Not even my worst enemy should go through this

Fair note, I’m not looking for an online diagnosis on what I’m about to mention. To be fair, I don’t think there’s any doctor in the world who can find what I’m going through, but that might be my pessimism talking.

It all started about a decade ago. I was a heavy tobacco smoker who decided to quit cold turkey. Going from 30-40 cigarettes a day to zero made things happen in my body. Headaches was one. But aside from the headache it was this weird feeling right behind my left ear. It felt like there’s something twitching right underneath my skin behind my ear. It’s been 10 years since then and instead of the feeling going away it spread throughout my scalp and part of my face. And it’s there, 24/7, like a ticking bomb.

I went to some neurologist back then, prescribe me pills for anxiety and depression. They helped a bit.
Fast forward 2010. I was watching a movie on TV when all of a sudden my ear felt like it’s clogging. It was a feeling similar to being submerged underwater but only happened on my left ear. It lasted for seconds, but when it stopped a high pitched ringing appeared. I went to the ENT where she verified that I have tinnitus and all she could do is hand me a brochure for a support group to learn how to cope with it.

A year later I started having weird stomach issues. Bloating, constipation, vomiting. I had an endoscopy but the doctor didn’t find anything so he called it “IBS” and told me to eat more veggies, and stop eating food that are “problematic”. I had a food diary and I couldn’t even find out what was problematic. It took me 3 more years and one more endoscopy from another doctor which she found out the first doctor didn’t check me for Celiac. And I was a Celiac. On top of that I also had osteoporosis, which is said that it frequently goes together with Celiac.

But wait, there’s more: Not only do I have a constant pulse around my head, my ears ringing, I’m Celiac and I have to avoid gluten for the rest of my life. All of a sudden my nails on both fingers and toes decided to change color to something more white. But the best part is, the doctors don’t believe me. The dermatologists, however, not only believed me but when I went for an exam they summoned literal classrooms of kids to come to the examination room and take a look in the rare case of “Terry’s Nails” they just found. I felt more like a monkey in the zoo than a patient. They couldn’t tell what caused the nails to change, they told me to do some blood tests and sent me home. Blood tests came clear. There’s been some nocturnal migraines that appeared together with the nails, interrupted my sleep. But they happen once a year for 1-2 weeks. I don’t know why, either.

And if that’s not all, I’ve been unemployed for 3 years. In my country there’s rampant ageism so if you haven’t settled in a company when you’re 30 you’re almost as good as dead, past 35 you are dead. In my struggle I’ve been trying to learn programming on my own, but without a healthy social and sexual life (I have no friends and no girlfriend) I’m struggling to stay functional.

The only one in my life is my mother. She’s almost 60 years old and she’s been hit by a bike as she was crossing the road, 3 days before Christmas. She lost half her teeth, had some fractures due to her osteoporosis but luckily she’s still alive and good. We couldn’t afford a lawyer for the case so the insurance company of the bike rider lowballed us hard, since we need any money.

So here I am venting. I shouldn’t have to say how lost and hopeless I feel, but I am. I have something nobody can diagnose, and even if I magically had the money I have no faith that any doctor can (I went through countless doctors so far, rheumatologists - dermatologists - ENT etc. and there’s no wallet to take any more). Oh yeah, last rheuma I visited tried to gaslight me saying that he can’t see the Terry’s nails (the professors in the dermatology university hospital did) and the pulsating feeling around my scalp “is probably in my head”.

What a sick joke, feeling trapped in my own country, unemployed with rampant ageism, no social life, trying to figure out what the hell is happening to my body (with the 24/7 pulsating feeling around my scalp, the ear ringing, nose clogging, nails changing color and more), and the only person in the world who can believe me to be my mother (I have no other relatives in the world as she’s also cut off from her family and she’s divorced for years, we lost contact with everyone from my father’s side).

Well, that’s all. Thanks for reading, I guess.

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Sorry to hear that you are going through a tough time. I wish you the best and hope that some of your problems can be resolved soon. I haven’t been on here very long (like I started today) and I saw your post. I am 43 and it sounds like you aren’t too far from my age. I hope your tinnitus get better b/c that ringing is irritating so I have heard. Just know that I care for you and your mother loves you as well. Maybe stepping back and pushing the reset button might be in need. I don’t really know what that means but it sounds like something that might help right now. No matter what religion you are, are you currently attending church? Sometimes friends can appear in the most obvious places…it’s like they have been there the whole time and you just didn’t know about them. Maybe take your mother with you to church, maybe not. Just continue to talk about it because that is the absolute best way to resolve your issues. I care about you and want your situation to get better. Stay strong my friend.
Joe

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