Elizabeth,
Just wanted to comment on the mastitis issue (and wow, makes me hurt all over thinking about it being so bad as to require hospitalization!) as I would have mastitis multiple times with each baby I nursed (except my youngest,now 3, because I hardly made any milk no matter trying everything lactation consultants suggested including an RX for Domperidone which is a galactagogue… I think I was too sick overall and making breastmilk was a low priority for my body). I did a lot of research because I was so tired of getting mastitis and found some info about using ultrasound (the kind used on muscles, etc.) to help break up the plug that was leading or started the infection process. I did that several times with my second to last breastfeeding baby and it did help (I went to my chiropractor and shared the info and instructions with him and he would set up the ultrasound machine and timer and then leave the room and I would do the treatment on myself).
All this to say I now wonder if all this mastitis is because of an underlying blood flow issue? I have CCSVI (as well as EDS, POTS, etc.) and so I know my blood flow is faulty. I know my ability to make milk got less and less as I got sicker over the last several children I had (didn’t KNOW I was sick then, as pregnancy would give me an awesome remission from the symptoms I was having off and on then) and breastmilk is totally dependent on blood flow, so I think the connection to low quantity of milk is easily made. But, I also now wonder about this same poor blood flow contributing to mastitis. Maybe I’m wrong. Maybe it is more connected to cytokines? Hmm….
Oh and I also had worse OI/POTS symptoms during pregnancy, especially the first and second trimesters. First time I ever fainted was during my first pregnancy, while standing in line at the grocery store. So embarrassing! It would happen pretty often, but I learned to get my head down so I wouldn’t faint after the first time!
Your list of biggest symptoms are all like mine! I will tell you that taking Diamox has helped so much with many of those symptoms! The bladder issues (which they think I probably have IC but I wasn’t crazy about having the testing done): the one thing that has reduced the amount of bladder pain issues for me (it always feels like a bladder infection, and sometimes it is, and sometimes it isn’t) was to cut out sugar and reduce carbs. For me at least, that really helped my bladder. And also keeping up on water. If I get a little dehydrated I will start to notice bladder discomfort too.
I was also not a clear cut EDS DX… took seeing a neurologist who thinks outside the box a bit and looked at all of me instead of JUST the Beighton scale and skin/scars. I have kids that score higher than I do on the scale, some that have the stretchy skin and some that have the really wide scars, but seems none have all of those together. Some have had dislocations, but not some of the other outward signs. So, don’t give up on the EDS connection. There are other things to look at/consider for an EDS DX.