This is a bit long and complicated, but I beg you, please read and help if you can - my life may depend on it.
My name is Heather, I'm 24 years old, and I'm currently living in the Washington, DC area. When I was 19, I was diagnosed with Dercum's Disease by a team of doctors from the NNMC Bethesda & the NIH, & their diagnosis was later confirmed via tissue sample. You can learn more about the disease at www.DercumsDisease.com.
In short, Dercums mutates fat cells - they enlarge, replicate too quickly regardless of diet and exercise, and it's physically impossible for the body to generate enough heat to burn these cells off. Growth is exponential, so if left unchecked, it eventually overwhelm the cardiopulmonary system.
I was undergoing treatment for the Dercum's at the ages of 21 & 22; because the Dercum's growth was expanding at such an uncontrollable rate, I had 5 rounds of high-volume liposuction to remove the mutated fat. After the fifth surgery, I was back down to my pre-Dercums weight of 145/150. I was feeling fantastic, the intense pain caused by the disease was tolerable & controlled for the first time in ages, I was active again, & the growth was slowed almost completely.
I had one last surgery to go, but emotionally I needed a break. I went on vacation to Scotland, where I fell with my tailbone landing right on the edge of a slate step. We never could determine if the tailbone had broken or not, but as soon as that incident occurred, my body started swelling.
I came home from that vacation ten pounds heavier, all from swelling, which seemed to be contained to my face, legs, and left arm. Over the next three weeks, I gained another 30 pounds of fluid, still confined to those same areas. The swelling seemed to plateau for about two weeks.
But then I was hit with another three week period where I gained another 30 pounds. It plateaued again, only to be met with another period of rapid growth. Within a few months I found myself weighing nearly 120 pounds more than when this began, & it was all fluid. After about 60 pounds, the fluid spread to the rest of my body, & now literally every part of my body is swollen, including my breasts, my genitals, my face; everything. The fluid is so deep it's even shown up on MRI.
I've lost about 20 pounds of the fluid following some diet changes, where following some food allergy testing I eliminated everything from my diet that showed any increase in immune reaction. Other than that, nothing seems to have helped.
I've been to see so many doctors, so many specialists, that I've literally lost count. I've had a lymphangiogram of my upper body, but was not able to tolerate the pain to have a scan done of my lower body. There was no apparent lymphatic leakage. I had manual lymphatic drainage massage for a while, but with no apparent benefit.
The Endocrinologists tried putting me on multiple diuretics, but each and every one of them caused me to literally stop urinating.
I'm at a loss about where to turn & I'm about at the end of my rope. This has been going on for two straight years & the pain from all this fluid - on top of the Dercum's pain - is so intense that I literally am confined to bed. I'm on enough narcotics to put an elephant to sleep (methadone, dilaudid, and ketamine), & yet it only barely scratches the surface of the pain. My entire life has come to a complete stand-still &I feel like the world is just passing me by. I'm so frustrated that all of these doctors, some of them from the best medical institutions in the world, still can't come up with even a basic answer as to what's causing all this swelling.
So far in the intense battery of testing that's been done, only a few tests have come back with abnormal results:
- A Dercum's researcher in California ordered a VEG-F test, which came back with results 4 times higher than the normal range. But no one can tell us what that means, beyond that VEG-F seems to be some marker of inflammation & that no one has ever seen a result that far off the charts.
- The other one, if I remember right, is called a C4A test. It's commonly ordered in conjunction with the VEG-F, and like that test, this one came back with results 3 times higher than the upper end of normal. But again, no one can tell me what that means.
- My liver panel for the most part has been completely fine, although it did go up and down for a while. I don't know the specifics, it's just that one month everything appeared to be fine, the next month various aspects of it were elevated, and the next month it was back to normal.
- I've had repeated urinalysis where it returned showing a plethora of bacteria, but each time my Internist (whom frankly I don't trust, given that she still doubts my diagnosis of Dercums despite the fact it was confirmed independently) has dismissed these results as having been caused by an error on my part in performing a clean catch. I've been performing clean catch urinalysis since I was 11 years old, I know I did it just fine. And I find it a bit odd that two urinalysis in a row have shown pretty much the exact same plethora of bacteria back to back. That seems to be a pretty odd coincidence.
The only other important symptom I feel I should point out is my bizarre pattern of urination. I've noticed that, with no change in intake, my body switches every three weeks or so between very little urinary output, to a whole heckuva lot of urinary output. During the period of waning urination, I'll go maybe once a day and the urine will be intensely dark, concentrated, and foul smelling. During the period of excessive urination, I'll go to the bathroom nearly every twenty minutes, but not only is it urgent and often, it's also a great deal of fluid each and every time. That urine is exceedingly pale, with barely any color at all, but the color it does produce is slightly green.
Other than the Dercum's Disease, I have been diagnosed with a mild Arnold-Chiari Malformation, mild scoliosis, I had osteo-myelitis as a young teenager which resulted in the amputation of my left great toe when I was 16, I had a stroke in January 2008 following complications with a mediport implanted in my chest, and I suffered Decompression Sickness earlier this year after being subjected to an improperly operated altitude chamber (don't ask - really bad idea from a doctor I once trusted.) Other random things I've noticed since the swelling developed, just in case they might be important:
- my body hair seems to have lost most of its pigment, with my eyebrows being practically translucent and thin.
- my fingernails are exceedingly fragile, brittle, and have become ridged.
- the hair on my head has become thinner, seems to be changing color (becoming lighter all the time), and seems to fall out more easily than before, but not so bad it's coming out in clumps or anything.
- Dercum's causes sensitivity to heat, but this has gotten so much worse that if I'm exposed to temperatures above 70 degrees, I start to go into heat shock quite rapidly.
If anyone could shed any light on this, if they've experienced anything like this, or even if you know of a doctor who might be able to help - no matter where they may be - I would be forever - FOREVER - in your debt. My body is literally falling apart, yet I'm only 24. I want to go out, I want to be like any other young person, I want to go to college and have a life. I want to contribute something to the world. But for the past two years I've spent my entire life locked away in my room, confined to my bed, and so doped up on pain meds I feel completely incapable of doing anything productive. I need my life back before this fluid kills me. Please, please, I'm begging you, if you can do anything to help, it would mean the world to me.
From the bottom of my heart, thank you!