Eds Confirmed...

[Becia]

So today I had my genetics consultation, and ended up walking out with a diagnosis of Ehlers Danlos confirmed. No blood work needed, but according to the doctor I saw, he was surprised I hadn't complained more of issues before. I'd always been flexible, dealt with a lot of pain, and just thought I was slow to heal with wounds and clumsy. Thought it was all normal for me... Apparently not!

He mentioned some of my GI issues could be related to this as well, so we are investigating that in the near future, as well as why my blood pools because everything in my body is so loose. He concured with my doctors that using assistive aids to minimize the wear and tear on joints and such, as well as going ahead and having a bone density test. It's a lot to take in, although I had suspected it, I guess hearing it made it real to me.

Getting answers one doctor at a time. Taking my days one day at a time. Sometimes I feel good, sometimes I feel pretty rotten, but I'm trying to manage. I'm having oral surgery next month, in which they are admitting me to the hospital where my EP doctor is in case of emergency, and to help me recover from the anesthesia, since I haven't reacted well to that in the past. I'm also meeting with a gi doctor up here, and can take the EDS diagnosis with my POTS to see how we manage these issues.

Just thought I'd share. While I was relieved to finally be able to name this part, part of me was crushed. Maybe I just need some time. And according to a great friend of mine, some sushi and miso soup (in which she is bringing to me to tonight, because i am so tired, I cannot sit up without falling over). Total sodium loaded and deliciousness... Some crave pasta when sad, I crave raw fish and tofu

[SarahA33]

Despite the fact that we strongly suspect a diagnosis, having it officially confirmed is difficult. It was for me anyway, as much as I had prepared myself for hearing the reconfirmed diagnosis' of POTS and Epilepsy @ CC, I still felt like someone punched me in the stomach. Your going to be aright, you are strong and while this may be hard to process now, atleast a diagnosis can lead you to helpful treatment.

Hang in there my friend. One step at a time... you'll get there. You are doing great.

Sending you a gold star! (and a big hug)

Sarah

[Raisin]

i am so glad you found a doctor that seems so understanding and helpful. I also understand it will take time to process all of this information. And you are right, it is different postulating about a diagnosis and then actually receiving the diagnosis. Glad you are going to enjoy some good foods and friendship. Nothing better than that!

[Becia]

Sadly could only stomach about a 1/4 cup of miso broth, and a couple bites of my sushi my swallowing is all messed up lately, along with my stomach. Didn't know that could be relate to the EDS, found that out today. Quite interesting. I'm really getting tired of that.

And yep, thinking you have this, and sometimes feeling bad you're mentioning it to a doctor that it could be, because then they think you're nuts, is really hard, and I kept thinking I would feel better knowing for certain and having a doctor say yes this is it. I burst into tears. I cried all the way home, on the phone, in my place in solitary, and even now. I've just resorted to taking a Xanax per my doctor to get myself to calm down, because my heart rate is over 160, and I am so exhausted and done, but can't shut down.

Hoping tonight some rest and reboot tomorrow. Also running my IV, sometimes that brings my heart rate down a bit too.

[issie]

Not been following this site for a long time. So not sure if you also have MCAS. But it goes along with POTS and EDS. (We call it the trilogy.) I seldom have gut issues since I changed my diet. I find that Tramadol and Bentyl are my best meds for both EDS and POTS. Bentyl is a muscle relaxer and helps IBS too. Tramadol helps pain and all the neutotransmitters. Used off label on those that SSRI and SNRI don't work for. But I try to stay low and cycle off them or they stop working. If I come off every few months for at least a week or two, a lower dose keeps working. That has been my best POTS med. calms my sympathetic system down. Both given to me from docs at Mayo.

There is a good forum where there are lots of EDS people called Inspire.

Issie

[Becia]

Used to use bentyl, but allergic to tramadol. Will be looking into snri for treatment.

[looneymom]

Hi Becia,

Glad to hear that you are getting some issues confirmed by your doctors. This makes it so much easier to get the right treatment.

[Dyspatient]

Hi Becia,

I'm diagnosed with EDS also, just about three years ago. It was the first truly unifying diagnosis I had. It took a while to sink in for me, but I'm finally in the acceptance stage I think. I also have a lot of GI issues, I was diagnosed with gastroparesis in 2013 but had struggled with "colonic spasms","IBS", gastritis, and GERD for most of my life prior to the GP symptoms starting in full force. I recommend finding a GI doctor who is knowledgeable about motility issues, the "average" GI doc isn't always well equipped to handle EDS/GI stuff but I think the motility people are better, based on my own experiences with many (too many!) GI docs. And seek out a dietician consult. It's very important, I just discovered I have a raging magnesium deficiency that was contributing to a whole host of things like migraine, muscle spasms, and nausea.

Good luck in getting some treatments. Although the diagnosis is pretty unifying, I've found the treatments are sort of "baby steps" type stuff, a little thing that helps here, and little bit that helps there.