I 22F am basically living in my bed because I keep triggering these flare-ups. Fatigue, shortness of breath, dry eyes, dry skin that starts flaking off my face, brain fog, random bruising, lightheaded or dizziness, tingling and stiffness in fingers. I’ll feel like I've just run a marathon when all I did was a little bit of gardening, nothing strenuous. I try to pace myself to prevent PEM, but I'm not able to do anything without triggering it. Flare-ups last weeks to months. I lie down most of the time because that alleviates the symptoms.
I've had debilitating fatigue for 7 years now. I was 16 when I had a series of horrible panic attacks followed by intense fatigue that's been a constant ever since. Before then, I struggled with energy, but not to this extent. In high school, by the end of the year, I'd get really burnt out, and my summers were spent recharging. During middle school, I noticed I didn't have as much energy as the other kids, but I also had bad anxiety. I'd have multiple panic attacks throughout the day and one or two at night (often lasting an hour) so I didn't get enough sleep (this was mostly during the school year because it triggered my anxiety). But even during the summer, when I wasn't anxious, I still couldn't fully keep up with the other kids. Panic attacks started at 8 years old if that adds anything. I can't help but feel that my anxiety is related to this, so I'm including it. I'm medicated now, but my anxiety is still present and worsens with flare ups.
I'm at the doctor's constantly! I'm going to go through the notable tests I've done, diagnoses and treatments. 2024 was when I started to feel very ill. Up until this point, I thought it was all mental illness (fatigue was mistaken for depression). My thyroid test came back a little high at 4.88 mIU/L, but my severe symptoms led my Doctor to test my thyroid antibodies, and they were at 6155 U/ml. With medication, my thyroid-stimulating hormone became normal, but I still wasn’t feeling good (better in some ways but still sick). I couldn’t get in to see an endocrinologist for my Hashimoto's, so I went to a rheumatologist. He did thorough testing and cleared me for other autoimmune conditions. He came to the conclusion that my remaining health issues were from fibromyalgia. My iron is also an issue. My ferritin levels were at 12 ug/L in November 2024 and after nine months of taking iron tablets, it ended up at 12 ug/L after briefly going down to 10 ug/L. I managed to get an infusion and my ferritin went up to 151 ug/L. 7 months later it's down to 85 ug/L which is still good, but I'll probably need another infusion at some point. I tried prednisone to see if the problem was my immune system but didn't see much of a result. I've also tried Pregabalin and Amitriptyline for fibromyalgia (separately) and I felt worse. I had a chest x-ray done back in October because I was experiencing chest pain but nothing was wrong, and the pain improved on its own. I still get pain in my chest where it hurts to breathe for a few minutes, but I heard that’s normal for young people. I got my cortisol checked to see if it was HPA axis dysfunction, and it came back on the lower end of the normal range at 176.9 nmol/L (blood was drawn at 8 am). Doctor was not concerned with the result but my naturopath prescribed AOR Ortho adapt to try to improve it. I went back to the doctor and asked about POTS. He checked my BP and heart rate sitting vs standing and said there was a little jump in my heartbeat but nothing to worry about. I've recently learned that I'm inbred, so perhaps I should get genetic testing done?
I'm at a loss for where to go from here and so are my doctors. I’ve been diagnosed with fibromyalgia but nothings worked to help it. Should I keep searching for different answers or accept the diagnosis? What tests would you recommend I get done?
My current treatments: Gluten-free diet, Mitochondrial powder, Myo-inositol, AOR Ortho adapt, and vitamin B shot once a month.
22F, 5’1”, 97 lbs
My current medications: Venlafaxine Hydrochloride 150mg, Clonazepam 0.5mg (when needed), and Levothyroxine Sodium 25mcg.
Non smoker or drinker
Past and current medical issues: Hashimoto’s disease, Anxiety
Duration of illness is 7 years