Diagnosis Dercums Frustration

Dercum's Disease
#1

Hi all I am positive I have dercum’s disease, and my family doctor is pretty sure of it as well, after all the documentation I took him.

Recently I visited a site called The Dercum Society. They wrote:

There are no definitive tests for Dercum’s Disease at this time; all diagnosis will be made clinically through a process of elimination. You will inevitably visit many specialists, but it is vitally important that if you suffer from any of these symptoms that you be evaluated immediately.

In addition they wrote:

remember that it would be foolish and unethical of your doctor not to rely on the expert opinions of doctors who specialize in localized, specific areas of the body

Heres my problem, I have had other things wrong with me that caused doctors to test, disbelieve, research, etc. I don’t want to go through that again, it is very stressfull on me.

I mean, don’t we know or not know if we have this ? I have all the symptoms, and my body is full of these lumps, from head to toe.

Why should I go through a financial, physcial and emotional nightmare ?? Particularly since there is nothing to be done for this.

I DONT WANNA !!! Can anyone provide me with a real reason to do so ?

Totally stressed out calle//Carin from Phx, AZ

#2

I just recently got diagnosed with DD…I have been diagnosed with fibro for 40 years. I don’t know of any benefit of the new diagnosis as no difference in the treatment and nothing works anyway. However, I know a lot of people who have fibro and no lumps. They always seem to be so much better off than I am and it made me feel like I should not be in such bad shape if I had fibro like them.

The lumps are all over my body now and I am in a great deal of pain. I go on with my life but it hurts so bad and like my daughter in law says she has fibro (no lumps) and she thinks I am a big baby because I am so disabled by the DD. I have to use a wheelchair if I go out and I can’t sit or sleep as the pain is so bad. I just recently found this web site when my doctor told me I had DD and for some reason it helps that others have the frustration and variety of symptoms that I have. Also, I think now that they have identified this disease in more people maybe they can work on a cure.

Just telling women that they are fat and crazy has not lead to a cure!!I did not get any new tests when I was just diagnosed, just blood tests that showed high sedimentation rate and he felt some lumps. I know how you feel and I wish I could help you. I do understand what you are going through and I care.

#3

Hey all well i went to my doc today and had to see his PA. He had never heard of dercum’s and all he could say to me is there must be something out there that can take care of this.

He kept telling me things to do and none of them I can do. He said well just start walking a little ways to start. I said I cant do that because my right knee is so sore i can only take a few steps. He kept wanting to tell me about his own infirmities, which i did not find helpful at all. It felt like so so I have things worse than you so shut up.

Once I started crying he realized that his approach was not working. and i HATE to cry in front of doctors. Then hubby started talking to him, chatting about this and that, and i got madder still.

Hubby left after I snapped at him, and the doctor apologized and said he didnt mean for me to feel bad. I told him he was making me feel as if nothing was wrong. He said he was trying to get me to a place where I could be happy.

I told him such a place did not exist at this time. The upshot is we are going to try and get me into some phych care, and also start me on lycria in addition to other pain pills.

And hes sending me to an endro (sorry for short name) and a couple of other docs. He ran the blood tests that Dr. Herbst had reccomended.

I appreciate the enouragement and will let you all know how it goes. Thank goodness for this site and you all.

Calle//Carin in Phx, AZ

#4

Just wondering if you brought in all info from www. dercumshope.org , & Dr.Bronson &Faghers article as well as Karen’s latest published research with you to the Dr.s? Having documentation from other Drs seems to help them take us seriously and believe there really is a Disease they don’t know about and may help peak their interest or curiousity. I wrote to you earlier about my experiences with them treating me like a depressed hysteric and I know what your going thru. Try not to lose control and just remain calm and explain that it is a well documented Disease since the late 1800s but mostly in England and Sweden. They seem not to like not being in the know over other countries too! Ego maybe Huh? Try being the teacher and enlighten them with findings about the Disease such as it is thought to be an autosomal disease (inherited or passed from generation to generation) mostly Grandmother to daughter to granddaughter etc. You will find that you will know more about this diseas
e and what is going on with your body than any Drs ever will. Try to not be a victim but an advocate for your own health needs and explain ro your Dr that you have had a hard time getting them to take you seriously and listen with an open mind to your concerns. This usually gets their attention. You can arm yourself with as much knowledge as possible and then pass it along to them in the hopes that it will serve not only in getting help and support for you but for the next patient that comes along and has this insidious and frustrating disease. I have copied the article below for you. Good Luck & God Bless.
Davana

Here is an excellent article on Dercum’s…the wording is a little skewed because it is translated from Swedish to English… From Swedish Dercum Society

(Mb) DERCUM
A considerable amount of patients suffering from Mb Dercum have often met with pain during a long time, and also consulted several doctors before finally getting the correct diagnosis.
Sometimes the diagnosis

#5

Calle, Your doctor needs to understand that exercise is actually contraindicated for DD. The safest exercise for us is in very warm water. We have so much connective tissue that we can tear it doing anything else.