- CASE FILE
14 years of episodes of severe pain, fatigue, sudden unexplained weight gain forming in small fatty lumps, post-exertion malaise
ABOUT THIS CASE FILE
14 yrs ago I was recovering from a spontaneous, bilateral Pulmonary Embolism. I had high homocysteine levels and Protein C Deficiency, most likely inherited from my deceased father (he died from a PE at 32). I was a 37 yo single mother with a 15 and 1 year old at home. I was healing well.
Then I wasn't. I couldn't stand without aid due to the severe vertigo, which lasted for 3 months. I had itchy/burning skin. Pain that would sometimes be in my thigh, sometimes in my legs, sometimes in my arm, sometimes in my chest. .. but mostly on my left side. It would literally be one minute my leg was stabbing and the next it might be my arm. My right side felt covered in thick layer of fabric which would 'deaden' the sensation of touch, wind, water. I'd taken B6, B12 and Folic Acid after my PE. And 5 years later I was finally diagnosed with B6 toxicity. Other than stopping taking it, the doctors weren't much help. I went to dozens upon dozens of doctors and was on the brink of bankruptcy because none of them could help. And I couldn't afford to keep chasing the cure.
I started to feel recovered. Had identified that I had homo MTHFR a1298c along with dozen of other genetic concerns related to digestion. So, I had started to take methyl-folate, methyl-b12, etc. I was gaining energy, I was losing some of the pain and some of the issues with my right side. I thought I had found the answer.
Then I didn't. I was under a lot of stress at work. And the pain started to return on my left side, only this time - it came with a lump, or two, or three. Doctors diagnosed me with angiolipomas. Only by the time I had gotten in to see a doctor - there were 20. There was discussion about removing them, testing for cancer. I started having so many lumps on my left arm, I couldn't count them, and sometimes swore there was one in a specific location, but couldn't feel it the next day. I circled each one in black marker. The next morning, several had shrunk/disappeared. Cancer doesn't do that. Angiolipomas don't do that. Exertion made them FAR worse. Just walking into the kitchen and heating up some leftovers would trigger a dramatic increase in the pain by hundred-fold. The doctors had no answers. I spent the next 3-4 months flat on my back 90% bed-ridden and when I was down - the pain wouldn't go away, but it wouldn't be in the 9-10 range. The entire body would get involved with pain from the top of my head to the bottom of my feet. Joint pain, muscle pain, itchy/burny sensation on the skin. Everything would 'lighten' if I laid perfectly still. Slowly, I started to improve. I would slowly gain my strength and stamina back, though I never quite new exactly when I was doing too much, and my body would temporarily take a step back. I had two more of these collapses... I'm still in the last collapse (if that's what it is and it's not now permanent). I currently have approximately 150-200 painful lipomas. Which one hurts worst tends to hop from one location to the other.
Regular pain medication doesn't work. I'm allergic to all opioids and everything else I could have didn't touch the pain. After my third collapse, I started taking gabapentin, which seemed to help me. It got my pain down to a 5-6 while I'm active. As long as active means mostly sitting, some laying. Mostly house-bound. I have a wheel chair and a rollator to use if I try to go anywhere, so I can sit more and put my feet up as needed. I'm not able to walk more than a block without incurring more pain. I'm not at the highest dose of gabapentin, but I reached a point of diminishing returns. I get terrible brain fog from it and am slowly weaning myself off of it.
I've developed a dozen or more new allergies I never had before. Though I've always been sensitive to chemicals, smells, perfumes and dyes.
Each time I collapse, I gain approx. 30-40 pounds in the first month. Every time I recover from a collapse the weight falls off within a few months. I'm overweight at 5'5" and 135 pounds when not in a collapse. RIght now I'm at 175 pounds.
I've been diagnosed with Dercum's Disease (adiposis delorosa). A rare disease that causes most of my symptoms. I've switched over to Mexilitine to treat the rare type of pain caused by it. My pain is usually down to a 3-4, with spurts of more severe pain caused by who-knows-what, and the slightest change in weather can send me back to bed-ridden before I've checked the weather forecast. I'm still mostly house-bound, unable to drive into the office, though I do still work from home.
There is no known cure. There's only one specialist even looking into research into it - Dr Karen Herbst, Arizona. There's little to no funding available, so they have been trying to fund-raise for more testing. They have a ton of leads, but not nearly enough researchers and funds to investigate those leads.
It's believed to be a connective tissue disorder, with a component of auto-immune response. They have verified that the lymph system is 'sluggish' - that might explain why most of my early lumps formed in areas very close to the lymph system.