Dercum's Disease Support Group

this is my first post. i discovered dercums disease this year, and at least now i know what i have. Fibromyalgia was the catchall disease doctors said i had but nothing ever really worked. I have had lipomas for years but was told the dont hurt. My doctor sent me to a neurologist and he sent me to a cardiologist. my heart is fine and they have finally agreed to do iv lidocaine therapy. I think i am going to do it despite the risks. My nerves have been "tingling" for years. My skin hurts all the time, even my clothing and water hurts my skin sometimes. has anyone out there had this treatment. If so did it work, and did you have side effects.

Please let me know. I have been reading your posts and just decided to join.

Welcome kdifalco!

Most of ushave been downthe same road - it is a long one. There is another post going on about lidocaine - please rad all those replies. the benefits I got from using it for degenerative sisc disease far outweighed any concerns.

I wishyou well - you are VERY fortunate to have such up to date doctors who are willing to try this - they are hard to find!

Again - welcome! I hope you find this group as terrific as I have. it has helped me so much since I foudn it about a year ago.

ArtsyAnnie

Where do you live - if it is the US - what part are you in to find these doctors? (Don't need the name of your city).

Hi Kdifalco...Welcome to our group. We are glad that you found us. I know Annie has been interested in lidocane infusion treatment as well as other members. Please let us know if it helps you. I am glad your heart is good. We hope that reading our blogs helps you. That is why we are here so please jump in anytime. We value all of our members and strive to treat them with kindness and respect. Thanks for joining us! Hug, Grandma Sylvia

i live in michigan, i have had to do research and beg for help but they are finally willing to be proactive.

HI kdifalco!

I am SO HAPPY for you. I hope you get terrific relief.

Big hugs and blessings for the journey.

ArtsyAnnie

Hello and welcome to our group, I hope you can find the support and loving understanding from all of these great women and men that I feel I have found here.

I will be starting oral lidocaine this week. I was finally diagnosed in August 2011 and the doc pur me on a couple of different medicines with the thought that if they do not work completely I should add this one, it is called Mexiletine. “Mexiletine (Mexitil®), an orally taken form of lidocaine, was originally approved to treat irregular heartbeats, but sometimes is effective in the relief of chronic nerve pain. Mexiletine reduces pain by adhering to peripheral nerves and reducing pain signals carried from the peripheral nerves to the central nervous system and brain. Over time, as mexiletine bonds to the peripheral nerves, the feeling of pain is diminished. Mexiletine is being used experimentally to treat pain associated with different kinds of peripheral neuropathy. “ While I am titrating up to the proper dosage I have to have an ECG twice a week, it makes me a bit nervous, but I am willing to try anything at this point, just to have some of my life back and not give everything I have to my job and have nothing left for my husband and son.

Hope the IV Liodcaine works well for you. Keep us posted!

Kdifalco,

Lidocaine infusion is a viable treatment in my opinion and there is medically proof to back it up. The article I am referring to was written in 1999. It outlines a DD patient who had been diagnosed for nine years and no other meds worked. She would get relief within 30 minutes of infusion and maintain a pain-free status for up to 4 months.

I have yet to try it but it’s my next option. I am currently on Remicade and Infliximab. I have seen improvement with this treatment but have yet to find total relief. I will be posting the Lidocaine article shortly so you can print it out and maybe show it to your doctor.

-Damien-

I was wondering about oral lidocaine also, my doctor has never prescribed it. let us know how it goes.

thanks for the info i look forward to the post on lidocaine infusions. i have gathered many articles on lidocaine infusions for my doc. but anything will help

HI Damien,

Thank you for posting the article - I look forward to seeing it! I cannot imagine 4 months without pain - that would be a miracle in my book!

I hope you continue to improve on your treatments - I am so glad that you have medical professinals willing to help and try some things.

May you be blessed on this journey,

ArtsyAnnie