Dercum's Disease Support Group

i think its amazing that we can all google our symptoms and come up with a possible diagnosis and explanation for our symptoms but the doctors with all their medical expertise and resources cant!!!!!!!! Anyone see anything wrong with this picture? LOL! Im in a sarcastic mood right now!

I have even printed the papers out for my doc, and he looks at me like I am crazy. I have to agree they are not good at surfing. LOL

Totally agree. I really feel like there is enough information out there from reputable sites that we should not be made to feel like we are crazy. A lot of doctors have a complex about a regular person telling them something though. My aunt has been a nurse for almost 50 years (still has not retired at 71) and the doctors would even have a problem when nurses would tell them something. I think doctors that do research currently are the ones that are more open. They want to learn new things and do not believe that a database for their medical practice or hospital is the be all and end all of medicine.

All we can do is keep our heads up and take care of ourselves as best we can. As long as a doctor is willing to work with you on the pain management side, that is a huge start.

Well said. I must add that my pcp, the last time i visited her, when I mentioned that I had the phone consult with Dr H. looked at me with a tad bit more interest.. and said that she wanted to learn more about the disease..So maybe she wont just write me off as being depressed..The catch-all phrase for 'we dont know whats wrong'!And even moreso, is when they say 'oh yeah, ive heard of that' then tell me to go home and exercise!

So sad but so true! There have been a few too many of us with the "exercise and lose weight" reaction. I finally convinced mine that I had been exercising for 3 years but we're still working on my weight does NOT come as a result only of what I eat.

It does help when you say you've been diagnosed with it. I usually take in an article with symptoms, tell them I have it and that it might impact whatever they are seeing me for. I've had several say "Yes, some of these symptoms are ones we would treat."

I think having a main doc who will work with you is so important. I don't have as much pain as many of you and I dance around the pain med subject with mine. He has been really good at getting me the other things I ask about. But it has been 13 months since he diagnosed me and it's not been an easy road to get where we are. So try to trust your gut and move slowly in educating. It IS a whole new thought process for them!

Hugs to all!

Diane

I really wish the exercise would work! When fibromyalgia was my dx - I did find that "strenous" exercise worked wonders for me, but now the lightest of exercise makes me hurt. I long to get back into some kind of decent shape and I haven't been able to get to the place where basic walking and water aerobics don't hurt. AND this symptom has just arose in the last 6 - 10 months. I don't mind pushing through the pain but at the moment my fear to cause more and bigger lumps. My younger daughter is getting married Sept 25 and I sure don't want to look lumpy in my dress, if you know what I mean.

Rita, mine was the same. I had been walking then I switched to working out in a gym doing cardio, stretching and strengthening. I didn't tone up but I didn't get worse until last year when my symptoms really started manifesting. I switched to water aerobics which went pretty well except my thighs would ache that night. Then I switched to chair aerobics and that worked for awhile. Now I do an even lesser version of chair aerobics so I don't set anything off. The biggest key is probably that it be gentle and not strenuous.

Hugs,

Diane

You are right Diane. One thing I have found out is that your body changes with age. What I could do at 40 or 50 is no longer possible. I don't care how little respect I get from the doctors I know my body. I did try! I walked as long as possible. I raised my kids and kept my house clean. Now, in my 60s I need help. If you are like me you hate to ask anyone help you with anything! So I used to clean my 3 level house in one day. It hurt but I did it anyway. I walked to functions and was always there for my kids. Now, I just can't! The warm water exercise was something I still did until last year. I thought that I would always be able to do the water. Last year it just killed my back and I almost could not get dressed afterward. I am still getting in our pool a little with John and my daughter to help me. If you can find a very warm pool I would say go all the time..the more the better. I know all the water exercises. Now with my respiratory and heart problems I can't do any exercise. My oxygen drops to 60% if I just try to walk.

Congreat Rita on your daughter's wedding. I know how exciting that is for you. My kids both had big weddings and I loved it! Just wear something comfortable and try and enjoy yourself. I had these low heels for my daughter's wedding and when I put them on..they fell off my feet..with the swelling I never know what size I will take. I stuffed toilet paper into the toes but I was a nervous wreck that they would come off and we had to walk up a few stairs and light a unity candle. I was of course sweating all over the place. But my daughter was beautiful! Hugs, Grandma Sylvia

Not meaning to put my nose or two cents in where it doesent belong, but I have seen some things in my research that says we shouldnt exercise because it can increase tumor growth.. Be careful in whatever you decide... Huggsssssssss

I read that too, but at the same time, i think its important to at least try to move as much as we can. I find myself getting stiff now.. and if i just take a walk, i feel better. I think its a matter of what you can tolerate.. of course if you find yourself worse when exercising then stop. I recently joined a gym. i dont do anything really strenous but im seriously out of shape and if this disease causes weight gain, then i need to at least try to lose as much as I can or maintain what i can. I cant afford to gain any more weight. Im tipping the scales as is! And like im always telling my docs, i dont eat that much! I cant because i feel terrible when i do.. so its small light meals and still nothing is happening as far as weight loss...