Pots And Eds

[Courtney812]

So if I had EDS would my pots then never go away?

I suspect I have eds and this is why

I have those bubbles on my feet when I stand and on my wrist if I press in by my palm

I can bend my fingers and thumb.

If I wanted... I could bite my toenails lol

I can reach past my feet when sitting legs out in front.

Does this mean most likely EDS?

My 4yr old daughter dislocated her elbow 3x in one year when she was younger, but it hasnt dislocated in 2yrs, we where told nurses elbow was common....

Im really depressed now... just one more thing I may have passed to my poor kids... sigh.

Plus I have a aortic leak its mild.

Im 24.

[Courtney812]

Also does eds get worse with age and would it make pots more progressive as the viens stretched with age?

Ive never dislocated anything.

However my feet hurt and my hip but I figured it's because im fat

[MightyMouse]

I have a collagen defect that is not EDS but shares lots of same problems. I've never read anything saying that people with hypermobility had shortened life spans. There's no way for anyone to say if your autonomic problems will ever go away, EDS or not...

As for getting worse, my understanding is that EDS isn't progressive the way cancer, ALS, Alzheimers are. However, aging may affect how much joint/bone page you have b/c of repeated injury, inflammation, etc. as a result of joints moving too much and getting injured frequently. I will be 50 this year and I have lots of osteo arthrictic changes and associated aches and pains.

As I've aged, I can tell you two positive things from the collagen defect. 1--my skin looks much much younger than my actual years... and 2) My tolerance for standing has improved a little over the past 10 years --- which maybe the normal hardening that happens with aging veins and arteries isn't bad a thing for me? Who knows... ?

My only caution here is that hypermobile type of EDS is what I'm referring to. People with vascular type are definitely at greater risk with age (this type has a genetic test available).

[Katybug]

I agree with MightyMouse that there is no way to predict if the dysautonomia will go away regardless of EDS. I've had active EDS symptoms all my life, looking back, but I didn't have POTS until the last 7 years. No one really knows why. I can hear the panic in this post and the other one you have going. I've found that, although it was a hard lesson to learn, I am at my best when I deal with these medical issues calmly and methodically. Once I found out I had POTS, I found a POTS specialist. Then I started researching plausible root causes and prioritized how I was going to address what I found. I sought out the appropriate specialists and made appointments (I would suggest doing this step asap as these highly "specialized" specialists tend to have long wait lists for new patients. ) While I was waiting for my appointments, I collected as many of my medical records and family history as I could. I also continued my research and made notes about questions I had, treatments, etc.. I found that channeling my energy this way helped me make progress while also reducing my stress levels (which I happen to believe is a major help with POTS/EDS/MCAS symptoms, at least for me.) I say all this not to preach but because I wish someone had been able to show me the way at the beginning of all of this. I could have saved a lot of time and aggravation. I went to about 30 useless doctors before I found the ones I really needed. You know you have POTS, you know you get relief from MCAS drugs, and you suspect EDS. Finding doctors that can now properly diagnose and treat you is an important next step. To find an EDS doc near you, try the Inspire forum at ednf.org. You may also be able to get the name of an MCAS specialist in your area if you ask here and on the ednf.org forum as many of us have MCAS as well.

[Courtney812]

Thanks so much :-) I know ive sounded panicked... thanks for all your insight guys.

I am trying to take the approach IF anything was to happen ill cross that bridge then.

Until then there is no point in worrying about the what ifs. I need to focus on what makes me happy...

Family, friends... leveling up in games.

My daughter's and when im able cooking and making cute hats.

Thanks so much for taking the time to respond.

[MightyMouse]

Courntey, hello again-- Katybug brought up something that I wanted to chime in on too. I do yoga and have found that it gives me some of my longest lasting good effects--the meditative piece helps with my everyday focus and keeping me from getting too emotional in situations that life throws my way (emotional events can trigger huge autonomic response). Yoga doesn't require you to do anything that can harm your body if you follow the basic rule that it is YOUR practice--you only push to YOUR edge, not through it or past the edge. Currently I'm recovering from a serious nerve injury that occurred at work last October so I can't do my typical practice because I can't do any weight bearing on my arms until things settle down; it's been tough because as a result, I've lost strength, but worse, I've lost the joint stability that the muscle strength gave me. My neuro surgeon used to say to me "keep up with the yoga because it's keeping you out of my operating room".

It's nice to read that you are able focus on what you DO have that's amazing. I never had kids of my own, but I am now step mom to two adult children--kids don't give you much time to wallow in worry, right? That's probably why I've stayed working in special education so long--many of their challenges make mine look like tiny problems. That doesn't mean I can always push through my symptoms and work --sometimes I end up laid flat out--like last week. I worked my first full day on Monday last week, and got through the work day, but was so exhausted when I got home, that at 4:45 pm, I was in bed, and shortly after, sleeping.

Nina