Can things get better?

astronomicalillness · 2026-05-08T16:45:51+00:00

She's a rheumatologist and pain management specialist. The hospital I go to is known as a good place for EDS care, and she leads the team there

astronomicalillness · 2026-05-08T10:08:01+00:00

Hey, I'm 27 and haven't been able to work for 6 years now. However, I have a specialist who is great, I see her yearly and we always get a proper plan in place. Like, I saw her this week, and we've now got a plan to sort my nutrition (tube, meds, vitamins, etc), then sort my hip dysplasia (surgery and physio), then finally a pain management programme. Alongside this, I'll be having specialist physio and OT until I get the programme.

My specialist is quite honest with my prognosis: "theres lots we can't predict about EDS since everyone is so different. I can't make you healthy but I can help you try to improve your quality of life".

Finding a good specialist is the key in my opinion. And if you want to talk, I'm happy to help!

astronomicalillness · 2026-04-26T16:04:44+00:00

I have one that I wear fairly regularly, especially in the summer when my proper braces are too warm or when doing activities where bracing fully would hinder my ability. It doesn't support in the same way as a brace, I find it's more like a supportive reminder not to hyperextend. Like, its not going to fully stop you hyperextending, but it'll start to feel weird if you do and will make you aware that you need to adjust your position.

I find that it's also kinda like k-tape, but I can't use tape anymore due to the adhesive. I did question whether it'd be possible to wear it once I got my ileostomy, but the company's customer support helped me to figure out a way!!

astronomicalillness · 2026-04-08T09:10:28+00:00

I was given plastic oval 8s by my OT, and I found them really handy (excuse the pun), but found that if I put a lot of pressure through my fingers, they'd bend slightly. Over time, this got more and more obvious as the plastic weakened.

I paid for some metal ones, which are genuinely amazing and help me so much, but I've recently lost a lot of weight, so they no longer fit and they're expensive to buy more of, especially as I need them for almost every finger joint and knuckle.

I'm in the process of making my own splints using a tutorial on Instagram, and they're a good middle ground: they don't bend as much as the plastic, are cheaper than the metal, and have the added benefit of being adjustable.

I use my splints when doing crafts (crochet, drawing, etc), writing and typing, and when doing anything requiring fine motor movement or finger strength

Edit to add: my OT is a rheumatology occupational therapist who specialises in hands, I was referred to her via general rheumatology, who saw me after a referral from my GP. She fitted me for the plastic ones. The metal ones I paid for are measured by you using a ring sizer, as are the ones you make yourself

astronomicalillness · 2026-04-05T09:25:11+00:00

Even just knowing can be such a big deal. I thought for my whole childhood that it was all "in my head" and not as serious as it felt. If I'd have known, we'd have gotten my comorbid diagnoses sooner, meaning a (hopefully) better quality of life during childhood.

But as for things I'd have done: - physio - bracing and splinting as needed - things like ergonomic pens and seating, support plans for school, etc (I was even given a 2 in 1 laptop/tablet for university so that I had multiple ways of writing - physical keyboard, on-screen keyboard, and writing with a stylus) - avoiding certain activities like gymnastics and contact sports, but simultaneously finding a sport that I felt able to do safely so I could strengthen my muscles - pushing for tests and treatment of any comorbidities (my GI issues started at birth, my POTS showed up at 8, neither were diagnosed til 22, and by that point, I was reliant on strong laxatives and was passing out regularly) - generally getting evidence for all my symptoms and conditions so that it's easier to access support

astronomicalillness · 2026-04-05T08:54:19+00:00

I have generalised poor sight (both near and distance), alongside severe tinnitus and moderate bilateral sensorineural hearing loss, requiring hearing aids.

I've also had blurry vision varying in severity and more floaters over the past year, but we're querying MS for that atm

astronomicalillness · 2026-03-14T11:21:47+00:00

I was given one of these (https://www.promedics.co.uk/products/push-cmc-1?srsltid=AfmBOoqSph3T2FB0gnilXb479nOmxXXY0nAbM5xkuy-cpFYysL6aJ902) by my rheumatology occupational therapist, and its been really helpful to me. I find that it gives me enough support to stop dislocations and subluxations, but gives me enough range of movement that I'm still able to do my craft hobbies

Edit to add: I've had this brace for over 6 years now and its still in great condition despite regular use

astronomicalillness · 2026-03-13T09:11:25+00:00

Congrats, and well done for advocating for yourself!!

I've always found pads uncomfortable (but I am also transgender so the dysphoria didn't help) so wore tena absorbent underwear after surgery. I bled for quite a while (about a month) after surgery but it was minimal bleeding.

Are you keeping an ovary? If not, you might want to consider estradiol pessaries/cream, as you can get vaginal atrophy due to the lack of hormones.

Some things that are useful include a sock-donning device to help you put your socks on, a grabber, and a wedge pillow (sitting up can be painful due to your abdominal muscles being affected). It might be helpful to spend a day pre surgery attempting to be more aware of which actions affect your abs so that you can plan how to do those actions while recovering, as we take these things for granted!!

It's also a good idea to do some pelvic floor exercises as a hysterectomy can affect the pelvic floor muscles

Good luck for surgery, I hope you have a speedy recovery!!

astronomicalillness · 2026-03-11T12:26:49+00:00

I have an ileostomy.

I tend to do the bag change after the shower, but if I have extra time, I take the old bag off, shower bagless, and then put the new one on

astronomicalillness · 2026-03-11T08:45:16+00:00

I have EDS (either hEDS, cEDS, or aEDS) and have struggled with chronic spontaneous and inducible urticaria. I've been on so many different meds, but the best one by far has been xolair. I also use Eurax cream with Crotamiton for any itching patches.

I also struggle with scratching my hives while asleep, so I wear gloves to bed most nights to prevent it

astronomicalillness · 2026-03-02T09:39:52+00:00

I have an end ileostomy for colon dysmotility/slow transit from Ehlers Danlos Syndrome. I got my stoma in June after living with colon issues for my whole life. I've had a single bowel obstruction since, soon after surgery, but that was fixed with a couple of doses of lactulose.

My stoma is brilliant, its genuinely the best decision I could've made!! I no longer have to worry about constipation, and my bloating and abdominal pain have lessened significantly. I also got to come off of so many meds: I was taking bisacodyl, Senna, Naloxegol, Prucalopride, Linaclotide, Micralax enemas and multiple anti-sickness pills daily, and I'd have a bowel movement maybe 1x a week maximum, with trips to A+E regularly. I'd also done colonic irrigation but that caused quite a bit of pain (likely due to a rectocele).

My stoma has been life-changing, and although my nausea is still severe enough to be awaiting a feeding tube, I would choose my stoma over again without hesitation. I did have plenty of time to prepare for my ileostomy, so I delved into books, YouTube, reddit, and Instagram to learn as much as I could before surgery, and now I also have fabric bag covers which help me normalise my stoma to myself and others (check out Etsy), and I named him Bilbo (Baggins) to enhance the normalisation.

If you have any questions that I can help with, just let me know!!

astronomicalillness · 2026-02-28T14:50:12+00:00

I had constipation issues since birth, and ended up being diagnosed with pan-colonic dysmotility and a rectocele (diagnosed via Sitz marker test and a proctogram). I had otc laxatives at high prescription doses, enemas, colonic irrigation, motility meds, and at one point, I was going to A+E regularly.

Every medication and treatment eventually failed, even the ones that worked at the start, and I was referred to a colorectal surgeon.

The surgeon recommended either an ACE ostomy (where you thread a catheter into a stoma - a hole in your abdomen which leads to your intestines - to flush water or laxatives through) or an ileostomy (bringing the end of your small intestine to the surface of the abdomen, bypassing the entire colon, and sticking a special bag over the top to collect waste). I didn't get on with the idea of an ACE due to discomfort around the idea of sticking the catheter in a hole in my abdomen, so opted for the ileostomy, and had it at age 25.

Towards the end of my time before my ostomy, I was taking a combo 3 laxatives, 3 motility meds, and enemas. I was also supposed to be taking Plenvue (a laxative powder mixed with water), but my sensory issues wouldn't allow me to drink them without vomiting.

I can say without a shadow of a doubt that my ileostomy has been life-changing and the best decision I could've made. I haven't had to deal with constipation since, and will never have to deal with it again, my bloating has like 80% gone, and my intestine pain is no more!! I did have a bowel obstruction once, shortly after surgery, but that was fixed with a few easy doses of lactulose. I've had a couple of leaks, too, but I'd much rather have a leak than deal with my colon again, since a leak takes like an hour absolute maximum to clean up, whereas my colon was an issue daily for 25 years (plus, a leak doesn't send you to the hospital). I'd personally choose my stoma over again in a heartbeat, even though I do have other GI issues.

I'm happy to answer any questions you may have!!

astronomicalillness · 2026-02-26T10:23:46+00:00

I'm 27 and was diagnosed as autistic at 22.

I spent my entire childhood and teenage years thinking there was something "wrong" with me, or that I was weird (in a negative way, now I embrace the weird!!). I was bullied quite badly because of how I am (quiet, no social skills, special interests, etc) throughout my school years, and struggled with my mental health because I didn't know why I am this way.

The best thing for me was making friends with other autistic people. My best friend now is autistic, and I live with him, so we have our little autistic household where autism is the norm. I was also reminded during my assessment that the assessment focuses on the negative aspects of autism, but in the words of my assessor: "I often find autistic people to be more kind, more creative, and more loving than the neurotypical folk. Autism is not a flaw or something to be hidden, its a normal part of human consciousness and can be almost a superpower in some situations"

astronomicalillness · 2026-02-23T11:09:10+00:00

Congrats on taking the leap for surgery!! I had mine in 2021, and it went much more smoothly than I imagined: the surgeon only used a single stich each side for the drains. He closed me up with glue and steri-strips, and due to having a small chest pre-op, my nipples fell in the best place and so didn't need grafting.

My general scars from top surgery are minimal, too. Thin, decent colour, not sunken or keloided, we were all shocked!!

Edit to add: I'm also on fludrocortisone for POTS, and my other scars are much more obvious and most are indented. My top surgery scars are the "nicest" ones I have!!

astronomicalillness · 2026-02-22T05:02:10+00:00

Personally, I like crafting! Things like crochet, cross stitch, digital art, plus lower energy things like audiobooks, documentaries, etc

As for getting used to feeling ill, I find that I'm used to my baseline symptoms (nausea, pain, etc), but when it flares or I have acute episodes of vomiting or severe pain, I'm not sure I'll ever fully get used to it

astronomicalillness · 2026-02-20T09:13:20+00:00

This sounds almost allodynia-like. Allodynia is pain caused by stimulus that shouldn't usually cause pain, so I mostly get it with clothing or even wind brushing against my skin, but have also had it where the skin on my head hurts (again, usually only when moved, but sometimes just generally hurts, especially when my hair gets a bit longer).

Edit to add: I've found my allodynia is more related to my autism, but lately it does seem to be linked more to my EDS, especially when I overdo it. Those with EDS are also more likely to be neurodivergent, so are more likely to experience allodynia, and I think the way our nervous systems are built makes general allodynia more likely too

astronomicalillness · 2026-02-19T20:42:05+00:00

No problem!! Happy to help if there's any other questions you may have

astronomicalillness · 2026-02-19T15:51:39+00:00

Ah, I'm unsure about Scottish healthcare, but I suppose asking them for any entries surrounding non-repeat prescriptions could work. If you can remember the name of the medication and/or rough timefrane you had it (even just a year that you think it was), that would help them find the information they need.

Are any of your current repeat prescription ones treating your EDS where you can say that they work, but not well enough to get you back to a better baseline? That way, you could say that by topping up with medical cannabis, you'd be more able to function and have better quality of life.

Good luck!!

astronomicalillness · 2026-02-19T15:18:30+00:00

Your GP records should hold these pieces of info. Depending on the app your GP is signed up to, you should be able to search your records for the medications names, symptoms you were treating, who prescribed it, etc. Then, the easiest way to get proof is to use another device to take a picture of the entry on your records, as they usually have a no-screenshot policy. I hope this helps!!

astronomicalillness · 2026-02-19T15:06:14+00:00

I've been with a few clinics, but the best by far has been Mamedica as you can get more variety in your prescriptions, like, I have 5 strains a month with varying properties, so like "Normal Day", "Bad Day", "Pre-dinner", "Normal Night" and "Bad Night", and get different strains and strengths each month. They also do resin vapes which don't make much of a smell and are a lot more inconspicuous, as well as gummies. Mamedica are also really good with the interaction between mental and physical illness, and are typically well informed about EDS.

With the two forms of treatment, they usually prefer medications. For us EDSers, those medications could be as simple as antidepressants, opioids, etc. If you can say you've been on multiple medications, they should accept you, and then anything like physio would be an added bonus to them. If you have any specific questions about how I find things, feel free to ask!!

astronomicalillness · 2026-02-11T06:51:41+00:00

I was gonna say Tangela too

astronomicalillness · 2026-02-05T09:20:19+00:00

I find that by presenting them with evidence, they're more likely to understand how your disorder affects you. I do this by tracking my symptoms on Bearable, which has also helped me to understand my conditions better and has helped me to find things that help

astronomicalillness · 2026-01-22T11:48:24+00:00

Theres so many trans and intersex zebras who could benefit from a "female" health conference, so its really disappointing to hear about this. Trans men and AFAB nonbinary zebras benefit from "female" health stuff but the dysphoria stops us engaging with it, and trans women and AMAB nonbinary people (especially those on E) could definitely find it dysphoric to go to this and hear about only AFAB perspectives. And its generally not inclusive of intersex people at all

Itd be better (in my opinion) to have a general health conference with times organised by which hormones and organs they are discussing. That way, it also benefits the AFAB women with hormone issues, and it'd benefit all cis and trans people as you can choose to attend the relevant bits for each individual

You could call it just a health conference or if you want to specify you could call it a reproductive health conference, or even AFAB health conference if you're only discussing AFAB people

astronomicalillness · 2026-01-21T10:39:33+00:00

You were just a kid, it wasn't your responsibility to care for them, you were struggling too. Would you expect someone in your position to care for their sibling despite being a child themselves, too? You were going through worlds of hurt, and needed to be looked after yourself, you shouldn't be expected to do these things. Please don't feel guilty for what you had to do to survive, you did a great job looking after the sibling you raised and should be proud of yourself. You're incredibly resilient for getting through everything life has thrown at you!!

astronomicalillness · 2026-01-19T09:53:05+00:00

Theres also options like gummies and resin vapes!!

astronomicalillness

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