What is Dercum’s Disease, that strange disorder I speak of sometimes? This is a great description of the range it can cover and what impacts it.
Those people like myself who have Dercum’s Disease have an immediate physical extremely painful reactions and swelling, brain fog because of:
-Too much physical activity, and that level before pain happens gets lowered more and more as the disease progresses.
-Lack of Sleep
-Stress that overtaxes thinking and focus, sensory and creates torturous pain, including:
a) happy occasions.
b) Surprises good and bad
c) Being overstimulated and it doesn’t take much…(light, noise, so on)
d) Trying to do more than you know you can do.
This rare disease can be seen in people of all sizes and shapes. Sometimes the Dercum’s tumors are so large you can see them, others can be easily felt when skin it touched, others are smaller and hard to detect. Some have a mixture of all three. Comorbid issues can include cardiac and diabetic issues, brain fog, lipedema and lymphedema,
One day you are walking 3 miles a day, working as a caseworker in a stressful field with minimal impact from the disorder and then you notice a couple of painful lumps on your ribs and you feel like you have the flu all the time. Annoying, but you assume it will go away….another day you realize you have pain and increased fatigue that is totally interfering with all parts of your life. You no longer rebound back into feeling better.
The pain you feel is traced to additional lumps along the ribs, shoulders stomach, back, arms and hips. Getting to the mailbox is the best you can manage. You swear you are in the early stages of dementia. You forget things that are scary.
I know I gained 60 plus pounds in less than a couple of months with no dietary changes.
Then you find out that driving the car is a problem many days because you haven’t the energy or focus, plus even outstretching your arms to hold the steering wheel is too difficult to do for long. You have zero endurance.
Dressing bathing, cooking, all are difficult.
You become a recluse, can make no plans, and working with doctors is difficult because what you have they have never heard of it. The options given to you by the experts you travel to see, you try but none of them help. But hey, at least they have worked with it before.
So that is similar what many with Dercum’s Disease go through. Some, the disease progresses slowly, some progresses quickly,
I think mine progressed quickly because of all the elements of years of advocacy and social work.
I believe many have it and don’t realize it.
I have had the tumors cut out, they grow back. I’ve had them removed from along my spine, my ribs, my upper stomach. Every single time they come back plus bring some new friends. They now number in the hundreds throughout my body, from feet to head. And the other symptoms that go with it besides painful lumps are ridiculous.
Whole Food Plant Based, No Oil, Low Glycemic Index, Low Fat, Low Sodium though has been the best remedy. Any relief feels like a miracle. It’s reversed weight gain from Dercums Disease. That has been a moral booster and a moral booster has been greatly needed and appreciated.
This way of eating has had a wonderful impact on my cholesterol, blood pressure, and no more suspected tachycardia. Blood sugars are pretty good too.
It also has minimized the number of tumor in my stomach area. Very happy about that.
Worse thing I ever did for this disorder? KETO. I did two variations of it and it was crash and burn.