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.
Thanks for taking the time to reply, Kattamaki! Yes, the doctor I was referring to is Dr. Herbst. She advised my doctors and followed my case for about two years, and I participated in her survey/study. She hasn't been able to provide any answers about my swelling. In the recent months we've parted ways. But yes, she's the doctor I was referring to.
Thanks again!! :)
This is just my thoughts and opinion. As I have learned that you can also have other disorders or syndrome's at the same time that you have dercums. To me it sounds like you are in full blown Dercums. Swelling (causing different measurements in different locations is a sign of decums).
As far as you hair and finger nails being brittle could be an over load of stress, you should also consider the possibility of cancer. Some Lipomas that are also present with dercums can be cancerous. I have lumps, bumps, knots, masses which cause me to have multiple disorders. Soft Tissue disorder. Bursitis, Tendinitis and other soft tissue Rheumatic Syndrome Dercums' and Poly neuritis.
It's hard and time consuming but it seems like we have to be the one to show the doctors what are diagnosis is through research.
Try looking up one symptom at a time and hopefully your get to the point where they are all put together into one disorder.
Good luck and keep your head and faith up. I know it's not long before I will be confined to a bed. I have only had it for 2 years now and it seems to get worse monthly.
I have also been experiencing heat sensitivity. I had heat thermae in the last 3 weeks. It close to a heat stoke. Per my pain Dr. it's the Fentanyl.
Anyway I hope this helps some kind of way or maybe send you in a different direction to think about. Good Luck. Teresa
Thanks for the comments, Teresa! Yeah, my doctors have looked into cancer. So far, they haven't found any signs of it. I don't really have the type of Dercums that causes too many tumors. I've had some, but not as many as most people seem to get. Mine is more the type of diffuse mutated fat with just the occasional tumor.
As for the idea that swelling is from the Dercums, yeah, that is a possibility. But so far my case has been reviewed by two of only the handful of doctors to research Dercums in the past several decade, and so far neither of them have ever seen a Dercums patient with swelling like mine. Typically, in their experience, they said that Dercums swelling tends to be more localized and pretty much related to dramatic inflammation in one area. Like, for instance, if the growth is really extensive in one area or if a tumor's growing. With me, it's just plain everywhere. Literally, everywhere.
One of the doctors was Dr. Brorson, one of the doctors from Sweden who saw over 10,000 women with Dercums in Europe. So he's seen more people with Dercums than pretty much anyone else in the world, and he said that he'd never seen anyone with swelling like mine. So yeah, I guess it's a possibility, but I just don't think it's all that likely. There are too many aspects that don't seem to fit.
Anyway, I did want to say, you mentioned you're on Fentanyl. Are you still on it? If you don't mind me asking, is it the patch? I was on that a couple years ago and I just thought I'd warn you, a ton of Dercums patients - including myself - have had very serious problems with fentanyl patches because of the rapid temperature fluctuations that are common amongst Dercums patients. This rapid change in temperature can be exceedingly dangerous, because the timing of the drug release from the patch is partially dependent on heat. So if your body suddenly spikes in temperature, the patch can end up dumping a heckuva lot of narcotic into your system. This happened to me once and I very nearly overdosed.
My pain management doc ended up calling the manufacturer because it was so bad, and they urged us to stop using it because if there's any sort of intolerance to heat going on, or any sort of fluctuation in temperature - even minor - it can lead to very, very serious complications, even death. I was shocked, but I'm very, very glad I found out about that before I ended up with even worse of an overdose than I did.
Anyway, I just thought I'd let you know. Please talk to your pain management doc about that, I'd hate to see that happen to you too.
Thanks again!! And good luck to you too. If I can ever do anything to help with your own situation, just let me know, k?
Hi Heather I know this is a year later. However I am moved with compassion about your suffering from DD. I too have it...I just thought I would share what is helping me and maybe it can help you too. I am no more on Armour Thyroid, Narcotics, Lyrica, Cymbalta,Tramadol, the last was Plaquinel. I have not been fully diagnosis with DD even though I know that is what it is. I have Fibromyalgia, Crohns, Vasculitis, Hashimoto, Lupus, and Dercums...also with Thoracic Outlet Syndrome. Which can follow DD. Check out Dr. Karen Herbst Endocrinologist specialist..on youtube Dercum's speaks on Breathing techique due to Hypoxia low oxygen in the body and a contributing factor in Dercum's. Okay this is what helps so far.
1. Vitex chase berry....help balance out hormonal issue PMS, heavy cycles, etc. I have none of those at present but Vitex helps stimulate the Pituritary Gland of the Brain...It is the Master Gland. It helps with the Metabolism of the who Endocrine System...that would be hypothalamus gland, thyroid gland, pineal gland, adrenals, and ovaries. It has helped me with Chronic Insomnia...over 15 years.
2. HCG diet (homeopathic drops) Meat, Vegetables, and Fruit only Stevia the only sweetner for teas, and lemonade. Stops Inflammations and pain....lumps decrease in size most do, not all. Lost 65 lbs.
3. Water fasting for detoxification purposes...5 days water only. (No diabetics without doctor supervision) Every 3 months.
4. Dry Brushing and Trampoline for 5 minutes...I bought a portable Infrared Sauna, helps to release fat....will make where the lumps/masses more noticeable.
5. Resistant Breathing technique.
6. See what you are deficient in........me it was vitamin D and K. Took Digestive Enzymes, Probiotics./Seacure. Moducare, Nattokinase, and Serrapeptase. I am still learning about my body needs to function better despite the breakdown of it's function.
I want to try!!!
1. HGH Releasers... heard it helps shrink the lumps in those with Dercum's.
2. Beta Glucans....help with the Autoimmune diseases and build it up one's immunity. Cancer & Chemo.
3. Cod Liver Oil by Carlson....need high doses of Omega 3's. It's essential. Fat releases fat. Coconut oil & MCT oil are all beneficial.
4. Mushroom Science, Chaga, Full Spectrum Extract
I reason Dercums happens because there is a changed to our body's metabolic structure....The cause is important. The first time I saw a lipoma was after taking prednisone ( steriod pack). Which may be a contributing factor. Learning how the body chemistry is important to get the answers for a solution. Wish you all good Health!!!!
~DK~ any questions ***@****
"Although hormone-replacement trials have yielded some positive results (at least in the short term), it is clear that negative side effects can also occur in the form of increased risk for cancer, cardiovascular disease, and behavior changes."
"The product's leading promoter has been G. Gordon Liddy, the former Watergate conspirator who served five years in prison and now hosts a talk show syndicated to 160 radio stations."
One of the best methods for identify a high quality, safe and effective Beta glucan product is independent testing. Has there been any independent testing conducted on the product? If no then stay away.
I have no idea what has become of Heather. For a long time she had a website called The Dercum Society but I heard it had been hacked (I don't know when) and had to close it down. Would be nice to know how Heather is doing now, four years later.
I see you are from Iceland! Do you know if any other persons in your country also have DD or do you even have a support group? I have been to Iceland and love your country (although I would have problems living there all year round!)
Thank you for all the interesting links. Have you tried the RAD diet that was especially developed by Dr. Herbst for people with rare adipose diseases? If you would like any contact, also to other groups and DD people, I would be glad to help.
Wishing you all the best,
Hi. Your symptoms are exactly the same as mine. Do you have food issues? Interesting that your vegf level was high, mine was unusually low.
Come to find out mast cell activation syndrome plays a huge part in dercums. I was diagnosed with both disease by dr. herbst.
I know your suffering...try taking an antihistimine. I know it sounds to simple but you will be amazed how much it can help. Try allegra or claritin, they are hc1 blockers. If that doesn't work, try and hc2 blocker. I hope you are doing as well as can be. Good luck.
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