Hey! Hey! Hey!
This past week has been a challenging one. The week before though, I would say was more challenging than this one so that's good that it's improving. I keep feeling quite sick- so praying for that to pass soon :).
I went to my Primary's office this week because of my body pain that I've experienced for over a year? And it greatly lessened during the summer and started creeping back these past two weeks and actually my Doctor made a connection that it was around the time I went off of my SSRI (I can't remember if I've talked about the SSRI on here, but I know I have recently on my personal blog; livingwithdysautonomia.blogspot.com), and he said that perhaps that's why it's coming back because SSRI's help individuals with body pain (did anyone else know that?- I was surprised!). He did the fibro exam on me and said I had all the points (I don't think he was overly thorough with it though), but he wants to rule out other things, he checked my thyroid, for inflammation and Lyme (through blood tests) and all came back negative. However, I forgot that I have been on an antibiotic in the last 60 days (actually last 30 days) and so I'm not sure how accurate the Lyme testing was. My dad said the Lymies (he has Lyme) say that you need to be off antibiotics for 60 days I think it was, and there's more accurate forms of testing out there that would be preferred... and I thought it was cute that he called them Lymies...Since POTSies call each other...well, POTSies. :).
I've been talking to people with Fibro who aren't diagnosed with POTS- in hopes of gaining an understanding of what Fibro could really be causing with my body if I do have it, and at this point- I really wouldn't be shocked if that's what the diagnosis came too. I think it would explain my bizarre burning headaches, and the hip and knee pain that I've had that the Rheumy didn't really have any answers for at the beginning of the year. Not to mention the bizarre episodes I've had of these odd sensations in my legs- anything from tingly tingly, to numb but in pain at the same time, etc. Makes it a challenge to walk sometimes because my legs just get so weak.
Anywho, on to the questions;
Cheyanne: I now we've already talked, but I am glad your Doctor is investigating other issues and diagnosing ones that you know you have so that you guys can hopefully make some more ground with your treatment. I'm cheering you on girl and praying for all of my POTSies! :). Also, I wish you the best with the diet changes! I attempted the raw diet- but I don't always do the greatest with the raw veggies (I try to eat a lot of raw fruits and what vegetables I can). I hope you can make some amazing ground with your sickness through your diet. I try to be very strategic when I eat...Trying to get my servings of fruits, vegetables, grains and proteins... Even though it is still hard with where I am, it gets easier and easier over time! I recently found out too, that I am no longer anemic...Showed me the amazing impact our diet and nutrition really does have on our health!
Your questions; Do any of you all have eye issues that are POTS related? Before I answer, your experience at the eye Doctor sounds awful! :(, but yes, none with any diagnosis name though. At least I believe the issues to be from the POTS. I do have an astigmatism (my dad, sister, brother and I all do), and my brother is legally blind in one eye (so it's a bit hard to say), but I get lots of blurry vision and have trouble focusing on things (the focusing issues are probably the astigmatism though).
And; Do any of you get excessive amounts of phlegm immediately after eating? I do not have this specific problem... The only thing I can think of is...If you put your tongue on the tip of the roof of your mouth, and touch your forehead it moves that bone around enough that allows your sinuses to drain. Perhaps that motion is taking place while you eat? But mucous is also a lubricant for your GI system, so I'm not sure. Wish I had more answers for ya!
Michelle R: Nice post :). That is stinky that school is being killer on your body. Do you have any accomodations for you with your health? I sure hope so! Also, I hope you can definitely see someone to help with your pain and eventually see that Dysautonomia specialist. Sorry your parents won't take you to see him/her! Perhaps there's one closer?
Your question; Does anyone have problems with their tailbone? Not recently, but I have had horrible tailbone pain in the past, with no true answer of why. I hope you can get that figured out, too!
Michelle K: Maybe we can come up with nicknames for you and Michelle R based on your countries (Australia and U.S. for the readers who don't know), hehe. I thought it was SO amazingly awesome that you and Rhianne got to see each other! I was so excited to read that. However, I am sorry that you got to sick after the trip and had to be hospitalized (or was it just an ER visit?). The vomiting sounds awful! May I ask what all is happening with you that is serious? We're a big family, so we worry haha. You go girl for letting this give you more determination to do something fun and go on that cruise! Whoohoo! Or, Oi Oi! As you and Rhianne told me was a chant :).
Anddddddddd..I'm looking forward to checking out your blog!
Your question; Do you have an interest in any medical shows, if so any in particular? I, suprisingly don't. I used to like untold stories of the ER- but it makes me think about my own health too much haha. Really, if I watch a medical show- it's something like "A Baby Story."
Rhianne: I am sorry you are doing horrible, but I have a question for you. Is it possible you could have a bizorre? Well, that's what we call it haha, it's when food matter collects in your stomach and doesn't digest. My dad seems to get them periodically, and he told me that it makes him cough up food sometimes (I didn't know this happened to him). Of course, you may have had all of that checked out by now! But I wanted to mention it. My dad likes to jokingly sing, "My Bizorre's back and there's gonna be trouble," I think it's his little remake of a real song, but I don't know which one haha.
Logan: I really hope you get to feeling better with your GI! We talked the other day so I'm not really sure what to write in here that we didn't already say haha. I know your medicine made you feel all loopy even though you didn't take a full dose, so I really hope you guys can get that figured out so that you can still get the benefit you are looking for (Rather from that drug or another treatment!).
Your question; If you could be good at or participate in any sport despite your Dysautonomia, what would it be? Volleyball all the way! It was a passion of mine before I got sick. I still enjoy watching it, though :). I think it's so cool that you did horse back riding and you would rock water sports!
Sorry this is so long guys, get excited for Michelle R next week and then I'll be back the next week :).
Almost forgot! My question: Does anyone have Fibromyalgia (I know Cheyanne does <3), or Lyme, and if so, any advice in what to do to for testing or ruling other things out, etc.?