A Circus Of Symptoms--And A Big Thanks From A New Member!

[ophelialit]

Good evening, all!

I've come to the DINET forums many, many times over the years (for comfort, encouragement, a much-needed chuckle), but this is the first time I've been moved to post. In the last 2 months, I've experienced a veritable kaleidoscope of symptoms associated with my various disorders (that would include mitral valve prolapse, POTS and a host of inflammatory issues that are very likely related related such as interstitial cystitis, GERD, and costochondritis), and I'm just SO thankful that there's a place where other people understand the frustration of never quite knowing what to expect from day to day.

Wake up with wonky vision in one eye? Someone here knows how that feels! Too dizzy to read, but not too dizzy somehow to watch Lifetime movies? Someone can relate! Random stabbing pains? Elephant sitting on my chest? Wailing when the temperature outside exceeds 90 degrees even though my hands feel like they're frozen solid? Body temperature of a irritated corpse? Yes, yes, yes!

My professsional life is insane--60 hours a week of high-paced, intense-pressure demands (PERFECT for me, right??), and I often wonder how I'm going to make it through one more meeting, project or performance appraisal. Being able to see how others handle their lives with grace and humor gives me the realtiy check I need to keep it moving!

I plan to start interacting with on the site more becasue I really do feel as if I've found a fabulous, welcoming community...for that, I thank you!

[jpjd59]

Welcome! Wow, how do you do 60 hours a week? My daughter has POTS and she can barely get out of bed and walk around the house.

[ophelialit]

Honestly, I think I've been doing it for so long that I've just become accustomed to ALWAYS feeling terrible--as sad as that sounds. I come from a very...."driven"...family full of doctors, lawyers and other Type A folks. I'm kind of the black sheep and more of a "Type C+" person, but I've always felt pressured to succeed. In fact, when I was a child and beginning to experience some troubling symptoms (shortness of breath, exercise intolerance, etc.), my parents were quick to label me as a hypochondriac and repeatedly offered to take me to the hospital "to see kids who are REALLY sick." (Nice, huh?) I believed for a long time that it was all in my head and just had to push through it all--passing out a lot along the way! College, two graduate degrees and now this crazy job which is just the last thing in a long line of hard-won achievements designed to prove something....now that I'm older, I'm pretty sure all I've proven is that I'm exhausted and need a break!

Probably a longer answer than you were looking for--sorry! :-)

[ophelialit]

I also forgot some of my other favoritle symptoms....a soaring pulse at random intervals, an inability to stand up for more than 5-7 minutes at a time (makes presentations super interesting!) and episodes of extreme shaking when really tired or stressed....I'm a good time!

[issie]

I've come to the DINET forums many, many times over the years (for comfort, encouragement, a much-needed chuckle), but this is the first time I've been moved to post.

I plan to start interacting with on the site more

Glad you decided to chime in here ----what caused you to be "Moved to Post", after lurking around for awhile? Has things taken a turn for the worse for you?

I must say, I appreciated your humor in your first post here. You sound like a person who is pretty on top of things and successful - despite having to deal with issues. I like your attitude.

Issie

[ophelialit]

Thank you for the kind words! I did, indeed, decide to post because I've been more symptomatic recently (including my rosacea, which has flared up in a very unattractive, Edgar Allan Poe "Red Masque of Death"-esque kind of way) and have, as a result, felt more frustrated and isolated.

My supervisor and colleagues, are, for the most part, undertanding people, but when they need me to fly to the West Coast at a moment's notice, they really aren't interested in my "Oh dear, I don't like to fly because it makes me feel terrible, and I need time to rest and hydrate, and I can't possibly attend meetings for at least a day after the flight" speech, so I just suck it up and move on--feeling angry and resentful the whole time.

My husband, who is utterly wonderful and supportive (but also somewhat of an uber-athletic Viking-type), really can't understand how I feel, and a casual comment from him such as, "Good morning--what hurts TODAY?" has the power to upset me terribly even though I know, in all likelihood, he really just wants to KNOW so he can plan the day accordingly. Blah. It's just all....so MUCH sometimes....it's nice to come here and talk to people who've been fighting the same good fight, you know?

[issie]

It's nice to come here and talk to people who've been fighting the same good fight, you know?

Oh yes, how well we can all relate. It's a daily mask we wear and a suit facade that we become really good at wearing. It's nice to be able to just say what's going on and pour our hearts out and feel ---the acceptance from others that understand. I hope you will find the answers and support you need from here. Sorry, that you too must join us here - but, I'm looking forward to your sense of humor and expression.

Issie

[LindaJoy]

Ophilialit, Welcome.

I'm sorry you have to deal with this dratted condition, but I'm glad you found this site. You're right--great place to talk and feel comfortable in your own dysfunctional skin, and organs, and bones, etc.

You do have a great sense of humor with all you deal with. The Itchy-Scratchy type cat you have as your icon is a treat, too!

I just wanted to tell you, I have wonky vision in my right eye a lot, especially in the mornings. I've had doctors do everything to it but biopsy it in order to find out the problem with it, to no avail. It hurts, too. No idea.

And, I'll be awed, too. 60 hours a week? I used to work 60 hours a week, then POTS took me down to, I'm happy if I dust my house once a week. Wow. You are driven, bless your heart.

Oh, wanted to ask you: how were you diagnosed with POTS? Were other things ruled out, like carcinoid, pheochromocytomas and Addison's? I'm wondering just because of the shaking you get. I get that, too, but it's when my cortisol is low. I have Addison's along with Dysautonomia, along with a lot of other stuff. In fact, I have all you've listed, except the inflammatory stuff, which I probably have but don't know specifically.

Well, I've rambled on enough. You take care, glad to meet you, and I look forward to talking with you.

Lindajoy

[ophelialit]

Hi, LindaJoy--thanks for the welcome!

The 60+ hours are REALLY starting to wear on me, and I'd love to be able to scale back or quit entirely and do something else (I dream of writing the Great American Novel--don't all former English majors??), but the cost of living and the current housing crisis in the DC area has me and my husband pretty well trapped. I've lived here for 5+ years, and I still don't get the appeal of this city unless you're turned on by insane traffic, crappy weather, non-stop political yammering and a cost-of-living that basically requires you to be paid in diamonds in order to pay your mortgage! Anyhwo, I digress!

My diagnosis came about in a rather circuitous way--as I mentioned in a previous post, I had symptoms quite early on. Looking back, my docs have theorized that my numerous bouts with a particularly virulent strain of strep as a child probably damaged my mitral valve and/or ANS because the shortness of breath, exercise intolerance, dizziness, etc. have been present since at least 3rd grade. However, my parents weren't particuarly concerned, and assumed I was a hypochondriac (they were both physicians, bear in mind), so I didn't really have any idea what was wrong with me until after college when I started my first "real" job and was drinking espresso by the gallon in order to keep up. I knew the palpitations, sweating, dizziness, chest pains, numbness, tingling, etc. weren't normal, so I headed to the doctor and spent about 2 months being told I had everything from Multiple Sclerosis to a giant brain tumor (Tumor Week was super fun!). When it was revealed that I had NONE of those things, I took to the medical reference books and hypothesized that I might have MVP. Long story short--I located a doc who was willing to listen to me, scheduled the echo, confirmed the diagnosis and sent me on my way telling me it was "benign" and suggesting I take some naps (Soooooo helpful! I think I would've been better off with Dr. Seuss!)

I was fortunate enough to live in AL at the time and finally found my way to the MVP/Dysautonomia clinic in Birmingham where I was diagosed with POTS after a really exciting TTT. At that point, they said I had "Mitral Valve Prolapse Syndrome/Dysautonomia" because I think, back then, that was the most comprehensive diagnosis that could be given. In any case, I now had a NAME for all of this crap, and, guess what? I still felt crappy. It's been a long journey of figuring out what works for me (water, rest, quiet) and what doesn't (heat, stress, caffeine) and dealing with new symptoms as they pop up. To be honest, I could probably use another intensive examination, and I have plans to head to Mayo as soon as possible to see what else they can find and to see if there's anything else I could be doing.

*Breathes* Ok, that was a looooong response, so clearly, my issues do not include an inability to express myself!

Thanks again for the welcome...and I look forward to chatting with you!

PS--I see that you have Sphincter of Oddi Dysfunction as well--I thought *I* was the only one who had that! What a strange sorority to be in!

[Katybug]

Welcome!

I never thought I'd say it, but, I miss working 60 hours a week! But, yes, I can relate to sitting in the office and realizing that you don't recall most of the last 10 minutes of a meeting because you were just concentrating on not passing out.

Your spirit and sense of humor are wonderful! Glad to meet you (although not under the best circumstances.)

[Libby]

Honestly, I think I've been doing it for so long that I've just become accustomed to ALWAYS feeling terrible--as sad as that sounds. I come from a very...."driven"...family full of doctors, lawyers and other Type A folks. I'm kind of the black sheep and more of a "Type C+" person, but I've always felt pressured to succeed. In fact, when I was a child and beginning to experience some troubling symptoms (shortness of breath, exercise intolerance, etc.), my parents were quick to label me as a hypochondriac and repeatedly offered to take me to the hospital "to see kids who are REALLY sick." (Nice, huh?) I believed for a long time that it was all in my head and just had to push through it all--passing out a lot along the way! College, two graduate degrees and now this crazy job which is just the last thing in a long line of hard-won achievements designed to prove something....now that I'm older, I'm pretty sure all I've proven is that I'm exhausted and need a break! Probably a longer answer than you were looking for--sorry! :-)

Ha. You know, it's funny how much this sounds like my life. Driven parents (dentist and head nurse), accusations of hypochondria - my mother threatened to take me to see her severely asthmatic friend so I could 'see what REAL asthma looked like' when I complained about SOB (and then, after a sports coach made her take me to the allergist - where I WAS diagnosed with exercise-induced asthma - she told him, point blank, that I was a hypochondriac) - just being so used to always feeling bad that you push through it. I'm working 45 hours a week, finishing my masters and applying to med school. And just doing my level best to ignore everything that's going on with my body while I do it.

Anyway. I can relate.

Welcome to the forum!

[LindaJoy]

You know the worst for me, though, was when I worked in a prison (I was a prison librarian for three and a half years and loved my job), and I would have health problems and need to get out of the facility quickly. Well, there's no "quickly" to trying to get out of a prison facility!

Used to make me a nervous wreck because the nurses in the prison weren't, well, very good--I had a bp of 154/45 one day, felt awful, was about to pass out, and one said, "I wish my bp was that good. That's a great blood pressure." Really?

Anyway, I couldn't pass out in front of a room full of inmates, so I'd have to hang on until we could clear the room during "count," then I could be as sick as I needed, until count was over and the inmates came back into the room. Then, I'd have to be absolutely strong and healthy again.

Glad I don't work there anymore, although I loved my job. I, too, wish I could work again. I miss normalcy, like having a job I can complain about!

Lindajoy

[issie]

Ophelialit, are you FROM Alabama or just lived there? I'm FROM Alabama. Wondered what you thought of the doctors in B'ham. Still have family up there and visit at least once a year. Just wondering, if we ever moved back - if you thought they were good to use for our symptoms.

Issie

[bellgirl]

Hi, just got through talking with you about eye troubles on the other question, but I have to say, we again have more in common; it's a small world girl I was diagnosed in Birmingham at the Autonomic Disorders Center, too, last year and our symptoms are very similar, and since you are a "hoot" , I guess I will just laugh along with you, because it's better than crying any day...Welcome to the site...Wishing you the best. I would cut down some of those work hours. That's enough to kill a "normal" person...lol

[ophelialit]

Hi again to everyone!

Thanks for the input--it's good to be reminded that there are worse things in the world than work. I can't say for certain,however, that I'd feel terribly melancholy if I was able to switch jobs for something less insane (I ESPECIALLY wouldn't miss the creepy woman who works on the 3rd floor--she always paws ALL of the doughnuts,bagels, etc. at meetings before taking one--ew!)

Concerning my geographic infomration, I'm actually from a small town in Southwest PA (right where Flight '93 went down--it's a terrible legacy, but it helps orient people to my origins), but I moved to AL to attend college and ended up staying there right through grad school both times and one really crappy marriage. (Note to self: Mama's boys = less-than-stellar-husbands).

I do think that the docs at the MVP clinic in B'ham are wonderful--they really provided me with some direction when I was at my most flounder-y, and I wouldn't hesitate to go back if I were ever to head South again. (I know this is weird, but the thing I miss most about Alabama is chicken fingers! You just can't come by them up here in the Northeast!) Anywho, I'm digressing again!

Kimbellgirl--the world seems to be getting smaller becasue I currently live about 6 miles from Bowie--in fact, that's where I go to Target and Starbucks and all of those other necessities of modern life!

I hope you're all planning to do something fabulous over the holiday weekend--we're actually headed "home" to PA to hit the bike trails. I'm concerned becasue it's supposed to be warm (well, by PA standards, anyway), and I don't want to end up a woozy, oozy, dizzy catastrophe. I've found that biking is the one exercise I can tolerate fairly well, but some days I just run out of steam halfway through a trip in the middle of nowhere, and we all sit around staring at each other while I swill Gatorade and contemplate pitching a tent and just living in the woods like the Unabomber for the rest of my life.

Keep me posted on how the eye problem goes, kimbellgirl--I find that the trickiest part for me when seeing a new doc is adequately describing my symptoms--the last time I had an eye issue, I was seeing "ghosting" images. The doc and I played 20 questions while he tried to undertsand what I was seeing: Is it double? No, I would have SAID double, wouldn't I? Is it dark? No. Is it wavy? No. Is it bigger than a breadbox? Aaaaaaghhhh!

Have a good weekend, folks...party on!

[ophelialit]

So, I went ahead and added my signature line to make me all "official"...what a crazy litany of crap!

[rach73]

Hi and welcome,

I was noticing from your signature that you have TMJ, Costochondritis, joint and muscle pain. Have you ever looked up the condition Ehlers Danlos syndrome ? (EDS) Your symptoms are kind of red flags for this syndrome and it tends to run alongside POTS / autonomic nervous system problems.

Many of us here on the forum also have EDS, mine wasnt diagnosed until last year - although when you put all my symptoms together it was very obvious. I was disgnosed within ten minutes of meeting my rhuematologist.

I also have TMJ and have noticed that when I tilt my head down to read a book my lower jaw just flops forward and it can become quite painful because I dont even realise its happened. I also get bouts of costochondritis amongst lots of other aches and pains. My hypermobility affects my spine the worst and then basically pretty much every joint. It is something worth looking into.

Anyway just wanted to say Hi and welcome hun xx

Rach

[issie]

Yes - true about EDS. But, alot of what your signature indicates is MCAS which also goes along with POTS/EDS and MCAS - a trilogy. They are starting to think that endometrosis could be connected to mast cell issues. (I had endo too.) So, could be another piece of your puzzle.

Issie

[ophelialit]

So, I've just returned from a weekend getaway--nice break from the traffic, crowds, heat, etc. Hope you all have had an excellent few days as well. Thanks so much for the insight on my symptoms. I think I've been living in the morass of the POTS/MVP diagnosis for so long that I've neglected to look into any other conditions/explanations; as I mentioned before, I've been considering a trip to Mayo for a full-blown work-up, but I'm not entirely sure that's the way to go. I have a top-notch cardiologist here, so maybe I should add a neurologist? Rheumatologist? What kind of doc would be good to discuss/diagnose the mast cell issues? Any pointers would be most welcome....!!

[issie]

Rheumatologist and geneticist for EDS and allergy/immunologist for MCAS. But, for either one you will have to make sure they know of and are familiar with what to look for because it can get over looked or not diagnosed properly - when it very well could be the problem. Dr. Afrin is the doctor to see in the East - well, he's the doctor to see from any where for MCAS. It's a little easier to get a doctor that knows about EDS - but MCAS is a tricky one.

Issie

[ophelialit]

Thanks for the speedy reply! I'm going to dedicate some time this week to working on contatcing docs, making appointments, etc.--I was pretty symptomatic this weekend (likely due to some unusual--for me--heat, altitude, exertion, etc.) but I was able to get some rest and realize that my workaholic ways are causing more harm than good. I need to be spending more time on things that really matter to me (husband, cat, Ben & Jerry's), and I need to take care of myself so I can continue to do the things I love (biking, hiking, eating Ben & Jerry's) for as long as possible. I'll get it all together at some point....I just know it! Thanks again for the info....I'll let you know how the process unfolds!