Did a bit of a search and stumbled onto this thread.
At this point, I am at a complete loss as to my diagnosis, as it *seems* like I may have Dercum's Disease. There is an enormous overlap of symptoms between Dercum's Disease and ME (including PEM). But I kind of wonder if Dercum's is one thing and it is reflected in the key symptom of lumps... and it has a high comordity rate with ME/CFS (not everyone getting these lumps have the ME/CFS symptoms, just a lot of the patients do.
But basically, in reviewing the ever so tiny amount of info available on Dercum's they believe that the lymphatic system 'leaks' and sends heavy amounts of 'bad' material to the cells, and that the body's ability to clean out the toxins and other things is poor... resulting in cells trying to 'subdue' the damage - they deposit fatty material in the area to try to feed the proteins that are supposed to be cleaning up the spill - only they aren't there or aren't working leaving the lumps behind.
TIe that to the theory that a lot of the PEM from ME/CFS is related to anaerobic energy production which produces too much lactic acid - hence the 'burn' we often feel before/during crashes.
When my lumps form, I feel a strong burning sensation in the muscle area before the lumps start to form. Eventually, the burn will subside slightly, but then there are painful lumps in that area left behind.
I tried to describe the 'burn' sensation - one way to explain it is to talk about the athlete pushing back his abilities, and how they'll experience the lactic acid burn in the muscles that will repair far more quickly than the patients with ME/CFS or Dercum's.
Another way, is it literally feels like someone injected me just under the skin with an acidic compound.
So, if I do have both, then it would seem that I would be having bigger issues than normal with lactic acid 'leaking' out of the system and poor clean up of the acidic substance. I started taking 1/4 teaspoon of baking soda in 4 oz of water (threw in some flavoring and salt since I need both). And within 30 minutes of taking the baking soda I've noticed a dramatic decrease in the 'burn'.
Still getting lumps, still getting pain... but the 'burn' drops right away. AND that's something I've repeated daily now for almost a week. It's definitely not fixing the root issue for me, but it seems to be able to help decrease the pain I'm experiencing. Managing pain isn't easy for me, so I'll take the little lift I can.
I thought I'd check to see if anyone else was experiencing the same thing or not.