Lipomas That Don't Hurt?

Dercum's Disease
#21

Mine developed after having two c sections and as hard as I tried it would never go away or “deflate”…Now I know why…I had lipomas as early as 16 yrs old but didn’t know what they were…I still have the first one I ever got but now along side is a companion…

The first one I can remember was above my eye that appeared after being thrown from a horse and having a head injury(I had a gash above my eye too that had stitches )then the flab and more lumps appeared after having my kids…Both were c sections… Once a Dr told me I should have it removed as it could cause problems in my back and internal organs(the weight of it pulling everything downward)…then I had three removed when I was 40 and thought nothing more about it and started at 43 having severe menstral problems and the Dr said I was starting menopause…well it got worse about 3 yrs ago and I started having severe stomach pains and found a huge hard lump in the middle of my stomach and a whole lot of lumps…

I did some research on lipomas as that is what the surgeon told me they were and found DD…everything that had happened to me and was happening to me was a match…I am so glad I decided to research on my own or I would never have found out the true cause of my misery…

#22

That makes sense to me Brennie… I hate my little flab flap, LOL, that sounds funny to me “Little Flab Flap” sounds like a pop song from the 50’s! I should just enjoy it now since it will probably get bigger.

I’m glad I did the research on my own too! I would be in a looney bin diagnosed with psychosomatic pain if I listened to my last doctor.

#23

In my case, it’s the huge scar. The fat apron just folds over that. I was young when I had my hysterectomy and maintained a fairly flat tummy through diet and exercise for years. The apron has just grown in over the past 5 years or so.

Hugs,
Pamela

#24

Hello Everyone, I never had a hysterectomy nor any surgery that would cause my belly to develop this flap of fat…I never had any children either so I must assume mine is DD and this is how it works, I looked up an item on Madelungs and it showed a black and white research photo and I have those areas of fat, the belly, breasts sag and the upper-under arm flab as well as the back folds…what are ya gonna do? I wear comfortable clothes and smile like I’m the most beautiful person on earth and people say to me, you look so great today you must be feeling ok. Right now I’m 5’ 3" and weigh 162 lbs., always having been near 130 in the past, these last 5 years I have seen a gradual accumulation of fat and lipomas and flab, flab and more flab. My abdomen is larger than my hips and the same size as my chest, tho my actual waist is 10 inches smaller than my abdomen…it is like a tire sitting there…My inner thighs too are flabby and getting larger and more painful yet another sign of Madelungs…We sure are very much alike. My best to all of you and my biggest hugs ever. Bev

#25

I just had 6 lipomas removed, 4 from my arm, 1 large one on my forearm, 3 on my upper arm, they were beady types. two large ones from my hips. All hurt. I left the ones that didnt hurt alone. I have to go back to get my other side done.

#26

Geordie…I did not realize you were getting surgery. I hope that you are OK. Keep us posted on how you are healing. Maybe Dr H can get some of your tissue somehow for her research? I asked my doctor last week if I could get some out to send to her and he said more would just grow in their place and he would not advise it. I am still thinking about it as the ones on the side of my upper leg are so painful. Lady Mary I have 100 pounds on you! Can you even imagine? And it is mostly hanging in my belly and from my upper arms. We probably would have the belly even without hysterectomies but mine looks wierd with the big dent in the middle from the scar. We are sisters under the skin! Hugs, Grandma Sylvia

#27

Ladymary and Sylvia…I have you beat too. I am 304 lbs. I gained 4 more in the past month. I think that is from the low carb diet that isn’t working. My lipomas are huge and my doc said that I am “classic dercums”. I am posting pictures today online for members only. I am not trying to be sexy, lol… I just want a reference for someone who doesn’t know how our fat hangs. I suggest all of us to do it. I am also going to put it on my website too when it gets going. I decided this morning that I am not going to be ashamed of my fat. It’s mostly lumps and that’s my disease. If I am going to own my disease I have to own the fat too.

#28

Suri, you should also look up Lipedema. I have it and I have that “body type” too.

Hugs,
pamela

#29

Like I have told everyone many times before…you need a diagnosis of depression along with the DD in order to get SS disability. They will deny the first time…they always do…then apply again…they will send you to their own psychologist who must substansiate that you have depression and probably approve you. It is better the older you are when you quit working. Hugs, Grandma Sylvia

#30

You have a great attitude Christine. I love the idea of photos. That is something that is needed on the web. When I first started searching I tried to find photos so I could compare what I look like to dercums patients. Maybe one day I will take a photo of my big fat legs. I would be too embarassed to post a full body shot, but I am thin in some places but getting bigger and bigger all the time in my belly and legs. I am so disproportioned it is unreal. My collar bone sticks out and I look like a thin person on the top, but an overweight person from the belly to the knees.

I think there is a HUGE lack of websites about dercums. There are the few pages with plenty of info but some of it contradicts other pages. I think websites with info and personal stories is needed because each case can be different.

#31

Christine…just don’t go on the Atkins diet. My husband lost 30 pounds then gained 60 that will not go away on it. He had maintained his weight for many years until he went on that diet. Now, I had to buy him all new 3XLXXT clothes! That is the attitude…I will own my fat too! I have never been over concerned about my outside appearance or the external appearance of anyone. It is after all just “Skin Deep”, as sung by Buddy Guy tonight on Letterman. Boy! I love the blues…it is my music. Gotta love my suffering too! Hugs, Grandma Sylvia

#32

I was put on the atkins diet by my doctor…told him that it wasn’t for me. should have never listened to him, but then again if you don’t they get mad at you.

#33

Hi Christine and all, the photos are a very good idea as we can see and I did see what DD does or can do. Thank you for sharing…hugs to you all. I tried to get into the subject “hip pain” but a blank screen came up, anyone else have this problem?? Another time I tried to get into my own subject matter and it too came up blank…Thanks.

#34

Thanks Pamela about the info on Lipedema. I will have to ask my new doc about it. I do see some similarities in the description, but a lot of differences too… so I don’t know. I hope this new doc of mine will show an interest in the future (I saw him for the first time yesterday and he acted like what I am used to, giving me that look that says he thinks I am crazy. He looked at the info I printed out, but only read the title “dercum disease” and said, “I never heard of this”. I explained it to him while getting that look… then he just shut the papers in my file and never read anything… Oh well)

#35

I have to add my 2 cents about the Atkins diet… I have a brother and sister in law who went on it. They lost so much weight and she was skinny as a rail, but as soon as they stopped the diet they put the weight back and so fast and then some… they both are HUGE now, much larger than when they went on that diet.

#36

Suri, if he’s never heard of DD, he probably won’t know what Lipedema is either. He may think you are talking about Lymphedema. There are several types of Lipedema. Mine used to stop at the knee, but it is moving down my calves now. You may need to find a new doctor, at least one who is willing to learn.

Hugs and spoons,
Pamela

#37

I know – this new doc of mine is not very promising. I may have to find YET ANOTHER ONE!! I am so SICK of changing doctors! I think I will wait until the next time I have to see him and give him one more chance… if he shows no interest in learning about things and keeps saying “never heard of this” I will move on. I am just so tired of this. I see the pain management doc next week. If he isn’t helpful and says “never heard of this” without reading what I bring I think I will have a huge sob session and then I will have to start over. I sure hope that doesn’t happen. Oh well, if it does I will just keep moving on – I feel strong and able to keep pushing (but I do have short crying spells). BUT if I don’t do it no one will – I have to keep fighting for help.

#38

you should get somewhere with your pain doctor, my sister seen one first and was diagnosed with fibro, I only wish I had followed her route, as with DD we dont get any help if we become incapacitated, but we could with fibro. fingers crossed for you.

geordielass

#39

there is some research ongoing at the moment, and its based on that fibro is the early stages of DD. who knows? eh! We have to sit and wait for all the research to prove itself.

#40

SuRi… I hope this doctor shapes up but if not…most of us had to go to multiple doctors to get a DX. In my case it took 37 years! But part of that was my fault…I only went to a new specialist about 5 times during that time and I went along with the fibro DX which of course they said was just something fat, depressed, neurotic women get. None of them ever checked for or asked about lumps. I do indeed have fibro also. They never acknowleged fibro as a disease until lately when they found that Lyrica might help and they can charge a fortune for it.I think the drug companies pushed the medical community for that acknowlegement. Maybe they will “discover” DD when an expensive drug is developed. Ah-ha moment. I will email the manufacturer of Lyrica and tell them it helps DD! Why settle for a doctor who stinks? That would be like marrying the first guy who asked you!

Glad I don’t have any stocks today! Hugs, Grandma Sylvia