I’m a 37 year old woman of four children. Eight years ago I started to notice my body was in pain a lot. Slowly, year by year, that pain got increasingly worse and other symptoms began to follow. There was such major swelling, to the point I couldn’t bend knees. Seemingly overnight, I went from 120 lbs to 190 lbs. Today I remain at about 150 lbs and can’t seem to get under that. Chronic migraines, heart palpitations high blood pressure pulmonary hypertension my memory and concentration is very low I haven’t been able to return to my job that I loved and worked since 1996 all because of this disease.

There is many more symptoms too many to list but the one symptom that finally got me a diagnosis after all these years is all the hard nodules all over my body. These nodules all ranged from a grain of sand to as big as a golf ball in the adipose tissues.

The benign tumors are what causes me extreme pain 24 hours a day. I’ve been in pain so long I have forgot what it feels like to live without pain. Between crippling pain and fatigue I’ve had to miss out on a lot of my kids lives. This is probably the most difficult part of having this disease I once was super mom flying from one activity to the next and now I’m a mom that sometimes can’t get out of bed for a week.

It took eight years to get a diagnosis.  It took persistence on my part even when dozens of doctors and specialists threw their hands up, with no idea what could be wrong.

I had to push through even when they thought I was crazy , or stressed or just needed to go on a diet. But one day I found a doctor that knew what I had, she was amazed to see someone that had this and she quickly got me in to see the only specialist for this disease in the United States. Dr. Karen Herbst confirmed my diagnosis and then some.

She said I have rare genetic mutation form of Dercums, connected with Ehlers Danlos and vascular disease and lymphatic disease with scarring with secondary lymphadema. So was diagnosed with multiple mutations this was total information overload but now I know I wasn’t crazy and so thankful I stayed persistent for a answer. There is no cure for this and it is a progressive disease but trying what I can to help improve quality of life , stop deteroation of my muscles any further and to now keep pushing until more people become aware so that this can be studied and find some relief for myself and others. I don’t want to see any more mothers at the age of 37 applying for disability with this ugly disease.

17 thoughts on “An Inside Look: Dealing with Dercum’s Disease”

  1. Helen says:

    Oh my gosh! I have Ehlers Danlos and Dercums too. My physiatrist (sports medicine and rehabilitation Dr) diagnosed me with Dercums. I suddenly had trouble with my weight too. I didn’t know that it could be related to EDS.

  2. Denise West says:

    Validation is so important for us Dercums people, it takes one less mountain to climb. To be met with blank faces, patronising words and most times disbelief from the medical profession makes our life so much harder

  3. Stephanie says:

    I have Dercums, EDS hypermobile and psoriatic arthritis as well. Dr Herbst diagnosed me as well after being sick since a young age I was diagnosed at 29 in April 2015.

  4. Derrick Anderson says:

    Can some one refer me to a doctor for Dercums disease in Naples Florida? I can’t find a Doctor down here. Help please. Derrick

  5. Lisa says:

    For Derrick Anderson —
    Dr. Hussamy, Vero Beach, FL
    Dr. Fisher, Dermatologist at WFL Medical Center, Pensacola, FL
    Dr. Tara Huguenin MD Rheumatologist, Sarasota, FL or Englewood, FL – a patient was told ~ 9/2015 that this physician “doesn’t do anything with DD”
    Dr. Jerome Vincente MD 115 JFK Drive Atlantis, Fl (palm beach county) 561-967-2200

    Hopefully one of those docs will be accessible for you.

    This is from the FDRS Doctor Directory: http://www.fatdisorders.org/society/doctors/doctor-directory

  6. Christine says:

    I think I might have dercums – it seems the pain is mild and comes and goes, but I do have the nodules allover. This started suddenly 6 months ago. I have a 1 yr old and 4 yr old so just worried about not being able to take care of them. But so far it’s not really affecting my life much other than making me worry about the future. Any thoughts or suggestions?

  7. Can anyone talk to me about Dercums in the face and around the ears? I’ve had this for years now, but just diagnosed this last May. It has since exploded in my body like confetti. I understand Dercums, but is anybody going through this in the face? And what do you do to help yourself? Thank you. Julia

  8. Liz Marchand says:

    I also have Dercums on my face and head as well as other parts of my body. See the web page of Dr Karen Herbst . She is the only one doing research. Based on turning my doctor to her, I was able to get a compression pump for my arms and legs that reduce the swelling in my face as a side affect. Als physical therapy for lymphatic drainage. I think that eventually I may need surgery as one of the lipomas is half in and half out of one of my eye-sockets. It’s starting to push my eyelid down. To help with pain start massaging the lower neck just above the collar bone and then work your way up to the face. Push the skin down toward the neck over and over.

  9. Bob says:

    Wow, the writer was almost telling my story (except that I’m a bit older and a dad). Regarding Dercum’s on the face, yep, everywhere — top of head, face, back of head, neck. It has been especially bothersome around and below my ears for years.

  10. Bob says:

    You probably do have dercums (or a related adipose tissue disorder). I first noticed a few tiny lumps while I was still in grade school. In my twenties, I got more, still just in certain areas, like my chest and lower abdomen. But now (50s), they’re growing everywhere, down to the tips of my fingers and the top of my head.
    My recommendation for you is to do the things you want to do in life before you get any older. I used to be quite energetic, but now I just watch the world go by (in pain). I’m glad about some of things that I did in my youth that others thought I should put off till old age. The way it is now, if I haven’t done it already, I’m not going to.

  11. Christine says:

    I’ve been trying to manage my symptoms by staying active and really managing my diet, doing the auto-immune protocol seems to have helped for now. It’s been just over a year since the lumps became apparent and pain has decreased, and I’m hoping for the best. Still have no diagnosis or anything, my doctor is not at all concerned. Should I push on for diagnosis or just deal with what comes? What is the author referring to in order to help “improve quality of life and stop further deterioration of muscles”? Any tips?

  12. Deborah says:

    I have Ehlers-danlos Syndrome and believe I may also Have Dercum’s. I need to find a doctor near Tampa FL

  13. Diane says:

    I’m wondering if I have Dercums. I have lumps by my ribs on both sides that are painful and sore feeling. Sometimes I can just move or twist and they hurt, but not all the time. I have them in. Y abdomen to and arms. A year and a half ago I half ago I got hypertension, tachycardia, then 6 months later I was told I had Hashimoto’s thyroiditis, but my blood test levels were in range for hypo thyroidism. I went to my regular dr. And told his these lumps hurt and he told me to see a surgeon. They can cut them out, but there is a whole clump of them by my right rib that hurts the most. They don’t always just hurt though. Is this how it starts?

  14. Christine says:

    That sounds like mine except they also spread to stomach and thigh areas. I feel like stress makes it worse, and my diet has to do with it as it has improved as I changed to eating paleo or AIP. Also going to see a TCM dr so hopefully will see good results. Mine hurt only occasionally now.

  15. Robin Wilk says:

    Looking for a Doctor near Poplar Grove ,Illinois.

  16. Robin Wilk says:

    Looking for a Doctor near Poplar Grove ,Illinois or what kind of Doctor do I see ?

  17. Regina says:

    I think I may have Dercums disease. Has anyone recently filed for disability and won. I would like to hear about it.

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