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03/03/2010 02:27 AM


Posts: 2
New Member

I am 41 y.o. and believe that I have Dercums. I have developed extremely painful lipomas mostly on my legs, knees, buttocks, shins, and ankles. However, I have few on my arms as well. I began developing the large, painful lipomas about two years ago. During this time, I have gained 50 lbs and developed an extended stomach that leaves me looking perpetually 8 months pregnant. Initially I started taking Ibuprofen, but soon was taking up to 10 a day and never really felt any better. I stopped taking the Ibuprofen and now choose to just simply live with the pain, because I cannot bear the thought of developing an addiction to pain medications. I have not gone to my Physician to get formally diagnosed for many reasons.

•Possible future denial of Health Insurance

•Possible future denial of Life Insurance

•Fear (after reading the horrible stories of Dercums patient trying to get an initial diagnosis)


…and the list goes on.

Consider this entry my first tangible attempt at acknowledging that I have Dercums. Some of my other symptoms include:

•Extreme skeletal pain (arthritis in the joints)

•Restless leg syndrome

•Itchy skin (especially on the legs and ankles)

•Psoriasis on the ankle

•Severe numbness in my hands and fingers

•Fibrosis of the breast

•Severe cellulite on legs and arms

•Constant fatigue

Until 2 years ago, I was very healthy and had absolutely none the symptoms listed above except for:

•Restless leg syndrome

•Fibrosis of the breast

•Mild cellulite on legs

I believe that somehow Dercums may have been triggered by my last pregnancy. It was a challenging pregnancy and I had an epidural for the first time.

I am glad that there is someone out there that will read this, but I am sad that most likely it will be someone suffering just like me.

Post edited by: KimS, at: 03/03/2010 02:29 AM

Post edited by: KimS, at: 03/03/2010 02:31 AM

Post edited by: KimS, at: 03/03/2010 02:32 AM

Post edited by: KimS, at: 03/03/2010 02:53 AM


03/03/2010 08:42 AM

Hi Kim!

Welcome to the group! I am so glad that you found us and joined us! It has been the best help to me!

From the symptoms you describe, it does sound like Dercum's is likely. There are some other things to rule out so you might just ask your doctor about some of the symptoms and get those checked. Mine had already checked me for RA, lupus and inflammatory arthritis and has since checked for Cushings. Dercum's is like fibro - determined by symptoms and lack of other diseases.

Yeah, getting diagnosed is tough. It can be very demeaning. We are all here to help you. You also can ask if any of us are near you and can recommend someone who is familiar with it. And of course there is always Dr. Herbst in California who is the only U.S. authority on it.

I have nothad any impact on my health or life insurance. Has anybody else?

Glad you are here but sorry it's for the same reason!



03/03/2010 03:57 PM
Posts: 1235

Since DD is not recognized by many doctors, I don't see it being a huge impact on health or life insurance. I am 39 and in the last 10 years I have been tested for everything under the sun and have very rarely had any issues with insurance.

Like Diane says, you are best to get the tests for everything else out of the way just to make sure it isn't something that may be treatable. I know how you feel though because a year ago when I came across the information on DD I was floored. Reading down the list of symptoms was like reading every complaint I had daily.

Best wishes to you in your search and remember you have people you can talk to about any of it. I felt so relieved when I found out I was not alone. I get so upset that so many people have gone through the same things. I don't wish this on anyone but, on the other hand, it is good to have people who understand.


03/03/2010 06:34 PM

Janet, I am so glad you are in this group! You say things so well! I was exactly the same when I found it and read the symptoms. I had been having new and odd symptoms for a while and knew something was going on but had no idea what. Got the same "lose weight and exercise" from the docs. When I started bruising and noticing lumps all over, I googled and found Dercum's and reacted just the same. It was like "Oh my God.... that is ME!"

I've not had any problems with insurance either and my insurance company actually mentions it on their site. But I don't know how he is coding things either. Since I also have fibro, he may be putting that as primary.

Yep. We don't want to be here but we're awfully glad to have this group here with us! They saved me when I first was diagnosed. I hope we can also help you.



03/04/2010 08:21 AM
Posts: 1015

Hello Kim,

Welcome to the Dercum's Group. You certainly do sound like you could possibly have Dercum's Disease.

I hope you find this forum helpful as I have. The people on her try to be helpful and are some of the nicest people I have met.

You said you are living with the pain. Where is your pain at? It is mostly from the lumps? Do you also have Fibromyalgia?

Keep in touch, good to hear from you! Celeste.

03/04/2010 09:59 PM
Posts: 2
New Member

Thank you to everyone who responded to my posting. I overwhelmed by your thoughtfulness and encouragement!! Following are my answers to Celeste's questions-

Where is your pain at? The lumps located around and behind my knees are the worst. My thighs and buttock a close second.

It is mostly from the lumps? At first the pain was limited to the lumps, but recently I developed arthritic (skeletal) pain in my shins and ankles.

I used to love getting messages, but stopped after I developed DD, because I was scared to death to be touched. However, my daughter bought me a gift certificate for a massage for Christmas and convinced me to give it a try. I made an appointment in January and told the masseuse about my health problem. She had never heard of DD, but had many clients with FM and suggested light broad strokes. I was surprised by the fact that the massage not only didn't hurt, but was very pleasant. I plan to go every month (massages are reimbursed by health insurance as long as I write on the receipt that the massage was to reduce pain). The reason that I was surprised is that when my cat accidently walks across my lap I literally feel I'm going to faint in pain.

Do you also have Fibromyalgia? At first that is what I thought that I have FM, but the symptoms weren't adding up. The lumps (some pea size, some walnut size) are located mostly on my lower extremities. However, most of the lumps seem to be fusing tighter and becoming a thick tissue mass. Also, I have develop a couple lumps on my forearms and under my rib cage.

I did go to my doctor for an annual checkup last November. At that time, she ran a full CBC and checked for everything. I showed her the lumps and she said everyone has those and that she couldn't really feel anything anyway. I cannot understand how she could not feel them. Anyhow my lab work came back normal except that I am severely anemic. Further testing showed that I have iron deficiency anemia. I now take an iron supplement daily.

Again thank you everyone!


Post edited by: KimS, at: 03/04/2010 10:02 PM


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