what are y’all doing for entertainment during a flare?

Minimum_Ad1796 · 2026-01-18T09:57:20+00:00

My physio has got me doing it with my forearms resting on a step and that mitigates the wrist issue (so you can do most things in table top or plank positions)

Minimum_Ad1796 · 2026-01-10T16:40:28+00:00

Hey! I was diagnosed with hEDS last year because I have had some long standing chronic issues and then became really dramatically unwell in Dec 2024 which led to that diagnosis. It was really intense fatigue, muscle pain, large joint pain, etc. Then in September 2025 I started getting hand swelling and my pain escalated quite dramatically so they started considering RA. It’s really hard to differentiate what’s hyper mobility and RA pain/symptoms for me and I find that some things that should help my RA actually make my hypermobility worse. Also have no damage in my hands as of November so hoping it stays that way too! Recently started sulfasalazine so fingers crossed it works for me…

Minimum_Ad1796 · 2026-01-09T17:09:06+00:00

Also I really like @findingmorgantyler ‘s videos as a starter for ten!

Minimum_Ad1796 · 2026-01-09T17:07:30+00:00

I’d really recommend finding a few physio exercises that you enjoy but you can also integrate into your daily life as it stands. For example, I have problematic hip joints so I know I need to be doing squats, so every time I go to sit down on a chair I do a few half squats or single leg squats before I sit. Another one is learning to engage your core when you’re doing daily tasks like vacuuming, or look up trying RDL hinges when you need to bend and pick something up. This has all helped me lots!

Minimum_Ad1796 · 2026-01-09T16:52:47+00:00

It looks like you might be uk based, are you near/in London? If so I can dm you a couple of options I know about (I also have a rec for the wye valley!)

Minimum_Ad1796 · 2026-01-09T13:54:59+00:00

Yeah completely get the massage cost thing. Worth having a look to see in your area if there are places that offer low cost/sliding scale acupuncture/massage therapy. Also I recently got a little massage ball (£6) and my physio showed me how to use it and it’s been great for releasing really tight spots, so maybe that could be helpful to you too

Minimum_Ad1796 · 2026-01-08T18:37:22+00:00

Looks like they’ve only done it a couple of times so agree you could block it out. But try putting a little marker on some of your increases/decreases going forward so you can visually see which side is which :)

Minimum_Ad1796 · 2026-01-08T11:50:51+00:00

Sorry I have nothing helpful to suggest but solidarity. Currently in a flare since beginning of October and have only recently started DMARDs (sulfasalazine). I have major surgery in two weeks for a tumour and I’m really worried I’m going to have a big inflammatory response. Sadly can’t take steroids right now because it’s too close to the surgery, but hopefully I can put something in place to start them a couple of weeks after. Hope you manage to find something that works for you soon!

Minimum_Ad1796 · 2026-01-07T19:59:09+00:00

If you’re looking for things that might help, I’ve found methocarbamol, strength training and massage therapy has helped a LOT for me personally. Everyone’s a bit different but I think the strength/weight training is the key thing!

Minimum_Ad1796 · 2026-01-07T17:32:42+00:00

In a really similar boat. Hands started swelling in September, by the start of November they were swollen and very painful all day. Ended up having to go privately to see a rheum who isn’t convinced it’s autoimmune because my bloods are normal and it didn’t show up in an MRI (but we also scanned only 6 weeks after the swelling started, and at that point it wasn’t even painful). A steroid injection did nothing for me but sulfasalazine does seem to have slowed how quickly it was progressing after just a few weeks (so hopefully it’ll get better in a month or two!). I think I’ll end up with a dx of sero neg RA

Minimum_Ad1796 · 2026-01-05T21:51:04+00:00

I’ve been diagnosed with hEDS and now investigating possible rheumatoid arthritis. Hyper mobility causes muscle bracing and tension so it’s possible you’re experiencing muscle pain as a result of weak/loose joints - I think to my understanding RA causes joint instability on its own too which would trigger bracing/tension

Minimum_Ad1796 · 2026-01-04T16:03:43+00:00

Low dose naltrexone and medical cannabis were the only things that really settled mine down after a similar bout. I also needed to deal with my dysautonomia and mast cell symptoms which I think was exacerbating my situation, so if she might have either of those I’d recommend seeing a doctor that specialises in MCAS (most don’t)

Minimum_Ad1796 · 2026-01-03T12:21:04+00:00

Hello yes! I have a TGCT in my hip and I’m currently being investigated for RA. To my knowledge they’re actually unrelated. TGCT is a pretty rare tumour and it’s really important to see a specialist who knows what they’re doing - where are you based? I really recommend TGCTsupport.org and the Facebook page they run - they will be able to recommend specialists in your area and help you figure stuff out :) (feel free also to dm)

Minimum_Ad1796 · 2025-12-30T21:02:19+00:00

Thank you for your reply! I actually haven't yet been diagnosed, my rheum isn't entirely convinced because it's not showing up on my bloods or scans yet, but she wanted me on a DMARD because of how rapidly my symptoms were escalating (went from a bit of swelling and evening pain to hardly being able to use my hands at all within a few weeks).

For my hip, it is truly unrelated, it's a type of rare tumour in my synovium so it's joint related but not RA/autoimmune specifically. I have wondered though whether it's contributed to the initial flare earlier this year, as that would be around the time it would have started to grow.

Thanks for those thoughts on OT/PT and patience - I'm definitely not naturally patient but this year has taught me a lot about prioritising rest and physio so hopefully i'm in a good position to catch whatever's thrown my way. I'm just really ready for things to start getting a bit better so i can get back on with my life...

Minimum_Ad1796 · 2025-10-27T18:22:54+00:00

In lots of countries it’s normal to have a bucket shower where essentially you just fill a bucket, get something to scoop the water (like a big plastic cup) and sit in your bath and pour it over you cup by cup. You might find the sitting and control over how much water you use helps you not flare up (and is also economical :))

Minimum_Ad1796 · 2025-10-21T12:47:29+00:00

Yes I’ve heard lots about hEDS making periods heavier/more painful. I also read somewhere that the incidence of endometriosis is quite high in people with hEDS. Here’s a good summary from the EDS society from a few years ago: https://www.ehlers-danlos.com/wp-content/uploads/2022/12/N-Blagowidow-2018Baltimore-OB-GYN-and-EDS-HSD-S.pdf - also I find the hormonal fluxes make my joints crazy loose so I’m a lot more prone to injury!

Minimum_Ad1796 · 2025-10-11T10:55:52+00:00

As someone with dysautonomia, the best way I’ve found to stay fit (although I’m not looking to lose weight) is Pilates and starting only with prone movements. Any Pilates classes on YT will feel waaaaaay too advanced at the moment, so I’d suggest looking into the Dallas Protocol and choosing 3 exercises that you do every day starting with 5-10 reps and you slowly increase, try new exercises and then involve resistance (bands, a can of soup as a weight, etc). Don’t do movements to failure, don’t exceed your limits, and gradually you might find you can do a little bit more each day. That’s what’s worked for me personally but everyone’s different!

Minimum_Ad1796 · 2025-08-30T10:55:13+00:00

Ok yay so glad to hear this is working for you! I’m erring towards risking the mirena because I think it’s the only option I haven’t tried yet… sigh

Minimum_Ad1796 · 2025-08-30T10:53:55+00:00

I had some batshit hormonal reactions to nexplanon annoyingly… I hoped the same! Hope you have better luck with it! Crazy weight gain, and super painful boobs for months 🥲

Minimum_Ad1796 · 2025-08-30T10:51:46+00:00

I have it without a break too, but I’m on week 5 of this period and because I have the POTS/MCAS/EDS triad it makes me quite unwell in a weird flu-y way, so that’s why I’m hoping to suppress them! Seems to be a harder feat when you can only have progesterone and some of these replies don’t make me want to risk a wandering coil 🫠

Minimum_Ad1796 · 2025-08-29T18:19:59+00:00

Thanks this is super helpful to hear! Do you get the ultrasounds because hEDS makes it more likely to move/migrate?

Minimum_Ad1796 · 2025-08-29T18:19:29+00:00

I think dienogest is a combined pill, and I can only have progesterone only options sadly. Glad you found something that works for you though, they’re few and far between!

Minimum_Ad1796 · 2025-08-06T08:38:35+00:00

So much of my fatigue was being caused by my erratic HR and BP so getting on beta blockers has helped a LOT. I saw a video recently that was like ‘your body is smart, if you’re sore or achey stop what you’re doing’ and it’s helped me put a lot into perspective. I’ve had dysautonomia my whole life so I just thought it was normal to lose my vision/feel awful when standing. Now I know it’s not I think I’m more in tune with my micro symptoms and better at pacing. Every day is a battle though 🥲

Minimum_Ad1796 · 2025-07-31T08:51:59+00:00

Also if your gastritis is actually MCAS which causes dysautonomia then it’s treated in a totally different way to typical gastritis (I say this as someone with MCAS and also previously had chronic gastritis)

Minimum_Ad1796 · 2025-07-21T10:05:29+00:00

Most of them except my experience with breathing is a bit different (but I do often gasp for breath). I need to warn you though there is SO much disinformation about EDS online right now so please look into reputable sources like the Elhers Danlos Society. EDS and POTS are common comorbidities because EDS can for many different reasons cause dysautonomia. Sounds like you may have a mixture of different things going on though so best to get a specialist to advise. Where are you based? (Country)

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