Hello, what a lovely group! I’ve been reading threads on and off all day today, and wow, I feel like I’ve read the story of my life, several times over!
I was diagnosed with psoriasis in 1982 at age 16, but first noticed skin patches around age 14. Back then I was prescribed a coal tar remedy, and that was that. Minor skin condition, no big deal… Who knew what was really at stake here.
Fast forward to age 33. I was under a lot of stress. College, family, a paralyzed grandmother (accident) whom we cared for at home. I was exhausted, in pain, and had all kinds of weird symptoms popping up:
nodules on my fingers
unrelenting back pain
tingling - pins and needles in my toes
halo effect around lights
I ended up with diagnoses of:
Idiopathic peripheral neuropathy
General Anxiety Disorder
My doctors seemed to focus on the hypertension (prescribed a beta blocker) and the anxiety (prescribed a benzodiazepine). And I’m sure hypochondriac was written in invisible ink somewhere in my charts.
I was told there wasn’t much to be done for the neuropathy, except lose weight, as they had no idea what the cause was, and I was given Celebrex and a pat on the back for the arthritis pain. After all, everyone has arthritis, so it’s no big deal, right. The rheumatologist told me, “I can prescribe Celebrex or Vioxx now, and you’ll be good to go. A year ago I would’ve told you to prepare for a wheelchair in ten years.” And proceeded to dismiss me back to my PCP.
I took Celebrex on and off, until the Vioxx scare, then I resorted to aspirin as needed. In 2013 I had surgery and can no longer take NSAIDs or aspirin. I now rely on Tylenol and Tramadol.
These past few months have been extremely difficult. I’m on the verge of giving up and filing for disability. Something I never thought I’d ever consider. I finally sought a new provider. She sent me to a new rheumatologist last week, and I will see a new neurologist in 2 days.
My new rheumatologist has left me reeling. He prescribed Methotrexate, and plans on a biologic when insurance will approve. I left there understanding that this is way more than a little bit of skin itching and discomfort along with some very painful joints. No doctor has ever made it a big deal before, and since I’ve had psoriasis and psoriatic arthritis for so long, it’s really been years since I researched it. I’m truly in shock at how it is so systemic, and leads to a shortened lifespan. This has been insidious, really. My thinking was - I’m just getting old. A new ache here, and new pain there, another knot on a finger. But, it’s ‘just arthritis’. It’s not ‘that bad’, look at everyone who’s so much worse off…
After researching all weekend, it all fits.
All the exhaustion, the pain, the neuropathy, the cataracts (removed in November at the ripe old age of 51).
I can’t imagine what damage I may have to my cardiovascular system. That is horrifying, as heart disease is already prevalent in my family.
So here I am. 51 years old, doing what I should’ve done years ago.
One step at a time.
Labs on Tuesday after the neurology consult.
First MTX injection immediately following.
Stocking for an anti-inflammatory diet.
Likely asking for a cardiology consult.
Likely continuing plans for disability (which shames me horribly).
Discussing if the beta blocker is still the right choice.
But, reading your posts gives me strength. The past is the past, and there’s not a thing I can do to go back and make my doctors more aware, nor make myself a better advocate for my disease.
I hope this is the dawn of a new day. I tried to make the best of my old ones, but I truly have some hope, despite my fears, that life can be less painful and more fun again.
I look forward to learning more!
Thank you! Sheila