I’m stuck waiting for what feels like forever to see the rheumatologist after he sent me for lab work and vascular studies. I was originally sent to the rheumatologist by my family doctor because I started having raynaud like symptoms this past winter. I went in focused on my hands and feet because I never connected the dots between all of the other stuff going on in my body, so I was a passive patient as they asked me a bunch of questions...even saying no about chest pain because I wasn’t having any at the time and my brain was honestly so focused on my hands and feet; I even passively brushed off the question when asked if my hands are stiff in the mornings. At the end of my first appointment, he suspected raynauds, thoracic outlet syndrome or some vascular disease I can’t remember the name of.
Rewind to 2019, I started going to emerge about chest pain a couple of times. At the time the ER doctor thought they saw something on my chest X-ray and my d dimer was high so they sent me for a cat scan to rule out pulmonary embolism (it came back clear for PE). I also had an abnormal ECG, abnormal t wave. In the end, I was sent home with undiagnosed chest pain and told to follow up with my doctor. Well, again, I was passive about following up on the chest pain because I was also trying to get my doctor to listen about my chronic pelvic pain who made me feel crazy and I convinced myself whenever I had these flares of chest pain that I wasn’t dying so grin and bear it.
Fast forward to now:
•positive ANA 1:640 homogeneous pattern
•My eGFR test was flagged and suggested mild loss of kidney function (I’ve had microscopic hematuria and other urinary symptoms over the years, with a clear cytoscopy on my bladder). Doctors have also thought I had a lot of UTIs over the years but my cultures always came back clean/ having high leukocyte esterase.
•ESR was 24mm/hr (I’m in my 30s, female), CRP is 1.2 (1.9 back in winter)
•High d dimer when I had chest pain (but it was not a PE)- I’ve read d dimer can be high with SLE flare ups.
•Abnormal ECG- abnormal t wave- also again, I’ve read in a peer reviewed medical study the “most common abnormalities seen on ECG in patients with SLE were found to be... T-waves.”
•I was diagnosed by ENT with mild TMJ and again, just read that 67% of people with SLE also have TMJ issues
•when I was 14, I had shoulder pain that after some bone scans and MRI, the doctor diagnosed me with mild osteoarthritis.. to this day my right sided joints (knee, shoulder) tend to give me grief. I assumed it was from my years of lifting heavy weights and I brushed it off as being from lifting weights when asked about joint pain (my mom reminded me of when I was 14 after my first rheumatologist appointment).
•diagnosed with myofascial pain syndrome with cervicogenic headaches this year
Symptoms:
-Chronic fatigue
-Headaches of all sorts —tension, period, weather related, cervicogenic (diagnosed) and I suspect occipital, trigeminal as well... I honestly take Tylenol every single day.
-Neck pain
-chest pain that comes and goes. When it comes, it usually last days for a couple of weeks even up to a month or 2 ranging in severity. And I’m noticing that it seems to happen more in the summer.
-varied types of rashes in the last two summers. I thought they were fungal rashes on my feet once it was warm enough to warm sandals outdoors, but they didn’t respond to fungal creams. Also have mysteriously had hives a handful of times with no known cause (no changes in laundry detergents, soaps, etc) — never had a malar rash
-Nerve like pain in my hands, feet, legs. Itchy and/or aching legs at night. Arms and hands fall asleep in several different positions (back, side, arms up) at night to the point I have to wake up frequently to change positions (and repeat).
-chronic fatigue
-years and years of telling my mom “I feel like I have a fever but the thermometer says I don’t.”
-eyes are sensitive to light. Not sure if this one is just my headaches but my eye doctor warned me that my eyes looked really bad and warned me to wear my contacts less (I never sleep at night with them in). My eyes are always dry. That could be my contacts but sometimes by evening I have to take my contacts out because it feels so dry and gritty.
-fingers have been swelling at night, to the point I’ve had to take my wedding rings off in the middle of the night because they get so tight
- I’m probably missing more symptoms but I’ve been typing this for too long my hands hurt.
Anyway...
After I got a high positive ANA, I started researching more and almost felt relieved to have a name to all of the weird shit my body has been doing for the last several years. But I’m anxious to see my rheumatologist because of how passive and dismissive I was since I was so focused on thinking it was just primary raynauds. My family doctor and previous OBGYNs have gaslighted me into thinking I’m crazy about my pelvic pains all of the years so I just hope that when I go back prepared to present all of this information that it’ll at least warrant send me for further testing.
Does anyone have similar symptoms? Experiences? Any specific testing I should ask for?
if you stuck through this whole thing, thank you for reading. Waiting for follow up appointments is stressful when all you want are answers.
Thank you.
a GOOD rheumatologist please?!
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