Panniculitis Support Group

So, what sorts of symptoms do other [people have? My abdomen swells,and I have sore red nodules which sometimes change to open sores. Are these all from the panniculitis? Does anyone have anything that helps? I've found nothing.

You know my abdomen also swells. But I've noticed that It happens when I eat certain foods. Potatos really do it to me. I didnt associate that with my panniculitis. I dont know that it is considered a symptom. I also have painful red bumps on my legs mostly and sometimes on my arms.

So what kind of symptoms do you have you know are attributable to the panniculitis? P.S. I'm thankful someone else has written.

rainslie

You know I have a very rare form of this, it is called cytophagic histiocytic panniculitis. It isnt fun, that much is true. I haven't gone a week without atleast one lesion in over 2 years. There very painful and swolen. Also unsightly. I wonder if the swolen stomach thing is a symptom that is not recognized by doctors yet. I have had a crazy amount of GI work up done on me and they never found anything. I have had both a colonoscopy and a pill cam endoscopy! samples were taken from my colon and nothing! no autoimmune, nothing! I still look 5 months pregnant every time it happens. Who knows!?! Well, atleast the doctors take me seriously now that they have a diagnosis! I have an appointment at the local cancer hospital tomorrow. What about you? whats your deal? I havent expierienced any liver problems or fevers. not yet. The painful cronic bumps are my biggest concern. It looks like I have an abusive husband!

I was wondering if anyone who has been diagnosed with Panniculitis experiences a lot of neck and back pain. My neck pain is almost constant and my Rx pain medicine does not even stop it. It is a clinching squeezing type of pain that I just can't get relief from. The back pain is not as constant, but debilitating. It responds better to pain medicine. Also, I sweat profusely anymore. Is there anyone on corticosteroid therapy that is experiencing this? I have been on steroids since February, but just started sweating so much that I will soak through my clothes. If anyone can tell me what to do about these symptoms, I would really appreciate it.

i was wondering if anyome is experiencing the same or similar sympotoms to mu pannicullitus. Basically I have allot of atrophy. It all started on my back and now i have them on my stomach my arms and my leg. The look like dents but they are not swollen. This has been progressing for the past 6 years. PLEASE HELP. doctors are not helping nor do they know anything that is causing it.

Just about anything I know about panniculitis I learned from the internet. I've been to several different doctors and all they have done is help me manage the sores. Sometimes I have large red sore nodules which often then become open lesions. When they are bad, even clothes hurt me. As I said, my stomach seems to continue to grow, but maybe that's because I am so miserable when the sores are there and don't do much. No one seems to know anything or to be of any help. Right now i just want to live with it as comfortably as possibe since my physicians know nothing better. How did anyone get sent to cancer centers? My doctors seem to ignore that. Does it help? Oh, and I do have indentations where there were bad sores.

ok everyone. there are a variety of things here. my panniculitis (cytophagic histiocytic panniculitis) is only diagnosed 10 times a year and is really the only kind associated with cancer. Some doctors out there consider it a minor form of the cancer that other doctors believe it to be a precursor to. I am sort of a special case and I have been given more information than most of you. In fact it is so rare that I am being written up in a national journal. The article is for doctors to use as a tool so that they dont over look any serious illness seemingly unusual but harmless. Your doctor is probably doing what they can and indentions where leisons existed are normal. I get them. Open sores are also normal. I do not fortunatly. You should be seen by a dermatologist if your not already and pressure them to do a biopsy! Get atleast one so you can rule out what I have. Leave it up to a dermatologist to do all your work up, not a regular physian. they dont know enough to care. I will post the article when it is completed. please encourage your doctor to consult the NIH and send your slides if their is any doubt about your diagnosis. I am here if anyone has questions or wants to talk.

Ellen [img]

Thanks. You know more about this particular disease thatn my doctors seem to.

well, being told that you have something deadly makes you dive in head first to try and get to the bottom. My mom is also a PA and has helped the course of my treatment. I'm lucky. But please please go see a dermatologist and have a biopsy!