Monday, June 26, 2017

Dercum's Disease

Most of the time, I'm crafting up a storm, but not posting because between overtime, family and work (and way too much time on Facebook and Ravelry), I just don't have a lot of spare time to write.

Well, all that 'busy' hit and I'm now relapsing. :-/

I've thought for a long time that I have ME/CFS and have had POTS (at least in the past, if not now). But I had two symptoms that just didn't 'fit'. One is my frequently dislocated ribs, not just sublaxed, but actually 'out' of place to the point of being dislocated. And the second symptom, my lumps... painful lipomas that would form, shrink, enlarge, disappear, re-appear, etc. Dercum's Disease, also known as Adipose Delerosa. The only symptom on the list of Dercum's that I don't have is Obesity. A rare disease identified in the 1800's by Dr Dercum, it only has a couple of doctors who are knowledgeable about it, none of whom is studying this disease exclusively.  The disease hasn't been redefined since the 1800's, but there has been a study that identifies that Dercum's occurs with all types of BMI's; which means that obesity isn't a defining characteristic.

So, apparently, Dercum's is it. The good news is that while my doctor is 'skeptical' with my Ravelry/google-fu and not willing to diagnose... he is at least starting to treat me with a couple of the recommendations that they have for this, and it looks like the pain meds are starting to help, It's not 100% yet, but as of today, I have finally ramped up to the basic Gabapentin dosage - 300 mg x 3 a day. And the pain is a bit more manageable. However, I am still mostly bedridden, but at least now the pain is more manageable.

I also found an alternative therapy, taking bicarbonate of soda (baking soda). I'm up to twice a day, 1/4 to 1/2 tsp in 2-4 oz of a sweet beverage (usually kool-aid), it's a bit 'chalky' tasting, but interesting enough, my body seems to crave it a bit now. When I start drinking my 4 oz; my body gives a very positive response and it REALLY helps with the burning sensation that comes when my body is forming new lipomas. I can't really tell if it impacts the number of lipomas or not. Just that at least some of the pain is eliminated... not all, but some. And some is better than none.

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