As always, I can only speak for myself, but I have read a lot about other patients, and there seems to be a pattern in how we feel pain.
Lactic Acid feeling
Most of my pains feel like lactic acid after a long run or workout. I use to be a runner, and the feeling of lactic acid that sometimes occurred, describes my leg-pain very well. It is a constricting feeling, but it is not in the muscles, it is in the fat.
My lower legs can get really hard, probably from lymph, but that also feels like lactic acid.
No muscle strength
Especially my hands, back and legs can sometimes feel like I have arthritis (I don’t), but it is not in the joints or bones, it is in the fat and/or the inside of the skin. Even in my fingers, that are not fat, this is a common pain in the fat.
This type of pain sometimes hinders my manual labor, like writhing or other easy motions. I can often work through this pain and it seems as if it does not get worse from motion, but it can be debilitation at times, because It comes with a feeling of lack of strength and fatigue.
Pain in the lipomas
This is the most common type of pain when you have Dercums Disease, but I have heard of patients who do not feel pain in their lipomas. Some have lipomas so small, that it feels more like pain in fatty areas.
If you haven’t already, please read my blogpost about lipomas here:
The problem with lipomas is, that they often put pressure on the nerves, and this is for many Dercums patients a debilitating pain. Dercums pain can be one of the worst pains and is in the top teen of most painful diseases. I am lucky not to have that strong pains, but I feel with those who do. Many patients are not able to walk, simply due to pain.
I don’t have lipomas in my feet, but those who do, often talk about a feeling of walking on glass.
Migraines are for some reason very normal if you have Dercums Disease, and I have also developed this type of pain. Mine is with aura and often comes with dizziness. Migraine with aura feels like looking through a kaleidoscope and my vision is often blurred.
I don’t think the migraines are so bad as all the other pain I feel. If touching a hurting lipoma is 10 on a 0-10 scale, migraine is only 5.
In my country (Denmark) I was told by my anesthesiologist, that chronic pain is not something you would medicate. This is because it can ruin my life if I start using morphine and get addicted – which most people do. I know that many people living in the US or other parts of the world would have easier access to opioids.
CBD oil can be great for pain management at night because it also helps the sleeplessness. But I don’t feel safe using it all the time, and it works best if used every day. Maybe someday there will be valid research but until now, I don’t think there is.
I never tried, but many people talked about how lidocaine injection can ease the pain. If my pains get worse, this would probably be my first medical option.
Lymph therapy or lymphatic massage is another way to deal with the pain, in a nonaddicting way. Some patients just feel more pain from this. I have done some myself, and it helps me if my legs are rock hard from lymph.
Also, pressure garments are a fine way to do pain management, and you can read more about it here:
My best tips
My best tip is heat! I have a heating blanket, that I often put in my bed, and I use the heat in my car-seat very often, even during the summer. This can help with most of my pains. But I need to not having to do anything for at least an hour or two.
Another great tip I got from another Dercums patient is to use a dry brush. I bought a back scrubber for showering and used it dry. It gets the blood flow going, and somehow ease the pain in the fat – Not the lipomas – It is better not to touch them at all. A soft hairbrush is useful, but mine´s made out of plastic, and real hair feels softer.
Dercums or Fibromyalgia?
Many people with Dercums Disease are diagnosed with Fibromyalgia because doctors don’t know about Dercums Disease, and the pain can be similar. So If you think you have Fibromyalgia, or is diagnosed with this disease, but you have lipomas as well, then talk to your physician about Dercums.
You can read more about Fibromyalgia in this e-book (advertising link)