#connective tissue disorder
Does anyone have recommendations for ergonomic seating with connective tissue disorders?
Or even tips for someone who sits/lays down all the time. (Fellow bedridden folk?)
I can’t sit up without getting a migraine, or worsening neck pain, and my shoulders keep being pushed forward and it’s inflaming my costochondritis. My entire ribcage feels like it’s being crushhed into a ball. Sudden sharp stabs of pain under my collar bone from the odd shoulder positions.
When I make art, I’m somehow I’m sitting in a position that causes more fatigue and pain.
So now making art has more of an impact than a day filled with super duper light physical activities.
Move around more is a good tip.
“Get that spine checked out” is something I’m working on.
But the chair situation.
I have no idea what to do.
I felt like gaming chairs might be a good way to go. Possibly…
And then there’s the truth that you never really know what you’re getting until you’re sitting in it. And I can’t get out to try any.
And a trusted ergonomic chair is an expensive investment.
I sit 99% of the time. 1% is just me walking to the bathroom or kitchen.
Heating pads, OTC pain meds, stretching and massaging neck muscles are not helping.
(Bah, I guess what I need it a guide on being bedridden lol?).
I know this is kinda vague.
Does anyone have experience with this type of thing?
Does anyone have recommendations for ergonomic seating with connective tissue disorders?
Hi all,
I’m looking for people who have Ehlers-Danlos Syndrome to take part in a study. I have EDS myself and I have decided that I want to do psychology research into it for my psychology undergraduate dissertation.
The study is looking at how beliefs of stigmatisation by others, self-stigmatisation and perceived control impact life satisfaction in those with EDS. This is an area which hasnt been explored in EDS research before and so the research will be the first of it’s kind! Also the study is completely anonymous so no one will know who has taken part.
Please let me know if you are interested or not or if you have any questions at all let me know!
Please dont feel like you have to take part, but it would be great if you could, or even if you could just share this post!
All the best!
This is the link for anyone who wants to do the study -
https://buckingham.onlinesurveys.ac.uk/to-what-extent-do-perceptions-of-stigmatisation-by-others
Some Neurology HospitalGlam. My neurologist is brilliant. Treats me like an equal and partner, reasons out management and plans of action with me, takes my input at face value, never patronizes me or doubts my symptoms or reports. To top it all off, fantastically and brutally honest. From a previous appointment ‘well, there’s still a lot we don’t know about the brain, so the answer probably lies there somewhere.’ And from today 'it definitely sounds like another TIA but we’re already doing the treatment so there’s not much we’d change.’
I’ve worked damn hard to build my current medical team and they may be inexperienced with connective tissue patients, but they are pretty fine doctors.
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HospitalGlam from this morning… Some blood tests which I’m used to now, but I forgot to warn the phlebotomist about the Ehlers-Danlos and she used a large needle. This resulted in two things… A mild vaso-vagal response due to the pain (blood pressure drop/dizziness etc) and then as I was leaving I sprang a leak and gushed blood everywhere. For whatever reason connective tissue disorders can cause excessive bleeding in some cases. I have this problem with a lot of things, but as long as they stick to the small child sized needles I usually just leave with a fantastic bruise.
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Hey Ehlers-Danlos friends! How’s your skin holding up with all this extra handwashing? Mine was starting to turn to trash yesterday, thankfully my mom had two extra jars of Aquaphor on hand so I slathered my hands up really good and they feel so much better!
felt cute waiting for food before therapy
