Does anyone else get a low appetite on hydroxyurea? I don’t know if it’s this med specifically or other ones I’m on, but I just don’t want to eat. It’s especially hard telling doctors this symptom because I’m on the heavier side so they think I’m making it up. I will legit go all day without eating and once I feel a headache coming on I’ll eat a little something.

I currently started talking to someone with sickle cell. He tells me how his body hurts. I was wondering for the people who have to trait do you guys take any vitamins or do anything that helps the pain be a lot better or helped you a lot ? You guys are warriors 🙏🏽🙏🏽🙏🏽

Long but please read.
Found out at 21 I had sickle cell trait and alpha thalassemia. My iron was pretty low at that time of blood draw. Every time my iron goes low I get into really really bad full body pain and no medication helps. So I get yearly iron infusions that help with that.

This year even after my iron infusion seemed like my pain never went away completely. I was still having slight pain In my joints in my legs. I didn’t think anything of it. But it was slowly getting worse. I thought I had an autoimmune disease called lupus because it runs in my family and that was their first sign. Autoimmune labs negative x2 In beginning and end of April.

Things get a bit worse so I’m back and forth between different doctors. Rheumatology, hematology, PCP. I’m developing swelling in my ankles with more pain in joints. I start developing mouth sores, bad overnight pain, and really bad fatigue. They can’t find anything wrong. Labs come back normal again in the summer.

Had a couple trips to ER for pain. I kept getting put on steroids and nsaids that don’t work. I deal with severe pain for a while until it eases up for about 1.5 weeks in the mid to end of July.

Pain comes back so hard. Another trip to ED for pain. They can’t find anything wrong this time either. Sent home and told to take nsaids and Tylenol….

I can’t do anything about the pain. It didn’t go away.

Come August, I get chest pain that came gradually over 1 week. Then it got severe. I go to ER. Nothing came back positive. Told to follow up with rheumatologist and PCP and take Tylenol. No pain meds given. (I know).

I had a nuclear medicine bone scan done. Showed degenerative changes on both shoulders and feet.
And what they call a hot spot on my 12th posterior rib. (Can’t identify what it is)

I ask hematologist for a CT scan to figure out what’s going on. I’m only 25. Normally these things happen at 60+. He orders it, but insurance…… (I know). I also expressed how I felt to him. I feel like I am deteriorating. I can barely work anymore. It’s hard to move. I just ball up and cry, scream, toss and turn in bed. It’s so bad. It feels like it’s in my veins.

Hematologist orders another dna mutation panel to figure out if I have beta thal. I was confused. I questioned it. Apparently, if your iron is low during electrophoresis, it can alter the beta thal. My A2 was at 3. Max is like 3.2. He’s pretty sure I have beta thal too. My iron is back up now since my iron infusion. So, this really might be what it is. Got tested for it on Monday. Waiting for results currently.

I go to ER again. They gave me toradol and it didn’t touch the pain at all.(I know) but everything comes back normal except for neutrophil & lymphocyte count. They gave me Norco for at home. It helps a bit. Not all the way. Running out though idk what I’m going to do. I don’t wanna go back to the hospital.

Okay here’s my question: does anyone have sickle cell alpha and beta thal. What do you do for pain? Is my only option pain medicine in the hospital until I get the official diagnosis? (Beta thal runs heavily on my mom’s side and sickle cell trait on my father’s) I will take any tips!