Dercum’s Disease- a Painful Existence
Approximately eight years ago I began feeling very ill. It started with some neurological problems, progressed to skeletal issues, and escalated to include my lungs and immune system. To date I have been diagnosed with the following at one point or another:
* Possible multiple sclerosis.
* Rheumatoid arthritis.
* Fibromyalgia.
* Trigeminal neuralgia (shock-like, stabbing pains in the right side of my face).
* Borderline diabetes.
* GERD (gastroesophageal reflux disease).
* Mild COPD(chronic obstructive pulmonary disease).
* Depression.
* Possible ankylosing spondylitis.
* Sleep apnea.
* Irritable bowel syndrome.
I have been through years of subsequent testing and treatments, none of which have helped at all. Because treatments for rheumatoid arthritis could make my possible multiple sclerosis worse, I am not able to take them. So I have been sitting, and suffering for many years. I became disabled in 2002 as a result of being in constant pain and being constantly medicated. All this was happening at the ripe old age of 37 and with two children still to raise. Feeling hopeless became second nature, although I was becoming a pro at not showing that to my family. I thought that life would just continue to go on that way and I had dealt with it. At least I had until I saw my primary doctor a few months ago and mentioned a new development in my health.
Over the previous few months before that doctor visit I had been noticing some painful lumps in my stomach and back. I also had some on the sides of my thighs that had been there longer, but I had forgotten about them. They hurt to be touched and felt like deep bruises. I recalled that I had even mentioned the ones in my thighs previously to another doctor only to be told it was nothing. My new doctor gave me a thorough examination in which she discovered hundreds of fatty tumors, or lipomas, just under my soft tissues all throughout my body. Every one she touched hurt significantly and she eventually stopped pressing and counting them. It was at that point that she told me I have lipomatosis dolorosa, or Dercum’s Disease. This is a very rare condition, but she had actually had one other patient who had it years before and she knew all about it.
So what is this rare condition? Dercum’s disease, also known as adiposis dolorosa or lipomatosis dolorosa, is a rare, chronic and disabling disease that often goes misdiagnosed or not diagnosed at all. The disease is characterized by multiple painful lumps or “lipomas” found throughout the body. These lipomas are considered benign fatty tumors and initially patients may be told that fatty tumors don’t hurt. Try telling that to a Dercum’s patient and they will immediately correct you. These lipomas are painful, very painful as they attach themselves to nerves throughout the body. Even slight pressure on one of these lipomas can cause significant pain. Many patients describe increased pain while wearing tight-fitting clothes or showering. Patients can and often experience pain while at complete rest without any pressure on the affected areas. Worth mentioning here is also the fact that Dercum’s patients don’t usually only have one or two lipomas, rather they can have hundreds of these “benign fatty tumors” at any given moment.
Other components of Dercum’s Disease are: extreme fatigue, weakness, swelling of the hands, skeletal pain, general obesity, depression, confusion, memory/concentration problems and dementia. There are other syndromes that can accompany Dercum’s such as fibromyalgia, sleep apnea, carpal tunnel syndrome, irritable bowel syndrome, slight to moderate gritty feeling in the eyes despite normal tear production, chondromalacia patellae, hip pain, localized tendonitis and tailbone pain. Many of the above mentioned symptoms and syndromes can be present in a variety of other more common diseases, and thus will more likely be attributed to them before they will be to Dercum’s Disease.
WHAT CAN BE DONE FOR DERCUM’S PATIENTS?
Although this disease has been recognized for more than 100 years, there is no known cause, cure or treatment. There have been a variety of theories on the cause of Dercum’s such as heredity, immune system malfunction, corticosteroid use, disturbance of endocrine function and hormonal imbalances. If you are doing your own research into Dercum’s you will likely read that it usually occurs in post-menopausal women. I can tell you that I have not yet gone through menopause and many others I’ve spoken to haven’t either. Nothing has come forth to substantiate any of these theories and no research is currently being done to find out what indeed causes this horrible disease. Various treatments have been attempted with no success. Some methods tried have been corticosteroids, intravenous lidocaine, traditional pain medications and anti-inflammatories, diuretics and interferon. Surgical removal of the lipomas has been done; however, the lipomas always grow back.
When I found out I had this disease I was naturally upset, but then I just became angry. I suddenly felt very tired of being sick and not being able to do anything to help myself. I decided to get proactive and I created a petition online to encourage the proper authorities to begin research into Dercum’s Disease. To date the petition has 475 signatures and is going strong. I am doing all I can to spread the word about this disease because it is my feeling that this disease may not be as rare as it’s thought to be. I suspect it goes undiagnosed or misdiagnosed more frequently than anyone knows. Judging from the online community of people with this condition, I think that’s a fair assumption. I hope I can help in some way to get research started into this disease. It may not help me, but it could help my children……….or yours.
