AndyStreams
Well-known member
Hi Shannon--
Thank you much for the reply, I really didn't know that about panniculitis. You're right; I could totally be prematurely jumping to conclusions on this.
I'll respond to your post in order. I will definitely look into the lupus blood test, though from what I had read I didn't think diagnosis was that easy. What I had read stated that lupus often went years without a diagnosis because it mimicked so many other illnesses, and the actual diagnosis was very difficult. It said the only tell tale sign of lupus was the butterfly rash across the face, which only shows up in about 1/3rd of the cases. I will definitely ask the doctor about this and see what they think.
As far as panniculitis goes, what you are describing does NOT sound like what I have. It's not icky or oozing or infected or stinky or any of those other colorful adjectives! It's just like hundreds of little bumps under my skin, ranging from the size of a bb to a pea, most notably under my forearms, in my chest, in my legs and in my abdomen. You can't see it, but when you press into the flesh, you can clearly feel them.
I didn't always have them like this, but I have had much of them for years. After I finished treatment when I was 12, I used to poke around my neck and underarms looking for any signs of the cancer coming back. This was definitely the beginnings of my health anxiety taking root. Because of the hodgkins and the radiation, I do have some permanently puffy lymph nodes; but I learned that they were nothing to worry about. The first time I remember feeling this fibrous tissue was at least 4 years ago, and like you, I thought they were lymph nodes as well. But my doctor told me that it was impossible to feel the lymph nodes in the areas I had the lumps and ensured me that it was fibrous tissue and nothing to worry about. They said women often have it noticeably in their breasts, so you have nothing to worry about!
It got worse about 2 years ago, then again about 6 months ago. And now it is getting even worse again. It’s showing up in places it never was before and I had no idea what it was or what to call it. I actually didn't even really worry about it that much, I figured it was scar tissue from the chemo or radiation showing up years later; but then all these other symptoms started and it made me wonder if something more insidious was going on. My oncologist checked it out and wants me to see a dermatologist and possibly a rheumatologist.
I read that panniculitus was “a group of diseases whose hallmark is inflammation of subcutaneous fatty and muscle tissue,” which sounds like precisely what I have. However, the cutaneous nodules that appear above the skin have never showed up. That is promising!
I know what you mean by “looking for a problem” and not knowing whether or not something is a new phenomenon or something you’ve had all your life and just never noticed. I recently realized that my tongue points to the right when I stick it out. That made me worry bout ol’ als, but I don’t know if that’s something recent. Sticking out my tongue for a detailed analysis was not something I did before all this!
Thank you much for the reply, I really didn't know that about panniculitis. You're right; I could totally be prematurely jumping to conclusions on this.
I'll respond to your post in order. I will definitely look into the lupus blood test, though from what I had read I didn't think diagnosis was that easy. What I had read stated that lupus often went years without a diagnosis because it mimicked so many other illnesses, and the actual diagnosis was very difficult. It said the only tell tale sign of lupus was the butterfly rash across the face, which only shows up in about 1/3rd of the cases. I will definitely ask the doctor about this and see what they think.
As far as panniculitis goes, what you are describing does NOT sound like what I have. It's not icky or oozing or infected or stinky or any of those other colorful adjectives! It's just like hundreds of little bumps under my skin, ranging from the size of a bb to a pea, most notably under my forearms, in my chest, in my legs and in my abdomen. You can't see it, but when you press into the flesh, you can clearly feel them.
I didn't always have them like this, but I have had much of them for years. After I finished treatment when I was 12, I used to poke around my neck and underarms looking for any signs of the cancer coming back. This was definitely the beginnings of my health anxiety taking root. Because of the hodgkins and the radiation, I do have some permanently puffy lymph nodes; but I learned that they were nothing to worry about. The first time I remember feeling this fibrous tissue was at least 4 years ago, and like you, I thought they were lymph nodes as well. But my doctor told me that it was impossible to feel the lymph nodes in the areas I had the lumps and ensured me that it was fibrous tissue and nothing to worry about. They said women often have it noticeably in their breasts, so you have nothing to worry about!
It got worse about 2 years ago, then again about 6 months ago. And now it is getting even worse again. It’s showing up in places it never was before and I had no idea what it was or what to call it. I actually didn't even really worry about it that much, I figured it was scar tissue from the chemo or radiation showing up years later; but then all these other symptoms started and it made me wonder if something more insidious was going on. My oncologist checked it out and wants me to see a dermatologist and possibly a rheumatologist.
I read that panniculitus was “a group of diseases whose hallmark is inflammation of subcutaneous fatty and muscle tissue,” which sounds like precisely what I have. However, the cutaneous nodules that appear above the skin have never showed up. That is promising!
I know what you mean by “looking for a problem” and not knowing whether or not something is a new phenomenon or something you’ve had all your life and just never noticed. I recently realized that my tongue points to the right when I stick it out. That made me worry bout ol’ als, but I don’t know if that’s something recent. Sticking out my tongue for a detailed analysis was not something I did before all this!