Nutritional advice


#1

Does anyone have any advice on what to avoid food wise for the Dercums patient. I have been having digestive dificulties, have a large abdomen of fat that extends around my back…thanks


#2

Hi, thanks for the info, I too have fibromyalgia, IBS, RLS, CFS, I should have a degree don’t you think with all those letters after my name, ha…What do you find that really sets off your IBS…I find that it has progressed as the lumps have, really quickly lately. Talk to you again I hope, LadyMary.


#3

If you go to this site…Its Dr Herbst’s site …she has recommendation for diet as well as supplements and medicines to help DD sufferers.
http://www.lipomadoc.org/index2.html


#4

Hi E, thank you very much. I will definitely go to the site. Just diagnosed this past few months and thank goodness for that, I was told I had MS for two years before they told me I didn’t…I have IBS as well so will appreciate any info on proper diet. ladymary


#6

Ladymary…I also suffer from IBS badly and have a big bag of lumpy fat hanging where my belly should be…DD people call it “an apron”…I am using shredded wheat biscuits, the whole biscuits…not the ones with sugar on them for breakfast with a few berries and low fat milk and it seems to be helping a little. I know IBS goes along with fibromyalgia which I have in addition to the DD Good Luck Hugs, sylvia


#7

LadyMary,

IBS is pretty common among DD sufferers. I’d try eliminating dairy first. It really aggravates mine.

Pamela


#8

Dairy also aggravates any respiratory or sinus troubles too…


#9

Hey all, I was wondering too if respiratory problems exist with the DD. I have shortness of breath but i do not have asthma. I figured if I have lumps everywhere why not near the lungs or in them…My chest xrays were neg…nothing else has been checked. Would a ct scan show any lipomas involved in that area?? Anywho, thanks again all. I love hearing from you. This is a lonely disease. Bev Hey, one more thing, I love peanut butter, is that bad? Please say no…


#10

Lipomas don’t usually show up in imaging, but sometimes they can be seen as white shadows if they know what they are looking for.


#11

Its true…They usually dont show up…I have had an xray, an MRI and a bone scan to find out why I have severe back pain and nothing has really shown up…But there are a bunch of lipomas around in the area and they didnt show up on anything…


#12

Hi all, Ladymary here, I just had an ultrasound on my right thigh and the scan showed 3 distinct lipomas as far as I know…the technician said he couldn’t define them but that they needed attention. I saw the scans and I was amazed, there was the initial lump and then it just spread out under the skin into the muscle, the primary one had spread to 7 inches, they were 2x2 deep as well. I won’t know for sure what they are till they come out and a biopsy is done but I know I have many more and i know that the ultrasound showed them so maybe someone who needs to have some looked at can ask for the ultrasound. Hugs to all and to all a good day. PS I’ll be out of town next week but will be back and writing next Sunday the 11th. LadyMary


#13

The MRI that I just had on the big lipoma in my chubby cheek the doctor pointed it out on the screen when he played the disc. He could make it out and another smaller one in the other cheek. Both are on the main nerve through the cheek. He said if he took it out I would not be able to smile anymore and my mouth would droop. He also saw more around my thyroid…but they were faint and you really have to know what you are looking at. The ultrasound of my thyroid showed “nodules” on my thyroid. They will do it again in October to see if they grow. I don’t know what else to do. The pain from the one in my cheek bothers me a lot and gives me a headache on that side everyday. Sorry that you have this awful DD. I am just one big mass of lumps now. I hope that your progression is slow. I have had it for 40 years so the aliens have had a head start! I know you will get good support from the very nice members in this group. Hugs, Grandma Sylvia


#14

Hi Grandma Sylvia,

My doctor thinks I need more thyroid tests to confirm hypothroid but I have the lumps he feels are not on the sides of the thyroid. I have always suspected the “pains in the neck” (literally) are from tumors in that area. The tumors may be interfering with my thyroid functions too.
I will ask for an ultrasound, maybe something will show up.
Wishing you better days with less pain.

Your friend,
SylviaS