Has anyone got Chondrodermatitis nodularis?

[Deleted User]

Hi,
I know this is a bit off topic here but I thought I would ask anyway. I've got a painful nodule in the cartilage of my right ear. It's called chondrodermatitis nodularis and apparently it's associated with autoimmune disorders. That is why I was wondering whether anyone else has it? I had it treated many times and eventually removed but as I discovered after having my stitches out, the op left me with a big 'dip' in my inner cartilage. So instead of getting rid of the problem now I have two sore points in my ear: at the top and bottom of the incision. The condition is caused apparently by sleeping on one side and once you have it, it is very painful to sleep on that side (actually it's impossible) and with my RA I have problems being comfortable at night anyway, so this is very inconvenient and another problem on my long list... After it was removed I was never seen by the dermatologist again for a check up because if I was I would have complained. I'm going to see my GP tomorrow and I hope I will get referral to dermatology again, because in the past I found it quite difficult as on one occasion I was told that if it's not cancer I won't get a referral (!). And once you get to the dermatologist (after months of waiting and struggling) it is no better: once I was told to cut a hole in a sponge, fix it to my ear and get on with it. I opted for the surgery that was given to me with a great reluctance. But just as I have mentioned, the surgery left me with 2 sore lumps and in the meantime I am forced to sleep with a SPONGE on my ear. The doctors treat it like it's nothing but it's not nothing to me. I can't sleep on that side comfortably, I can't use the phone on that side, and I look like an idiot going to sleep. Apart from the sponge, I wear splints on both my hands and I don't think this is an attractive look for someone in their early thirties. I too want to feel attractive and look good for my husband. I don't want the RA to defeat me... It really brings me down.
Sorry for the long post. Just needed to tell someone about it.

stickywicket

I think I owe you my thanks, nesia. I’ve learnt two new Latin words today and also discovered what the lumpy bits on my ears are. At least I think I have. I looked up the term and it sounds right except mine aren’t scaley or crusty – just knobbly like the rest of me.

I once took them to the GP and she was a bit flummoxed by them although, come to think of it, they are a bit similar to rheumatic nodules anywhere else. It had never occurred to me to see a dermatologist and get them removed. There is far too little of the original me left as it is.

Luckily, mine aren’t too big. I do find they wax and wane and, if I’m careful how I lay my head on my shaped memory foam pillow, they’re not too bad usually. I’m sorry if yours are very painful. I've no solution other than careful use of the pillow.

[Deleted User]

Glad I could help, Sticky:). I'm not surprised GP didn't help you as they have no idea what that is. And they don't have to be scaly at all. It only happens when you rub that area on your pillow or something and then your skin comes off. As your ones aren't too bad they didn't peel. If they don't bother you too much like you say I would leave them as they tend to come back anyway. I had mine burned, frozen and finally cut out but the doctor didn't do a great job and instead of one in the middle now I have 2 on the sides. Careful use of the pillow doesn't apply to me unfortunately as my nodules are very sensitive and if they touch anything they start hurting.
Anyway, it's good to hear I'm not the only one with this condition, though it's not so good that we have it at all.
I just wish I didn't have to deal with this rubbish. RA is enough trouble for one person and things just seem to be piling up.