Ehlers-Danlos Syndrome (EDS) Patient Q&A
ฝัง
- เผยแพร่เมื่อ 14 ก.ค. 2024
- I hope you enjoy this Q+A about my journey with Ehlers-Danlos Syndrome!
Here are the questions answered if you'd like to skip ahead :)
What is EDS? (0:33)
What type of EDS do you have? (1:29)
How did you get diagnosed? Did you have to travel out of state to get a diagnosis? (1:47)
How did you feel after you got diagnosed? (2:10)
Earliest signs of EDS in childhood/symptoms? (2:50)
Does anyone else in your family have an EDS diagnosis or symptoms? (4:10)
What was your score on the beighton scale? (4:47)
What comorbid conditions do you have? (5:08)
Which EDS comorbidity would you get rid of if you could one? (5:47)
Why is it important to get diagnosed with EDS if there is no treatment/cure? (6:07)
Do you have a lot of dislocations? (7:07)
Outside of joint issues, how does EDS most affect you? (7:40)
What are some of your most problematic joints (not the spine)? (8:10)
Do you see EDS as a blessing? If so, why? (9:18)
What’s one of the hardest things about having EDS? (10:45)
Has PT helped with your overall pain? (12:09)
How does MCAS affect you? (13:03)
What are some things that make living with EDS easier? (13:36)
Worst/least favorite symptom? (14:18)
Did you get DNA testing or clinical eval? (14:53)
Advice for nurses caring for EDS patients? (15:10)
What advice would you give to someone newly diagnosed? (15:32)
-------------------------
Things/products I have found useful during my chronic illness journey ❤️️ →
DNRS Program (Brain Retraining): retrainingthebrain.com/?wpam_...
Low-Histamine Meats: www.whiteoakpastures.com/?rfs...
(15% off code: FUSEDWITHLOVE)
Redmond's Real Salt/Electrolytes: shop.redmond.life/discount/RI...
(15% off code: RIBEYERACH)
Amazon favorites: www.amazon.com/shop/gonnetopots
My etsy store → www.etsy.com/shop/FusedWithLo...
My instagram → / gonnetopots
My blog → gonetopots.com
My facebook page → / gonetopots.rachael
My twitter → / gone_to_pots
Some of the links in the description may be affiliate links! This basically means that if you purchase something through the link, I might receive a small commission (at no extra charge to you). Thank you so much for supporting my channel! 🎗
#EhlersDanlosSyndrome #ChronicIllness
I love this video! I love your outlook and it’s one I’ve been trying to work on. Your story sounds so much like mine. I have a lot of neck issues but not any that are diagnosed yet but I do suspect CCI. The worst areas and other pain areas for me are the same ones you mentioned and I didn’t show huge signs in childhood except fatigue. I’m I officially diagnosed with EDS but haven’t yet seen the geneticist. As I’m sure all can imagine, it’s all on hold due to the virus so I can’t take steps forward to see one. I, too, have a local one in my town so I’m thankful for that. Thank you for this video! I feel I can relate to your story more than others.
I'm so glad you found it relatable :) Thanks for your sweet message! I hope you're hanging in there!
If I could get rid of any of my comorbidities it would definitely be gastroparesis. I wish I could eat the things I love again :( And it is SO important to get an official diagnosis because my treatment plan has been changed IMMENSELY. I have a different protocol for anesthesia and I got my other diagnoses so much more readily!! It also got me in to PT and other specialists since I have EDS on my chart now! Love the vid!
Thanks for sharing Bridget! I hope one day you'll be able to eat some of the things you love again. I totally agree that it's really important to get a diagnosis :)
Thanks for sharing your experiences and that great information Rachael! If I could take away any of my comorbidities it would be my various neck instabilities as well. On top of the extreme pain and discomfort, I find it really embarrassing wearing my neck brace in public. For so many years I would get injured so frequently and easily for no apparent reason, I think a lot of people just assumed that I was being dramatic or seeking attention. With my other braces I can now just brush them off easily or hide them, but I can't really do that with my neck brace. And everyone always asks what I did to injure my neck, by which I mean people I've never met before. I know they're just curious and have no ill intent, but it's just so embarrassing to try to tell a stranger that absolutely nothing happened to me and yet I'm in a neck brace needing surgery soon. Like, literally NOTHING happened to me. I need a cool story like a bear attack or something, haha.
How are you settling in in NC? Hope it's been helping with the intracranial pressure!
Hi MaryLynn, thank you for your sweet message! I totally get that its tough to wear a neck brace in public. I think one of the hardest parts about it for me is the constant questions...sometimes we just want to go un-noticed, haha! You're right, it'd be fun to make up crazy stories to tell strangers about how we ended up in a brace 😂
Things are going okay in NC, it feels like the right place for me to be right now! The main symptom it's helped is lessening my seizures, which is a huge blessing. Still really struggling, but hanging in there. Thank you for asking ❤️️Wishing you the best with whatever you're going through!!
thank u for being u! your positivity really shines, and that is the hardest thing to do battling daily chronic pain and a whole slew of health issues. I have recently learned SO much from the online community about my own EDS and body, I’m just really grateful spaces like this exist! Your closing point stayed with me too, there are so many of us out there who deal with different but also very similar issues. I also agree with missing out on things having to be one of the hardest things with this condition. Also the intense pain flares that make u wanna jump outside of your body- no fun. One positive that has come out of all of this is meeting some of the kindest and caring people on the internet :)
Thank you so much for your sweet comment! I'm glad you've been able to make some great friends through having EDS as well, it makes a huge difference to know others that understand. ❤️️Wishing you the best!!
Great video Rachael! So much helpful information!
Thank you! ❤️
Girl I feel!! My first "symptom" was my first knee dislocation at age 5 and they didn't even realize that I was dislocating until I was like 8- they thought I was spraining them. Plus no doctor has ever mentioned it to me until I was 15 so I had pointless surgeries and crap because they didn't realize that it is a genetic issue 😅 ... currently suspecting cci bc I can't hold up my head sometimes and my neck goes weak. I have other issues too but without an official eds diagnosis its hard for the docs to connect the dots.
I can relate to so much of this!
You aren’t alone! ❤️
Hey Rachael,
Great video! You inspired me to do a Q and A on my IG lol. It is very hard to choose which cormorbid condition I would want to get rid of but I am going to go with CCI/AAI/ spine instability. I feel like spine instability covers the whole Chiari, tethered cord, CCI/AAI and CSF issues. I would also say my skin issues with cEDS because surgeries are not good when your skin can't hold stitches lol and my joint dislocations all over. Haha just too many choices. Trying to focus on the fact that at least I don't have aneurysms and vEDS. It can always be worse. Thanks for sharing!
That's awesome you're doing a Q+A on your instagram, I'm sure it'll be good to spread awareness of classical EDS! I agree on the CCI/spinal instability + neuro issues, those really are so tricky. Thanks for your comment! :)
Haha I answered aloud for the 'which comorbidity would you get rid of if you could' and you stopped and thought about it and I was just like, "SPINAL INSTABILITY!" haha... Then was pleased that you agreed hehe (I'm there with ya ;))
Yesss! 😅
If I could take any cormorbid condition away it would definitely be the instability in the cervical spine. AAI, CCI and the subaxial instability. Also with MCAS and anaphylactic shock to pain killers 😣
Totally agree on that one! There’s so much to choose from with EDS though 🙈
I agree with this as well about the CCI/AAI but I also would want to get rid of the tethered cord, lol too many choices!
Rachael Elizabeth I agree. The list would be long. The thing I think I miss most is how active I was. And that I can’t be active with my boys. My youngest will never know that part of me in the way I truest was. I’m focusing on ways I will be able to hopefully be with him after surgery. I can’t even pick him up and he’s only 2. It’s hard on him and me. Cuddles don’t work so well either cuz he hurts himself on my brace 😢
Not being able to be active the worst! Especially when your outlet used to be exercising 😅 I’m sorry about your little one, that must be so hard! 😞
Can you explain what EDS does to collagen? It’s a connective tissue disease but what does that mean?
What if you are supposed to take high amounts of vitamin C to get collagen to work? Why does this causes chiari?
Like I mentioned I took metronidazole antibiotic and now have all they symptoms you have.
I am seeing double now
I have heart palpitations
I have visual snow
Neck pain from some supplements
Like brain swelling
I also was exposed to mold after metronidazole antibiotic which has caused it to get worse. Metronidazole causes B1 deficiency.
B1 deficiency causes POTS
I wonder if we need Vit C and taking collagen.
Check out izzy Kornblau has a channel with lots of great info about eds :)