#spondyloarthritis — Public Fediverse posts

Not a welcome Christmas present - not welcome at any time - failed roadworthy ‘cos steering bearings are shot. Geordie passed its annual physical only a couple of months ago though! (That’s not on the check list)

Glad it was caught before any accident. But this does mean I now need to walk to physio tomorrow - about 3 months sooner than the training plan. And walk back home. Eeep.

Will take it slowly, and clear the calendar for several days.

#spoonies #SystemicSclerosis #spondyloarthritis #lipedema

Chalk another one up for “it’s not in your head”.

Have had systemic sclerosis as well as the spondy since I was a kid, when Reynaud’s first appeared. It’s only now starting to distort my mouth, which is why the rheumy noticed it. Clearly visible in lung scans now too - cell culture will determine an appropriate inhaler.

10 years for an #endometriosis diagnosis, 30 for #spondyloarthritis, 40 for the #SystemicSclerosis. All of which so many doctors and specialists told me “you’re imagining it”.

What made the hindsight diagnosis clearer? A concept map of everything grouping related symptoms/diagnoses and a timeline of the same. Rheumy wants to use them with her student docs.

#ChronicIllness #spoonies

#Covid is a doozy.
#Paxlovid gifted heaps of brain-energy (but body shakiness).
Those five days are over and I’ve slid into the mire, weighted down with deep muscle fatigue. Slight rebound in symptoms - chills, fever, head goop, vision problems, cough. Sleeping heaps, insomnia fled with paxlovid’s final dose.
#Spondyloarthritis is yelling at me to stretch and move, but I don’t want to chance overdoing covid boundaries.
Pacing has become so much harder than *just* managing pain and autoimmune inflammation. Much respect and empathy for my ME/CFS friends, the fatigue is another level of difficult.
#ChronicIllness #ChronicPain

Trying to root cause analyse disabling belly pain, it's there for a few days and hurts to breathe/move, then gone for a while:
- weather+DIEP scar nerve pain, potentially worse without gabapentin
- #endometriosis & adhesions
- PCOS
- scar-hernia related
- IBS/bowel inflammation
- random surface-level tendon/membrane inflammation from #spondyloarthritis
My hospital rheumy doesn't want to chase this. "Most of these are not rheumatic and not imageable/testable." Gah.
#spoonies

@kistaro Aww, that makes me so happy to hear your response to mine! Anti-psychotics have considerably improved my quality-of-life in every single way since I started taking them all those years ago. To be honest, I used to be a real asshole without them thanks to my Borderline Personality Disorder, when it started becoming active/present at that point of my life. I don't ever want to be that kind of person again, especially for the sake of my friends. But don't get me wrong, these very powerful drugs do have their downsides.

Some of the downsides include high amounts of fatigue (although you do develop a tolerance over time as I have), unable to get a stiffy as easily (or even ejaculate sometimes), and the worst one, in my opinion, is diabetes. Almost everyone who's on a high dose of these drugs (like I am) will almost certainly get #diabetes at one point in their life, and after a few years of being on them, I now have to take #insulin twice-daily. My #pancreas is all but dead :/

This is due to the immense cravings for fatty and sugary foods that anti-psychotics give you, sort'a like the #munchies that you get with weed, I suppose. But it's active 24/7 instead and you even wake up at night in the middle of sleeping, wanting this food. A particular positive of this class of drugs though is that they also treat #chronic #pain quite well which I also have, due to my #rheumatoid #arthritis and #spondyloarthritis, which are both extremely painful, autoimmune conditions.

I'm very sorry to hear that you have generalized anxiety disorder yourself :( It's a terrible condition that I wouldn't wish upon anybody. If I may ask, do you currently work? Or are you on social benefits instead? I'm on the latter myself due to all the health conditions I possess. But regarding the Adderall, I actually heard that it calms some people down weirdly enough.

Thank you for the suggestions for my partner! He does drink coffee regularly although I'm not sure how much, to be exact. I think he's pretty happy the way he is, really. His employer is extremely forgiving and understanding of his symptoms and all of his friends are understanding too ^,==,^. But it's good that you're seeing a psychiatrist yourself, they've helped me so much in the past with getting my own life together! I've had mixed success with psychologists though and despite wanting to see one now, everyone locally is booked out by a year or more due to COVID-19 :/

My local psychiatrist is a really awesome person, he doesn't charge me at all for his services and instead just charges it to the government. I don't know of any other psychiatrist in Australia who does that XD

Adderall is a specific isomer of methamphetamine, I think? Different from the stuff you find in the street. I could be wrong but I'm pretty sure that's the case. Anyway, I'm sorry for the super long post ^ ^;