My comments/annotations added below; I have been recently diagnosed with Dercums. I had been ill for 14 years; and thought I had ME/CFS for the last 10 of those years. I now believe that I have the right diagnosis. Putting this thread out there in case someone else has multiple painful lumps and might be getting misdiagnosed. Or maybe this is just one of those sub-groups that if we can figure out what's really different - we can make the remaining ME/CFS 'group' a little less diverse.
I'm firmly of the mind (albeit, I'm a patient who has never studied medicine) that it's highly likely that people getting diagnosed with Fibromyalgia who ALSO HAVE painful fatty lumps should ask their doctors if they might have Dercum's.
Copied content from NORD: https://rarediseases.org/rare-diseases/dercums-disease/
Dercum’s Disease
NORD gratefully acknowledges Rebecca Campen, MD, J.D. Assistant Professor, Harvard Medical School Assistant in Dermatology, Massachusetts General Hospital, for assistance in the preparation of this report.
Synonyms of Dercum’s Disease
Dercum's disease is an extremely rare disorder characterized by multiple, painful growths consisting of fatty tissue (lipomas). These growths mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously). Pain associated with Dercum's disease can often be severe. Pain may be caused by these growths pressing on nearby nerves. Dercum's disease mainly occurs in adults and more women are affected than men. In some cases, affected individuals may also experience weight gain, depression, lethargy, and/or confusion. The exact cause of Dercum's disease is unknown.
Signs & Symptoms
The characteristic finding of Dercum’s disease is the slow formation of multiple, painful growths consisting of fatty tissue (lipomas) that are found just below the surface of the skin. Pain may vary from mild discomfort when a growth is pressed or touched to severe pain that is disproportionate to the physical findings. Some affected individuals feel that “all fat hurts.” Pain can last for hours and may come and go or last continuously. In severe cases, pain may worsen with movement. The exact reason for pain associated with Dercum’s disease is unknown, but may occur because the lipomas press on nearby nerves. Lipomas may be found in any part of the body, although they are rare in the head and neck. The trunk, upper arms and upper legs are most often affected.
Some individuals with Dercum’s may experience swelling of various areas of the body, especially the hands. Swelling occurs for no apparent reason and often disappears without treatment. Significant weight gain is a common occurrence for most individuals affected by Dercum’s disease.
Additional symptoms may occur in individuals with Dercum’s disease including fatigue, generalized weakness, a tendency to bruise easily, headaches, irritability, and stiffness after resting, especially in the morning. An association with bouts of depression, memory or concentration problems, and a susceptibility to infection has been noted in some cases.
Additional reports in the medical literature have linked Dercum’s disease to a variety of conditions including arthritis, high blood pressure (hypertension), congestive heart failure, sleep disorders, dry eyes, and myxedema, a condition due to an underactive thyroid that is characterized by dry skin, swelling around the lips and nose, and mental deterioration.
Fat Disorders Research Society, Inc.
My notes: the fatigue, generalized weakness, tendency to bruise, headaches, irritability, stiffness, memory & concentration problems.... and not noted in this list, increased pain/symptoms after exercise/exertion... are all the reasons I thought I had ME/CFS. But if I searched for painful lumps... I only found a couple of threads (and some were from me)... My other (still unaccounted for) symptom is frequent issues with dislocation of rib and feet bones. The current studies being conducted by Dr. Karen Herbst http://www.lipomadoc.org/; and her recent speeches at Fat Disorders Conferences https://www.youtube.com/channel/UC4zBZEEwLw2nGkqIp7txy8Q, indicate that she believes it's a connective tissue disorder (hence my placement in this forum).
When I think about it, I do experience more infections (which seems opposite ME/CFS - but then again, we're all different-ish; but it was probably a clue I had missed.
Also, when I think of PEM - I thought I fit the description. My mom had the same issues with fibromyalgia... but if I really think about it. I get increased pain and fogginess right away. Most PEM stories I hear is that it takes a bit, like later in the day or the next day. And my mom's case was probably different as well... I think she really did overdo things to an extreme as opposed to the just-trying-to-feed-yourself PEM that ME/CFS experience.
I kept getting told I wasn't sick enough for ME/CFS because I could still work. But I thought that ME/CFS has a whole range of severe/moderate/mild - and since I've slipped upwards and back down that scale it wasn't quite enough to convince me that I didn't have ME/CFS.
Also, this diagnosis got recommended to me for research a few years ago... but a lot of sites still indicate that it only applies to obese people. Dr Karen Herbst is trying to get the definition for the disease redefined as she has patients who have all body types. My own primary care physician refused to consider this as a diagnosis for me, since I'm overweight and not obese, ergo - I didn't fit the criteria. My Pain Specialist is very familiar with Dercum's Disease and it took him all of about 2 minutes reviewing my case notes before diagnosing me with Dercum's Disease - per Dr Karen Herbst statements: Dercum's Disease doesn't only happen to fat people; but having Dercum's Disease puts you at greater risk for gaining weight. And the Dercum's lumps don't go away with diet/exercise so even if you lose all the weight you can - you will still have the fatty lumps. Reports have been made that surgical removal of the lumps frequently results in more new lumps in the same area shortly thereafter.
Anyway - thread is here in case someone does a search... maybe this information might be useful.
FWIW - I am currently taking gabapentin for pain, muscle relaxants for pain, GF/DF diet; am not tolerating any supplements right now - though am hoping if we can find effective treatment for the lumps, maybe I can start methylation supplements again. New Dr is trying me on Mexilitene (old drug no longer used for heart arrhythmia; he's had luck with some DD patients using it).
I'm firmly of the mind (albeit, I'm a patient who has never studied medicine) that it's highly likely that people getting diagnosed with Fibromyalgia who ALSO HAVE painful fatty lumps should ask their doctors if they might have Dercum's.
Copied content from NORD: https://rarediseases.org/rare-diseases/dercums-disease/
Dercum’s Disease
NORD gratefully acknowledges Rebecca Campen, MD, J.D. Assistant Professor, Harvard Medical School Assistant in Dermatology, Massachusetts General Hospital, for assistance in the preparation of this report.
Synonyms of Dercum’s Disease
- Adiposis Dolorosa
- Fatty Tissue Rheumatism
- Juxta-Articular Adiposis Dolorosa
- Lipomatosis Dolorosa Morbus Dercum's
Dercum's disease is an extremely rare disorder characterized by multiple, painful growths consisting of fatty tissue (lipomas). These growths mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously). Pain associated with Dercum's disease can often be severe. Pain may be caused by these growths pressing on nearby nerves. Dercum's disease mainly occurs in adults and more women are affected than men. In some cases, affected individuals may also experience weight gain, depression, lethargy, and/or confusion. The exact cause of Dercum's disease is unknown.
Signs & Symptoms
The characteristic finding of Dercum’s disease is the slow formation of multiple, painful growths consisting of fatty tissue (lipomas) that are found just below the surface of the skin. Pain may vary from mild discomfort when a growth is pressed or touched to severe pain that is disproportionate to the physical findings. Some affected individuals feel that “all fat hurts.” Pain can last for hours and may come and go or last continuously. In severe cases, pain may worsen with movement. The exact reason for pain associated with Dercum’s disease is unknown, but may occur because the lipomas press on nearby nerves. Lipomas may be found in any part of the body, although they are rare in the head and neck. The trunk, upper arms and upper legs are most often affected.
Some individuals with Dercum’s may experience swelling of various areas of the body, especially the hands. Swelling occurs for no apparent reason and often disappears without treatment. Significant weight gain is a common occurrence for most individuals affected by Dercum’s disease.
Additional symptoms may occur in individuals with Dercum’s disease including fatigue, generalized weakness, a tendency to bruise easily, headaches, irritability, and stiffness after resting, especially in the morning. An association with bouts of depression, memory or concentration problems, and a susceptibility to infection has been noted in some cases.
Additional reports in the medical literature have linked Dercum’s disease to a variety of conditions including arthritis, high blood pressure (hypertension), congestive heart failure, sleep disorders, dry eyes, and myxedema, a condition due to an underactive thyroid that is characterized by dry skin, swelling around the lips and nose, and mental deterioration.
Fat Disorders Research Society, Inc.
- PO Box 3014
- Ridgefield, NJ 07657 USA
- Phone: (203) 769-1267
- Email: info@fatdisorders.org
- Website: http://www.fatdisorders.org
My notes: the fatigue, generalized weakness, tendency to bruise, headaches, irritability, stiffness, memory & concentration problems.... and not noted in this list, increased pain/symptoms after exercise/exertion... are all the reasons I thought I had ME/CFS. But if I searched for painful lumps... I only found a couple of threads (and some were from me)... My other (still unaccounted for) symptom is frequent issues with dislocation of rib and feet bones. The current studies being conducted by Dr. Karen Herbst http://www.lipomadoc.org/; and her recent speeches at Fat Disorders Conferences https://www.youtube.com/channel/UC4zBZEEwLw2nGkqIp7txy8Q, indicate that she believes it's a connective tissue disorder (hence my placement in this forum).
When I think about it, I do experience more infections (which seems opposite ME/CFS - but then again, we're all different-ish; but it was probably a clue I had missed.
Also, when I think of PEM - I thought I fit the description. My mom had the same issues with fibromyalgia... but if I really think about it. I get increased pain and fogginess right away. Most PEM stories I hear is that it takes a bit, like later in the day or the next day. And my mom's case was probably different as well... I think she really did overdo things to an extreme as opposed to the just-trying-to-feed-yourself PEM that ME/CFS experience.
I kept getting told I wasn't sick enough for ME/CFS because I could still work. But I thought that ME/CFS has a whole range of severe/moderate/mild - and since I've slipped upwards and back down that scale it wasn't quite enough to convince me that I didn't have ME/CFS.
Also, this diagnosis got recommended to me for research a few years ago... but a lot of sites still indicate that it only applies to obese people. Dr Karen Herbst is trying to get the definition for the disease redefined as she has patients who have all body types. My own primary care physician refused to consider this as a diagnosis for me, since I'm overweight and not obese, ergo - I didn't fit the criteria. My Pain Specialist is very familiar with Dercum's Disease and it took him all of about 2 minutes reviewing my case notes before diagnosing me with Dercum's Disease - per Dr Karen Herbst statements: Dercum's Disease doesn't only happen to fat people; but having Dercum's Disease puts you at greater risk for gaining weight. And the Dercum's lumps don't go away with diet/exercise so even if you lose all the weight you can - you will still have the fatty lumps. Reports have been made that surgical removal of the lumps frequently results in more new lumps in the same area shortly thereafter.
Anyway - thread is here in case someone does a search... maybe this information might be useful.
FWIW - I am currently taking gabapentin for pain, muscle relaxants for pain, GF/DF diet; am not tolerating any supplements right now - though am hoping if we can find effective treatment for the lumps, maybe I can start methylation supplements again. New Dr is trying me on Mexilitene (old drug no longer used for heart arrhythmia; he's had luck with some DD patients using it).