1. < Chronic Pain
Profile picture for vowelmistress

Dercum’s Disease: Looking to connect with others

Posted by vowelmistress @vowelmistress, Jun 13, 2022

I am having pain in my feet and ankles. I do have dercum’s and I am wondering if the lipomas in my legs can cause this? Also are there any surgeons in the Eau Claire area who specialize in liposuction for dercum’s patients?

Interested in more discussions like this? Go to the Chronic Pain Support Group.

Profile picture for dmmeyers62
dmmeyers62 | @dmmeyers62 | Dec 25, 2024
In reply to @colleenyoung "Hi @vowelmistress, lipomas are a symptom of Dercum’s disease, but not the cause. “ Doctors aren’t..." + (show)
Profile picture for Colleen Young, Connect Director @colleenyoung

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

Jump to this post

I have celiac disease and dh rash Also other autommune diseases and just had lipnoma taken out of my knee. It was almost 15cm . Dr very worried about cancer but wasn't He told me watch all the other lumps I am getting. Also celiac is not undercontrol my numbers were off the chart and instead of going down after being gluten-free for almost 4 years it went higher. Question I have if this could be causing this.

REPLY
Profile picture for etboston
etboston | @etboston | Jan 16 5:58pm
In reply to @c3p0 "I was all set for this trial. (CBL-514) Had my paperwork in and e signed and..." + (show)
Profile picture for c3p0 @c3p0

I was all set for this trial. (CBL-514) Had my paperwork in and e signed and was then told I was too old. That took all the wind out of my sails. I am starting all over again with another plan of attack but there is little else I can do. I wish you luck in your journey. This is such a frustrating disease due to the fact it is so unheard of and nobody I've seen seems to worry about it.

Jump to this post

I was diagnosed with DD last year. The dermatologist with Kaiser recommended Ozempic. That’s what I have been taking for the last 2 months. I am 54.

REPLY
1 reply
Profile picture for c3p0
c3p0 | @c3p0 | Jan 17 11:15am
In reply to @etboston "I was diagnosed with DD last year. The dermatologist with Kaiser recommended Ozempic. That’s what I..." + (show)
Profile picture for etboston @etboston

I was diagnosed with DD last year. The dermatologist with Kaiser recommended Ozempic. That’s what I have been taking for the last 2 months. I am 54.

Jump to this post

Has it helped your symptoms? Also is it doing anything to shrink the lipomas?

REPLY
2 replies
Profile picture for c3p0
c3p0 | @c3p0 | Jan 17 11:17am
In reply to @c3p0 "Has it helped your symptoms? Also is it doing anything to shrink the lipomas?" + (show)
Profile picture for c3p0 @c3p0

Has it helped your symptoms? Also is it doing anything to shrink the lipomas?

Jump to this post

Is that just for weight loss?

REPLY
1 reply
Profile picture for etboston
etboston | @etboston | Jan 17 11:23am
In reply to @c3p0 "Has it helped your symptoms? Also is it doing anything to shrink the lipomas?" + (show)
Profile picture for c3p0 @c3p0

Has it helped your symptoms? Also is it doing anything to shrink the lipomas?

Jump to this post

Yes it has helped to shrink them.

REPLY
1 reply
Profile picture for etboston
etboston | @etboston | Jan 17 11:26am
In reply to @etboston "Yes it has helped to shrink them." + (show)
Profile picture for etboston @etboston

Yes it has helped to shrink them.

Jump to this post

I still have joint and muscle pain, along with other symptoms, but the large lipomas on my thighs did shrink.

REPLY
Profile picture for c3p0
c3p0 | @c3p0 | Jan 17 11:38am

Thank you for the quick reply. I'll mention it to my doctors. I wish you the best of luck in your struggles.

REPLY
1 reply
Profile picture for etboston
etboston | @etboston | Jan 18 10:59am
In reply to @c3p0 "Is that just for weight loss?" + (show)
Profile picture for c3p0 @c3p0

Is that just for weight loss?

Jump to this post

It was prescribed for weight loss, but my lipomas on my legs have shrunk.

REPLY
Profile picture for fncz
fncz | @fncz | Jan 19 1:02pm
In reply to @c3p0 "Hi Colleen, I have contacted Mayo clinic for help with Dercum's but they told me it..." + (show)
Profile picture for c3p0 @c3p0

Hi Colleen,
I have contacted Mayo clinic for help with Dercum's but they told me it is red target which means they have no treatment for the disease. The only place I know of for specific treatment for Dercum's is in Touscon. Dr. Karen Herbst. I am trying to get approval from insurance to see her. It is a long way for me but I feel it may be worth the trip to see her.

Jump to this post

Is she a chiropractor?

REPLY
1 reply
Profile picture for c3p0
c3p0 | @c3p0 | Jan 19 3:03pm
In reply to @fncz "Is she a chiropractor?" + (show)
Profile picture for fncz @fncz

Is she a chiropractor?

Jump to this post

She is a Board-Certified Endocrinologist
Internationally Recognized Lipedema Expert
Head of Research, Director of Diagnostic and Preventative Medicine at The Roxbury Institute
Vice President of the Lipedema World Alliance

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.