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

Hi @vowelmistress, lipomas are a symptom of Dercum’s disease, but not the cause. “ Doctors aren’t sure what causes Dercum’s disease. In most cases, there doesn’t seem to be an underlying cause.

Some researchers think it may by an autoimmune disorder, which is a condition that causes your immune system to mistakenly attack healthy tissue. Others believe it’s a metabolic problem related to not being able to properly break down fat.” https://www.healthline.com/health/dercums-disease#causes

@pamelars60 and @hippygrandma both have mentioned that they have Dercum’s disease along with several other conditions, including fibromyalgia, and may have some experiences to share.

Vowelmistress, have you considered inquiring at Mayo Clinic Health System, Eau Claire to find a specialist in Dercum’s disease?
https://www.mayoclinichealthsystem.org/locations/eau-claire

Thanks. Yes I know lipomas are not the cause of Decums, I was asking if the lipomas could be the cause of my joint pain ?

I want to know if anyone else suffers from lipoma pain? Do you know if Mayo Clinic can help?

Hello Jill, and welcome to Mayo Connect - we are people living with a variety of conditions.

Lipomas themselves are usually not painful, but they can press on nerves or muscles and cause pain. If you want to learn more about lipomas, you can read here: https://www.mayoclinic.org/diseases-conditions/lipoma/symptoms-causes/syc-20374470

Have you been diagnosed with each of the conditions you have listed above? Are you under treatment by a doctor?

@colleenyoung I was wondering if there is a way for people with Dercum's Disease, FML, Adiposis Dolorosa and Lipomas to have it's own support group? The disease has not been proven to be an autoimmune disorder or any other disorder. I don't think it should be categorized as is. Classifying it under autoimmune makes it difficult to find help when searching the site. I believe that the people (I'm one) who suffer with the rare disorder of Dercum's or Lipomas alone should have a support group for themselves. It would make it simple for us to find the group and easier to reach out to each other. I also think that the Mayo Clinic will benefit and find that there are many more people with these conditions. which can in turn will let them see and understand how critical research is needed in this field of medicine. Thank you for any help you may provide with my request.

Hello @iamrare2, Welcome to Connect. I thought I share a few links in case you haven't already seen them and hopefully provide more information for members with this rare disorder.

-- The Dercum Society - Helping make sense of Dercum's Disease: https://dercums.org/
-- Adiposis dolorosa: https://rarediseases.info.nih.gov/diseases/5750/adiposis-dolorosa
-- Dercum’s disease (adiposis dolorosa): a review of clinical presentation and management:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6911249/.

Welcome @iamrare2, I love the username. As you know Dercum's disease, familial multiple lipomatosis (FML), adiposis dolorosa or lipomas are rare conditions. Thank you for pointing out that this discussion was misplaced under the Autoimmune Diseases support group. It has been moved to the Chronic Pain support group.

Let's work together in this discussion thread to build enough activity to create a Dercum's disease-specific group. I'll get us started by tagging fellow members @vowelmistress @pamelars60 @hippygrandma @jillo65 @mariettepr @floann, who have mentioned living with Dercum's, familial multiple lipomatosis (FML), adiposis dolorosa or lipoma.

@iamrare2, can you kick off the discussion? How long have you been living with Dercum's? How are you managing with daily life and the symptoms you deal with? What tip would you share with someone new to Dercum's?

Hello — I’m all in for a Dercum’s group. It’s so difficult to find anyone who has even heard of it so I’d be interested in other’s experiences and recommendations. I was diagnosed with Dercum’s in 2017. It seems like there can be a collection of symptoms/diagnoses that overlap. They may include Ehlers-Danlos Syndrome (mine is the Vascular type), Mast Cell Activation Syndrome (MCAS), allergies, Dysautonomia, thyroid issues, fibromyalgia symptoms, lymphedema, positive autoimmune testing — and frustration! So little is known, so few professionals are aware or treating it.
Do any of you have these issues in common? What other issues do you think we might share?
Does anyone know any knowledgeable docs in Wi, MN, or IL, IA - I’m in Madison (hence my MadvZebra name).
I’ve had 3 really bothersome lipomas removed - 2 were angiolipomas. I do tend to get “flares” of intensified symptoms. Anyhow - I feel for all of you.

@colleenyoung Thank you for your response. I think that your question of how long have I been living with Dercum's? is a good question. Honestly I can't answer that until I answer a more important question of how long did it take me to get the right diagnosis?

I was 17yrs old when I found the first lump. Through out my 20's I noticed more lumps began appearing in my arms and upper legs and becoming painful. At 33yrs old I showed them to my primary doctor and who told me that they were lipomas (fatty tumors) and that they were nothing to worry about and that they shouldn't cause pain.
After many years complaining about the pain I was in I was diagnosed with Fibromyalgia. In 2004 and with a new doctor and with more lipomas my new doctor agreed that I needed to see a surgeon. My first surgery I had 12 lipomas removed from my lower arm. The fatty tumors removed help ease some of the pain around the area. My 2nd surgery 28 were removed and it was discovered that I had 2 different types of lipomas. My 3rd surgical removal was 42.

In 2008 I realized I needed to find out what exactly was going on with my body myself. I started researching lipomas and found much information that I gave to my doctor. He was not in agreement with what I found,he told that nothing was wrong with having multiple fatty tumors. I felt so much anger that he wouldn't listen to me or read the information. I left the office crying never to see him again.

Once again I had to find a new doctor. After meeting my new doctor he was the answer to my prayers. He was interested in my case, he listened and he read the info I had researched. He referred me to different doctors to rule anything out. He sent me to a dermatologist at our local University Hospital which also is a medical research facility. It was there that I got the diagnosis of Dercum's Disease and familial multiple lipomatosis (FML). I finally had answers about what was wrong with me but not how to treat it.

I have multiple painful lipomas in my arms, legs, thighs, groin, hips, knees, shoulders, upper and lower back, my stomach and breast. I suffer chronic pain,fatigue, muscle weakness, joint pain and other symptoms. I have had several surgeries with 167 removed. I have 3 different types. It runs in my family. My mother has them as well as 3 brothers,a niece and my son. No one else in the family has Dercum's or as many as I have. Some have had to have them removed.

Colleen, as you can tell by my story I have lived with Dercum's years before my diagnosis. Getting a diagnosis is not easy and treatment is even harder. With the mindset of primary physicians regarding lipomas as simply fatty tumors, nothing to worry about and/or the belief that they don't cause pain can hinder the fact that research is needed. Lipomas, DD, FML, will
continue to be rare until primary doctors start to report patients who suffer from this to CDC, Nord or others who need to know about us. We are rare but there are many more out there!

@johnbishop Hi John, I am aware of those sites. Thank you.