Live and recent posts from across the Fediverse tagged #spondyloarthritis, aggregated by home.social.
Had a two week pause from adalimumab (Humira) while I got over the gastro virus. Tendons were ow, but not as bad as expected, but the angry psoriasis patches proliferated.
First shot back this morning, and it has knocked me right out. Made it just through breakfast before I fell back asleep. And leg hurts ‘cos I hit a bleeder (always, in the left leg).
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Looks like AbbVie has a new Humira facility in Germany to undercut the biosimilars. But their Adalimumab Fertigspritze are no where near as safe as my previous brand Hulio.
The new Abbvie ones are the cheapest non-retractable needles I have seen.
The pharmacy says to throw them in the normal burnable rubbish like the other safer variant. 😳
(I don’t use a pen injector as the buttons are too stiff for my hands to work them).
Gluteus medius is a pain to have cramped and become inflamed, and to have had physio on, with referred twinges around and through the hip into the thigh. It was clear where the edges gave way to the piriformis though - those too familiar sciatic tendrils reached toward the ankle. But those only get angry when poked.
Most of the physios at the reha zentrum have magical hands, and I’m grateful they have space for chronic treatments, and not just joint surgery recoveries - their primary clientele.
Just two mornings of light strength training, radio taisho movements and tai chi warmups, and omgowhowamigoingtogetthroughtheday?!
Yes, this is normal for me - muscle and tendon and bursa inflammation cause painful overreactions to exertion (in addition to the PEM fatigue/exhaustion). Docs usually say stop when they see/feel the inflammation and cramping, but this time, ortho wants me to push through it and continue as intensively as possible - her theory is doing something different may have a different (better?) outcome.
Holding an experiment mindset is much harder in the midst of this pain.
Of all the non-constant-on appliances in this household, the microwave would have to be the oftest used. Not for food though - the heat pack carousel is a pretty constant thing, even in summer.
#spoonies #spondyloarthritis
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.
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.
Shingrix vax price shock.
560€ is painful when i’m only 1.2 years away for it to be covered by insurance. But needs must, so I can switch to a different #spondyloarthritis arthritis med.
#ChronicIllness is so expensive.
I'm nearly 2 years too young for the health insurer/government to cover the shingrix shingles vaccine.
A letter from the rheumy specifically indicating I need it, and past medical history of many shingles infections won't sway the bureaucrats.
Rules work better when they are bendable to common sense.
A bit of a run around, extra blood tests, lip op/biopsy, MRI and shingles vax still to do, but rheumy intends to take me off #Adalimumab (Humira) next quarter as it has stopped working. Apparently this is common with biologics - develop antibodies to it, CRP goes up, more bits get swollen and hurt for longer periods, joints worsen.
Extra tests to see if we can pinpoint the #spondyloarthritis flavour it actually is, and then likely an IL-12 blocker. Fewer injections (yay!), but quite an increased shingles risk, thus that vax requirement.
Started with an osteopath to explore abdominal/lung pain to see if imaging might be required. She thinks it’s due mostly to compensating for the breast cancer DIEP and pelvic ops, with #spondyloarthritis complicating things. Will also get her to have a play with my slippy neck bones later.
I can breathe into my upper lungs for the first time since 2017 though, so she’s seems to be doing good.
But oy heck do her tiny gentle movements hit me like a truck a day later - am utterly exhausted and will need to spend the day flat.
Osteopathy is Australia is closer to manual physiotherapy here in Germany - more massagy and stretching. Osteopathy here though is very strange - magical fingers making tiny movements or putting slight pressure in seemingly unrelated spots.
#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
@Kymberly I have #spondyloarthritis too and I’m also from Melbourne 😊 Currently being diagnosed for C-ptsd. I’m a knitter and crochet as well. Fashion andvtextile designer as my career.
And here it is, an #intropost in which I list as many hashbrowns as possible! Incoming hashbrowns!
I’m pretty sure I’m on the planet to help people, and right now I’m pretty sure the greatest help to us all lies in overthrowing oppressive systems. Trying to live #antifascism, #antiracism / #AntiRacist, #bodyjustice / #antifatphobia, #AntiAbleism / #antiableist, pro #lbgtqai, #landback ideas and practices, and to engage in #interdependence through #mutualaid, #community, individual irl relationships, and #directaction . Since I am #disabled with #autoimmune bullshit (#spondy, #spondyloarthritis , and #lupus / #borderlinelupus) I am very interested in #ArtAction , #artactivism, and #musicactivism (that I can do from home.)
My background is in #finearts and I love every single #crafting / #craft / #maker activity out there. Right now I’m obsessed with #procreate and #sewing. I’m also a layperson #herbalist and #gardener.
I have learned that I am happiest as a #catparent with exactly #4cats in the house (which I currently have.)
I’m pretty sure identity is super fluid, so it feels funny putting up labels, but I am also #demisexual, #witchy, #neurodivergent, #homebody. I love #tea, #starwars, #surrealism and #dadaism, and my excellent partner. I have a high tolerance for #weird.
So there ya go.
Hi, I'm Kym (aka Seirff) - an always cold fire #dragon.
Work: #Freelance #techwriter with a computer science degree, #ghostwriter, #editor & #proofreader, #translator (DE>EN), & former #ESL teacher. I write and draw diagrams at drawio.com.
Open for new clients, especially academic, and diagramming topic requests for the #drawio blog.
Where: Living in #Leipzig, Germany, after a short stay in #Fukushima, Japan. Originally from #Melbourne, Australia.
Owned by two big fluffy Maine Coon #cats, whose fur is the bane of my and their existence.
On the rooftop balcony I grow as much food as possible with a black thumb - #gardening.
Eternally curious, I share my learning process, crafting, art process and deep thoughts about tricky topics with #Patreon members.
Woven items and art, #ESLteaching and learning materials and tips are available over on #KoFi.
Many hobbies - #languages, #art, #piano, #cello, #guitar, #gaming, #sewing, #xstitch, #tapestry, #yarn crafts like #crochet, #knitting, #weaving & #spinning.
Occasionally also #3dPrinting & #MiniPainting.
Gentle persistence is my mantra - #spondyloarthritis / #PsoriaticArthritis, #SystemicSclerosis, #endometriosis, complex #PTSD, #BreastCancer survivor, #migraine monster - a collection of #ChronicIllness. I rant about the health system and incompetent doctors. #spoonie
I want to read your toots, not go down the boost content rabbit hole.
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
@Phoenix_Borealis Neither did I! And yes! I totally want one too, especially if it works out to be more comfortable to wear.
I'm physically disabled, myself, suffering from #rheumatoid and #spondyloarthritis (#ankylosing) along with #fibromyalgia, so something like this seems perfect for me given how hot, heavy, and fatigue-inducing regular #fursuits are, especially if they're #digitigrade in any manner.
I'll have to keep this in my ideas box for the future.
@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 ^ ^;
A rough week, full of ibuprofen and PPIs. Fluid on the lungs, shingles, and a pinched nerve at just the right spot in the spine feel roughly the same. Kinda glad it was the pinched nerve, even though it was more painful. #spondyloarthritis #psoriaticarthritis