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Dercum’s Disease: Let's create a support group
Chronic Pain | Last Active: 3 days ago | Replies (119)Comment receiving replies
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.
Replies to "I was first diagnosed with fibromyalgia, myofacial pain syndrome, and swelling years ago. I started asking..."
Thank you for sharing. I’m sorry for what you go through and you are a Dercums Disease warrior. I’m struggling as well. Do you mind sharing which 3 doctors at which Mayo take a patient? I wish you life with laughter and love.
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My research has led me into the same area of concern. My story is mine and like what I gather from yours, ours relate very much so where pain is concerned. I was diagnosed with Fibromyalgia year 2001 after an injury on the job, forced my retirement in 2005, after 22 years. I worked US Department of Defense/Marine Recruiting & Air Force. My job was stressful but doesn’t compare to My suffering of today, I am totally disabled and have a vast number of issues that have compromised my overall well being. I have been unsuccessful in getting the help through traditional health professionals. Truly, aside from Prednisone, Gabapentin, Lyrica, Cymbalta etc, Anti Depressants, & last but not least the very controversial Opioids, they now are clear lead to other catastrophic events, they admit not knowing what else can be done, for patients like myself. Let’s just say I have tried them all, under doctors direction. Today, I’m in the worst pain imaginable. So back to Dercrum’s & Lympomas. I realized after paying very close attention to my body, the pain in my thighs, hips, buttocks, arms was different in the intensity and severity, over time. I feel these solid felt nodules under the surface of my skin and when gently applying pressure, the pain is staggering. Self massages bring me to tears every time. So anyone else’s touch sends what feel like electricity through my entire body. I can’t get the treating physicians to understand, that I’m being physically and emotionally tormented. I don’t have a definitive diagnosis but symptomatically I fit the paradigm. I am so sorry for everyone who suffer from this horrid disease. However, knowing that someone out there, has a true understanding, helps me to know that I’m not crazy, in pain, overweight, depressed and miserable all by myself.