Dercum's Disease/Adiposis Delorosa

PennyIA

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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

  • Adiposis Dolorosa
  • Fatty Tissue Rheumatism
  • Juxta-Articular Adiposis Dolorosa
  • Lipomatosis Dolorosa Morbus Dercum's
General Discussion
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).
 

Moof

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Good to hear that you've finally got some answers. I have loads of lipomas, far more than most folk, but as they're not really painful, it's presumably not DD. I really hope you get some relief from the treatments that your doctor is trying.
 

Moof

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Actually, @PennyIA...I woke up this morning on my back, with my cat asleep across my thighs. It reminded me that the strings of lipomas on the tops of my legs are painful when you press on them! Not all of mine hurt (just seems to be the ones on my arms and legs), and none of them hurt without stimulus, which is why I assumed it wasn't Dercum's.

My gran's and auntie's legs were absolutely covered in lipomas by the time they died in their late 80s/early 90s, and the article about Dercum's I read a few years ago said that it wasn't hereditary, so that was another reason for thinking it was just familial lipoma syndrome.

I've had well defined ME for 40-odd years, but at menopause a few years back my fatigue suddenly worsened to the point where I had to give up work. I kept trying to explain to the doctor that it was different to the ME fatigue, but he clearly just thought I was loopy! That prompted me to do a bit of research, which eventually led to a page about Dercum's; but people were talking about severe, ongoing pain rather than lipomas that feel as if you've pressed a really deep bruise when you touch them. Your post has made me wonder again, though! May do a bit more reading when my brain wakes up. :)
 

PennyIA

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@Moof - I want to say that some lipomas stop hurting... or they only hurt upon pressure. I can also say that in my case, it feels like they tend to grow and sometimes shrink. If they are actively growing - they hurt far worse. It certainly doesn't hurt to explore it as a possibility if it feels like it fits. The vast majority of us aren't hypochondriacs, we're just trying to find help.
 

Moof

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Thank you, @PennyIA – I've done some reading, looked at and prodded myself a good bit, and reviewed how my lipomas have developed since the menopause (very significantly), and it seems likely that I and my late relatives meet the diagnosis. I'd never noticed that where my knees touch each other I have strangely large fat pads for someone who isn't overweight, and this seems to be one of the features of Dercum's.

I don't know yet whether I'll pursue it with my GP or not. I already have several chronic conditions, and don't want to risk being awarded the Hypochondria Gold Award (in a doctor's eyes, anyway – the conditions are all very real!). I think I may wait and see whether the chains of lipomas in my thighs get any more extensive.

I understand what you means about some lipomas shrinking. I had a big one in my arm that the doctor had already suggested removing if it grew much more, which has now shrunk to a quarter of its former size. I hadn't noticed that they hurt more when they're in a growth phase, and I think that's partly why I assumed I probably didn't have Dercum's, as some of my older lipomas aren't all that painful when prodded. The very active area in my right thigh is really sore, though, and I guess it's because they're currently spreading outwards under the surface of the skin.

Thanks again for posting about your diagnosis – it's provided me with an explanation of something I never thought I'd manage to work out. I'd also like to place a bet here and now that the 'extremely rare' classification is incorrect...diseases are bound to be extremely rare if most doctors have never heard of them and therefore can't diagnose them!
 

Binkie4

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Thought I would add my story to the mix.
I was given a diagnosis of lipolymphadema in 2015 when I was 68 after pushing my doctor very hard for a referral. The following year I was advised to consider if I had Dercums, and I now have an appointment for assessment at the end of Oct. I was slim as a young woman and through menopause but struggled when I hit 60. I always had the pear shape of the lipolymphadema person but in my 60s have developed the fatty pads around and behind the knees and very heavy thighs. I now have small lipoma type lumps on my upper feet which are painful without pressure. Sometimes they wake me at night.

My ME diagnosis was at 61 although I think I had a less severe form much earlier. I get severe classic PEM at about 24-72 hours after activity, and have OI and breathlessness. My energy level overall is very, very low.

I have hypermobilityEDS and mitral valve prolapse.

I can’t help but think that some or all of these are related. Weight became difficult to control after I reached 60.Have recently started a low carb diet. No success with keto.
 

Moof

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Really interesting, @Binkie4, I hadn't heard of lipolymphadaema until you mentioned it. I too have HEDS and classic ME (plus Asperger's, combined erosive/psoriatic arthritis, mast cell problems that started in early childhood, and fibromyalgia tender points), and I think it's very likely it's all connected in some way.

I have a disproportionate amount of fat on my upper thighs, buttocks and inner knees, but the rest of me is pretty much a normal weight (BMI 22.6). My auntie had a large number of tender lipomas and wasn't overweight either, but my Nan always struggled. She was overweight from her late 20s onwards and probably would have been classed as obese by modern doctors from her mid-50s.

The extra weight didn't seem to do her much harm – she was only a couple of months short of 90 when she died in her sleep – but she had pain and difficulty walking for the last 10 years. I wonder now whether that was due to having Dercum's, as she didn't suffer particularly from arthritis was never a frail person.
 

PennyIA

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I'm carrying my weight primarily in my upper body

- I went from a hourglass shape (maybe 10 pounds overweight).. wearing size 8 in US women's sizes
... to a bit curvier (gained 10 pounds three years ago - when I met my (now) husband - great cook) - up to size 10
... and gained 30 pounds last summer when I had another flare and am now officially pear-shaped and wearing XL (size 14-16)

So at 5'5" & 52 I'm now a good 40-50 pounds overweight.

I never really came out of last summer's flare fully. I've lost maybe five pounds... gained it right back again... I found gabapentin and it helped a lot with the nerve pain. But it doesn't stop it altogether, and taking a higher dose turns me into a mushroom (dense and unconscious).

Mexilitine is the next med we're trying - not sure I see anything from that after almost 7 weeks - I go to see the doctor again in another week. So we'll see what he says.

My mother struggled with her weight going up & down based on stress (she & I share stress eating).
 

Binkie4

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@PennyA

Yes, the flares are interesting but distressing in weight gain. I only realised how bad it was after it had happened. I have overall weight gain but significantly worse on lower body. I am sure I read this was a feature of Dercums but lymphologist disputes it. Advises keto diet but I failed to get into ketosis. Now trying low carb. I understand about losing weight and straight away regaining.

ETA: my lumps on top of feet seem to come and go.