Dercum's Disease Support Group

Hello all -- new problems. I have been having excruciating pain in my neck, upper back, shoulders, and down the backs of my arms whenever I use my hands or arms. It even causes pain it knit! I have been playing piano in church for 40 years and now I spend a day and a half in bed after playing each Sunday because it hurts so bad. Has anyone else had this? I was wondering if I should ask my dr. to do an MRI to see what is happening. I also love to sew - but I am having difficulty doing it for more than a few minutes at a time. I would appreciate any input.

Joey

Joey..I am so sorry. My shoulders went early. I used to wrap my arms in elastic strip wrap to go to work. I did not know I had DD at the time..the support just helped. You should probably get the wraps for your arms and try that. The wraps I use on my feet and legs can also be used on the arms. Maybe you can do some very gentle stretching exercises in the shower. I always prop my arms up with pillows..in my chair and in bed. The lipomas encircle my shoulder joints and are so painful. The neck is one of the worst places...but I also have degenerative arthritis in four vertebrae. Heat feels good on my neck. I was up a hand towel to put behind my neck when I watch TV. My hands turn red and get hot and hurt when I use them. Talk to your doctor about tests. What you describe could very well be all part of the DD syndrome. It would be a shame if you can't continue with your music. Maybe you could try a topical put on right before you play? They have special warming gloves and a hot wax treatment people use for arthritis in the hands. I'm so sorry..as I know you love your music. Hugs, Grandma Sylvia

What wraps are you talking about? For a long time my pain was fibro or joint related but I've got this "bubble wraps" of small ones that go under my arms and up on to my tricept...my shoulder and entire left arm are becoming useless. Waiting for my appointment with Herbst but I'm getting so desperate about it I'm thinking of surgery. On top of it, Dad has bladder cancer and there is no one but ME to take care of him...ugh...already caring for my mom - they are divorced (of coursed, of coursed...had to say that). Any ideas? I just get pills for now...and can't imagine how I'm going to help him if I am the way I am right now.

Looney, though I am not a doctor or medical professional I was going to suggest that the pain might be fibro... I had heard a while back on here that there was something called DRL 100...has anyone heard that? or tried that? does it help????

Well, I have Dercum's and Fibro and anything I do with my hands and arms causes shooting pain throughout my neck, upperback, and through my shoulders and hands. All it takes is dishwashing, typing, reading the paper or holding a book for even 10-15min. Pain can limger for long time after. Doing any kind of just hand related work will cause my whole hand to have severe pains. For example I spent a little while spraying dandelions on my lawn with one of those squirt bottles. I soon had pain in my whole hand and shooting pain up my arm. I soon became very weak in the hand and could not have the strength to pull the trigger. After my hand was very painful for a couple days.

It's real frustrating having that much pain from simple tasks. I mean I use a reaching tool to pick up items because It is so painful bending down. But my hand may be too weak to hold the hand grip for very long and its painful. I'm learning to accept this and do what i can when i can and as much as I can. Thats all I can do. I will spray a portion at a time and not continue when the pain worsens. The rest can be done over a couple days. With typing I use Dragon Naturally Speaking software, that is voice recognition software. I can browse the web all by voice and even write this whole reply without ever touching the keyboard.

I really have not had relief from any of this pain no matter what I do. Relaxing hot baths to soothe my mind and body for a while is where I reflect and let my mind and body escape. I make the baths a positive time to look forward to. I like a detoxifying bath, with epsom salt, hydrogen peroxide, and baking soda. Feels real good. 2 cups epsom salts, 1 cup baking soda and 1/3 cup of hydrogen peroxide. Best to drink water while bathing, can feel light headed afterwood.

Anyway, I wish I could give you a real answer but I can't, accept go slow and stop when its painful. best wishes in finding relief. If you find a way to get more stamina and less pain please let me know.

Take care,

Jeff

Granted this pain could be from DD but I would want to rule out a pinched nerve. I had a vertebrae out between my shoulder blades that caused just the pains you describe. A few visits to the chiropractor released it and allowed the disc and nerve to heal. I like to rule out other things before I assume it's the DD. I think that is helpful in helping the docs determine what is really common with our DD.

Thanks everyone. Jeff - that is exactly what I am going through. Even holding my cell phone to read a message causes pain in my arm and back! I will keep digging for a source of relief. Good luck to all!

Joey

Yes Peeps it is so sad. We just have to find coping skills and accept that we can't function like we did before DD. Great ideas Jeff...that is what we do here..share coping skills. I'm glad to hear from someone about the typing program..sounds great! Looney44...the wraps we talk about can be ordered online or found in DME stores. My husband and I went and the physical therapist showed him how to wrap. You use three layers..gauze, foam, and regular elastic bandages. You can find a lot about it online. You can get really expensive ones that are custom fitted but most insurance won't pay for it. Wraps help with our swelling and edema. When I was just starting having shoulder problems..I just used the athletic wraps like they use in sports and it did help a little. I am so sorry about your parents. I haven't heard of the DRL 100. Let us know if you try it Tala. I can't open pills or stir food..it does hurt holding my books. My son wants me to try the computer books and I probably will. I've carried my current book around with me since kindergarten. I love the library and reading is the key to everything I know about life. I feel sorry for the periodical publishers who keep offering me cheaper and cheaper subscriptions as they have fewer customers all the time. Younger people are doing their reading online. With our poor hands..the Kindle will help us. Keep those ideas coming. Hugs, Grandma Sylvia

Yes, LuSenda we always need to rule out other causes which could be severe. In my case I had xrays and nerve conductive tests etc. The results was that there was nothing wrong. That was a real shocker lol. Again, I had real painful knees, and I could not get upstairs due to weakness and pain. Again I had xrays and other tests. But everything is normal. Its seems to be so repetitive. I guess I have become jaded and feel like any problems are always the Dercum's. Let's face it many of us went through many tests for years looking for a diagnosis and never finding anything wrong.

Unfortunatly, we still need to listen to our bodies and when symptoms pop up we must consider being checked out just in case something can be wrong. I guess that is just the way it is.

Best wishes to all.

Jeff

I had all those same tests and they found nothing. I know when the lymph fluid moves in my legs things improve greatly! swelling goes down bruising in my ankles goes away, pain is less and the legs move better. Now figure out what to do or take to make that happen. ???? Water pills don't work infact i got worse. Thats all,Wendy