Try said...
Hi everyone,
I’m new and I’m desperate for some help or support of some kind. I apologize for posting here without being diagnosed. I absolutely promise I am not trying to be a hypochondriac about this, I’m willing to accept I’m crazy if it comes down to it. I’m just lost. This will be long because I wanted literally anyone to see as much as they could relate to. I understand if it’s too much, but I tried to cut it down.
I want to mention my Mom, because I believe it might be given to me genetically. She was a water meter assistant, closely before she got pregnant with me, in Oregon and was often bitten by insects; My brother and sister do not possess any of my symptoms. One day she had severe joint pain, swelling in the knees, flu symptoms, numbness in the feet, exhaustion, fatigue. The doctor strongly recommended Lyme testing but she forgot about it. The symptoms then faded, but recurred every few months/weeks throughout her life, noticeable by me and completely unknown to doctors. She gave up with docs until she found out about Lyme disease through Avril Lavigne and immediately called/emailed me sources.
To avoid the lifestory thing, I’m going to just do my best in categorizing my symptoms. Other than my toddler phase, everything is a build up. I experience all of this in different severities from every moment to every day. I do feel practically fine some days, but definitely not other days.
Baby/Toddler (1-4)
Respiratory problems, and earaches that were severe enough to need tubes for them.
Child (5-14)
Visual snow (static in vision, blobs moving in vision, etc.), IBS symptoms (debilitating lower stomach pain, upper stomach pain and chronic constipation), feelings of hot and cold on my lower back, obsessive thinking about past events and scenarios (hours of my day), violent intrusive thoughts, brain fog, sensitivity to loud noises (switched classes because the teacher was too loud), and feeling like the world was in fast forward a few times a week. I was also a slow learner, so my Mom would put me in private classes for almost everything. The teachers saying I could learn like all the other kids, I just had a very hard time focusing and following material, and understanding assignments if it wasn’t repeated.
Teenager (14-19)
This was the age of the diagnosis, as mental illness took over my life. I was diagnosed with: OCD, depression, schizophrenia, PTSD, and probable borderline personality disorder. Symptoms they acknowledged included: obsessive thinking about past events, obsessive thoughts about suicide, violent thoughts, repetitive and random racing thoughts, repetitive phrases or song lyrics (these last over a year sometimes), chronically paranoid about others talking about me behind my back, cyclic major depression, intense mood swings in normal situations, chronic fatigue (sleep 14-18 hours often), brain fog, word finding problems, self harm, hearing voices in my head, delusions of being psychic, flashing in my vision or shadows in the corner of my vision, chronic nightmares, “nats” in my vision, high obnoxious sensitivity to sound and visuals in my surroundings during stress.
Additional physical symptoms included: Increased stabbing chest pain and also in my breast, night sweats, my first ulcer, much more sensitivity to my skin (It felt like when someone touched me it was lightly burning or stabbing), and my first acknowledgments (by both friends and myself) that I had issues with directional hearing (while watching TV I’d hear a sound from the show and think it was in another room, people would shout my name and I almost always look in the wrong direction, and good luck on finding my cell phone if it rings).
Adult [20-23]
One day I was having extreme chest, back and arm pain. I honestly believed I was suffering from a heart attack, and I was so miserable in life that I decided not to go to a hospital. However when I woke up, I went to a doctor. I was told that I likely suffered from broken heart syndrome due to the stress of my illness, and then I dived into my mental health as hard and as rationally could. I read so many self help books, and even created my own self help program that has benefited me in so many ways. I made such a huge effort in my life to get better and with my friends- it was hard for it all to make sense why I was still experiencing this exhaustion, horrific thinking, and depression off and on so consistently with so much desire for self improvement (my therapist definitely likes me). I’ve tried a lot of medications (15+) and are very sensitive to almost all of them, often having rarer symptoms such as dystonia or increased hallucinations while taking antipsychotics.
I was diagnosed newly: bipolar I, (final and only diagnosis now) schizoaffective. The new acknowledged symptoms included: major mood swings every 2-4 months which involved a debilitating depression, going through short period of heightened psychosis/elevated moods after depression, positive effects from mood stabilizers (specifically from ones that help seizures), outbursts of crying, GAD/social anxiety/paranoia.
Physical symptoms did not improve or worsen during this time after the chest pain unless medication was involved. Other than having a second ulcer at the age of 23, likely because I was on 7 medications at once, and not getting much better. I’m now on one.
[24]
For the past 7 months (before I knew Lyme even existed, which was about a month and a half ago) I’ve been experiencing increasing symptoms of: joint pain in my elbows and crunching knees, numbness from my elbow to my fingers, difficulty with pain in my hands and fingers, food intolerances (high sucrose anything/fruits and breads, and am now on a changed diet which is helping), stomach spasms that force me to throw up, when I scratch my skin it feels like a sunburn, migrating pains through my back and lower belly are getting increasingly worse by the months. I’ve been going to the doctor very often now trying to figure out my stomach and joint problems. What followed 2 months into these physical problems was a terrible depression I am still fighting, with anger I have never experienced before. I have been depressed for five months now, which involves such an array of debilitating symptoms, and usually, would subside a little by now.
New mental health problems include: no sense of direction (got terribly lost last week and panicked for so long before I remembered I had a GPS on my phone), increased panic attacks, tremors, racing heart, chest/back pain, more word finding problems and more crying.
[Emotional rant, feel free to ignore]
Its taking over my life? Whatever it is. I’ve lost any aspirations for a real career, I was forced to drop out of college, I’ve been in and out of treatment and have tried very hard to get better- still am. My therapist knows basically nothing about Lyme, but she has been so confused with me she does think it could be something more physical at this point. I haven't met a single person, no matter how mentally ill they seem, that can relate to my variety of symptoms. It’s terrible because I feel like I can relate to them so easily. I don’t want to be the whiny person that says “no one understands” and I try not to be because I think there must be someone, but just today I was sobbing because I felt like no one really 100% believed me because it feels so impossible to understand and it’s getting to the point where I feel ridiculous for even complaining. In the system for mental health system for ten years, ugh. I find myself telling myself every day that I “must” be doing this to myself, I just have to figure out how to think better and change my perspective. When I feel mentally better, the pains tends to be about 40% less. Joint pain like this at 24? I feel stupid every time I go to the doctor, which has been a lot. But the more I suffer from this physical pain the more severe my mental health is getting.
Anyways, thank you so much if you managed to get through all of this.
Thank you even more if you relate and respond, you’re my hero.
Do you think if a brain scan could confirm this?
First of all I just want to say your such a strong person for having gone through all of that. Seriously, like a heroic amount of strength. Your the only person I've read that talked about
the directional hearing thing. I have that as well. But, its like a random sound from far away will come out of the background ambiance and be so loud then fade away. Its worse with anxiety. I relate to a lot of what your saying. I hope your doing ok these days.