Eds Diagnosis... How Did You Finally Get This?

[Becia]

This past week has been something I just wanna throw out the window. Dealing with a death in the family, my POTS that has taken an upswing as of late, and just flat out exhaustion, I'm just fit to be tied. I want to rest, but my brain is wired for constant thinking and worrying. Apparently been having more seizures as of late, which has led me to my question at hand...

EDS is pretty common for us POTS people. Now, I've tried to protect myself as much as I can, utilizing my chair, not putting myself into harms way, doing the best I can to lay down more, but with my seizures apparently, I'm having a few more joint issues than I really noticed. Take last night: yesterday was super rough, and I guess my friends and I debated if I should do an extra treatment of fluids. Apparently the answer was yes, because I woke up this morning with my IV going, and no recollection of what happened. Apparently had some seizures (and they thought I'd been having some small ones through the day,cause I wasn't acting myself), and in the process, I dislocated my hips. Yes, I said hips, plural, both of them evil joints. Usually one side goes out depending on how I end up falling, but my friends said last night I complained if the side that was turned awkwardly, but when they tried to help me sit up to get into my chair, the other side went out too. Sure enough, after I woke up a bit this morning, gathered some strength with my housemate helping me, popped them back into place for good (the left was already back, it goes in easier, so I apparently maneuvered it last night, but the right was a bit stiffer).

I'm super bendy, always have been. With these major issues, plus the shoulders dislocations, and a couple minor ones (like my toes, that was just bizarre), I'm beginning to really feel like I need to push for someone to tell me what the world is making these happen, other than "you're a clutzy person". Is this possible it's EDS?

Just wrap me in bubble wrap; it might be my only option, lol.

[Christy_D]

It sounds very possible that you have EDS. My daughter was diagnosed this year with EDS by a geneticist. She has also been diagnosed with OI and small fiber neuropathy. My son has MCAS and POTS and the geneticist said (without examing him) that it is very likely he has EDS as well. My daughters ribs pop out of place frequently, that is her major pain/complaint. She went through PT and it helped her strengthen muscles and deal with some of the EDS issues.

[Becia]

I did some pt as well, as they were trying to get me to be able to stand a bit longer than I currently am. In the middle of the sessions, is when my right hip had it's first dislocation actually. My therapist and I decided until my pots was better controlled, we needed to hold off doing more, but I do have some items to work on at home to help strengthen, but so far, we still have joint outs and "brain outs" as we call my syncope.

Al I know is this is really painful and so not one schedule of stuff to do... I barely moved this morning, and popped my left hip out again trying to get to my chair to get to the bathroom.

Bad hips, bad bad hips.

[Katybug]

It sounds like investigating EDS is appropriate. As someone with EDS, I really feel like seeing someone who is an EDS expert is essential to getting good diagnosis and help. There are other connective tissue diseases that should be ruled out also. You may be able to find a good doctor referral by going to the Inspire forum at ednf.org. I can give you names of 2 geneticists in Baltimore that are considered experts but I don't know if you want to come this far.

[Becia]

Due to funds, yeah, Baltimore would be hard (but man, I would love to go up there, I love history and cool stuff, and Baltimore has that, lol), but I'm def mentioning this to my doctor who's been taking care if everything with me as of late.

Another weird question, is there anything they can really do for this? I know physical therapy is option 1, but what else? I have a feeling I'm regulating myself more to my wheelchair than I had been as of late (I'd just gotten to the point I could semi walk around my room/bathroom, although I still have chairs everywhere, and often times do lay on the ground), because the past two days just moving in bed, I feel my left hip going bonkers, and having to use my arms to push myself up more is causing issues with my shoulder which likes to go bonkers occasionally too. Each time I end up with hip issues, it takes about two weeks for them to be halfway normal again. Usually I have one good hip and can still manage things like getting up, down, showering, out if the house, etc... With the two now, my friends are having to lift me and move me more, and now I'm afraid if hurting them. And I sooooooo need a shower. I'm offending myself, lol,

I guess in my mind, there's just peace in knowing why my body is doing what it's been doing. If there's not much they can do with it, okay, but just having a name to call it might help me mentally. And if this is something I need to take into consideration when I move into my apartment (like if I need a more handicapped accessible one compared to a normal apartment), it might help make my life easier knowing and expecting this to happen.

[Katybug]

Becia,

There is no cure for EDS, just various ways to manage symptoms. It is important to know if you have it in that if you have it, per my geneticist and cardiologist, it is important to have an echo each year to monitor your aorta for aneurysms (even if you don't have the vascular type), and, it is important to tell surgeons if you need surgery for anything. There are plenty of things to try besides pt but I will say finding a pt that is familiar with EDS and dysautonomia can he a great help. I have my last pt appt today (out of appts due to insurance) but my pt has been wonderful about finding ways to safely modify exercises so I can do them lying down which gives me the benefits of strengthening the soft tissue around my joints without stressing my POTS issues. She also accepts that I injure much more easily so we have to roll with the punches. For example, I started developing tendonitis in my elbows and shoulders last week because we've been concentrating on strengthening muscles that will help heal and stabilize my neck. But with the tendonitis, we just shifted to some lower body core strengthening and balance exercises until I can safely ease back into the upper body stuff. There are also tons of different types of custom braces that can be prescribed for each joint. There are compounded prescription pain/inflammation relief creams that my geneticist prescribes. There are devices to make reading easier if you have neck issues, epsom salt baths/foot baths to help absorb magnesium for pain relief, and the list goes on and on. Try the Inspire forum at ednf.org to find a good doc for diagnosing near you.

[Becia]

Awesome. The home health nurse just left and found it amusing that I dislocated my toes this last week. It's like weird things with my joints, they are rebelling is all I can say about them.

Definitely looking into that board and information. Thanks so much for y'all's advice and help