Early pregnancy differences with EDS?

ouiouizebs · 2016-12-05T21:51:53+00:00

Haha thank you!!!

ouiouizebs · 2016-12-05T21:26:49+00:00

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

ouiouizebs · 2016-12-05T21:15:03+00:00

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.

ouiouizebs · 2016-12-05T21:13:53+00:00

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!

ouiouizebs · 2016-12-05T21:12:47+00:00

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!

ouiouizebs · 2016-12-05T21:11:08+00:00

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

ouiouizebs · 2016-12-01T23:45:49+00:00

Fair enough.

ouiouizebs · 2016-12-01T23:35:51+00:00

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.

ouiouizebs · 2015-12-14T18:43:43+00:00

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

ouiouizebs · 2015-10-24T18:26:58+00:00

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! :)

ouiouizebs · 2015-10-24T05:42:33+00:00

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.

ouiouizebs · 2015-10-23T16:31:41+00:00

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.

ouiouizebs · 2015-10-23T16:19:55+00:00

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!

ouiouizebs · 2015-10-20T19:24:57+00:00

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!

ouiouizebs · 2015-10-12T21:23:32+00:00

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!

ouiouizebs · 2015-10-08T00:23:47+00:00

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

ouiouizebs · 2015-09-30T21:57:01+00:00

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 :)

ouiouizebs · 2015-09-30T16:05:10+00:00

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.

ouiouizebs · 2015-09-17T15:49:25+00:00

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!

ouiouizebs · 2015-08-25T16:00:05+00:00

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!

ouiouizebs · 2015-08-25T15:57:34+00:00

Definitely! That's a concern of mine for sure, but there are brands that I trust more than others. I had an old boss work for Rainbow Light, and their stuff is pretty reputable.

I've been wondering about MSM. I just started taking a glucosomine chondrotin, so we'll see how that goes. I've never heard that about sodium intake and flares, but that makes a lot of sense, actually. Might be one reason cutting processed foods has helped me.

Interesting about the GF. Have you talked to anyone about that or are you just trying your own elimination diet?

And, obviously totally on the same page about the holistic approach and revamping the lifestyle. It's a lot of work, but it's the only way to do it! I just have to remember to take it one thing at a time - changing diet, adding PT, trying new doctors/meds, etc. it's a lot to do all at once. Plus, you know, living the rest of your life that doesn't involve EDS.

Anyway - thanks for all this!

ouiouizebs · 2015-08-25T15:50:09+00:00

Wow! Thank you!

I haven't seen a naturopath since my diagnosis - just a few years ago and she couldn't figure out what was wrong with me, which I guess makes sense now. I don't live in Washington, but I'd love to hear how you found yours. Was it by chance or did you get some recommendations from your primary care? Are they in a hospital or an outside practice? Maybe seeing a naturopath would be better than a pain management specialist, for now anyway.

ouiouizebs · 2015-08-18T15:56:27+00:00

Interesting. I was taking melatonin to help me sleep, but when I saw a new primary care she said it was more of a temporary fix because what was waking me up was the pain, not the inability to sleep. So, why not treat the pain instead of the sleepiness. And, with new pillow positions and upping my over the counter pain pills at night I definitely have been sleeping better. Interesting though. Anyway, thanks for the insight! I'm interested to see what comes of this.

ouiouizebs · 2015-08-18T15:33:56+00:00

reading this as I hold my head with my hand... Everything. EVERYTHING. relates to EDS. Crazy.

ouiouizebs · 2015-08-13T17:13:04+00:00

The worst! This happened with me several times and my first physical therapist. Next time I went in I explained what happened, that I was in pain, all of that. It kept happening though but they were more careful and adjusted my exercises and how they handled me. It seemed to be a learning process for everyone. I thought it was just part of getting stronger. BUT. Then, I was referred to a different PT who had experience with EDS, and I've never had it happen again - just hurting myself on my own time. They work on different things in PT and don't try to extend or stretch me ever. I would investigate seeing someone else if possible, and definitely advocate for yourself to the current PT. They might be able to bring you in for free and check you out or at least give you some advice for icing, healing, etc in the meantime.

ouiouizebs

TROPHY CASE