Lipomas, Dercums, Adiposa Dolorosa

I have one of these fat disorders, but I've never got around to raising it with a doctor. I know that isn't very helpful in research terms, as it means it goes unrecorded, but knowing there's nothing much that could be done about it means it's hard to find the energy! It's hereditary, whatever it is; my gran and aunt both had it. I thought I'd note it here, though, in case anyone else wants to discuss it.

 

I have Lipodema. Started in puberty but had no idea it was until a few years ago. I am really struggling with this condition and ME.

 

That must be really tough. Yet another disease that's been massively under-researched – probably because it only usually affects women, and there are widespread incorrect assumptions that it's somehow connected to obesity.

 

Sending sympathy. I was diagnosed only 5 years ago in my 60s but, looking back, the signs were there. Now progressive -hate it. Another illness that is judged, stigmatised and misjudged. I think exercise kept it somewhat at bay for a long time but exercise not possible now so ME is a rotten comorbidity to have with lipoedema.

Pretty sure I read somewhere of a link with Ehlers Danlos but cannot remember where. Diagnosed with that last year. Will add a link if I remember where. edit: See post below.

edit: my blood is stored at St. George's where they are researching lipoedema, looking for genetic links I think.

 

Lipoma, another autoimmune ME like fatiguing condition or MUS for depressed females!

Undertaking a search for lipoma I was surprised to find papers suggesting fatigue and breathless as symptoms. Fatigue of type unspecified, but many of the symptoms listed by NIH mirror aspects of ME. Some years ago a member on Phoenix rising also mentioned having lipoma and ME.

https://rarediseases.info.nih.gov/diseases/5750/adiposis-dolorosa


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6911249/

Quotes include

“a number of psychiatric manifestations (e.g. sleep disturbances, emotional instability, depression, and anxiety) but the associated symptoms are not a constant component of clinical presentation of the disease.”

“Despite the above-mentioned reports, all available literature indicates sporadic occurrence of Dercum’s disease. It is possible that the disease is heterogeneous and inherited cases are a small subgroup of Dercum’s syndrome”

“Autosomal dominant inheritance” and overweight + “predominantly a disease affecting women.”

This all sounds so very familiar, but at least the NIH has the grace to imply there is uncertainty with no mention of deconditioning –yet.

Lipoma are described as fatty lumps seen under the skin, with size between a pea / golf ball. They can also be imbedded. If painful and multiple Dercums or adiposis dolorosa is diagnosed. NHS pages imply lipoma occur singularly, are common (yet feature in the NIH rare diseases link above), are not painful and are judged cosmetic, so not eligible for removal.

https://www.nhs.uk/conditions/lipoma/

So once again the UK is at odds with the US opinion.

Unfortunately, my 60 lipoma have escalated to 100+ over lockdown with 27 on my left forearm alone I am male and certainly before lockdown was not overweight. My daughter has 2 grown in the last 4 years, but my parents had none.

I am diagnosed with Lyme including spirochetes and ME, my partner + daughter both with ME and other autoimmunity illnesses + another daughter with IBS.

I have in the last week managed to get a reluctant referral to immunology; in the meantime Naproxen has helped a little.

 

Overview of ehlers danlos and lipoedema

https://www.youtube.com/watch?v=OhA96-Rp7Gs

From about 20 minutes in , there is discussion of ehlers danlos (eta type 3 hypermobility) and lipoedema, of interest to me because I am diagnosed with both. There is also a mention of mast cell disorder.

 

https://www.intechopen.com/books/adipose-tissue-an-update/lipedema-a-painful-adipose-tissue-disorder

An article identifying lipoedema and Dercums as painful connective tissue disorders.

I hope it might be of use to you in your immunology appt @yME. I sympathise with the increase in number of lipomas. In the last 4 years I have grown several on the tops of my feet and they are painful especially at night.

When I made an appt to have these examined in lymphology, the Prof ( stating he believed they were part of an overarching syndrome) referred me on to genetics where I was given a h(EDS) diagnosis. It does seem that lipoedema and h(EDS) are being increasingly linked.

Hope your appt proves helpful @yME.

eta: table 1 is interesting

eta2: interested in breathlessness being linked to lipoedema. It is now one of my primary symptoms but exhaustive heart and lung tests have not provided the explanation.

 

It's a bit alarming to read in this thread that lipomas are hereditary. My late father had one very close to one of his cheekbones and he kept cutting it when he shaved. (I never asked him if he had any others that I couldn't see.) This was decades ago so the NHS actually removed it for him. They didn't say it was just cosmetic.

 

They can be, but usually aren't – so don't worry too much.

They will remove them if they're causing problems. I've had large ones removed from my wrists, as there's a lot of important anatomy there; had they got too big, they could not only have interfered with movement, but also been difficult to disentangle from blood vessels, nerves, and tendons.

The ones that have been the biggest pain for me are the breast lipomas. They don't even hurt, but as a first degree relative had aggressive bilateral breast cancer, every little lump has to be investigated thoroughly...even though both I and and the GP know by the feel of them that they're just my usual rubber balls!

 

Thank you all for your comments and links. Today I had an ultrasound session. It seems my GP booked it to achieve something new, but I can not understand why.
By requesting a scan on just one knee and thigh the radiology doctor would only (minimal) look very close to the knee area- which both the GP and I had already determined previously to be covered with Multiple lipoma. Verbally, I was then informed that lipoma cannot be painful being just under the skin, I had more present than I can feel. If you have knee pain and difficulty walking it’s not lipoma. US research is wrong! Internal organs or nerves cannot be involved with lipoma. Your GP needs to keep a eye on lipoma.

Needless to say that’s not my experience or it seems the above forum members.

Somehow our NHS doctors loose the ability to question their beliefs or actually consider the evidence before them. Their job must be so boring if investigation and free thought process is trained out. This certainly doesn’t bode well for the future of the Cfs or ME debate no matter what NICE might propose next year.

On a more positive note my GP actually asked for the links above and said he was prepared to watch the videos. Hurray. But I wonder how he will view the radiologists doctors report from today which is in conflict?

I will report back once the immunologist has spoken. Sigh.

 

https://www.youtube.com/watch?v=kvC2xZdpDIU

I came across this talk by Dr Karen Herbst which basically looks at the distinguishing features between lipoedema and Dercums. Lots of detail about slightly differing symptoms. Also a fair bit of discussion on lipomas which may interest you @yME .

About 20 minutes in, she talks about hypermobility ( EDS3) and how hypermobility actually increases as lipoedema progresses to be severe. This seems incongruous but I trust Dr Herbst's work.

I would like to find a talk specifically linking either the adipose tissue disorders or hypermobility with ME. As someone with all three, the possible links interest me.

 

I am not sure she is implying that hypermobility increases over time, but rather that it is more likely to be found in those who have severe adipose tissue problems. Genetic hypermobility does not increase as a rule - people get stiffer.

I found her account very unconvincing because she has no controls. The rates of hypermobility she found are pretty normal. She also makes sweeping statements about blood vessels that have no basis in evidence as far as I know.

 

@Jonathan Edwards

I did not express myself very clearly so apologies.
I should have said that rates of hypermobility are higher in those with lipoedema which has progressed to be more severe.(stage2/3)

This is interesting in that, as you say, people generally get stiffer with age but, since lipoedema usually gets progressively worse over time, these patients are either retaining or increasing hypermobility possibly as they age. Has my logic gone adrift here? She did say something about the ages of the groups studied but I am afraid I cannot recall this detail.

 

All you need is for people with a tendency to severe lipoedema to be more likely to be hyper mobile. Some of those people, as yet at a mild stage, will show up in the number of hyper mobiles in the mild group but a higher proportion will show up in the severe group. Even if everyone got stiffer you would still see more hypermobility in the severe cohort. It is just a statistical thing.

I also think it highly likely that there is going to be recruitment bias in studies like this, just as for the Bragee study. Centres get reputations for being interested in combinations of things and hey presto they have patients with combinations.

 

Interesting they removed one from my ex-husbands (a male's) breast on the NHS. That was about 25 years ago and definitely only done for cosmetic reasons.

 

Attached is a survey sent out by Lipoedema UK requesting participation in a survey by University Hospital of Bruxelles on quality of life experienced by people with lipoedema.
Quite a large study- over 5000 responses so far.


i haven't had a chance to go through the survey yet- tomorrow's job, just in time- so I'm not sure if any of the questions have relevance to ME. There are one or two questions about lipoedema and Ehlers Danlos for anyone interested in that angle.




Psychological factors influencing the body image and quality of life of patients affected by Lipoedema




Study ending by Midnight on September 30th

Message from Jean-Paul Belgrado and his team at University Hospital Brugmann in Brussels

We would like to thank you again for your participation and support in our lipedema study (5314 responses received so far).

The study is ending within 2 days, by midnight on 30th September.

If you have not completely finalised the survey or know a friend, patient, member affected by a lipedema that hasn't done it yet, it still time to do it. Please do not hesitate to share the links below.

https://survey.ulb.ac.be/survey3/index.php/631392?lang=en

If you previously encountered problems accessing the survey, we are pleased to let you know that Lip UK have been in touch with the team at the University of Bruxelles, who have now identified and corrected the issues, so you can go back to the survey and complete it.

Thank you to the people who let us know about the problems.

LINK TO SURVEY


Apologies for lateness of posting.This only arrived in my inbox today. The questions can be answered in sections, and stored as you go along if energy is an issue.

 

A biomarker discovered for lipoedema at Stanford. Not yet read fully - what a news day!

http://med.stanford.edu/news/all-ne...oNxkwgTiEik8VDyP_rufSkLUCvbfjOFwvOD-zqzmylc7c


edit: I have just glanced at some of the earlier posts on the thread possibly linking lipoedema and h(EDS). Interesting.

 

I have only just read the link to the biomarker discovery ( was sidetracked to the Oxford vaccine which was approved the same day) and will tag all those who have contributed to the thread so far @Kitty @yME @Jonathan Edwards[/USER] @Arnie Pye @Simbindi @ukxmrv



From the link http://med.stanford.edu/news/all-ne...oNxkwgTiEik8VDyP_rufSkLUCvbfjOFwvOD-zqzmylc7c

"“We wanted to see if we could find a biological marker for lymphedema and lipedema, and discriminate between those and obesity,” Rockson said. Working first in a mouse model for obesity developed by Oliver, who researches the lymphatic system, they found that platelet factor, a small protein, 4 is a biomarker for lymphatic-promoted disorders.

“We found a protein fingerprint that seemed to be uniquely associated with the mice that had a lymphatic defect but was not present in normal mice or the obese mice,” Rockson said. Analyzing human cells from 50 participants — 12 who were healthy, 37 with lymphedema, 11 with lymphovascular disease and 15 with lipedema — they found a similar fingerprint."

“What we found when we did the protein analyses was that Pf4 was uniquely elevated in all three categories of patients with lymphatic disease,” Rockson said. “It very clearly established that lipedema has the same biomarker.” This biomarker could also be useful in investigations into a variety of other diseases in which researchers have begun to suspect lymphatic dysfunction plays a role, such as Alzheimer’s disease, heart failure, glaucoma and diabetes.

The discovery of this biomarker also now creates potential for a blood test to diagnose lymphatic diseases in outpatient settings, Rockson said. Current methods of diagnosing both lymphedema and lipedema involve invasive and expensive imaging procedures and aren’t often used. A simple blood test could be a game changer, he said."°




For patients with lipoedema that is currently misdiagnosed as obesity, this could be significant in terms of recognition if not treatments yet.

Will be interesting to see if it throws any light on the possible link between EDS and lipoedema, and then any genetic basis for hEDS. My own diagnosis for hEDS came about after the Consultant Lymphologist looked at the results of a lymphoscintigraph which clearly showed defective lymphatic function and referred me on to a geneticist. The hospital is also looking for a genetic marker for lipoedema.

 

That sounds like a really important step forward, @Binkie4 – it must be quite hard enough to live with these conditions, without the added insult of medics writing you off as 'just' overweight.