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Still Sick

I’m still not well, and have seen more doctors since my last post. I’ve stopped the gluten-free dairy-free diet since I wasn’t seeing any benefit, except for maybe less acid reflux.

As it stands now, I have two main concerns that are causing me a lot of distress:

Neck/shoulder/head pain that only allows me to sleep about 5 hours each nice. I can only sleep on my back because any pressure to the side of my head causes my entire head to hurt and then my arms and sometimes even my legs feel too heavy and achy. All of the pain and weird feelings go away once the pressure is relieved, however. Seems when I explain this to doctors it’s unusual. I had a neurologist tell me it’s fibromyalgia but I doubt it since I don’t feel all that achy otherwise.

Ear issues like you wouldn’t believe. I’ve been using hydrocortisone cream in my ears for a week now to help with the itchiness but the tinnitus in my right ear seems to evolve constantly. The regular high pitch sound and head buzzing has largely gone away but was replaced by a weird low “siren” sound that increases in volume when I yawn. It also has started reacting more to certain fan-like noises such as the fan in the bathroom, the furnace, the microwave, and the freezer and cooling sections at the store. It is really freaking me out and I pray it’s only temporary. The ear fluttering has mostly gone away thank goodness, and my hyperacusis is much better, although some things still feel too loud. What’s weird is sometimes things seem too quiet too. I feel like I have some brain damage with all this going on.

Other things that I’ve noticed:

Painful acne, mostly on my scalp and neck.

Feeling overstimulated in public places (had a panic attack from being in Kohls for ten minutes to do an Amazon return).

Near constant internal trembling. Could be my anxiety, I am really not sure.

My periods are just weird. They are never on time, I don’t have ANY cramps anymore, and they tend to be less heavy but last longer. I still suspect hormone imbalance which I plan to speak to my doctor about during my gyno annual exam later this month.

I still don’t know if I believe in reactivated EBV after seeing an infectious disease doctor who tested the EBV DNA in my blood and it showed it wasn’t replicating. My antibodies are high, though, which some doctors claim means my immune system is primed to fight EBV and some say it means I have a reactivation. Who are you supposed to believe? I still wonder if I have Lyme disease or some other tick born illness but testing is so unreliable I don’t know what to do.

I saw a dentist who is highly trained in TMJ issues since I’ve been noticing clicking in my jaw and I know I clench my teeth at night. The night guard from the regular dentist didn’t help at all, and seemed to make things worse in fact. This new doctor did a bunch of tests and said my bite is off and my lower jaw likely needs to be moved forward because it’s probably causing me difficulties breathing at night which causes the clenching. I am having a CBCT scan on Monday to get more answers. It’s to look at the jaw but I’m hoping it captures my sinuses and ear as well since I still think I might have eustachian tube dysfunction which could have been triggered by my rapid weight loss. I’m also leery about changing things to my teeth and jaw and making things worse. I did read the grinding can cause the neck and shoulder muscles to get tight, though, so it’s a whole chicken vs egg situation since I’m not sure what is the main issue causing the others.

If I could just find the root cause(s) of my issues, I could then address them and feel better! I am so tired of not being able to sleep on my sides, or get enough hours of sleep daily. I’m tired of all the hearing abnormalities and my inability to go out in public without panicking. My entire life has been up in arms since April and while some things have improved, I’m still miserable on a daily basis. I wish doctors were more helpful, but they only see within their own area of expertise and cannot seem to look at you as a whole. Even my integrative doctor has been useless as far as I’m concerned. She’s great for prescribing meds or getting blood work done but I feel like she doesn’t have a clue what’s going on with me either. It’s so frustrating because I just want to feel like a normal person again instead of feeling anxious constantly. I can’t even take pain medication or muscle relaxers because they make my tinnitus worse. It really complicates matters even further. I go for another round of trigger point injections later this month (I had some last month but they didn’t knock out the pain as much as I had hoped). I just wish I knew why the muscles are so tight and how to loosen them. Stretching and physical therapy seem to make things worse. I feel like my body is completely ass backwards.

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