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Old 07-06-2021, 06:07 PM
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lholuska lholuska is offline
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Join Date: May 2020
Location: Kansas
Posts: 64
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Oh boy do I have a plethora to share lol. Most of my issues may not seem strange in the "atypical" sense, but to have all these issues at once and at my age (I'm not even 35 yet and I've had these issues since I was 25, or starting around that time) something unusual has to be going on.

So first of all, pre-dating all the other issues, I was diagnosed with TMJD (temporomandibular joint disorder) in 2008. Essentially it's arthritis in the jaw bone, although there is more to it than that that's the best way to describe it. There's little cushioning left where my jaw bone meets my skull (up near the ear, which is why it can sometimes present like an ear infection) I can no longer eat certain things like steak because of how hard it is to chew, I can no longer chew gum or certain types of candy (I haven't had a Starburst or any kind of taffy for over 10 years, blah). What truly sucks is that it totally changes your eating habits, and it's made me self-conscious about HOW I eat, so I don't like to eat in sit-down restaurants anymore. For example, I don't like to open my jaw wide anymore, so the result is eating things like burgers with a fork (or tearing off pieces). Pizza, burritos, even Subway sandwiches too. People don't understand that it hurts and that it's a condition, so the strange and honestly judgmental looks from people aren't worth it, so we stick with takeout or I eat at places with items that people won't judge me for using a fork (buffets are great - you know, once the plague is over lol).

Also, somewhere along the way I was diagnosed with agoraphobia and severe anxiety disorder with associated panic disorder (I have panic attacks).

Then around 2013 I started having my "health crisis". I have a laundry list of symptoms. I started having tremors, my hands were constantly shaking when I felt normal. I noticed it when I would knit, crochet, and cross stitch (which relax me, so why would it be my anxiety to blame). I started feeling weak, feeling like I'd literally run a 10K when all I did was put a load of laundry in - out of breath, shaky, cold and clammy with sweat, and lightheaded. Then the fainting episodes started - one morning my husband and I had a lazy moment in bed for 20-30 minutes but I eventually had to get up to go to the bathroom, and I'd used the bathroom and walked all the way back to the dresser in my bedroom to get dressed, feeling fine, before I dropped like a stone to the floor. Fainted dead away. Like I said, I had been upright for a good minute or two already, so it wasn't "oh man I got up too quickly". I only gained more symptoms to add to the list - random skin rashes (that they "ruled out" as Lupus), muscle jerks (I quit driving after the time I was at a stop light and had a sudden muscle jerk that almost made me slam the gas with another car stopped in front of me), and people told me that they noticed I suddenly got more "clumsy" and stumbled over myself more often but also started to noticeably lean when I stood. There was a lot more but it's just so much. I went to a couple of doctors, touted to be some of the best in this state, but...well, the GP told me he suspected Lupus and referred me to an endocrinologist, the endocrinologist told me I probably had rosacea and was letting my anxiety get the best of me and to see a psychiatrist, the psychiatrist told me she thought I had a physical issue and to go see a neurologist, and the neurologist must have forgotten that her specialty was generally in the head area because she thought I had a gastrointestinal disorder (that I had no symptoms of). They were all taking me for a ride, I had started to rack up some serious bills because I'd had multiple tests including an MRI that I had insisted on (i.e. probably not covered by insurance), and these doctors just kept passing the buck. I stopped the search after that. I was being treated during that whole time, by the way, by my therapist for my anxiety, and my physical symptoms continued.

It wasn't until a couple years later...I went to a family doctor because my back always hurt. The "laying supine on the couch crying" kind of hurt. I had been told by the original GP (that suspected Lupus), who had actually run a boatload of tests back then including an x-ray of my back and neck, that I had several discs in my back and C-spine that were pinched and/or had degeneration. The second GP diagnosed me with severe arthritis and after hearing about my other issues, diagnosed me with fibromyalgia.

And that has been my struggle ever since. I still suspect that the fibromyalgia may either be a misdiagnosis or that I may have fibro but also something else, because fibro doesn't explain a lot of things. Chronic illnesses like to gather - I have met so many "spoonies" (chronic illness sufferers) that have 2-3 different, unrelated diagnoses. In fact, I have honestly never met one that only has one. I still struggle with tremors and shakes sometimes. I now have arthritis in other areas - mildly in my knees, my legs sometimes hurt, and I now struggle a lot with sciatica and pinched nerves in my hips (mostly my right), down my legs, and a lot in my back. 7/10 nights I spend tossing and turning because one or the other hand/arm will go totally numb, usually the arm I'm NOT laying on, because of all the nerves in my back that pinch. Those issues flare up a lot when bad weather comes through - which we actually have a storm blowing in over the next 24 hours so I'm having these issues now.

As far as diagnoses, I have none for the unresolved issues like the fainting and tremors. The rashes have mostly gone away but sometimes one still crops up, and in the last 5 years I've had bouts of breaking out into hives for no reason, at least twice - the last time was right after we moved, October or November. Again, no reasonable explanation. I have also developed chronic migraines (lovely), though thankfully compared to how I know migraines can be for some mine are mostly mild with the occasional very-not-mild one. I'm fairly certain it's not Lupus like original GP suspected. It's definitely not the gastrointestinal disorder the neuro suspected - I actually now have a FB friend with exactly that disorder and I don't have the same issue as she does, at least with her gastro disorder. I have always suspected a disorder called POTS (postural orthostatic tachycardia syndrome), it causes raised heart rates (my RESTING is in the mid 90s bordering on 100s, and can jump to the 120s, that ain't normal) and fainting. I've also suspected it could be caused by thyroid issues, but things don't all quite "fit into place" with that one like it does POTS.

However, as of today, other than my arthritis, TMJ, anxiety, and fibro, I remain undiagnosed for the weird issues. After all that I went through before, I'm not rushing to see more doctors just to get a diagnosis. I have learned to live with my issues, the only thing that is hard to live with is the chronic pain but since I do not want to go back on painkillers there's not much a doctor can do for me that I don't know and can't do myself (exercise, rest, homeopathic remedies, etc).

So...yeah, I have health weirdness. Definitely. lol
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