How fast does Dercum's move?

Dercum's Disease
#1

Hi everyone - I noticed a couple of months ago that I had some painful lumps on my arm, but kind of forgot about them. Now I am covered with bumps, seems like I get new ones everyday. On my arms, right before the elbow on top, there are masses so big that my husband thought i was making a muscle. They are on my legs, hips, ribcage, neck, breasts, arms, back, they are everywhere, and everyday i get more and more. Does Dercum’s move this fast ??

I am seeing my doctor on the 20th, he is a great guy, and if he hasnt heard of it, he will find out about it.

I am in Phoenix, AZ … Anyone have a doctor in Phoenix?? Thanks for all the support.

Carin/Calle

#2

Hello everyone. My name is Aaron and I am just learning that I probably have DD. I felt one nodule in my left arm three months ago and now my entire left arm and shoulder to include my chest are full of them and multiplying faster than I could have ever imagined possible. I have a one year old son and from what I’ve read my pregnancy may have caused the onset of this condition. I’m still working on a diagnosis… My MRI findings are due back today and I have a biopsy scheduled for Friday. My husband is in the military and my doctor has been less than charitable. I’m scared of my future and I already hurt so bad with no apparent relief in sight. Thank you all for being here just finding this forum gives me hope.

#3

Hello

Yes it can move that fast.? It would be great if you could get to San Diego to see Dr. Herbst.? I could not find a Doctor treating it in upstate NY but after her diagnosis my primary is willing to take her recommendations.?

Best of luck to you and I am glad your Doctor is willing to learn,
Joan

#4

I believe it is a slow process for some unless something like getting sick,going thru menopause,extreme stress things of that nature happens then it moves rapidly…Just my opinion…I had several lumps when I started doing research on what would cause lumps under the skin and pain and that is how I found out about DD…I have always had the lumps- they are just growing faster now that my body is stressed because I am in menopause.

#5

Hej,

I have to say I am so fortunate that my bumps don’t seem to be becoming worse and a few of my strange symptoms don’t happen as often as before. With that being said, I’m still in pain all the time and never feel good, so I’m not a lot better … just not worse.

I wish you the best with your upcoming dr. appointment.

Lisa

#6

There is no one here in Memphis,TN that treats DD as well but I had emailed Dr Herbst and took the emails along with all the info on DD and a chart where I compared all the complaints I had come to the Dr about with the symptoms of DD and of course Dr Herbsts’ email and phone number( which I found on another website called Dercums’ Hope) to him and he is following her suggestions on care of a patient with DD…Good luck…

#7

Hi and yes, mine came up and spread rapidly all over my body. I went from a size 7-9 to a 20 in a short peroid of time too. It seems that I’ve had it forever already and it’s still rapidly reproducing. I had a psychic one time tell me that what I had grows like cancer and that they will never “figure out what it is exactly” and tho it would not kill me young, I would be in pain all my life. Then he said that despite what it was, I would live a long eventful life because I would make sure that I lived, eventually.

Well, I’ve just exited the grieving process and am just now entering the acceptance and deciding how I can live with all this and still do the things I want to do. I still have some depression at times but that’s impossible not to have when you have a chronic condition that changes your life.

Just to those of you who dread the future or are afraid of it since DD has just taken over - you can have a life with it but it takes a lot of grit, determination and pain tolerance on your part. However, you do have to have your good support system in family, friends and healthcare professionals that have open minds to what you tell them because every day is a new day in the world of DD and educate yourself about this condition and remember to take some of the information out there with a “grain of salt” because everyone is uneducated about what this disease is. It is not a “fat woman’s disease” - there are plenty of men with it. In most cases the condition causes the obesity not the reverse, etc. This condtion affects every single person in at lease a slightly different way so there are do prodictible levels or courses with this disease. It happens to you as it happens to you and you have to direct your medical care.

Good luck and remember that you will live, just not easily, a long life in most cases, so just enjoy every day for what is positive in that day.

B

#8

Me too, B! You put exactly what I already think and know into words better than I could. Well said!

#9

I agree…twogirlsbebe said it well. My pain doctor who is leaving said today that he looked DD up on the computer after I came in the first time…so some progress…at least he has heard of it now! I have to find a new pain doctor now. I think it can come on pretty fast or maybe you just find out what to watch for…feel for? It did take 40 years to encompass my whole body.

#10

Wow you said that perfectly. I almost cried cause it is so true. I’m also done grieving and just learning each day to get by with what I can do. Trying to be happy while in pain is the toughest thing to learn but worth doing, cause the alternative is even more depressing. God bless you, and each and every one of us. Always keep an extra spoon!

Have a Smiley Day…Love, Pam

#11

Thank you all for your kind replies and advice. I saw my doctor on the 20th, gave him all the info I had downloaded from the web, which he was greatful for. He said he had heard of the disease, but I don’t think he had. He is researching it, he said he would have diagnosed it as painful fatty lumps.

I have some under my right rib that are very large, and getting more painful all the time. He said that most insurances wont pay to remove these.

Is there a diagnosis that would change how the insurance deals with this disease ?

I did get my pain meds, I am on 20 mg of oxycodone extended release 3 x a day, with 5 mg of oxycodone as needed for breakthrough pain - he gives me 120 a month of those. So I “control” the pain, not that it goes away but I can tolerate it.

I am a cheerful fun loving lady who has been through much in life - I lost my first husband in an auto accident when I was 23 and pregnant with my only child. I had some mysterious ailment in my achilles tendon on my left leg that required numerous surgeries, and to this day is extremely painful. I broke my knee - shattered it beyond repair, in Dec 04, and now this.

But I won’t let it get me down, I believe in Jesus as my Saviour, and I believe He has a plan for me, and is holding me in His Hands. So I try and stay happy and hopeful.

Hugs to you all, hang in, and ty for having this place so we can talk !!

#12

I am so glad that you have a good PCP. Mine also started in my rib cage 40 years ago. I never had any lumps removed. I don’t think that would do any good. I now have lumps in all the fat on my body. Some are as big as walnuts and some are very small. More come on all the time. Today, my right ankle under the round bone is red, hot, painfull and swollen I am also sick to my stomach and my glands in my neck are swollen. I think these may be related??? I am dizzy from the Neurontin?? The doctors don’t know what is causing the ankle pain. I had a MRI on the other foot once when it was red and swollen and it said that I have a sprained ankle. I do not have a sprained ankle and I would not have sprained ankles all the time in one foot or the other for years. I wonder if DD could be the cause??

#13

Oh yes, my ankles have given me heck for a long time before I could see the lumps. Now they are always swollen and have very large tumors all around them. The largest lumps on my body are more grapefruit sized. I also have some the size of rice grains and every size in between.

#14

Mine hit me fast and furious. Last summer, I kept noticing them under my arms and in my breast. Then, in November, I think I started noticing them in my upper arms. THEN, one bright, sunny April day this year, I woke up and felt like someone ran over me with a train 5 or 10 times! I had lumps all over within 2 weeks and to this day they continue to multiply like rabbits! So, in my experience, YES, it does move like wildfire!
Judy

#15

Have a Smiley Day…Love, Pam

#16

I have a question. Have any of you guys lost teeth since your DD arrived? I have had to have 2 back teeth removed because they died from the inside out and I just broke another tooth on a sandwich. Tells you how weak my teeth have become. The nerves are exposed but it’s not really all that painful, even when I’m drinking iced water.

My dentist told me that it’s very common with his patients that have AI conditions - partially from the patient having a dry mouth b/c of AI and other various reasons.

So I would appreciate it if any of you would let me know if you’ve lost teeth so I know I’m not alone as I slowly become toothless!

Thanks you all,
Benita

#17

Yes, I crack a couple of teeth every year. So far, the dentist has saved them with root canals and crowns. I have another cracked molar now. I don’t even know how I cracked it!

#18

Oh Dear! Sigh! Yes I am cracking about two teeth a year and having them crowned. One couldn’t be saved. What is next? It reminds me of a movie which starred Shelley Long and Bette Midler. They were ancient but kept young looking somehow by doing something with young people. Eventually they started to age all at once losing teeth, hair and body parts! Hmmm?

Joan

#19

Re: Callekitten’s bad leg break. I fell and shattered my radial head in my arm 10 years ago. It did not break, it shattered and had to be removed. I regained as much use as possible through physical therapy. I wonder if Dercum’s causes bones to weaken?? Also, my teeth are cracking and I am getting caps on old fillings as they are cracking. My dentist asked me what I was doing to my teeth. The top of my tooth broke off recently. I wonder if DD causes lose of calcium and weakens bones and teeth??

#20

I posed that very question to Dr Herbst and she said she had not put that question in her survey but that she believes DD interferes with the absorption of Calcium so hope that helps get more study done for the disease…We certainly need more people to learn about it…Heck now fibromyalgia is heard more and more on tv…I hope someone picks up on DD and does a special on it…Im ready to be back the way I used to be…You guys should have seen me trying to get up in the bed of our truck to take pics of our Christmas parade…Im sure it was hilarious to someone…not to me…I felt like a crippled whale…