I’m really struggling lately with my health.
I can relate to this quote I found online, so,done talking about their autoimmune issues:
“I have diagnoses and medication/treatment for fibromyalgia, clinical depression, seasonal depression, chronic migraine, back pain (degenerative discs, arthritis, herniated discs, venous circulatory condition, non diabetic neuropathy, reynauds, and sleep disorder, not apnea. Is suicide the best option for me? I take hydrocodone 10/325 for aches and pains, and cymbalta for depression and fibromyalgia. I also take montekulast for asthma, levvothyroxine, losartan, and verapamil, with vitamin and mineral supplements daily.”
I’m an absolute wreck- and I dont even know why.
It was suggested I had an autoimmune disorder by a doctor but, they just dont know exactly whats wrong with me. My pulmonary issues look like cardiac, and inflammatory issues look like bone, muscle, or joint issues. My IBS looks like celiac. My white blood cell count is high and I get unexplained fevers, and pain- of all sorts, in all places. I have chronic deficiencies and dehydration, leading to dry skin, eczema, rashes and other unexplainable skin oddities that present with sun exposure, including white spots, or dark spots. I cant breath well so I cant exercise. My vision is degrading. And I’m easily injured, easily sick- and randomly things just stop working or develop infections. And wind up hospitalized for it. I also have chronic severe, severe anemia and as a result, sleep 16 hours a day and am constantly tired, and have migraines often- sometimes so bad I have to go to the hospital because nothing is working and it is so excruciating. I hurt in my joints, to my fingers, my neck (front and back), chest, my wrists and arms, my back (the entire thing) the backs of my legs, I am stiff, weak, inflexible. I experience bloating, constipation, frequent urination, high resting heart rate- I experience memory issues, blacking out, dizziness, and disoriented ness that looks similar to vertigo, and occasional brain fog. I have chronic, constant heightened anxiety and tension, to the point I have to bear medicated. in addition, major depression, thoughts of suicide, panic attacks- ptsd, and dissociation. I also have “shot” adrenal and cortisol glands. I black out if I dont eat every 2-4 hours- proper nutrition, though it doesn’t do much tp make me feel better. But my doc said I didnt have a thyroid issue. I cant eat gluten or dairy- or it puts me in sever writhing pain, bloating and gas- that is so bad, you want to off yourself to make it stop. It exceeds any pain I’ve ver felt before. It’s unimaginable pain, that goes beyond what pain even is- it is truly next level.
I am so unwell all the time, that when its particularly bad whatever issue thats decided to come up- sometimes I just cry in frustration with how unwell I am, how sick of it I am, and what it has done to my life, and deprived me of being able to do.
Healthy eating, sleeping, exercise, and all the supplements you can think of have not worked. I continue to worsen. Even with rest. Eating anything seems to worsen things, and so does moving, or exercising. Even the slightest amount.
I just don’t want to eat at all anymore, because all of it makes me feel like shit. I’m experimenting with diet to try and find what works for me- but so far- it’s not a lot that does.
I don’t know what the issue is, but my body seems to inflame easily. I frequently feel puffy, and I thought it was from weight gain or diet, but despite eating extremely healthy, the puffiness doesn’t go away- especially in my calves. Which, concerns me because I know that’s a sign of a heart problem.
However I’ve had everything examined. My bladder, my kidneys, my heart, pulmonary, my spine, my brain. They say I don’t have, hypoglycemia, hypothyroidism, diabetes, no issues with my bladder kidneys my heart- everything is 100% healthy and fine looking- on a scan. I have no scoliosis either.
But my bloodwork however, and my symptoms, tell a very different story.
I also forgot to mention my limbs fall asleep a lot- sometimes even my head, my face, my neck and chest will get the “falling asleep” sensation. The chest falling asleep happens usually when standing, but not always. But if it does happen when standing- if I sit down, that makes it go away within a few minutes.
I am also constantly sore one way or another. Despite, not doing anything out of the ordinary.
And people have reported that I appear, to have droopy eye lids a lot. To the point that, they think I am on drugs when I’m not.
Sometimes these symptoms are prolific and unbearable, and sometimes, they are more manageable- but it’s always there. The only thing that seems to help, is sleeping.
Supplements and hydration help a little, but when I’ve gotten IV’s int he hospital- I felt amazing. For about, two hours. And then it wears off.
I feel like I need an IV all the time, and that’s just to, walk around a bit more normal instead of like an elderly person who is in pain and can barely pick up their feet. I literally shlep around with my back hunched over taking very small steps.
Oh and I forgot to mention shaking. This happens if I don’t eat well enough and don’t take my meds. And I also have a different type of shaking when I wake up, sometimes- or, if I’m having a panic attack I also may shake head to toe or, become stiff like a board to the point I can’t move my body properly and look like the tin man trying to walk (and feel like it.)
I can list all the medications I take, the nutrition and diet my doc gave me, and the bloodwork results so you can see where my body is at from a medical perspective.
She said she wants to do further testing though, to determine what’s going on obviously.
I have a history of high estrogen (double normal amount) but my testosterone is slightly low. And I also have fractured my leg once. Apparently a history of fractures is a thing in autoimmune diseases so I am making sure to write it down. My blood pressure is always normal though upon readings.
Sometimes my energy and brain fog / memory or whatever like, sometimes Im’ just not with it enough to think to like, tell a doctor everything I intended to tell them. I can barely get out of bed most days. So I write things down a lot to try and help my future self, when I’m unable to recall and explain all of this information- because my brain isn’t working, and I’m too fatigued to even try explaining, or unable to sort of remember alll of the important details.
I have a history of weird illnesses, maybe that matters I don’t know it’s all in the medical records. I had “ghost teeth” as a child Idk maybe that is an indication of something- as well as, I can remember having
sometimes I have flutters or heart palpitations but, I’m very used to that so I wrote it off- I’ve worn heart monitors before after a cardiac event (I went to the hospital, was shaking, my heart was at 200 or something, i was 12. They gave me such and such drug which, i can remember if I look it up but, it starts with an a. A double dose, and then I was back to normal. Felt sore though in my heart and chest for a few days and, began developing depression after that and, started seeing the cascade of health problems from there really- pulled out of dance etc. my physical decline really began there.)
And i have a history of a chronic eating disorder in early development, that was OCD like, so maybe that affected something, I don’t know. I was too thin as a kid, and people called me “twiggy” growing up- I was also unusually small. And apparently I turned blue when I was born, for no known reason.
My health history on my mom and dads side- briefly, though I can go into my detail. There are heart conditions on both sides, polycystic kidney on my grandfather dad’s side (which i was tested for and it was ruled out). I was also tested for Lyme disease and it was ruled out. skin cancer on both sides. And uh, my dad has autoimmune skin rash problems (the name of the diagnosis is long) and was diagnosed with a CNS disorder recently, due to unexplainable pains- as well as planters faschitis, and an enlarged heart. Both my parents have had their gallbladders removed, likely due to heavy drinking.
When I was a child I was diagnosed at 12 after the cardiac event with Paraxyial atrial tachycardia (PAT) though they were concerned it was white wolf syndrome in disguise and told me to be care with exercise as I could randomly die. My doctor also told me to be weary of exercise due to me anemia, because I could randomly pass out, and hit my head.
I had memory and attention span issues that were significant enough for me to see a doctor about it, and they suggested left hemisphere brain damage from a car wreck, but I wrote it off because after the wreck, they said I didn’t have a concussion after I got a scan- though I symptomatically did feel like I had at least a minor one. Unless I’m not remembering that night properly, which is very possible. I had a lot, of disoriented ness.
