Table 2 Symptoms and signs of acromegaly spontaneously reported

Joint pain

I’ve put on X amount of weight and have grown excessively and quickly, how that strain would…it’d be like stretching something and it doesn’t really go back to the way it was, it just kind of is…disfigured. And I know, obviously, I’m not that disfigured, but, you know, that pain is there from the act of being metaphorically stretched. (ID 14)

For my hips and my joints, I’m attributing it to the acromegaly. The thinning of the cartilage in between my joints because of the thickening on the ends of my joints of my bones, the bones are spurs wearing down the cartilage in between. The joint pain is severe. (ID 1)

The things I noticed is definitely joint pain. Like usually it gets worse. Like my lower back, my knees will ache. I’m actually, I’m starting to have problems with my one hip…is starting to, when I stand up and I move, it’s starting to get sore. So I don’t know what that’s all about, but it all kind of comes and goes. (ID 2)

Fatigue

The fatigue thing is definitely something that bothers me, and it’s some days, it’s worse than the others. I tell my wife sometimes it’s, it’s like I get up, I help my wife get my kids off to school, and there are some days it’s very real. Like it’s not a, ‘Oh, I had, I didn’t sleep good last night.‘ It’s a total lack of energy. (ID 2)

It’s [fatigue] just so chronic, it’s every day. It’s just a question of degrees, really. (ID 3)

…you get real tired. The fatigue is there. You don’t have hardly any…and if it’s warm outside, it seems like in an hour you’re just drained because I try to walk to my mailbox up there for a form of exercise, which it is quite a ways. You know, it’s probably quarter mile up the hill. But by the time I get back, I pretty much need a nap. [laughter] I don’t have any energy anymore. (ID 4)

Sign of swelling

…when they [hands] swell really bad, my hand hurts, my knuckles hurt. And then, not being able to put on my wedding band, things like that, it’s frustrating. (ID 11)

It [swelling] hurts. I can’t even walk like around in the store. I have to sit, you know, in the electric cart. (ID 8)

My hands and feet start to swell to the point that, my worse ones, that I have to wear flip-flops because my tennis shoes don’t fit. My rings have to come off. Uh, it’s hard to close my hands or grip something tightly because of the pain the swelling has caused in my fingers. (ID 14)

Symptoms of headaches

The pain, you learn, you know, you learn to deal with it. It’s the new normal and most, most days I can deal with it without medication. I think the hardest part is the mental part. (ID 5)

I was having severe headaches, and the headaches had gotten worse and worse over a few months, and it started affecting my vision. Like what…so it ended up getting to a point where I think I was in so much pain, I was in agony, and I couldn’t take it anymore. (ID 2)

We get these things we call ‘ice cream headaches’ sometimes, and it’s just like…it kind of just feels like an ice cream headache… (ID 10)

Mood swings

I’m much more quickly to anger. I don’t handle stress as well. I’m very overwhelmed during that time, and it just steadily gets worse, whether or not it’s from pain or from the changes with my hormone levels, I don’t know, but it’s just a thing that happens. (ID 14)

Like, I would have really bad mood swings and become really over dramatic [inaudible] emotional. (ID 8)

My moods…when I notice my moods are changing or somethings…I can tell that I’m getting off, that means that my growth hormone is usually going up. (ID 15)