Update on taking #carbidopa- #levidopa: I'm having significant #dystonia #symptomimprovement at 1 month/6 weeks. I'm still titrating the dose, but it's such an improvement. If you have #musclecramping that isn't resolved with #musclerelaxants read about #doparesponsivedystonia and see a neurologist. #EDS #ehlersdanlossyndome #disability​

Update: I'm having significant #dystonia #symptomimprovement at 1 month/6 weeks. I'm still titrating the dose, but it's such an improvement. If you have #musclecramping that isn't resolved with #musclerelaxants read about #doparesponsivedystonia and see a neurologist. #EDS #ehlersdanlossyndome #disability

There's nothing quite like a brace when you have #EhlersDanlosSyndome , pure bliss

Recently started carbidopa-levodopa (#levocarb) to treat #dystonia, a common comorbidity with #EhlersDanlosSyndome. I am cautiously optimistic for my chronic #MuscleSpasms, #Cramping, and #AbnormalMovement. While I don't have obvious #Myoclonic movements like #Parkinson patients, my #neurologist who's a movement disorder specialist said that based on my symptoms and since I have #hEDS, we're treating as if I have dystonia. Started week 2; he said should expect results in 3 weeks #FingersCrossed

So I got the results of the MRI today…the pop was the meniscus giving out. Left meniscus has a complete radial tear & is extruding on the inside of the knee, & I have a stress fracture where my knee bones are rubbing on the inside. The doctor wants me to wear a knee brace for six weeks, get steroid shots in the knee & let it try to heal before we try anything else. But surgery could be an option in the future. The knee brace is going to cost $1600.
#ehlersdanlossyndome
#psoriaticarthritis

RT @weareint0lerant@twitter.com

I still desperately need to talk to anyone with #EhlersDanlosSyndome who has had very strange and horrible hair/ skin conditions.

Doctors have seen it they now agree I'm not imagining it but er.. have no bloody idea what's going on. I really feel like it's connected to the EDS.

🐦🔗: https://twitter.com/weareint0lerant/status/1613528664183824389

Thank you to CNN’s Sarah Lazarus for this rare piece raising awareness of Ehlers-Danlos Syndrome, a condition that is often neglected by the medical community and also sometimes rules my life.

Despite persistent and often debilitating symptoms, my diagnosis took over 30 years. Sexism and other forces mean that many people with EDS, especially women, have this in common. #ehlersdanlossyndome #NEISvoid

https://www.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

A great #review on the topic of #ehlersdanlossyndome #eds https://anatomypubs.onlinelibrary.wiley.com/doi/full/10.1002/dvdy.220 #disability #disabled

People with EDS have chosen euthanasia, including the B.C. woman in a controversial Simons ad, because they can’t get care in Canada #ehlersdanlossyndome
https://nationalpost.com/news/canada/ehlers-danlos-syndrome

What is your best pain relief hack apart from taking prescribed medication? Let's share some good ideas. #EDS #FlexibleLife #EhlersDanlosSyndome #EDSchat #Hypermobility #ConnectiveTissueDisorder #HSD #EhlersDanlosLife #Bendy #EhlersDanlos

Remember we are all individuals: what works for you, will not work for everyone. However, I think we have all probably tried a myriad of things over the years and therefore have expertise in this area.

Any #EhlersDanlosSyndome sufferers playing #Nintendo #switch? I have #hypermobile hands, and my #thumb keeps #cramping using the controllers, as both the half controller and dual controller allow my thumb to #hyperextend and move abnormally. More than 10 races on #MarioKart in a day results in severe pain. Help me have #FamilyTime! #hEDS

#Twitter thread . Contributors have #LongTerm affects from #covid or other #viruses . #LongCovid #POTS #Dysautonomia #ehlersdanlossyndome #WearAMask

https://twitter.com/ahandvanish/status/1600217666064592896?s=61&t=2wgQeyjwefv6BmRzrktffQ

Are heel blisters a symptom of #ehlersdanlossyndome ? (I am pretty much bed bound so they are not from shoes or hiking etc.

I was listening to a podcast with an eye mask on and fell asleep. The fatigue has been lingering in the background for days now and it’s finally caught up with. Course I made it easier by relaxing for five minutes. I’ve been fighting it which is never helpful. I lose a lot of my life and I wasn’t ready to relinquish. I bloody hate it ngl :blobugh:

#ehlersdanlossyndome #fatigue #disabled

Managed to sneak in a mile today between a hectic day, physio went well, had some laser and I'm cleared to start building up the running slowly so that's good news!

Still have to keep up with the posterior chain strengthening as that's still a weakness, especially on the left side due to the wonky ankle.

Managed to jog/run/jog and it felt hard but manageable, so that's good!

#rwrunstreak #runstreak #running #runnersofmastodon #runchat #thisgirlcan #injuryrehab #eds #EhlersDanlosSyndome

@Roannasylver ebooks have been amazing for me, my #ehlersdanlossyndome means it's often hard to hold heavy books/turn pages! I can read without injury haha

Day 1 of run streak in the bag after 4 months out for injury rehab.

1 mile run/walk/run focusing on form, technique and cadence in the run sections.

Hoping the focus on technique rather than just keeping going at all costs will stand me in good stead going forward into my next ultra training program starting in January!

#rwrunstreak #runstreak #run #running #thisgirlcan #edsathletes #EhlersDanlosSyndome #VeganRunners #VeganRunnersUK

You may have #hypermobility if... #hEDS #EDS #ehlersdanlossyndome #chronicpaingang #disabilities

I've seen people doing this & thought I'd join in! #introduction I'm Danielle, a #disabled , #vegan , #singer and vocal coach turned graphic designer from the UK. I have #adhd & am #autistic. I also have #ehlersdanlossyndome , #fibromyalgia and #ChronicFatigueSyndrome . I have severe #depression , #anxiety and #ptsd . I try to wake up everyday and face it the best I can but this world feels like it wasn't meant for me. I just want #socialism and equality for all, not just some. I love #dogs!

A good experience:

I just went to the dental hospital to get some help with my #tmj it's an appointment I'd been dreading.

Not only did the person I saw know about #EhlersDanlosSyndome and #Dystonia they were also openly @actuallyautistic

They were kind and understood about the sensory discomfort and processing difficulties I had during the appointment. They also laughed when I pointed out that the name of the person that checked off the medical equipment was Rusty. 😊😂