Yes I’m very interested in further discussion as related to Chronic Pain and Autoimmune disease and Syndromes related.

I was first diagnosed with fibromyalgia, myofacial pain syndrome, and swelling years ago. I started asking other people with fibromyalgia if they had painful lumps and swelling, no one had those symptoms so I kept researching……. I’m a researcher and formulator by trade in the nutritional supplement industry. It’s been a long road of many doctors, MRI’s, ultra sound and alternative practitioners. I found Dr Karen Herbst through my research, I was in so much pain and felt I was getting nowhere. I made an appointment with her in Tucson AZ. She agreed I had Dercums Disease and primary lymphedema. She recommended a blood test for fibromyalgia which came out positive.

Dr Herbst ordered a lympha press suit for me, I use it for two hours a day. It helps with my inflammation which is part of Dercums, helps move fluid around so it doesn’t get struck around my many lipomas. I believe it’s helped me although I’m still in pain 95% of the time but I feel it’s slowed the rapid progression I was in. As I’ve mentioned I take supplements, tramadol and anti inflammatories daily. I watch my diet and when I can, do light exercise.

I called Mayo Clinic in Arizona to find a doctor that would be helpful. There are only 3 doctors with Mayo Clinic that will take someone with Dercums Disease and they are in not in Arizona. After years of dealing with this horrible disease I realize there is little that can be done to have any recovery. Managing the pain is where I’m putting my focus, staying positive (not always easy) and try to laugh everyday.