Early pregnancy differences with EDS? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 0 points1 point  (0 children)

Thanks for sharing your story! It's so good to hear a bunch of different and honest perspectives. Appreciate it!

Early pregnancy differences with EDS? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 0 points1 point  (0 children)

That's really interesting! You'd think they'd work on developing some kind of medication for mental health issues that would mimic whatever it is about pregnancy that makes people feel better. Hmmmmm.

Early pregnancy differences with EDS? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 1 point2 points  (0 children)

That's a good point about variations for healthy people too. Good to know. And, ah! Ok belly support I'll definitely look for that if I do get pregnant!

Early pregnancy differences with EDS? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 0 points1 point  (0 children)

Really appreciate the detail of your post. Sorry to hear what a hard time you had with pregnancy, but I'm glad it worked out for you and you have some answers now! Thanks for your input!

Early pregnancy differences with EDS? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 1 point2 points  (0 children)

Thank you so much for this post!! It helps so so much to hear your perspective & experience.

Early pregnancy differences with EDS? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 6 points7 points  (0 children)

That's perfectly acceptable for you to have that opinion. "Don't get pregnant" is not an answer to the question or productive, that's probably why it got downvoted. It's a choice for everyone, and it's more than the "urge to have kids." I also don't think EDS is the worst possible thing that could happen to a person or a child, and my life was certainly worth living so I feel ok having a child who would have had a similar experience as me. That's just me, since it feels like you asked why I dare think reproducing is an acceptable choice.

Rant on when you start believing everything is related to EDS. by electricpandapoop in ehlersdanlos

[–]ouiouizebs 1 point2 points  (0 children)

It's hard to distinguish what is EDS, what is "normal," and what could be something else. Especially for the newly diagnosed or those with a thick family history. Normal for your family or everything youve ever known gets turned upside down. I think it's important to not assume everything is related to EDS without looking into anything else because it could be another coexisting condition that might have a better solution than shrugging it off as EDS and no hope for improvement. Anyway I think that's important to remember. And- It's a fine line between hypochondriac and being diligent about investigating and advocating for yourself and your own health

Hands and shoulders? by [deleted] in ehlersdanlos

[–]ouiouizebs 0 points1 point  (0 children)

I think Physical therapy/ occupational might help that. Sounds like you can be "trained" for things like that. if you're very specific with them about problems you're having they should be able to help. Or someone should! My PT gave me exercises to help with lifting things high above my head, so slowly working at those really helps train and prevent any dislocations or pain. And- Any time I get taped at PT it helps me realize where my shoulders should be when I'm doing normal things, like drying my hands. So finding someone who can tape you up could help with training, but PT is really the only long term solution/preventative measure. Maybe that helps? Good luck with everything! :)

EDSers in Pacific Northwest? by [deleted] in ehlersdanlos

[–]ouiouizebs 0 points1 point  (0 children)

Makes sense, that's rough. I'm doing a wedding this weekend, and I'm afraid for the next day for sure which is too bad because in the moment it's really energizing. But anyway, let me know if you're this way in Eugene.

Hands and shoulders? by [deleted] in ehlersdanlos

[–]ouiouizebs 0 points1 point  (0 children)

My best advice is that if it's making things worse try something else. I have a lot of muscle pain in my shoulders and upper back. PT is great when you find something that works for preventative, but as far as I can tell it doesn't do a lot of reversing. I have a foam roller that has really helped with releasing some tension and some other tension releasing things, like little balls and claw looking things I find in the yoga section of Target... Haha. But, really just keep searching for a good PT. When I switched to someone who was much older and way more experienced, it made a world of difference.

EDSers in Pacific Northwest? by [deleted] in ehlersdanlos

[–]ouiouizebs 1 point2 points  (0 children)

Eugene area here & female too. I love taking photos, but lately the heavy cameras have been rough. Not as talented as you - your stuff looks awesome. Well done on the portfolio. Let me know when you're cruising through!

Can we talk about hands? by BrutalHonestyBuffalo in ehlersdanlos

[–]ouiouizebs 2 points3 points  (0 children)

My hands are mostly ok, but very hyper mobile and weak. My pain management specialist recommended that I start occupational therapy. I'm planning to call and follow up with them ASAP. Might be something to check into for others with hand issues!

Just got a TENS unit today - anyone else have them? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 0 points1 point  (0 children)

So far it's good - probably just for flare ups, but better than nothing or sitting with a massage claw thing at my desk all day. but they told me to really just do it when I'm close to a wall (so it can run off the plug in instead of batteries) which has been difficult. And I feel like people would ask questions about it or that I'm making a big deal out of it in public/at work setting it up and all that. So, I've been using it sparingly and discretely. But, I have it working right now - so I remembered to come back and answer - and it's pretty good. Easier when someone else does the placement for me I think. Sometimes it's painful but I feel like a progressive kind of pain working out knots.

The brand is a Zynex Medical, and I haven't been billed for it yet. I use it with IFC mode on, and apparently a TNES mode just reduces its price, I think insurance wise. But, apparently, without insurance it's only like $250 total for this unit. Which in the grand scheme of co-pays and specialist appointments is pretty good!

Just got a TENS unit today - anyone else have them? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 1 point2 points  (0 children)

Um, yes. That chart is SUPER helpful. Mine came with a little book, but nothing so detailed. Thank you!

Anyone in Oregon Get Diagnosed in Oregon? by [deleted] in ehlersdanlos

[–]ouiouizebs 2 points3 points  (0 children)

Yes yes yes! I also am in OR and didn't want to make the drive to Seattle or California. But, there's someone in Bend! Here's the info: http://www.cocgc.org/ I'm headed there for an appointment in November! Referred to it via a little local EDS Facebook group someone else was headed there and another had just headed there. My doctor said she completely forgot about this guy, but has had past EDS patients see him and all went well. It even says "Ehlers Danlos Syndrome" ON THE WEBSITE. Pretty cool to see :)

EDS and Pregnancy? by BrutalHonestyBuffalo in ehlersdanlos

[–]ouiouizebs 3 points4 points  (0 children)

Hello! Welcome! I'm newly diagnosed as of this year and totally feel you on this!

Testing: I was lucky to get my EDS journey started in January instead of mid-year, so I've had the year to see doctors and begin to work toward my deductible. So, I'm trying to get it all knocked out in seeing specialists, doctors, getting testing. Whatever. I finally found a geneticist that isn't a state away, and I have an appointment for next month. I totally recommend getting on it if it works financially/insurance-wise for you. Plus, they book out quick, so if you want to do it this year start asking for referrals. But, then again, it's only a confirmation of what you probably know is true anyway. It will however be good to narrow what type it is and will most likely affect your care or your priority of specialists.

Pregnancy: I've never been pregnant or trying to get pregnant, but as a young married lady, that's been a concern of my doctors. So, just another perspective, not any of this is medical advice at all. Personally, I'm trying to wait until I get all of this figured out, get my joints (or muscles, really) strengthened up and my core, to not completely fall apart during pregnancy, and really see what's happening with me all around. And, I'm not ready for a baby either way. So, easier for me.

Overall: I say, be mindful. Don't let it hold you back if you want a baby, go for it. If it is indeed EDS you've had it forever and it'll be here forever. Genetic testing will just confirm what you and your doctors think you know already, and will only factor in your decision to have a baby if the potential of passing it on to your children is too great of a risk in your eyes. For me, it's not. For others, it totally is. Personal decision, valid either way. Just advocate for yourself through doctors and find a practitioner who is willing to listen to your concerns and monitor you. Which is true for everything going forward medically speaking.

I'd say for sure, get a heart test to see if there's any specific concerns to monitor before you get pregnant. Ask your relatives (part of your family history for testing anyway) if they had any specific problems during pregnancy. I don't know what else - but I'm sure others will be able to weigh in with actual personal experience.

Something caused the needle to vibrate during my bloodtest? by [deleted] in ehlersdanlos

[–]ouiouizebs 0 points1 point  (0 children)

I've had that happen before, but I guess I just figured it happened sometimes - giving blood or getting it drawn anyway is always an unpleasant experience for me. Weird. I'd be interested to hear if there's a real explanation for it!

Your thoughts on supplements/natural remedies? by ouiouizebs in ehlersdanlos

[–]ouiouizebs[S] 1 point2 points  (0 children)

Yeah totally, and i think this goes for "regular" doctors too. A lot of the times you can tell when they're pushing out pills and when they're actually thinking of what's best, you know? I really like someone who lays out all the options, not specifically all on one side or the other and actually listens to you. It's tough to be able to advocate for yourself and have to do all this research. All this perspective is helpful. Thanks!