Adiposa Dolorosa (AKA) Dercum's Disease

[spondy14]

Has anyone come across this, and if so has anything helped? It seems like Fibromyalgia's evil twin, however, the patient is very legit and it came on later rather than sooner.

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[Tenesma]

i see it frequently

patient population: women between 35-55, usually overweight, no longer can work or function, are depressed, a bit psychotic, convinced that there is something wrong with them but nobody listens or understands...

except i always thought that they were a bit crazy... but now I can diagnose them with Dercum's!!! Fantastic... another tool in my arsenal -

but the next step is to explain to them that Dercum's is "fatty tissue rheumatism" and a rheumatologist is the best solution - nothing like turf'n'surf...

 

[mehul_25]

actually have a case report and lit review about Dercum's just accepted to Pain Medicine.

We reported good pain relief with transdermal lidocaine at the sites.

The literature is very sparse with only case reports or small series reported. Success has been reported with lidocaine infusion, mexillitine, EMLA. Surgery tends to lead to lipoma recurrence and weight loss has not been studied all that extensively.

 

[jsaul]

i see it frequently

patient population: women between 35-55, usually overweight, no longer can work or function, are depressed, a bit psychotic, convinced that there is something wrong with them but nobody listens or understands...

except i always thought that they were a bit crazy... but now I can diagnose them with Dercum's!!! Fantastic... another tool in my arsenal -

but the next step is to explain to them that Dercum's is "fatty tissue rheumatism" and a rheumatologist is the best solution - nothing like turf'n'surf...

yeah, then the rheum will refer back to you because he will tell them that it is a pain management issue. the local rheums here will not even accept a patient with a diagnosis of fibro. they tell them it is a pain mgt issue .

 

[Tenesma]

well - your rheums are smart - what can i say?

 

[lucyz02]

i have seen anesthesia dolorosa in a patient involving CNix-- not adiposa dolorosa -
after some dentalwork aprox 1.5 yr prior to visit, pt was having a sensation of a "chain wraping around her teeth' and something in her mouth and throat. It was so obsessive about it, not even want to go out with her family. she had been to the dentist who reassured her evrything was fine. Occasionly this sensation would also involve part of the inner ear.

She was started on lyrica.

 

[Doctodd]

everyone feels better with lido infusion.......just like everyone who did cocaine in the day felt great......UNTIL......the buzz wore off.

T

 

[Tenesma]

so what about those patients who get 3-5 months of relief of their neuropathic whole body pain after one lidocaine infusion - i still don't understand that one...

 

[lobelsteve]

so what about those patients who get 3-5 months of relief of their neuropathic whole body pain after one lidocaine infusion - i still don't understand that one...

Placebo effect: 1/3 of patients, 2-3 months efficacy.

 

[Tenesma]

placebo ---- ahhh... maybe we should start marketing placebo infusions...

remember the first placebo study that showed morphine and saline have similar pain control?

 

[Doctodd]

you must be having great results......do i hear a study or journal article?

T

 

[DOctorJay]

Just got a chart to review for this.

Patient's on Exalgo 32 mg daily and Norco 5/325 bid. I think I'll pass on this one.

 

[lord_jeebus]

A rheumatologist at the place where I did fellowship was a self-proclaimed Dercum's expert. As a result we saw a lot of these patients in our clinic. The vast majority were indistinguishable from obese fibromyalgia patients on inappropriate opioid regimens (started by said rheumatologist). There were a couple who seemed legit.

 

[lobelsteve]

I've got one. Planning on getting her worst lipoma out and taking pics for a journal article. Looks good on US study. She needs pain relief in area once lipoma out to get published.

 

[ssmallz]

I just saw one in the clinic a few weeks ago. She was on inappropriately high doses of opioids so I sent her to an addictionologist to get her down to a more reasonable dose before I took over medications. Anyone have any thoughts on non opioid management? Most of the literature is sparse at best

 

[lonelobo]

I'm on 75mcg of Fentanyl, 400 mg of tramadol, 40mg of oxychodone, 500 mg of Naproxen and low dose adderall to help with the crushing fatigue. I've never had the pleasure of 'getting high', although I have always said that if anyone deserves to, I certainly do.
.

Well if this is all you are taking, not as bad as what most doctors here are talking about as we see insane doses.

Sounds like you have an unfortunate disease, but this forum is for medical specialists and maybe you should stay off this and try other blogs

 

[lonelobo]

FYI from Dr.Herbst website

EXPERIENCED FINGERS - Doctors and nurses, PAs and other healthcare providers were never taught how to examine fat. I know how and learn more as time goes on.

interesting?

 

[lonelobo]

Dercum’s Disease Medical Providers/Physicians
ALABAMA
None

ALASKA
Dr. John H. Bocachica Dermatologist of the Alaska Native Medical Center, Anchorage, Alaska

ARIZONA
Dr. Mark Luba, Phoenix, AZ
Dr. Karen Herbst Endocrinologist. Specializes in Fat Disorders/ Dercums Disease/Lipedema, Tucson, AZ

ARKANSAS
None

CALIFORNIA
Dr. T. Berger, UC San Francisco
Dr. Kevin Degnan (Plastic/ Reconstructive Surgeon), Concord, CA
Dr. Dye, UCLA Dermatology, Los Angeles, CA
Dr. Van Herle, Endocrinologist, UCLA, Los Angeles, CA
Dr. Secor (ortho) and Dr. Clark (derm) near Seal Beach, CA
Dr. Huynh (Kaiser Permanente) near Elk Grove, CA
Dr. Gregory Enns, Medical Geneticist at Stanford University Hospital CA
Dr. Walter Yourchek (Dermatologist) Stockton, CA
Dr. Elliott and Doctor Fiorentino are at Stanford Hospital in Palo Alto, CA

COLORADO
Dr. Adam Palazzari, is very open to learn more and has consulted with Dr. Herbst when needed, Lafayette, CO
Dr. A Solomon, Western Medical Clinic, Boulder Creek, CO

CONNECTICUT
None

DELAWARE
None

FLORIDA
Dr. Hussamy, Vero Beach, FL
Dr. Fisher, Dermatologist at WFL Medical Center, Pensacola, FL
Dr. Tara Huguenin MD Rheumatologist, Sarasota, FL or Englewood, FL
Dr. Jerome Vincente MD 115 JFK Drive Atlantis, Fl (palm beach county) 561-967-2200

GEORGIA
Dr. Jack Arbiser, Emory Clinic, Atlanta, GA
Rebecca Campen, Savannah, GA

HAWAII
None

IDAHO
Dr. Lindsay Sewell. He is a dermatologist in Idaho Falls, Idaho

ILLINOIS
Dr. Leah Durst at the University of Chicago Medical Center
Jason Gruss, MD (Pain & Rehab doc, familiar with DD) http://firsthealthassociates.com/departments-providers/physical-medicine/jason-j.-gruss--md.html

INDIANA
None

IOWA
MERCY PHYSICAL REHABILITATION AND PAIN SERVICES: treat pain for DD Dr. Jennifer Gibson Mason, City, IA

KANSAS
Dr. H. Lindsley, Kansas University Medical Center Kansas City, KS

KENTUCKY
Dr. Gordon B. Newell, Dermatologist, Bowling Green, KY
S. L. Cook, MD/Surgeon, Somerset, KY

John Alley, A surgeon who removes tumors . He is at KU Medical Center in Kansas City, Kansas.

LOUISIANA
Dr Kevin Ingram Vidalia, LA
Dr. Cavell Monroe, LA

MAINE
None

MARYLAND
None

MASSACHUSETTS
MASSACHUSETTS GENERAL HOSPITAL
Dermatology: Dr. Rebecca Campen and her associates (Dr. Campen may be in GA now)
Campen, Rebecca B, MD Diagnoses Dercums Disease, MA
Dr. Angel Dermatologist Surgeon- removal of lipomas, MA
Dr Bruce Warous, Reading, MA
Dr. Kimball at Mass. General in MA
The Pain and Wellness Center/ treats pain caused by Dercums Disease Dr. Viasman Peabody, MA
Mystic Valley Dermatology Dr. Michael J. Yablonsky Medford, MA
Dr. Robert Pastan Rheumatologist/Internal Medicine Stoneham, MA

MICHIGAN
Dr. Fivenson, Dermatologist MI
Dr. Ali Moiin,MD Dermatologist at the Detroit Medical Center, Detroit, MI
University of Michigan - Dr. Christine Holland immunologist

MINNESOTA

Essentia Health Clinic. Some see Heidi Olsen-Fitzgerald, PA. But her willingness to educate her colleagues has led to two more providers in the same clinic. Dr. Lara Lunde and Dr. Rogers. Moorhead, MN
For PT and MLD there is Becky Dockter at OSPTI in Breckenridge, MN
Dr. Andrews, Physiatry in Fergus Falls, MN

MISSISSIPPI
None

MISSOURI
Dr. Aunita Hill at Missouri Baptist Hospital in St. Louis, MO
Virginia Robine, MO

Robin West. Blue Springs or Independence, MO
http://barrypointefamilycare.com/our-providers/dana-h-granberg-md

MONTANA
None

NEBRASKA
Dr. Hurley, Rheumatology Clinic, Omaha Nebraska Veterans Hospital, Omaha, NE

NEW HAMPSHIRE
None

NEVADA
None

NEW JERSEY
SUMMIT MEDICAL GROUP Berkeley Heights, NJ
Plastic Surgeon: Dr. Reza Moneni, NJ
Rheumatologist: Dr. Hendricks Whitman 111, NJ
Pain Specialist: Dr. Oza, NJ
Neurologist: Dr. Cohen, NJ
Orthopedic: Dr. Mirsky, NJ
These Doctors work in harmony with each other and with Dr. Herbst

NEW MEXICO
None

NEW YORK
Dr. E. Gosy & Dr. J. Keyes Eden, NY
Dr. Alcena White Plains, NY
Dr. Kevin Kulick, dermatologist, in Buffalo, NY

NORTH CAROLINA
Dr. Henry Lepore. Brunswick County, Sunset Beach, NC
Shelly and she is located at West Point Medical Practice in Lenoir, NC.
Dr. Hicks PCP, Thomasville, NC

NORTH DAKOTA
For OT and MLD there is Gabe Evenson at Blue Water Therapy in Fargo, ND

OHIO
Dr. Bob Singh, Marion, OH
Dr. Andrew Kowalewsky, OH
Dr. Kevin V. Hackshaw Rheumatologist Columbus, OH

OKLAHOMA
Dr. Michael Elliot Internal Medicine doctor Guthrie, OK

OREGON
Dr. Ben Cockcroft MD, diagnosed and treated; Seaside, OR

PENNSYLVANIA
Dr David Adams at Geisinger Medical Center, dermatological surgeon, Danville, PA

Dr Vincent Herbst, dermatological surgeon, Williamsport, PA
Dr. Robert A. Centrone, D.O., Internal Medicine, Drexel Hill, PA

RHODE ISLAND
None

SOUTH CAROLINA
None

SOUTH DAKOTA
None

TENNESSEE
Dr. J. Kevin Buchanan Farragut Family Practice in Knoxville, TN
Dr. Jeffrey Byers, Vanderbilt Clinic in 615-791-7254, Nashville, TN
Dr. Shack, Director of Plastic Surgery 615-322-2350, Vanderbilt Nashville, TN
Dr. James Gore, Rheumatology 615-764-4450, Vanderbilt Nashville, TN

TEXAS
Dr. Fetchick, Endocrinologist San Antonio, TX
Dr. W.C. Anderson, III MD; dermatologist, New Braunfels, Texas
Dr. Martin Fischer, Rheumatologist, Houston, TX
Dr. Kanani Forney, Texas
Dr. Santamaria in Tomball, Texas
Dr. Caroline Fife at the Texas Med Ctr http://mhhs.woundcenter.net/fife_cv.htm Houston, TX

UTAH
None

VERMONT
Bonita Libman, Burlington, VT

VIRGINIA
Dermatologist Dr Pariser in Norfolk,VA

WASHINGTON
Dr. Christopher Berlin, Group Health, Downtown Seattle, WA

WEST VIRGINIA
None

WISCONSIN
Dr. Elizabeth Bensen, Physiatrist (Pain & Rehab) Fond Du Lac, WI

WYOMING
None

 

[psychinwi]

Dercum’s Disease Medical Providers/Physicians
ALABAMA
None

ALASKA
Dr. John H. Bocachica Dermatologist of the Alaska Native Medical Center, Anchorage, Alaska

ARIZONA
Dr. Mark Luba, Phoenix, AZ
Dr. Karen Herbst Endocrinologist. Specializes in Fat Disorders/ Dercums Disease/Lipedema, Tucson, AZ

ARKANSAS
None

CALIFORNIA
Dr. T. Berger, UC San Francisco
Dr. Kevin Degnan (Plastic/ Reconstructive Surgeon), Concord, CA
Dr. Dye, UCLA Dermatology, Los Angeles, CA
Dr. Van Herle, Endocrinologist, UCLA, Los Angeles, CA
Dr. Secor (ortho) and Dr. Clark (derm) near Seal Beach, CA
Dr. Huynh (Kaiser Permanente) near Elk Grove, CA
Dr. Gregory Enns, Medical Geneticist at Stanford University Hospital CA
Dr. Walter Yourchek (Dermatologist) Stockton, CA
Dr. Elliott and Doctor Fiorentino are at Stanford Hospital in Palo Alto, CA

COLORADO
Dr. Adam Palazzari, is very open to learn more and has consulted with Dr. Herbst when needed, Lafayette, CO
Dr. A Solomon, Western Medical Clinic, Boulder Creek, CO

CONNECTICUT
None

DELAWARE
None

FLORIDA
Dr. Hussamy, Vero Beach, FL
Dr. Fisher, Dermatologist at WFL Medical Center, Pensacola, FL
Dr. Tara Huguenin MD Rheumatologist, Sarasota, FL or Englewood, FL
Dr. Jerome Vincente MD 115 JFK Drive Atlantis, Fl (palm beach county) 561-967-2200

GEORGIA
Dr. Jack Arbiser, Emory Clinic, Atlanta, GA
Rebecca Campen, Savannah, GA

HAWAII
None

IDAHO
Dr. Lindsay Sewell. He is a dermatologist in Idaho Falls, Idaho

ILLINOIS
Dr. Leah Durst at the University of Chicago Medical Center
Jason Gruss, MD (Pain & Rehab doc, familiar with DD) http://firsthealthassociates.com/departments-providers/physical-medicine/jason-j.-gruss--md.html

INDIANA
None

IOWA
MERCY PHYSICAL REHABILITATION AND PAIN SERVICES: treat pain for DD Dr. Jennifer Gibson Mason, City, IA

KANSAS
Dr. H. Lindsley, Kansas University Medical Center Kansas City, KS

KENTUCKY
Dr. Gordon B. Newell, Dermatologist, Bowling Green, KY
S. L. Cook, MD/Surgeon, Somerset, KY

John Alley, A surgeon who removes tumors . He is at KU Medical Center in Kansas City, Kansas.

LOUISIANA
Dr Kevin Ingram Vidalia, LA
Dr. Cavell Monroe, LA

MAINE
None

MARYLAND
None

MASSACHUSETTS
MASSACHUSETTS GENERAL HOSPITAL
Dermatology: Dr. Rebecca Campen and her associates (Dr. Campen may be in GA now)
Campen, Rebecca B, MD Diagnoses Dercums Disease, MA
Dr. Angel Dermatologist Surgeon- removal of lipomas, MA
Dr Bruce Warous, Reading, MA
Dr. Kimball at Mass. General in MA
The Pain and Wellness Center/ treats pain caused by Dercums Disease Dr. Viasman Peabody, MA
Mystic Valley Dermatology Dr. Michael J. Yablonsky Medford, MA
Dr. Robert Pastan Rheumatologist/Internal Medicine Stoneham, MA

MICHIGAN
Dr. Fivenson, Dermatologist MI
Dr. Ali Moiin,MD Dermatologist at the Detroit Medical Center, Detroit, MI
University of Michigan - Dr. Christine Holland immunologist

MINNESOTA

Essentia Health Clinic. Some see Heidi Olsen-Fitzgerald, PA. But her willingness to educate her colleagues has led to two more providers in the same clinic. Dr. Lara Lunde and Dr. Rogers. Moorhead, MN
For PT and MLD there is Becky Dockter at OSPTI in Breckenridge, MN
Dr. Andrews, Physiatry in Fergus Falls, MN

MISSISSIPPI
None

MISSOURI
Dr. Aunita Hill at Missouri Baptist Hospital in St. Louis, MO
Virginia Robine, MO

Robin West. Blue Springs or Independence, MO
http://barrypointefamilycare.com/our-providers/dana-h-granberg-md

MONTANA
None

NEBRASKA
Dr. Hurley, Rheumatology Clinic, Omaha Nebraska Veterans Hospital, Omaha, NE

NEW HAMPSHIRE
None

NEVADA
None

NEW JERSEY
SUMMIT MEDICAL GROUP Berkeley Heights, NJ
Plastic Surgeon: Dr. Reza Moneni, NJ
Rheumatologist: Dr. Hendricks Whitman 111, NJ
Pain Specialist: Dr. Oza, NJ
Neurologist: Dr. Cohen, NJ
Orthopedic: Dr. Mirsky, NJ
These Doctors work in harmony with each other and with Dr. Herbst

NEW MEXICO
None

NEW YORK
Dr. E. Gosy & Dr. J. Keyes Eden, NY
Dr. Alcena White Plains, NY
Dr. Kevin Kulick, dermatologist, in Buffalo, NY

NORTH CAROLINA
Dr. Henry Lepore. Brunswick County, Sunset Beach, NC
Shelly and she is located at West Point Medical Practice in Lenoir, NC.
Dr. Hicks PCP, Thomasville, NC

NORTH DAKOTA
For OT and MLD there is Gabe Evenson at Blue Water Therapy in Fargo, ND

OHIO
Dr. Bob Singh, Marion, OH
Dr. Andrew Kowalewsky, OH
Dr. Kevin V. Hackshaw Rheumatologist Columbus, OH

OKLAHOMA
Dr. Michael Elliot Internal Medicine doctor Guthrie, OK

OREGON
Dr. Ben Cockcroft MD, diagnosed and treated; Seaside, OR

PENNSYLVANIA
Dr David Adams at Geisinger Medical Center, dermatological surgeon, Danville, PA

Dr Vincent Herbst, dermatological surgeon, Williamsport, PA
Dr. Robert A. Centrone, D.O., Internal Medicine, Drexel Hill, PA

RHODE ISLAND
None

SOUTH CAROLINA
None

SOUTH DAKOTA
None

TENNESSEE
Dr. J. Kevin Buchanan Farragut Family Practice in Knoxville, TN
Dr. Jeffrey Byers, Vanderbilt Clinic in 615-791-7254, Nashville, TN
Dr. Shack, Director of Plastic Surgery 615-322-2350, Vanderbilt Nashville, TN
Dr. James Gore, Rheumatology 615-764-4450, Vanderbilt Nashville, TN

TEXAS
Dr. Fetchick, Endocrinologist San Antonio, TX
Dr. W.C. Anderson, III MD; dermatologist, New Braunfels, Texas
Dr. Martin Fischer, Rheumatologist, Houston, TX
Dr. Kanani Forney, Texas
Dr. Santamaria in Tomball, Texas
Dr. Caroline Fife at the Texas Med Ctr http://mhhs.woundcenter.net/fife_cv.htm Houston, TX

UTAH
None

VERMONT
Bonita Libman, Burlington, VT

VIRGINIA
Dermatologist Dr Pariser in Norfolk,VA

WASHINGTON
Dr. Christopher Berlin, Group Health, Downtown Seattle, WA

WEST VIRGINIA
None

WISCONSIN
Dr. Elizabeth Bensen, Physiatrist (Pain & Rehab) Fond Du Lac, WI

WYOMING
None

Just wanted to let the group know that Dr. Elizabeth Bensen in Wisconsin has only treated one patient with Dercum's and is not taking any new patients with Dercum's.

 

[pastafan]

N=1. Gabapentin only was effective.

Glad my name was not on the list...

 

[Ducttape]

why are we updating a post from 8 years ago?

 

[lobelsteve]

Necrobump. I considered a warning, but the info shared could be found useful by someone.

 

[epidural man]

FYI from Dr.Herbst website

EXPERIENCED FINGERS - Doctors and nurses, PAs and other healthcare providers were never taught how to examine fat. I know how and learn more as time goes on.

interesting?

Is it possible to start a thread that entitled "Those who have gone" and include all the people who's accounts were removed or banned? And then a link or explanation of why?

IT drives me crazy when I see someone was banned, and have not idea why or what happened. I mean - I bet it is a good story each time!

 

[Agast]

Is it possible to start a thread that entitled "Those who have gone" and include all the people who's accounts were removed or banned? And then a link or explanation of why?

IT drives me crazy when I see someone was banned, and have not idea why or what happened. I mean - I bet it is a good story each time!

It’s usually pretty straightforward, ie too much political bickering in the private forum that violates ToS.

 

[clubdeac]

It’s usually pretty straightforward, ie too much political bickering in the private forum that violates ToS.

too much bickering? haven't we been bickering for years?