Dercum's Disease Support Group

but i have to ask..i understand that this is a progressive disease. a lot of you are in chronic pain with a whole host of other conditions. Did the chronic pain progress or did it start as soon as the lipomas developed? I have pain if i press on them. sometimes they burn or smart but not constant pain..Ive noticed that i cant lie on my stomach as much anymore.Feels like something is in the way! is the fatigue present all the time? Mine seems to come in waves. Ill be fine for a few days, then others i feel like i can hardly make it!Im always dropping things now too. I dont want to sound like im whining, but not knowing what to expect is really scaring me.I just had to get that off my chest..

Scottie,

I have been ill since childhood and, for me, the pain came long before the tumors. It started with skeletal pain. Lipedema was obvious from about age 10, if anyone had know what to look for, and DD became more obvious when I was in my thirties. For me, the fatigue comes and goes, but I know some are fatigued all of the time. Some of my tumors only hurt when pressed on and some ache and sting all by themselves. I hurt somewhere all of the time, but not everywhere unless I am having a bad day. We are all different. Men don't seem to have the weight gain issues to the extent that women do but, from what some of them have posted elsewhere, I suspect their tumor pain is very intense.

Hope that helps. I don't get over to this group often, but I try to pop in here and there.

Hugs and spoons,

Pamela

Dear Sarah,

you want to know about the cronic pain, and yes, it does progress. At first at least I didn't put the lipomas in connection with my pain, it wasn't until later when I've read about DD. My lipomas hurts when I pressed on them, for some of them it's enough if I touch them. And like you they don't give me a constant pain.

I have difficulties to lie on my back so much, where I have plenty of hurting lipomas.

My fatigue is present all the time, sometimes more, sometimes less. When it's more I can hardly stand upright.

I too drop things all the time.

You must not think that you friends here see you as a whining person, we all know what you are going through.

And yes, the desease escalates, but to a certain point. You should know that it at least not goes to the worst.

If you feel the pain is unbearable, your dr must describe some painkillers.

Soft hugs and many thoughts,

Ann.

I'm going to have to echo Pamela and Ann! My pain is also not as great but I do seem to be getting more sensitive to pressure. And I have more odd pains - like stabbing ones - than I used to. My fatigue also seems to come and go. It seems worst if I have been busy for a while with no break - like working full days for 5 days and shopping on the weekend. If I can rest, it's not as bad. I see my DD doc tomorrow and plan to talk to him more about it and how to adjust my work schedule.

I think our main goal is to stop or slow down progress. So start doing as much as we know as soon as you can and don't do the things you know can be bad - like steroids and lump removal. I look back at the year since my diagnosis and I have slowly changed but not much. So I look at it as taking maybe 20 more years before I have some big problems. IF I behave and watch out for me!

You are absolutely not whining! We've all been there. And we all still have many moments when we can't quite deal with all the unknowns. That's why this group is so great - we can help pick one another up!

Pamela, good to see you posting! I've missed you!

Hugs,

Diane

Thank you ladies! your words mean so much to me. Its just that sometimes i feel so alone with this thing..My best friend is praying for me and all but she too doesnt want to believe it until i get a confirmed dx.. and she has done the research and said yeah sarah all you symptoms fit in there!The unknown is always scary. It helps to be able to talk with others who are going thru this..Hugs and kisses to all of you! Sarah

Sarah...you are so sweet and I just hate it that you may have this disease. I hate to hear of anyone with it. I have had it so very long that my body is no doubt much different than the younger women. My hope it that they find out ways of preventing them ever getting as bad as I am. Also for me it is hard to break out what is from the DD and what is from my other major problems. In my experience it came on very slowly over a period of the last 45 years. It started getting worse after my hysterectomy at age 40. I was as active as possible as long as possible. I wanted to live an active life and I did pretty well raising my kids. It seems to be that one area of my body would start to develop lumps and then another one would start up. Like first my right shoulder then my left shoulder..my left upper back then my right upper back. Mine started in my rib cage with quite intense pain and lipomas coming on fast. The lipomas are painful. If you press on one and it shoots a pain elsewhere that is common. If you apply steady pressure and the lipoma feels like it is getting smaller...that is the lymph being forced out of the lipomas. I underwent very painful massage therapy where they did that and the pain was horrible and the lipomas just came back later. I walked until I was 60 but it hurt. My hips and lower back are just full of lumps and they go all down my legs behind my knees..well..I have them everywhere that I have any fat on my body. Some are very small and in masses and some are very big and in strands. The lymph in my feet and ankles now really hurts. The wrapping helps some. I would not be afraid. It comes on slowly and you can adjust to the changes in your body over time. Please be good to yourself and try not to obsess over it all the time. I don't think I go through a day without bending my husband's ear about my disease. I don't bring it up with anyone else except here. We need somewhere that we can discuss this without worrying what the other person is thinking. I honestly don't think anyone without DD can understand us except for our wonderful doctor Dr Karen and other great doctors like my rhumatologist and my husband. Hopefully others have good support people in their lives. You describe chronic fatigue syndrome which most of us have. I have written before how I hate to go to bed because that means that the next thing I know it will be time to get up and when I first wake up my pain is the worst. I need to get awake slowly..my husband brings me coffee...but he always has. People who have DD usually have some other conditions like depression and CFS that have to be part of the DD syndrome. Just be good to yourself and try to focus on what you can still do. We could get hit by a bus or get cancer at least we are still around!I had rheumatic fever when I was a child. I have never had a very healthy life but I have had a hell of a great spiritual life and the opportunity to give love...it is not about who loves you..but about who you love..that makes life worthwhile. We will be here for you Sarah and with friends like Diane, Ann and Pam you will be OK. Hugs, Grandma Sylvia

Post edited by: grandmasylvia, at: 08/04/2010 03:25 AM

Thanks Grandma! Hugs and kisses!