Not quite diagnosed yet

Dercum's Disease
#1

Hi all, thought i would just give you a brief outline of my situation: first lump i noticed was in 1988, dr told me i must have bumped my back and a lump of grisle formed around my rib. I was 9st then. 2001 larger lumps appeared on my forearm. I got one scanned i was told it was lipoma and couldnt be removed (wrongly advised) by this time i had gained almost 4st i put it down to having two kids and enjoying life. A month ago the lumps on my arms got painful. I put up with it until i realised i had pain in my leg also i thought it was sciatica, I was also aware i had lumps in my abdomen, inner thigh and outer thighs. My bowels arent normal and i suffer bouts of erm loose (you know what i mean) with stomach pain. I am tired all the time, I put it down to lifestyle, i have a family and work shifts. I have been in and out of depression for years.

three weeks ago i went to my gp which by the way was a locum, she told me to take paracetamol and go home. I told her it wasnt good enough. she told me she would look into my history. she rang me the next day and told me she thought i could have DD.

I see a specialist at the hosp next wed…

I really need to know, at what stage am i with DD? and what does my future hold for me?

thanks for taking the time to read this.

forgot to say: I am now 9st overweight and since 2001 have put on almost 5 st in which in the last 2 yrs i have struggled but lost 1st.

#2

Welcome to the group! I hope it helps you as much as it has helped me. It is so great to finally be able to talk to other who have all the same crazy symptoms. You will find a lot of references to Dr. Herbst in California. She has a survey available if you search her on the web and she is trying to help us so be sure and look her up. I don’t want to answer your question about the progress of DD as I have had it for over 40 years so I am at the extreme end of what it can do to you. But I still find joy in life and your sense of humor will help you. When you read our accounting of daily torture it can be very funny. It is like ah-ha what new way can DD find to torture us today. How many ways can your body let you down. DD rarely kills you it just makes you feel like you wouldn’t mind some days. Hope this is a good day for you. At least you have found fellow suffers who will commiserate with you. Hugs, Sylvia

#3

Geordielass, it is impossible for any of us to tell you what stage you are in. Like Sylvia, I have had DD for many years. I have only been diagnosed for about 2 years. It sounds to me like you are well into the active stage of DD, but it affects us all differently. In some people, the disease moves very fast. In others, quite slowly. I pray you are in the second group.

Pamela

#4

Im like you geordielass. I went undiagnosed until I researched it myself.You are lucky tohave found someone so fast to “almost” diagnose you but your story is similar to mine except my first lump actually appeared after a horse riding accident when I was 16(thats a few years ago or a long long time by some) but I am in a progressing stage…I have done an unintentional experiment by our finances being hoprrible I went off the no red meat no dairy diet Dr Herbst recommended and now I am in a seriously progressive mode…I hope you will contact her she is a super Dr and is concerned about everyone who has this…she will even take time to speak to your Dr if your Dr can call her…She told me diet IS important and now I see it is…

#5

Hi not quite diagnosed,

When you are researching Dercum’s or whatever disease remember this please, everyone is different. Dercums does seem to go in cycles but, those cycles can be different. That is why we all chat and compare notes with one another. We all have similar symptoms yes, but no one can predict how fast the dibilitating process will be. Good luck with the doctor. Don’t give up if your not satisfied. It took me 6 years to get diagnosed and find a good internist. Some people have rheumatologists. We are hear for you to complain to, cry to or laugh with.

Again, good luck, hugs,
Linda