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Dercum's Disease Links
A painful existence
Dercum's petition
Living In Constant Pain
Thursday, 29 September 2005
And Now for a Little Background...........
Mood:  accident prone
After thinking about it for months, dwelling on it and procrastination in general I finally sat down to write my blog. As the title probably emphasizes, this weblog is a chronicle of my declining health. I wanted to log the events leading up to my illnesses, the long diagnostic process and the end result of living in pain 24 hours a day.

This is me, or at least it was me about seven years ago. I thought it might be appropriate to begin by showing you what I used to be before I show you what I've become. I was about 33 when this picture was taken and already having some health issues. I had begun having sudden, shock-like pains on the right side of my face and in my right shoulder at the same time. It felt like getting hit with a sudden bolt of lightening and was excruciatingly painful. I'd had this happen earlier in my life, once when I was 13 and again in my early 20's. It came on suddenly, lasted for less than a minute each time and then disappeared. When it started happening in my 30's, however, it was far worse. I reached a point where I was having several attacks of facial pain each day with each attack lasting anywhere from 30 seconds to 3 minutes. My primary care doctor recommended that I see a neurologist and after waiting for authorization from my HMO I did. This was the beginning of a very long journey of declining health.

After a very thorough examination by my new neurologist I was sent for an MRI of my brain. My new doctor wanted to rule out any tumors or irregularities of the blood vessels in my brain. When that came back normal the doc informed me that I had trigeminal neuralgia, which has been referred to in medical literature as "the most painful condition known to man". Well, that wasn't very reassurring. The condition is pretty much what I explained above....sudden, shock-like or stabbing pains in the face. The pain can be so intense that it stops you dead in your tracks until it passes. He put me on some anti-seizure medication to help with the symptoms, but there is no cure. Not long after that I began having more neurological symptoms, all of which pointed to the possibility that I was developing multiple sclerosis. I began having more tests to try to either verify or disprove the existence of MS, but the results were inconclusive for many years. I had a spinal tap that did point toward MS but no conclusive MRI's. I am currently listed as "suspect for MS".

After I had been seeing my neurologist for a little over a year I began having intense pain throughout my joints. This was a completely new thing for me and my neurologist thought I may have developed fibromyalgia. Fibromyalgia is a painful condition of the muscles that can cause widespread pain and fatigue. This certainly described what I was feeling, but there also seemed to be a lot of pain in the joints themselves. My doc ordered a complete bone scan which showed widespread inflammation in my joints. This led him to refer me to a rheumatologist and an ultimate diagnosis of rheumatoid arthritis AND fibromyalgia. The sad part here is, that isn't the end of my diagnoses.

During the course of my treatment for the above mentioned conditions I began having an onslaught of other symptoms that ultimately led to more diagnoses. The additional problems I picked up were: sleep apnea, gastroesophageal reflux disease, chronic obstructive pulmonary disease, hypertension and metabolic syndrome(pre-diabetes). I was a very difficult patient to treat for a couple of reasons. First of all, I could not take the traditional treatments for multiple sclerosis because the disease could not be confirmed satisfactorily enough for my insurance to pay for the treatment. Second, I could not take the newest medications to treat the rheumatoid arthritis because the side effects of those medications were greatly intensified if you also have MS. Talk about being between a rock and a hard place. All my doctors could do were treat the symptoms the best they could, which wasn't very good. I was always in pain and nothing seemed to help.

As a result of being in pain all the time, lack of sleep due to pain, extreme fatigue and sleepiness due to medication I became disabled in 2002. My ability to work had declined tremendously already because of my health, but it was official when Social Security finally agreed that I could no longer function in a working capacity. All my doctors agreed that the only form of exercise I could do was swimming, but even that was complicated. You see, people with MS are very sensitive to heat. It makes them feel completely exhausted and ill, so for the sake of the MS it was recommended that I swim in a cool pool. The only problem with that was, arthritis symptoms tend to flare up and feel ten times worse in the cold. Thus, it was the recommendation of my rheumatologist that I swim in a heated pool. Does this seem like insanity to anyone else but me yet? Naturally, you can imagine what this lack of exercise started doing to my weight. I'm not going to pretend that I didn't have weight to lose before I got this sick, but you can judge from the picture above and the one to follow that my weight greatly increased during this time.

This brings me to relatively current events. A few months ago I began noticing what felt like lumps in my abdomen and back. I'd feel them when I was showering and they were very painful. Then I remembered feeling similar lumps on the sides of my thighs that felt like severe bruises in the past. I had even mentioned them to one of my doctors but they didn't think it was anything to worry about. After feeling the lumps in my stomach and back I felt for the ones on my thighs again and they were still there, and still painful. I made an appointment with my new, wonderful primary care doctor and she did a detailed examination. She began palpating (feeling around and pressing) my stomach, sides, back, legs, arms, etc. and was counting as she went. She finally stopped counting and told me that I had literally hundreds of benign tumors called lipomas all over my body. In general lipomas are benign fatty tumors that cause no pain. Of course, I can't do anything the easy way so I had a whole different kind of lipoma. It turns out that I have a very rare disease called lipomatosus dolorosa, or Dercum's Disease. With this lovely condition a patient has multiple (usually hundreds) of fatty tumors that are on or around the nerves. This causes a tremendous amount of pain and disability. There is a long list of symptoms that go along with Dercum's disease and I can honestly say that I have every single symptom on it, which would explain a lot about my health decline over the years. The tumors in Dercum's can be removed, but always grow back and usually within days or weeks. People who have this rare condition are prone to gaining weight and not being able to lose it and there is no treatment for it. As a matter of fact, the condition is so rare that most doctors have never heard of it and currently no research is being done to find a cure. Patient's basically live in pain all the time with no hope for any improvement. It changes your appearance as well, taking you from an otherwise healthy-appearing person to an individual who looks extremely ill and obese. Here is what I look like now:

At this point I live my life every day struggling to cope with the pain. I am the mother of two great kids who are still in school, so I can't afford to be in a drug-induced haze all day and not being able to drive. I need to be available to them as a mom. I am pretty depressed most of the time because of my health but I put on a happy face to those I love because I don't want them to know how much pain I'm in. Every day is the same, and every day is pretty unpleasant.

Well, I suppose that's enough for an initial entry. The saga continues later.

Posted by krisissick at 11:02 PM EDT
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