u/jaxxqs

Sry for the long post. I just need to share this with a community that understands this…

about a year ago i went climbing in nepal. was up at altitude trekking for weeks. i went back home to thailand and experienced wild pain in my toes and balls of feet. like someone was stabbing them with hot needles. i couldn’t walk.

went to see a neurologist. he concluded that it was due to compression trauma from using new tight hiking boots. I asked for an auto immune test but was repeatedly told i didn’t need it. was told to take gabapentin. didn’t do much but felt nice. the only other thing that helped was ibruprophin. that is obviously terrible, but every so often it gave me a small window of no pain. couldn’t wear shoes, was stuck on the sofa in pain most of the time. went to see a few different thai neurologist. same story. nothing we can do. here are some gabapentinoids and opioids. that combination was very nice but did little for the pain…

eventually someone put me onto a specialist clinic that dealt in peptides. they put me on a couple of peptides for a month which dramatically lessened the pain. but it came back again after a month. so i was going back and fourth on course, off course, etc.

peptides are obvs experimental and shouldn’t be taken lightly. But when nothing else works, i try the experiment. it sorta worked…

me and the wife decided to go to vietnam. during the trip the pain started going into my fingers and forearms. brutal pain. so i went to see a neurologist there out of desperation. she asked where my test results were from thailand. i didn’t have any. they diagnosed me just from my story. she was shocked. immediately ordered a battery of tests. finally tested positive for lupus anticoagulant. This was what i needed.

On my return trip to thailand i insisted to be tested fully. over this period i started getting stroke like symptoms. Numb leg for 10 mins, lost half my eye sight in one eye for 10 mins, experienced extreme memory loss. weird stuff. also my neuropathic pain got wild… finally i got diagnosed with triple positive APS. Was told i would probably get put on warfrin for the rest of my life. Wasn’t overly worried about that, the thing that bothered me was there were so many interactions. Ibruprophin and all NSAIDs being a big one as that was my lifeline. Also the other lifeline was peptides. They were also out as there’s not really enough studies to guarantee they wouldn’t interact. So now my only source of relief form the pain would be gone. Outlook for the future was looking mega grim. Was having a big toll on my mental health.

i was in between a few more tests before the doc put me on warfrin and i got 3 transient stroke issues in one day. I went to A&E. after some tests they suspected i had a minor heart attack… due to blood clots. They put me on thinners. That was a few days ago.

now i’ve been on warfarin for 3 days and my neuropathic pain has entirely gone!!

My brain can’t quite accept it at the moment. I’m shocked. It may come back who knows but at the moment i feel so relived. I can walk fine. I can think about doing things with my wife again. I don’t care if i’m on warfarin for the rest of my life. I will happily take it over the agony i was experiencing. my brain hasn’t quite accepted that the body isn’t in pain yet.

I’ve heard APS can come episodically from time to time. Is that alot of peoples experience? Very new to all this.