Sometimes I bend down
and when I come back up my muscle burns and feel heavy as though I can't stand
without holding on. or kicking my legs in the pool and have to stop because they
feel like they weigh a ton. I hold a book or cup in my hand and have to let go
because my muscle in my hand burns and the item feels heavy. I have electrial
shocks on the right side of my head or neck occassionally. My blood pressure is
typically normal to low. I have a lot of dizzy spells. Numbness and tingling .
I'm not overweight or under weight. 5'7" 135. I try to stay active but this
disease is very disabling. My periods are still normal. I don't know much
about my family history except my mother has been diagnosed with RA and her
sister AS and differant aunt on mother side female cousin RA, Lupus.
Rheumatolgist says I'm too young to have RA and that my symptoms are from my
fibro. I don't think I have fibro because I don't have painful pressure points.
Except the one on my right neck shoulder area from my herniated disk. She first
said I had Lupus, than no Lupus and just fibromyalgia to Sjogrens with Fibromyalgia and Raynauds.
She tried to tell me I was too young to have fibro until I took a photo of my
hand to her I took on my cell phone. Should I seek a different doctor? I
also have shortness of breath followed by a dizzy spell with numbness in my
nose, mouth, and chin (left) with heaviness down my left arm into my hand(left).
I get these just walking into the grocery store. I don't smoke, drink or do
drugs. From 1995 to 2000 every spring and summer I could not lay out in the sun
or I had a rash all over the exposed area. I was never allowed to lay out
growing up or wear shorts due to religious beliefs. So I thought that had
something to do with it. Nov 1995 went to tanning bed about 7 min and that is
when the rash began. I remember having hives from laying out once when I was
about 12 at a friends house and broke out with the same rash back then i didn't
know the differenc and thought I had hives that lasted for two plus weeks.
This is certainly a lot to try to sort through. First, if you have a significant cervical herniation-it can cause alot of neurological symptoms from your neck down. Absent ankle reflex suggests pressure on a lumbar nerve. This piece is usually best sorted out by a neurosurgeon or orthopedic surgeon specializing in the spine. The low blood pressure, lightheadiness, night sweats, and temperature dysregulation could be autonomic dysfunction, which can be seen with Sjs. If you have your primary doctor check your blood pressure lying down and standing up with also checking your pulses (and being well hydrated), they can get an idea if you have orthostatic hypotension - a hallmark of autonomic dysfunction. A formal Tilt Ttable test can also be done, but can be expensive. There are a few centers where more formal testing is available for autonomic neuropathy. Simple things like staying hydrated, using support hose, and when you need to change positions from flat to upright, doing so slowly.
No adult is too young to have Rheumatoid Arthritis-there are good tests to make the diagnosis-Rheumatoid factor, CCPAb, inflammation markers, and X-rays of the hands and feet to rule out erosions. With a strong family history of RA, RA should be ruled out. Distinguishing between Lupus and Sjogrens is not always straightforward. It may take time, and they can occur together. From what you described-it does not fit with Lupus.