Dercum’s Disease: Let's create a support group

I went to Mayo Clinic in Jacksonville, FL a couple years ago. Before going, I had researched my symptoms for several months. Dercum's Disease was one of the things that repeatedly popped up in my search. When I went to Mayo Clinic, I mentioned it. Most the doctors had never heard of it. The rheumatologist at Mayo, Andy Abril M.D., said, "Dorcum's syndrome is not universally accepted as a discrete disease." The dermatologist there was unfamiliar with DD too. She did a quick online search and then told me that I didn't have it because I wasn't overweight. I felt most of my very expensive visits with the Mayo Clinic were a waste of time and money.
A few month later, I saw a specialist, Karen Herbst, who diagnosed me with Dercum's Disease. She's currently based in California,she isn't associated with Mayo. Since my diagnosis, I still haven't found a local doctor who knows about, or seems willing to learn about, this disease.
Are the doctors at Mayo now familiar with Dercum's Disease? If I went back would they actually be able to help?

Welcome, @ramsey. I'm sorry that your visit to Mayo Clinic in FL did not offer the care and results you were seeking. Many major medical centers do not name Dercum's as a condition, but rather list lipoma and lipedema as conditions treated or may be referred to as adiposis dolorosa.

As I'm sure you know Dercum’s disease is an incredibly rare genetic disease.
See more from The Dercum Society https://dercums.org/dercums-disease/:
It "mutates fat cells, causes excessive weight gain in unusual patterns, can lead to the formation of painful fatty tumors, impairs the immune system, and in certain rare cases, also mutates and alters the function of the nervous system. In short, it is both painful and disfiguring. Unfortunately, despite having been discovered well over a century ago, little research has been conducted and no cure has been found."

I also found this page from The Dercum Society about building your team of specialists to be really helpful https://dercums.org/specialists/

With rare conditions, especially when they may not yet be universally recognized and few doctors have experience with them, the burden is even more on the patient to find specialists to work with. It is challenging to find specialists who have experience with Dercum patients.

You certainly have found one of the best Dercum's specialist in consulting with Dr. Karen Herbst. I often look at the references on the condition page on National Organization for Rare Disorders (NORD)'s website to see who is leading research in a condition. Dr. Herbst is listed in practically all the papers on Dercum's https://rarediseases.org/rare-diseases/dercums-disease/#references

What did you learn about your condition from Dr. Herbst? What treatments help you manage your symptoms?

I am wondering if anyone else suffer severe pain as related to Fibromyalgia, Dercrum/Lypomas disease?

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

Hello @momdukes, I moved your discussion and combined it with an existing discussion titled, "Dercum’s Disease: Let's create a support group" - https://connect.mayoclinic.org/discussion/dercums-disease/. You can meet members @ramsey, @dercum67, and @dalejan who have shared their experiences with Dercum's disease.

There are many discussions related to Fibromyalgia. If there is something in particular you'd like to participate in, I recommend using the Search function to narrow down the results by searching for Fibromyalgia specific terms.

@momdukes, how are you managing your pain currently? Have you found anything that helps?

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.

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.

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.

U can check with dr Ashish banot. New Delhi india ..last time I had 40 removed ..he did an excellent job..uses punch hole technology with min scarring..he doesn’t Specialize in dercums but does a very good job with lipoma removal

So sorry this is happening to you. I also have Dercums, and you’re definitely not crazy. Before doctor's started seeing the huge tumors coming out of my body during surgery, they treated me as if invented the disease myself! One of my doctors wrote I told her my anxiety meds weren’t working when I complained of my pain. Another self proclaimed dercums expert said they had never heard of a person not being able to sit or walk because of Dercums. Same doctor told me I might not get help for 10 years because it’s a condition of rule out. Point being- even if others invalidate or treat you like you’re crazy (just because it’s simpler for them) doesn’t mean you are. Many of us in this forum share many of the same sx: lipomas that press on nerves; aching, shooting, burning, radiating, stabbing pain that is often debilitating; sensations of electricity or other neurological issues; rapid growth of tumors/lipomas; fatigue, and more. Though Dercums has been considered an “orphan” disease, it seems there are more affected people than believed. Though exhausting and despairing at times, we all need to keep fighting for our health and access to treatments.

What has not helped me:
Surgery, though providing immediate relief, for me results in more inflammation and spreading of the remaining lipomas. I’ll only do it now if there is no other option.

What’s helped so far-
- Working on low inflammation diet. Esp low sugar!

- Castor oil: after reading about it, have been using it 2x daily for 3 weeks and at minimum feel a soothing effect. Seems to calm the pain and also itching. I usually apply a while after eating, when pain is elevated.