New Pain or not..Do you have similar pains?

Dercum's Disease
#1

Last night I was walking and I felt pain (and its alot of pain) up from my knee to my butt(backside of leg) and it I felt like there were a ton of small lumps all the way up. Like I felt every one of them…of course it was super painful…this happened to me twice…

Has anyone else had this feeling?? Pain but you could feel every lump? I knew there were a few lumps in my thigh but I could actually feel them…It felt like they were attached to my muscles…Gosh it was painful…some of the places in the front and sides of my legs have clusters of small lumps so that they feel like, in places large lumps…sitting has always been painful because of a lump pressing on a nerve I believe and when I have some removed that will be the first area…

#2

I can’t lie on either side and haven’t been able to for 8 years, even for a few seconds. I also can’t lay flat on my back, so I have to sleep partially sitting up and elevate my legs. I’d be a whole lot worse off without my adjustable Tempurpedic bed. (I bought it when I still had a well paying job and it was the best money I ever spent) I usually sleep pretty well, at least.

Driving a bus with your butt and the back of your leg in a bad flare is sheer torture. I’m short legged, so I have to reach pretty hard for the pedals.

Hugs and spoons,
Pamela

#3

I have that problem. When I have them on the same nerve root it feels like it is playing pin ball on my nerve, bouncing from one to another. It’s horrible to have sciatic pain and where you are describing that is exactly it. I think we all suffer from that. If you look at my pictures right above the crack of my rear, you will see about a 6" round section of lumps that join together. This is after years of lumps growing there. they are the sciatic ones…they also travel down my rear, (like someone is squeezing it) and shoot down the hips, outter thighs to the knee. I have it go all the way down to my big toe. I haven’t had any feeling in my right toe for about 9 years. I hate it that you have that kind of pain. I know it’s horrible.

#4

Hi Elaine,
I have flares like that too. Two or three weeks ago my right buttock and the entire back of my right leg, all the way to the sole of my foot, seized up. The muscles went rick hard and it felt like one big, oblong lump running the whole length. The skin felt as though it had been badly burned too, and I just about didn’t make it through the week driving that bus. Sitting was miserable and having to put pressure on the back on that leg in order to work the pedals was excrutiating. I couldn’t even walk without my cane. I now have a memory foam bed topper folded in half on my sofa for the extra cushion needed to sit.

Last week, the same thing happened in my right arm, and I was forced to take three days off because of the safety hazard it would have caused.

Hugs,
Pamela

PS Happy Birthday! I hope it is pain free!

#5

I have to sit n the other “cheek” because of the pain…I cant imagine what I would do if I were still working and driving anything…I can barely stand to sit while anyone else drives…And I can only lie on my side when I sleep …my right side…I don’t know why I have more lumps on that side then the other but its less painful to lie on that side…I just found a new ump in my left side leg and its BIG!!! I am so tired .,…I think my family doesn’t want to hear me cry anymore…no one does…Thanks for all your replies and hugs…

#6

Happy Birthday EJohnson! My rheu told me it is not sciatica but the pain from the DD growing along the sciatic nerve. The rows of hard marbles are changing now to very large diffuse lumps. Of course my legs are full of DD…around the groin, the knees, the hips, the feet and up and down my legs. The ones along the sciatic nerve are really bad. They are all bad! At least you can still walk a little…I am at the point now that I cannot. The DD hurts more than the diabetes but now I have been diagnosed with Atherosclerotic vascular disease. That is indeed the killer! So diabetes is more deadly but DD hurts more!

Pam…I am so sorry you are having such pain and still have to work. It did me no good to work until I dropped as now I will never qualify for any RX assistance plans due to my tiny pension which will not even cover my insulin. Learn from my mistakes and quit now! Hugs, Grandma Sylvia

#7

Hi Sylvia,
Sure, I’ll quit, just as soon as a find a really good cardboard box to live in while I wait for SSD! (couldn’t live in my car because it would be repossessed!)

Believe me, I would if I had some way to survive in the meantime.

Hugs and spoons,

Pamela

#8

Pam,
I have 9 acres, we can have a commune out here. LOL. I know what you mean. If Scott doesn’t find something soon, we will be in a cardboard box. The economy is so bad down here. We are in one of those “recession” states. All of our jobs went overseas in textiles. Another plant in my town is closing down at the end of the year. That means 250 more people out of work.
Love,
christine

#9

I know Christine. Maybe we could set up our boxes next to each other and be neighbors! I;m sorry your businesses are leaving. The scary thing is, if taxes are raised on them, it will only get worse. My job is secure unless I get too disabled to do it safely. They have to have school bus drivers, whatever the economy and I have been there for over 3 years. My second job is in the mortgage industry and it is dead in the water right now.

Hugs and spoons,

Pamela

#10

I have experienced that before I knew about DD, and the doctor thought I had sciatica. (when he couldn’t find the cause he was the one who later told me I was nuts). I guess the lipomas are right on the nerves.

When my DD kicked in big time I couldn’t walk. It was like every muscle in both my legs were in pain. It was hard for me to lift one leg up. That went on for two days (then I went to that doc, that is when he told me I was nuts)

Later, after I learned about DD it made sense… my pain was like the lipomas had attacked the muscles, a deep pain. I haven’t had that in a long time though. Now it is just stings and burns.

I hope you’re doing better now and this will be the first and last time you experince this!
Hugs,
Suri