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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Reply To: Endocrine issues and EDS

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › Endocrine issues and EDS › Reply To: Endocrine issues and EDS

July 1, 2012 at 2:39 pm #2503
Give My Daughter the Shot!
Participant

CAUTION: HAS BECOME A LITTLE LONG WINDED

Hi Barbara, Thanks. I do, VERY MUCH, wonder about the overlap – regarding INSANE FATIGUE! I am definitely hypothyroid and levels were 20 times what was the HIGHEST NORMAL RANGE and 200 times over the lowest normal range -they thought my fetus and/or I might die. I felt horrible; dragging myself around and could barely move -even to breathe. Terrible. I’ve now been told that the ferocity of onset for me probably destroyed my thyroid’s function and it wasn’t likely to be functional again on its own. I had an incredible endocrinologist (prior to moving) who was trying very hard to ween me off of synthroid (since I was postpardum hypothyroid by definition). Literally, back to back babies – and, yes, I know that has taken its toll on my body and organs. HERE’S THE DEAL, I am obscenely exhausted and yet my thyroid isn’t profoundly out of whack. My thyroid being what I thought, for quite awhile, must be the culprit of the exhaustion portion of my misery.

The source of my exhaustion almost has to be complex. My genetic doctor mentioned CFS and I’d previously wondered just how on earth bad could fibromyalgia be! I guess the EDS can be exhausting too. Now, logically, what do I try to maintain FIRST to salvage what little I have to work with? See my mind-boggling dilemma?! Like goal setting – what goals do I set? Where the heck do I start.

I have the same confusion with headaches and migraines. Are they a TMJD thing? Is it thyroid related (the knowledgeable endo told me that hypothyroidism causes brain to swell causing headaches). What and how do I treat? What is causing it? Where do I start? I am so ‘beat down’ that I HAVE TO WORK SMARTER AND NOT HARDER. Which is the smarter direction? Where do I begin with goal setting? How do I maintain or (as genetic doctor said) delay degeneration?

Truly, it’s the same confusion with EVERYTHING!! Neuropathy, what to do? Do I even worry about the fibromyalgia? Who cares about the heart now since it’s had it’s time in the spotlight. What human being has a brain that is equipped to deal with all of this crap WHILE THEY ARE LITERALLY LIVING IT!! If that’s not bad enough LIFE IS LIKE A BOX OF CHOCOLATES, I NEVER KNOW WHAT I AM GOING TO GET!! It changes up on me! Ugh! Layers, it never goes away – until the next nightmare symptom commands just a bit more of my attention. How on earth am I to come up with a plan of attack? What on earth do I ask my PCP to start with? What can I maintain that will give me the most relief/maintenance/delayed degeneration? What’s first?

Does it matter that I’m trapped on the toilet for days? If I randomly vomit, I have no idea whether I’m actually sick or not since my body is such a disaster that it freezes me, burns me, launches me into completely unprovoked sweats, forces me to sit, won’t allow me to grasp things, ticks-twitches and jerks, won’t do hardly anything that my powerful willpower tells it to do, AND FAR MORE BETRAYAL THAN I CARE TO NAME RIGHT NOW. When/How am I supposed to care about a mere symptom when there are such a multitude each day. A 5 day long migraine – a problem?- or onto the next set of horrors?

I chase my tail, that’s all! I’ve tried to pretend it away, very unsuccessfully I might add. I’ve tried forcing myself to do things that my body won’t allow – and my body shut down further and burdened me with a HEAVY set of additional horrible reactions to my imposition of the will of my brain. What did I force myself to do, you ask – things like picking up a barrette and a few other weightless items off of the floor. Trying to do a few dishes or a load of laundry. Things that it made no sense to me that my body would not do!!! I’ve tried telling myself – oh, that’s ok! Like in the movies where the comedian stands up after being run over by a few dump trucks; has an arm broken off and laying there, an eyeball hanging out, and a compound fracture of the leg with some silly ketchup -then says I’M FINE or THAT’S OK and it’s funny because it is such a hilariously ridiculous statement given the circumstances. Of course it’s not ok if your arm and leg are ripped off and eyeball is dangling out of socket. I doubt I’d even laugh at that anymore because it’s my real life now! Also, I do wish I hadn’t bullied my body around. I wish I could have gotten some medical support and been given a reason why I needed to slow down!!!! I could literally notice that I was becoming unable to do things that I could do 30 or 60 or 90 days earlier. I had a flu that I never recovered properly from or should I say never regained my former level of function (never made it back up that last step down). I was significanly impaired before that flu. I can’t tell you how many times I’ve wondered if I were going to wake up. At first it worried me but it doesn’t anymore – I detest the suffering! And, no, I’m not whining to die or anything – just saying that I can’t do it alone and if I can’t get medical help there is no point of worrying too much about it. What good would it do? I really feel like my hands are tied here.

Sorry that what has begun as a thyroid issue has become a gripe session. My plate is so incredibly full – it’s awful! I still remember my life about 10 years ago and it was COMPLETELY different in every way imaginable! I had an amazing life that I loved! For awhile I wondered whose life am I living here – and that was when I was feeling much better than I am now. It’s just really incredible! I wondered what I did wrong to deserve this but realized within a few months (8 or 9 years ago) that I could have never done anything THIS WRONG! My health was exponentially better then too!!! I just don’t bounce back from the plethora of health issues now – not at all. The health issues have caused other horrible unbearable issues also. Gimme a break, you know.

Thanks for listening – if you made it this far 🙂

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