hypertrophic pulmonary osteoarthropy(sp)

[Guest]

Has anyone on the boards ever had this condition? I have it, and the pain is severe. I do not have swellling or the arthritis feature, but I do have the periostitis/neurological pain--which is a burning pain that is now nearly covering my body. It is bearable as long as I am awake, but as soon as I try to sleep, it awakens me. The Dr said there is nothing he can give me for it, but treatment (if the tumor shrinks) may relieve the pain. Is this true? I maybe sleep an hour or two a day, if I am lucky. I am not sure how long I can handle this.

So far all i have been given for the pain is Tylenol with Coedine and now Ultram. Pls does anyone know what can help? I am getting desparate.

[Alisa]

Yes, I had it. That was one of the symptoms (after complaining to my general doctor for a year about the pain!) that led him to order a chest xray. I had severe pain in my knees, consistently getting worse over the course of about a year. My doctor kept telling me it was arthritis and had me on ipuprofen. Somehow I knew it wasn't arthritis, and after a year he had me get complete xrays, including a chest xray, which showed a lung tumor. My thoracic surgeon told me the pain was caused by a hormone secreted by the lung tumor and only 10% of lung patients get that symptom. As soon as my tumor was surgically removed, the pain was gone. It has not been back.

[Alisa]

I forgot to mention - celebrex may help and celebrex is a Cox-2 inhibitor, which has anti-cancer properties. Celebrex is under a lot of studies and trials for cancer now, so not only will it help with the pain, but may help stop the cancer also.

[Fay A.]

What you describes sounds like the neuropathic pain I've experienced. I had some relief from the true neuropathic pain when I was given the drug Neurontin. It's a seizure medication, but it is also used to treat Neuropathy. Ask for a referral to a pain management specialist.

[Alisa]

I think I misread. Mine wasn't the burning pain. Mine was knee bone pain. It was called Pulminary Osteoarthritis, something like that. In any event, it disappeared when they removed my middle lobe with the tumor.