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

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

@iamrare2, I noticed that you wished to post links to helpful websites with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam. Please allow me to post them for you.
https://www.futuremedicine.com/doi/10.2217/frd-2020-0004 https://www.genome.gov/Genetic-Disorders/Dercum-Disease https://www.fatdisorders.org/ http://www.lipomadoc.org/dercums-disease.html

The pain could be from lymphedema, which is fairly common among Dercum’s patients. Karen Herbst (doc in AZ) has some good research on the topic.
I’m also interested in finding a WI or MN dr who is is well-versed in appropriate liposuction techniques for Dercum’s patients. 💕

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 can't help with finding a doctor other than Dr. Herbst.
For me liposuction didn't work for treating my lipomas. The procedure doesn't always remove the whole tumor. General surgery works better for me as it removes the tumors more thoroughly. I would much rather have surgical scars than the pain I have to deal with. I often have pain in an area where no tumor can be felt and that has to do with adipose tissue.

@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!

Hi, @iamrare2 - and others here. UK sufferer, covered in so many painful lumps! For many years I ignored them as they grew. Only when they began to grow into larger lumps, and a number of them became painful, did I reach out to family, who acknowledged a family history, while still not knowing what they were experiencing. Doctor after doctor fobbed me off, or at most admitted they had no idea what I was suffering from. In the past couple of years I've finally managed to get a DD diagnosis, but no treatment yet. I have to wait on the GP to contact a specialist to consider possible surgery. I have previously been told that only 1 or 2 lumps at a time can be removed, but that would take a while as I have around a hundred visible lumps. They're also now making their way in between certain muscles, making any exertion or exercise painful, so all I can do is hope that some doctor somewhere decides I'm worth operating on. I can't afford private treatment in the UK, but I've heard a lot of good things about India as a destination for surgery which doesn't cost a lumpy arm or a leg! Anybody have any info regarding India-based surgeons who know their way around DD?

It is truly unfortunate that there aren’t more doctors familiar with methods that would work for Dercum’s. The Herbstaffiliated articles (including “Standards of Care” could inform willing /curious practitioners — our favorite kind— who may be willing to help.I’ve also had 3 VERY uncomfortable abdominal lipomas removed (actually 2 angiolipomas - is this a vEDS thing?).
Dercum’s definitely does cause generalized inflammation and many suffer from Mast Cell Activation Syndrome so I’m continually on a variety of MCAS inhibitors (Wikipedia lays out the different classes, Drs. Maitland and Afrin both have good info on MCAS).
Following a lower inflammation diet is recommended as well.
This. Definitely. ISN’T. Easy. ❤️‍🩹