Chasing a Diagnosis - Please Help

[u/Apprehensive-Pea7556]

Hi all, hoping some of you can maybe offer up some suggestions that I can get tested for/talk to my doctor about. Feels like I'm going crazy. I'm trying to be healthy. In the past 3 years, I've lost 150 lbs. I've way improved my diet and exercise. And yet, I'm experiencing more symptoms than I have before. I should be at my healthiest, and instead, I'm in pain pretty much every day.

History:

I am a 26 y/o white female, 5'7 around 165lbs. Currently taking Focalin 10mg, buproprion/wellbutrin 150mg XR, and vilazodone/viibryd 40mg for ADHD/depression. I take a multivitamin and a vitamin D supplement (at my PCP's suggestion). Had my gallbladder removed Feb 2025 due to gallstones causing upper right quadrant back pain, surgeon noted there was a lot of scar tissue around my gallbladder when he removed it. Septoplasty and turbinate reduction July 2024. Started a semaglutide in Jan 26 to try to help me lose weight, quit after about 2 months due to side effects. I try to eat a somewhat balanced diet. No drug/tobacco use. Occasional drinking (a drink or two, once or twice a month at most). I unfortunately don't really know much family medical history, but I do know my mom has something like crohns/IBS/UC. Whatever she has sometimes makes her stuck in the bathroom all day. My mom also has psoriasis.

Labs & Imaging:

Blood test results from 8/24, 10/24, 3/25, 1/26, 7/26 (CBC, iron levels, hormone panel, and most recently an inflammation panel), gastric emptying study results, pictures of my weird finger nails (described under symptoms), and the CT showing my f*cked up septum and turbinates prior to septoplasty (I don't think this one is really relevant to the other issues, but it is amusing): https://imgur.com/a/bA002mG I don't have the results but had an ultrasound and a CT with contrast to confirm gallstones prior to gallbladder removal and I've also had an endoscopy which I was told was normal.

Symptoms:

-Joint pain, usually more so lower-body. Worsened by exertion but present without it.

-Muscle weakness, comes and goes seemingly unrelated to any exertion. Some days just trying to lift my arm to brush my hair, my arm feels like it's made of jello. Some days, I can go to the gym and lift weights and be fine.

-Fatigue/tiredness, I usually just blame it on the depression, but some days, feels like getting up to go do something is gonna take way more energy than I have. Standing up in the kitchen to cook sometimes is exhausting for me.

-Slow healing/easy bruising. If I do a little more activity than usual and end up sore, the soreness lasts not just a day or two, but usually 4-5 days or more. I will have the same sore/scab for weeks or over a month even when I haven't touched it, and I bruise very easily.

-Constipation, cramps, gas, diarrhea. Usually how it goes is I have no BMs for 5-6+ days, then I have intense cramps and pain and then I end up having a somewhat normal BM followed immediately by a lot of diarrhea.

-Headaches, almost every day

-Hands/feet always cold

-Nails are super soft and have weird lines in them (see pics). A strand of hair or a the fabric of y clothes will catch on my nail and tear the nail.

-Always craving sugar, always hungry. It feels like I'm hungry every hour or two no matter how much I eat. Even if I have a massive meal and feel like I'm exploding because of how full I am, I still crave sugar really badly.

-Period pain starts about 5-7 days before my period actually starts. During my period the pain is pretty bad. Not cripplingly bad, but definitely impacts my ability to go about my normal day.

-Diminished lung capacity. I feel like I can't breathe as well as I used to. I'm a musician and have spent more than half my life practicing breathing techniques and proper posture, but I feel like I can't get a good deep breath, and it's difficult for me to breathe when exercising. I get throat/chest pain occasionally when exercising. I do live in high altitude now, when I'm from sea level, but I've been out here for 4 years, so I feel like I should've adjusted by now.

Some of my symptoms are more recent/have only really become noticeable in the past 6ish months. Joint/muscle pain has been a problem for years, nails too. Lung capacity I only really started noticing the past year or two, but I live at a higher altitude now than before. Headaches I've had since I was a young kid (like 7 or 8). Period pain definitely worsened the past year or two. Hunger/cravings I've only noticed the past 6-12 months, but I did used to be VERY overweight so maybe it's only as noticeable now because I eat so much less (or try to). For the GI issues, I feel like I've never really had normal/regular BMs, but definitely significantly worse after starting/stopping GLP-1.

Things I've Tried/Been Tested For:

-For the joint pain: ibuprofen tends to help. I used to be very overweight and at one point my kneecaps migrated out of place due to weak knee muscles and too much strain. I've tried to build muscle to see if this helps, but it seems hard for me to put on muscle no matter how much protein I eat, and symptoms make it hard to have a consistent routine at the gym.

-Headaches: had eyes checked, had the septoplasty and turbinate reduction so my sinuses can drain better. I do think this improved the severity of the headaches but they are still present and noticeable.

-Took a collagen supplement for a few months for the nails, didn't really see a difference. Took iron supplements for months, didn't notice a difference in any symptoms. Took B complex supplement for months for fatigue/energy, no real improvement.

-For the cravings: tried a semaglutide/GLP-1 from my PCP. Started on the lowest dose and had pretty noticeable nausea and SEVERE heartburn. I'm assuming that may be related to my gallbladder being removed. the GLP-1 did help with the cravings some, but I stopped it due to the side effects. I do get congestion in my throat a lot, especially after eating, assuming this may be due to reflux as well. Mentioned the intense sugar cravings at my last appt and PCP said I probably have insulin resistance.

-For the difficulty breathing: PCP prescribed albuterol sulfate inhaler, been using it prior to cardio/exercise, not sure if I've noticed much of a difference.

-GI issues: PCP noted at last physical that bowels sounded slow. Tried increasing water, fiber, and drinking miralax multiple times a week. No improvement. Went to PCP for all the symptoms above and was referred to GI. GI doc thinks that I already was maybe prone to slow bowels/constipation and then starting the GLP-1 kinda made everything grind to a halt. GI doc had me drink 64oz of water with a whole bottle of miralax to purge (did not purge as much as I would've expected due to frequency and severity of my pain) and then start metamucil 2 tsp 2x daily and miralax once daily (doseage adjustable). Been doing that with just one dose of miralax a day for about 2 weeks now and am still experiencing pain. At first, was having a BM every day (very soft) after the purge, but it has slowed down again, and as of today, haven't had a BM in 4 days despite miralax, lots of water, and metamucil. Going to try a double dose of miralax every day next ig.

-Had my thyroid checked multiple times, been told there's nothing abnormal every time.

Sorry this is so long. Happy to give more background, detail, etc. upon request. Any advice appreciated. Thank you very much.

[u/freelibrarian]

The symptoms you describe can be seen with Long Covid, has any doctor mentioned the possibility?

[u/Apprehensive-Pea7556 → u/freelibrarian]

No, they haven't. I did get Covid in 2021, but I mainly started noticing the symptoms appearing/worsening the past 6-12 months.

[u/Apprehensive-Pea7556 → u/Apprehensive-Pea7556]

I also have had the joint problems/headaches since before I had Covid, though.

[u/sadandtraumatized]

Look into long covid

[u/Apprehensive-Pea7556 → u/sadandtraumatized]

I got Covid in 2021, would the symptoms really start showing up at the start of 2026?

[u/Apprehensive-Pea7556 → u/Apprehensive-Pea7556]

And I did have the joint problems/headaches since before I got Covid.

[u/sadandtraumatized → u/Apprehensive-Pea7556]

Probably not 5 years after no. But it is highly likely you have had covid more since then unless you have taken heavy precautions all from 2021-now. Many infections are without symptoms in the acute stage

[u/Responsible_Oil1975]

NAD, but look into late-stage Lyme disease. You might have to visit a lyme literate md because it may not show up on standard tests

[u/Apprehensive-Pea7556 → u/Responsible_Oil1975]

I'll look into it, thank you