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.
Thank you so much for your reply!
I had mastitis with both my pregnancies also but, the second one was the bad one. I will never forget how horrible it was. ugh! Your thinking process of the blood flow problem could definitly be on to something! I am not too familiar with cytokines but, trying to learn more about that. That is wonderful that you found the use of ultrasound to help with the mastitis! I will keep that in mind if I ever find myself pregnant again :).
Thank you for your info on what helped you with your bladder pain. It can get so bad sometimes as I am sure you know! You said it exactly when you said sometimes it is a bladder infection and sometimes it isn’t. My last bad episode was so extreme I thought there was no way it could NOT be an infection. Well it wasn’t so I was on those antibiotics for no reason. Anyway I have found staying hydrated to be the biggest help with that too. When I was in pain with it before I use to always hop in a hot bath but, now that makes my OI act up really bad. So I read some advice on a IC site one time and it was good advice. Kinda weird but it was to apply a heating pad in between your legs. lol It helps me get through the pain until the uristat kicks in. I notice low carbs and sugar help me with my OI. I will have to pay attention if that could be a help with the bladder issues as well. I also found that I have to be careful with acidic food because I think that acts it up too.
How much Diamox do you take? How long have you been taking it and have you noticed any side-effects? That’s exciting that our symptoms are very similar so we can maybe help eachother. I am sorry you are also going through this though. It has been the hardest time of my life. Everything you said about your symptoms was so me. It sounds like you have a full house also and it makes it so hard dealing with all this. How many children do you have? I have hope we will get better! Are you on any support groups? I am so happy I found this site. Thanks again for sharing.
Take care!