The primary symptom of Derecums Disease is lipomas, or lumps as some like to call them.
Lipomas are made of fat and Dercums Disease is a fat disorder, often accompanied by lipedema and or lymphedema.
How normal are lipomas?
Lipomas are very normal and many people live with them, without ever really noticing them. Normal lipomas do not hurt (other than occasionally) or make any difference, for people without Dercums Disease. Some people even have many lipomas, without having Dercums.
Another possible reason to have many lipomas are Multiple Lipomatosis.
About 1% of all people have lipomas
What do lipomas feel like?
Lipomas feel like hard lumps under the skin. This can be very frightening the first time you notice them, because we all know that lumps should be taken seriously.
Lipomas can be located very deep in the body, but the ones near the surface will be a little “movable” if you grab them with two fingers and push a little to the side and back again. It is because they are located inside the fatty tissue, that they can be moved around – other types of tumors or lumps, cannot dislocate like that, so this is a good indicator that you have a lipoma.
From inside lipomas are only feelable if they cause pain or discomfort. Normal lipomas will not be noticeable and many people don’t even know they have them.
Are lipomas dangerous?
No lipomas are not dangerous or cancerous, but you need to see your
practitioner to know if it is in fact lipomas you have.
For some people with Dercums Disease lipomas can sit so tight around the lower part of the rib cage, that this can cause difficulties breathing. If you start to feel pain when breathing, please see a specialist about getting the lipomas removed. Removing lipomas in Decums patients, often cause new ones to grow, so it has to be carefully planned.
Lipomas and Dercums Disease
Does lipomas hurt?
Lipomas hurt when you suffer from Dercums! This is how most people even know they have the disease. They do not just hurt a little, they can hurt really really bad. So bad that some people lose the ability to walk or stand.
It is not only the lipomas that hurt, but also the fat tissue. In my case, I have some lipomas that hurt, and some that don’t, but almost all my fat tissue hurts.
My experience is, that with weight loss my lipomas become more painful. I have heard this from others with Dercums, and my guess is, that is is because they are secured in fat and with less fat, they will be touching harder parts of the body.
How many lipomas are normal?
It is different how many lipomas people with Dercums develop, but most of us have literally hundreds. I have counted near 200, they continue to grow and new ones occur every month.
What size are lipomas?
Lipomas can go from almost not noticeable, really big – so big that you probably do not think they are lipomas.
Most lipomas are from the size of a pea to the size of a walnut. My lipomas are almost all 3-4 times longer than wide, and comes in groups of 2 or 3.
Where are the lipomas located?
The lipomas can occur all over the body, but are most common in the fattiest parts of the body. I have the most on my lover back, thighs, stomach, breasts upper arms. But I do also have some on my hips, lower legs, shoulders, and under my shoulder blades.
I have heard of people, who have them inside their organs and under the feet. So literally, they can be anywhere.
I have one on my chin after I fell and hurt it earlier this year. It is not as big as in the photo anymore, but it does not go away and is the size of a pea. This is also common for people with Dercums, that lipomas occur after stroke or punch – not only in the face. The same goes for the heavy bruising, big yellow, lilac and blue marks are very common.
Here is a case report about a woman who has lipomas in her ankle: SienceDirect.com
What does lipomas look like?
People with Dercums are most often very overweight and it is, therefore, hard to see the lipomas. In my case they are visible, but I found a better case on the internet: Lymphatictherapy.
Here you can see the lumps clear and noticeable. It is very common to mistake multiple lipomas like this as cellulite, but when you know the difference, it is obviously not the same. The lumps are larger and if the lumps where not there, the skin would have been smooth. Cellulite goes “in and out” of the skin in a more diffuse way.
Different types of lipomas
- Angiolipomas are lipomas with a lot of blood vessels, they tend to be very painful
- Nodular lipomas can be very small (as rice)
- Big lumps of fat, so big you would not consider them lipomas
Do lipomas grow with weight gain?
Lipomas and weight has nothing to do with each other. You cannot lose weight to remove lipomas or diet in any way, that will make them shrink. It does however look like some types of food can make them less inflammatory, and this may seem as if the food makes them grow slower or even smaller. Read more about ketogenic food in this blogpost
Skinny people can get lipomas to, and having a low BMI does not prevent people from growing lipomas. The skinnier a person is, the more visible the lipomas are. Most normal weighing people with Dercums Disease are men, and men are much less likely to get the disease – That is why you will find literature, that states that Dercums Disease can only be found in obese women.
Lipomas usually grow bigger until one point, but sometimes they can continue to grow, to be more than 20 cm large.
My large lipomas are all fairly the same size – about 3x1cm with some that are much bigger, and a lot that is smaller.
How lipomas are removed
It is not necessary to remove lipomas, but if they hurt too badly or causes discomfort in other ways, you can have them removed. The most common way to remove lipomas is to perform a small operation in local anesthesia, but if you have many, full anesthesia can be necessary.
Cutting the skin itself will often cause new lipomas to grow, so this kind of procedure is not preferred if you have Dercums, but it can be necessary, and happily not all will have this side-effect.
Another way to remove lipomas are liposuction, which would be the preferred way for people with Dercums Disease. The problem with this type of treatment is that it is a cosmetic surgery, and therefore hard to get insurance to pay for. People with Dercums seams to have less relapse from liposuction than surgery, and often experience pain relief from removing the painful fat tissue.
I know that as we speak there is research going on, about making an injection that causes lipomas to “melt”. I hope this will be possible in the near future, as it hopefully puts a lot less strain on the dercums-body.