Dercum's Disease Support Group

Hello everyone. How do you all deal with the pain that goes along this disease? My doctor finally put me on morphine, cause nothing else seemed to work. My primary is at a loss, has any one tried different things for "treatments" cause I know there is not a cure for this disease! Any help would be greatly appreciated, thank you!!

I take 800 mgs. of Neurontin 3 times a day. Trazadone for night. I also take ativan for anxiety. I take many suppliments. if you check out lipomadoc.org she has recommendations. I also recommend taking those to your doctor.

btw...most of the suppliments are available at puritansale.com. This is the cheapest I have found them.

Thank you so very much for your suggestions. I am actually meeting and have an appointment to meet Dr. Herbst on Sept 9th. This disease has changed so much of my life, I am 26 and can't do the things my firends are doing or enjoy shopping with my mom anymore due to the pain. I have not been able to work for the last 8 months. Does anyone else work and what do you do that does not cause pain so much? Thanks for all of the help!!

I worked in a call center for a long time. That was way too stressfull. I tried another job as a manager. Again too stressful. My husband has decided it is just easier for him to work more. (Luckily he works from the home). I am lucky to have him. We recently "revisited" the idea of me going back to work. That discussion was quickly deflated when a group of storms came through. I think I need to find a place in this world where it is 80 all year long with no humidity. LOL I don't think that there is anyplace that exixts like that.

Good luck with your appointment. I was supposed to see her on Oct 7th but, unfortunately I don't have anyone to go to CA with me and I am not able to drive at this point from all the medication. Let us know what she says when you get back. I am really interested in hearing what she said. You are so welcome. Whatever I can do let me know.

Thank you so very much. So if I understand you correctly you do not work at all either? I have tried to think of jobs, but my pain and swelling is so bad, it seems impossible, but trying to stay positive everyday is a new day. I will absolutly let you know what Dr. Herbst has to say, I am so sorry that you have no one to drive with you, i understand the medicine thing, Luckly I have my mom to drive with me there. Is there any questions that you would like me to ask her for you?

Thank you that you are willing to do that. I am trying to find out if there is a link of schwannoma to dercum's. I can always email her, but if you are curious as well. Please do. Unfortunately, I do not work. My husband made the decision that our family was just better off to enjoy me when I am at my best instead of working me to death and then me crashing as soon as I walk in the door. I have decided to take on my own mission in life. I do feel that it has helped me feel more "useful". I am trying to make more awareness of Dercum's Disease. Want to help?