The Launceston woman has also gained six kilograms within a fortnight, and she is powerless to do anything about it.

Mrs West has Dercum's disease, a rare chronic condition characterised by painful fatty lumps that appear all over the body, as well as sudden weight loss and gain, weakness and fatigue, and mental conditions including depression and dementia.

But she said she had been bolstered by a move to Tasmania more than a year ago, which had seen her find people who understood her condition.

``I've come here to Launceston and found three doctors who actually know what it is and treat you respectfully, and that is huge - you don't find that often,'' she said.

Mrs West said she was also shocked after the move to find there was another sufferer in the state - Donna Crouch, of Deloraine.

``When we met, we just hugged each other and cried, because most of the time you feel quite freaky,'' Mrs West said.

The women said they had both dealt dealt with several cancer scares for decades before they found doctors who recognised their condition.

``When I first saw one of my lumps removed, the doctor didn't know what it was, and I said, `it's an alien','' Mrs West said.

``It was like something Sigourney Weaver gave birth to - it was really ugly and strange, and it had tentacle-like things.

``When I did get a diagnosis for it, it was like validation. I cried for days and days and days.''

But Ms Crouch said day-to-day life was still extremely difficult, given there was no known cure for the disease.

``I had to give up my job in 2007, because I could not do it. It was four hours each day over the weekend, and I would spend the rest of the week recuperating so I could do it again,'' Ms Crouch said.

``And in the end I'd go there and just cry because I was in so much pain.

``I felt like my self-worth had been taken away.''

Mrs West said they wanted to use their experiences to raise awareness, so others didn't have to wait as long as they did for diagnosis.

She said they also wanted to start a support group with any other sufferers in Tasmania.

To contact Mrs West and Ms Crouch, email jstephens@examiner. com.au.