Todays the day - RA and DD

Dercum's Disease
#1

Got my Rhuemy appt today and am a little nervous as to what kind of reception i am going to get from him when i approach him about my findings on DD.

My GP told me to talk with him about DD as this is what my GP thinks i have …but he doesn’t know anything about the disease (looked it up on Drs website while I was at the appt) hopefully i might get somewhere today and my Rhuemy not thinking im delusional and mad…Ill let you know how i got on later I hope you all have a great day and are not too troubled with your pain

Gentle hugs Cathy

#2

How did your appointment go?

#3

Cathy,
My prayers are with you today as you see your new doctor. Let us know how it goes.

Hugs,
Brennie

#4

Cathy,

you should take a copy of Dr Herbst’s study article with you. At least then, he knows it is a real disease.

Hugs,
Pamela

#5

Good Luck…Hoping for the best for you…

#6

Good luck today Cathy! Hugs, Grandma Sylvia

#7

Good Luck, I hope things went well today!

#8

Oh I hope it went well!!! I know what you mean about one doctor believing you have DD and still being worried about the next one. I didn’t have that worry at first – I thought when I finally found a doctor who thought DD was my problem I wouldn’t have to worry and bring in papers to show there is a thing called DD! I learned my lesson though… And now I have copies if everything made and ready for any doctor I ever have to see.

Let us know how it went! I really hope it went well!

#9

Hi everyone and sorry didnt get back to you all sooner …feeling very deflated and quite angry at the moment:( The rheumy i saw asked a few questions and i explained to him what my own GP had said and also showed him all the printed information about DD that I had got from the internet and he looked at me and said hmm your Dr thinks you have this ?? who in your family has or has had this ? have u lipomas (I showed him numerous lipomas and the huge fatty deposwits i have all over and he said do they hurt and he pressed some I was in agony.He then said and what treament do u think we can do for this ?? if this is what You think you have ?? Find someone maybe a friend who needs to lose weight and go with them and go to weightwatchers if you lose weight then you will feel alot better …sarcastically i said Oh so all this pain will go away? he said yes i belive it will ARGGGGGGGGGGGGGGGGGGGGGGGGGGhhh sorry im just so angry :frowning: So apparently theres nothing wrong i just need to lose weight ( I have tried many many thimes)
IM going back to my GP and tell him of my experience and ask to see a Dr who is capable of having at least some bedside mannar and some knowledge of medicine Gentle hugs Cathy

#10

Cathy,
I know exactly how you feel. Its so upsetting to be talked down to. They are just incompitant and the only thing most of them care about is getting your insurance money or your money either way. I have a seriously bad attitude about docs for the most part. But the best thing we can do is keep looking for one who will listen. Don’t give up sweetie.

Gentle Hugs,
Brennie

#11

I totally understand…Basically the same thing happened to me…why wont Drs lsten to the patients???

#12

I hope you don’t pay your bill. when they ask why you don’t want to pay, say sarcastically. If you want to get paid for your bill. Have the Rhuematologist talk to one of his Rhuematologist friends and find out about bedside manner. Once he does this you’ll pay the bill. You shouldn’t have to pay for being insulted. I would file a complaint with your state’s medical board. You don’t have to tolerate his attitude for lack of education.
I am so sorry that you had to go through that. Unfortunately, due to lack of education there are a lot of doctors that don’t want to treat. I need to know where you are at and see if we know of any doctors in your area or if we can find one that will see you that has experience with DD. There ARE doctors out that there that are willing to treat us properly.
Big Hugs,
Christine

#13

Hang in there, Cathy, and just keep trying to find a decent doctor. they are out there if we look hard enough. We have all been told, if we’d only lose weight, we’d be all better.Just remember, 50% of all doctors graduated in the bottom half of their class, and at least half of those are jerks!

Hugs and spoons,
Pamela

#14

Arg.

I personally lost 25lbs in the last month. Did it help the pain? Not at all. It may have made it worse- bumps in my arm that ::never:: hurt are screaming all day now.

#15

Cathy, I know just how you feel. Just be brave and realize that that man is in the wrong profession. Physician…heal thyself! I don’t know why some doctors are so arrogant and some are true physicians in the best sense of the word. Have faith in yourself…we have faith in you! Hugs, Grandma Sylvia

#16

I feel for you so much! I am nearly in tears because I know EXACTLY how you feel having experienced it recently. I think most members here know that feeling too. It makes me so angry and sad at the same time. I hope you can find a better doctor. I have a pain doctor who believes me but ny GP gives me the impression that he doesn't. If he ever voices that to me I will ask my pain doc to call him.

 About the losing weight thing... One of the papers I print out says that losing weight will not effect the pain.

 

 Diagnosis and treatment: The Dercums Disease diagnosis is based on what the patient tells and what the doctor finds at his examination. There are no tests to take, but some blood samples can show signs of infection and/or that the immune system are very active. The doctor can also take blood samples in order to exclude other diseases. The knowledge about the disorder is not well know and many patients are poorly treated. The treatment of Dercums Disease patients is inadequate. Attempts have been made to get patients to lose weight, but it is extremely difficult. If the patients succeed, the weight loss has little or no effect on the symptoms.

Source:http://www.emergingworlds.com/ch_conditions_detail.cfm?vPageid=157

#17

Cathy, I was so anxious to see how things went, and now I’m so sorry for you and disappointed in yet another doctor appointment!

#18

Suri,

Some who have lost weight say the lipomas actually hurt more, apparently because there is less cushioning of normal fat!

Hugs,
Pamela

#19

I am one of them. Lost weight, no mo cushion. Now I’m scared if I gain weight they will grow bigger.

#20

It is so sad Cathy! I think we all get our hopes up when one of us makes a run for help! It hurts my heart that one of us is suffering the fresh pain of being emotionally trashed by just one more unfeeling doctor. It is such a cold unfeeling world…and yet look at the careplace people…the world is not a total loss or we would not have found each other! Hugs, Grandma Sylvia