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

Hi @pianist3, I'm tagging @vowelmistress @mandalakoala @ldavis1111 @carol1024 @jlminsac @mkmenge @iamrare2 @madvzebra @dercum67 @sll108 @sll108 @sherylshery and others to join me in welcoming you to the Dercum's support group.

Would you mind sharing your story and journey with Dercum's? How were you diagnosed? How are you doing now?

I haven't been diagnosed with that.

Hi, everyone and Colleen! I haven’t been technically diagnosed yet, however, I feel that I have all of the symptoms of Dercum’s. I’ve had lipomas and skin issues my whole life. At 18, I had an emergency appendectomy…not sure if that’s related, but looking back things seem to add up more. I have 2 amazing boys (men now, ha) and my first was born with a placental abruption…not sure if that’s related. I’ve been super healthy my whole adult life…although, I use to eat way more processed foods, sugar, treats before I realized I needed to lose weight and the fatigue and lipomas started to increase. My first real fatigue was Jan. Of 2020, although, now looking back it might have been Covid? Anyway, fast forward to Jan of 2021, and I was teaching elementary music and at lunchtime I just was fatigued I couldn’t teach anymore that day. And I had to resign from my full-time teaching job. (I’ve been subbing some since then.). Anyway, I also have been in menopause since 2020 and that doesn’t help anything. Most recently I have recovered from a staph infection due to mold exposure and then, this past 6 months, I think this disease has really taken off. It’s really affecting my stomach and motility as well. I had H Pylori, but I think it’s going away. I’ve been real strict on diet, eating smaller meals, eating super healthy, low FODMAP, and taking Motility Pro supplement, which is helping. It is also affecting my liver (as I eat super healthy now and no alcohol)…and I have NAFL already…I’m trying to reverse that with diet, exercise and castor oil packs (my grandma died of liver cancer…so, I’m super on top of it!). Anyway, I have lots and lots of small lipomas mostly in my abdominal area and down the sides of my torso, some in my legs and in my breasts (they are dense breasts…just had a clear 3D mammogram…yay for that!). I’m also following up and doing a pelvis scan to rule out my endometrial lining not thickening more. I’m also a little dizzy at times…as I think it’s affecting my brain a little…yikes! My blood numbers are all over the place…really out of whack for how I eat and live, I love to exercise…but, my cardio ability is compromised now…so, I want help with that too…I really don’t want to be on oxygen. I really want to get on top of all of this and stop it from progressing as well as feel better with what I already have. I’m trying to stay hopeful and helpful to others…that brings me such joy! I have 2 amazing sons and 2 amazing step-sons, but they are all busy with their families…and my husband is dealing with a a lot of medical issues and addiction as well…so, having this support group is amazing!! I’m so, so grateful!! I’m also scheduled to meet with Dr. Herbst a renowned doctor in this field in Tucson, AZ this Sept…thank you God!! I’m hoping to get the diagnosis in writing and coded for my social security disability benefits. I had to retire back in Jan. Of 2021, but I’m only 56 and still wanted to teach more….but, fortunately I had a great career and taught for 27 years…elementary music, choir and piano! I miss it…but, not the stress! :). I love to play piano and sometimes I volunteer at Mayo…maybe we could all meet one day there and I’ll play for you all and we could have lunch! I so hope you all are feeling wonderful today! I’m trying to remain positive and hopeful…but, I have to admit, tears fall easily (especially for a menopausal women.). Maybe we could also share what is helping us all out? I am taking fish oil, sunflower lecithin, Motility Pro (really helps), Vit D, multi, B-12 and other supplements…a liver tincture helps some too. I also found a Boiron pain stick and ginger oil with arnica to help the pain of the lipomas. Ok, wow…I guess this got long! Thanks so, so much!! I’m sending you all healing blessings and hang in there!! Hugs!! Mia ;)🌸💕

Many in my family have lipomas. Mother, her sisters, her mother and aunts. This is NOT lymphedema. Very painful, burning, constant, poor sleep due to pain, difficulty walking, standing, using hands. It is hard to find a doctor who recognizes what is going on my body. Diagnosed by have moved across USA and am having difficulty find a doctor who has ever heard of Dercum’s Disease.

Hi @singingjade, as you mentioned, I moved you 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/
I did this so you could meet the other members talking about decrum's disease. Members like @vowelmistress @mandalakoala @ldavis1111 @jlminsac @mkmenge @iamrare2 @madvzebra @dercum67 @sll108 @sll108 @sherylshery have all shared their stories.

@singingjade, how are you managing the pain and lack of sleep currently?

There is some confusion. I do not have this condition.

I’ve had Dercums for over 20 years. I was diagnosed with it about 15 years ago. It is progressively worst and I have also been diagnosed with primary lymphedema and fibromyalgia. What I know is that it’s painful, constant and confusing. I seem to have triggers that can make it so painful and debilitating, they are mainly food and chemicals that set it off. MSG, nitrates, any food coloring additives can set off a major flare up for weeks. I’m never not in pain and it moves around. I have so many lipomas that surgery wouldn’t be helpful at his time, they are located in all the usual places, thighs, lower and upper legs, stomach, back, buttocks, arms, rib cage, shoulders and now my head.

I have a wonderful husband that uses a massager on me daily trying to break up the lumps before they get worst, I feel this is what helps me stay as active as I can be. I take supplements daily which I’ve found through trail and error and much research that have helped. The supplements are coQ10-400mg daily, vitamin D 2000 iu daily, omega 3 1000 daily, hyaluronic acid 50 mg 2X a day, serrapeptase 40,000 mcg 2 times a day. I take a prescription anti inflammatory daily and an allerflex two times a day. I eat a very clean diet and do my best to stay positive.

This disease can lay you flat for days and when it’s in my ribs it’s bad, I have learned it’s best to lay flat a couple times throughout the day so I don’t get too inflamed. I’m fortunate I’m retired so I can rest when needed, I often don’t sleep well and wake up in the middle of the night with pain. I haven’t given up hope, I continue to research possible discoveries that can help learn more about what may have triggered it. I have my theories and stay away from any type of cortisone shots.

In writing this it’s my hope that others can find some relief and maintain a positive attitude and hope that we can find ways to help each other live with Dercums.

I have not been formally diagnosed but from everything I dug up and researched, I suspect Dercums Disease. I cannot find a Doctor who will take me seriously yet they have removed 2 lipomas from my body. There are so many more. Alot of them show up in CT scans and MRIs and in my thyroid etc...they call them nodules. My question is...are all of these "nodules" suppose to burn and electrocute me all day and night? It sure is no quality of life worth living...Dear GOD, help me, I cannot take it anymore!!!

Hello @jillo65, I see from your previous posts you were thinking about seeking help at Mayo Clinic for your pain (suspected Dercum's Disease). These two sites may offer more information on how to try and get help for the pain if you suspect Dercum's.
--- Dercum Society: https://dercums.org/
--- Dercum’s disease (adiposis dolorosa): a review of clinical presentation and management:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6911249/.
I know you are in a lot of pain and it's been difficult for you to deal with it for so long. Have you considered seeking help at a teaching hospital or major health facility? Have you tried to get an appointment with Mayo Clinic? Here is the link to contact Mayo Clinic to request an appointment - http://mayocl.in/1mtmR63.

Hello @jillo65, sorry to hear about the pain you are experiencing. I did move your discussion to where you had met other members discussing Decrum's in the the Decrum's Disease: Let's create a support group, https://connect.mayoclinic.org/discussion/dercums-disease/ discussion.

@johnbishop asks a good question, have you sought a second opinion from Mayo Clinic like you were considering in previous posts?