Hi I am Mandy from Australia and I am wishing to see if anyone else has Dercums Disease?
It is very rare here and no support groups.
It would be great to meet new people that have this to help others and find out more on whats out there to help..
Adiposis dolorosa, also known as Dercum's disease (sometimes called Ander's disease), is a rare disease characterized by multiple painful lipomas that arise in adult life.The fatty tumors are most often located on the trunk and limbs with sparing of the face and hands.
The pain in fat and skin can be very intense, and can be described as aching, stabbing, smarting or burning. Swellings consisting of irregularly shaped soft fatty tissue deposits may occur in many areas of the body. These deposits may spontaneously disappear, leaving hardened lumpy or rope-like tissue or pendulous folds of skin.The pain is spontaneous and increases powerfully even at gentle touch, and massage can feel unpleasant. Some affected individuals may experience depression, lethargy, and/or confusion.
Surgical excision of fatty tissue deposits around joints (liposuction) has been used in some cases but recurrence is common.
Intravenous infusions of the local anaesthetic drug lidocaine may give temporary relief from pain. Another analgesic drug, peroral mexiletine, may also be effective in eliminating pain for variable periods of time.
Hope you find this to be of use to you.
At the age of 20 i developed minor Dercum's disease (not knowing it yet), around my 35th birthday I started getting a lot of experience with all known phenomena of that. On my 40th I got a period of great stress in my life and this was the trigger that Dercums disease in my body made a terrible ordeal.
After a year of visiting various skin specialists in scientific research hospitals the conclusion was that the skin specialists had no idea what to do nor what is the cause. The only conclusion is that my fat create's lipomas and is irritated and is lumpy.
The terrible pain is not aknowlegded and the cause is sought in the psyche.
After much consideration I decided to tackle it myself.
At the cosmetic surgeon, I had 4 sessions (under a general light anesthetic) and over 20 of the most painful tumors (lipomas) were removed, this may make me saved my life because I was really desperate for the pain and turmoil that this caused.
Gradually I read on the internet by many people that the link was established between Dercums disease and a gluten intolerance and also a relationship between stress and Dercums. Stress causes adrenaline which on the long term creates cortisol which acts into the already weaker and irritated lipomas and fatty tissues.
Dercums appears to be an autoimmune disease, and the statement that a gluten-free diet for this may work to me seemed very plausible.
Certainly if you look at the way the body tries to isolate the gluten in lipomas and how adipose tissue is irritated by the reaction to gluten intolerance in the long term.
This scenario gave me hope on an healing approach of Dercums Disease!
I started with a gluten-free diet and this appears to me an important part of the solution.
Another part of the solution is in stress reduction, for this I use L-Triptophane. This is an amino acid that provides stress reduction and thereby improves sleep.
I also took sedatives and derivatives of L-triptofaan but this gave no effect to me.
I also want to mention the prevention of cold on the body, do not go outside as temperature drops below freezing point in too thin a coat or pants, this is making the fatty tissue extra irritated.
I find it absolutely incomprehensible that the specialists in this field the above causal relationships have not been studied.
Apparently it is of insufficient commercial interest to present this group of patients to help improve their quality of life.
The solutions i have found do require an approach to your lifestyle, you must have the energy and will to pick up. For me i found pretty alternatives to bread (gluten), and other allergens such as alcohol and cigarettes (note also Cannabis, It also contains gluten and therefore is not a valid painkiller at all for dercums disease!, Do not forget that there are also gluten in beer!). Alternatives I have now found in, for example chocolate, nutmix, yogurt, fruit, potatoes, vegetables, meat, rice etc.
I really hope I can help others with these insights.
I also want to convey the message that there really is hope and that by insisting you can approach it and you get a full quality life recover.
You can overcome 80% of the issues coming with dercums disease.
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