Well Well Well. I’m back!
Miss me?
I missed you, you were all so nice to me.
its been a few years since i was last here. however about a year ago Jen and i were talking, thanks for all your support Jen. xo
Finally have some answers!
Ive been round and round the mulberry bush so many times ive lost count.
To Psa or not to Psa that is the question. ive seen 4 Rumy’s now. and everytime ive had PSA ruled out its left doubt in my mind.
“Fibromyalgia vs Psa!.. Round 256… Fight!”
sorry, im feeling a bit dizzy and wacky on this Rinvoq!
And it turns out despite being an extremely rare patient, after all its likely Psa / auto-immune! Not misfiring brain signals like they tried to have me believe.
Me
so im tendan/muscle only.
ive got no anti-body or inflamitory markers (not so uncommon)
no joint damage that shows on mri/ultrasound/xray
My pain and soreness does not respond to months of prednisalone! (thats a biggy apparently!)
mother, sister and brother have skin, i do not. i have pain in joints, wrists, ankles, knees, elbows, shoulder, biceps, neck,back (upper/lower), most fingers and tows - geez that list is depressing!
some scalp stuff and facial redness but it turned out to be yeast after years of wrong treatments.
the issues are debilitating at times, sore, weak, tender. “sprain like”. it started at 33. i was at the gym and apparently sprained my wrist lifting. it just never got better. And over the years the list of pain points has multipled.
A quick recap… i promise , its quick!
it took 4 years to get refered to a rumy in the first place, no doctor identifed multiple joint pain till then.
rumy 1 did a bone scan & blood test (showed nothing) and said I have psa and treated me with salfaixazne. For me that was awful, couldnt live life.
then second opinion rumy no 2 said “no”, talked me out of it, said i was sensitised. set me on a path of naturopaths, psycotherapists, dieting, and mediation (not that any of thats a bad thing anyway)
a couple years later i was still not 100% convinced with my pain etc, i went for round 2 with rumy 2 and he got angry with me. on to rumy 3 , examined me and did some xrays then he reassured me that he saw no evidence of anything bad.
a few more years, more pain, escalating situation etc, and not convinced i went to rumy 4. he was very different, he did everything under the sun. mri’s, xrays, then a steroid test. prednisalone for months. i was still in heaps of pain so we re-dubbed it “fibro”. he was upset on my behalf because there are so many treatment options for psa, but fibro is well just inconclusive, you dont have the answers you deserve when your diagnosis is fibro. not to mention practically nothing that can releive pain.
The now.
1 year later… back to rumy 4, somehow still not convinced, lingering doubt even after prednisalone… he took another look at me, asked me some more questions about my symptoms, then he said, i have some samples… lets try this… final test. there is nothing else, if this doesnt help then im afraid there is nothing more i can do for you… “Rinvoq” take these. for me = rough on the gut, and dizzy. very dizzy day one, less dizzy since, lots of tummy pain. but ive slugged it out and its gotton better, anyway at the 3 week mark i noticed i wasnt in any pain in my wrists and back. im not sure how long i was like that. then after 5 more days i feel amazing.
my right arm that i havent been able to lift over my head for like a year because of the shoulder and bicep tightness, is 95% better, still some deep pain in the bicep but i suspect it will go. I can lift it.
fingers, legs, everything is better. And im full of energy.
i even played table tennis at work today.
i was still in a bit of disbelief. “maybe im just having a good moment”, tomorrow i’ll wake up totally f’d.
but then i went for my massage this evening. i expected to discover when she starts poking me that im actually unaware of how bad i actually am. And as usual i’ll be screaming when she hurts all my sore muscles. But my massage girl was just as astonished as me, that no matter how hard she pushed my usual excruciatingly sore spots, it was mostly fine.
miracle. tears moment!
something has changed. and that can only be explained by a misbehaving immune system.
its still a very long road to go, but i actually have some answers!
