I think your girlfriend can join here and ask questions to people here about her concerns or thoughts (or anything). She could open her own CarePlace account. When you join a group it asks you if you have the condition or just know someone with the condition.
I really don’t think there is a separate forum for coping with a relative/friend with dercums.
Your girlfriend would be welcome here. There are no sites for family members exclusively, but she would learn a lot here and it might help us to understand how our family and friends feel.
Hugs,
pamela
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Hi everyone! My name is Sufian and I’m from Singapore. I’m a 39 year old male who is currently seeing some local doctors to determine whether I have Dercum’s Disease or not. I have been doing some initial reading up and my personal view is that I may have it.
Since 5 years ago, I had some lumps on my forearms which grew slowly. They didn’t cause much pain. However, 1 month back, I notice more lumps coming up at new places. Lumps at chests, near rib-cage, side love-handles, lower back. And they started to hurt a bit. Went to see a GP and she recommended the larger ones (on my forearms) be taken out and a biopsy done on them. Operation is due next week on 11 Dec. Till a couple of weeks back, the pain got worse. Really, really worse. I played a round of golf one of those days, and the next day, I felt as if I had glass shards in my arm/shoulder sockets. In addition, my old lumps started to hurt a bit, but the new lumps on my ribcage hurt the most. Sharp burning pain which seems to diffuse to the surrounding areas. However, the pain comes and goes for unclear reason. Each pain outbreak lasts from 20 minutes to a couple of hours. In addition, more interesting symptoms appeared the past week alone.
Fingers and hands feeling numb. They also feel slightly sore.
The skin on some parts of my body (rib area, upper chest at the side, back, lower back, areas above the elbows and knees, neck, shoulders) has a burning sensation which have increasing by the day. They felt as if I’m going to have a rash outbreak and the region feels very sore and sensitive.
I’m also experiencing sharp acute intense pain at the side of my calfs. These felt deep inside instead of the usual near the skin pain.
In addition, I’m also experiencing pain in my arm sockets, though they have been lesser since I’ve not hit a single golf ball the pass week.
I’m ‘discovering’ more lumps all over. Near my chest, pecs, lower back, upper back, hips and buttocks. It’s not that I go around looking for them. It’s more of I feel a pain in the region, and then I discover a lump there
Till today, pain has been almost constant. And all these happened in the last 3 weeks. Hope to get more answers and some pain relief when I see my doctor next week.
Hi,
I’m afraid that exercise for patients with Dercum’s Disease is not good. It leaves excess lactic acid in the tissues which causes inflammation which in turn becomes lipomas and angiolipomas. Dr. Herbst recommends gentle non load bearing activities, swimming gently etc.
Sorry…
Hello Sufian, It makes sense that after physical activity(especially something vigorous) your pain would greatly increase. DD(Dercum’s disease) causes you to have exercise intolerance…your body literally can’t tolerate exercise at a certain level. This is also true if you hurt yourself.
Lyrica has helped me greatly(if it is too expensive contact the manufacturer). It also helped a lot when I had the most painful tumors(actually angiolipoma: angio as they have a blood supply, also usually larger & more painful) I used a plastic surgeon…also she did NOT do liposecction as the whole tumor must be removed.
There is a forum on Yahoo Groups Dercum_Disease. If you haven’t heard of Dr. Karen Herbst, you will soon as she is the expert in the States.
There is a self-treatment(recommended on that site). I am going to try it. It says it takes time to help, but is not too expensive.
AT age 66, I have had DD symptoms since 1999, diagnosed by myself about 2001, diagnosed by Dr. Herbst 2008.
Over 100 lipomas removed, worst was 40 at one time. Still recovering from that after more than a year. So many pain meds most doctors just think I am crazy. Found out 3 years ago that Lyrica (which helped!) also made my throat swell so much I was practically unable to breathe at night, had to stop using it.
My doctor of 13 years, who was compassionate and knew me well, just died of swift acting cancer. Had tried to prepare myself in case of anything happening to him (he was 10 years younger than me, so “why should I have worried”. Now just another Dercum’s patient looking for a doctor and a very open minded pain specialist and amazed at the way the RECOMMENDED doctors seem not to know, believe or care about the seriousness of my condition.
The rule I live by is “Never give up!”