Hey are you all as old or older than me? I am 62 and ALL of my fat now is full of painful lumps. DD started when I was 22 and has gradually spread along with the development of fat. The hanging fat on my arms and abdomen is full of them, but so is all of the other fat. I see that some of you young girls have so few lumps you can count them and have some removed. If you removed my lumps I would weigh 100 pounds less!! It took 40 years for these lumps to cover me. Also, I have histoplasmosis, which is encapsulated fungus in my lungs. It is from inhaling stuff from chickens. It is usually only found in people who grew up in the Ohio valley, which I did. I gathered eggs in a dirty chicken coop. My lung x-rays look like I have pokka dots on my lungs. If I ever needed to take anti-rejection drugs like after a transplant, the fungus could grow and kill me. I wonder if any group member is as old as me??? If so, are they covered with lumps. I had a hysterectomy at 40. Maybe that made the DD worse??
I typed a long thing and lost it.
Anyway I haven’t been sleeping every night either. I watch it get light. The paper boy just delivered our paper and I am still up. It hurts when I lay down but it hurts when I sit up too. This no sleep thing just started when the weather got cold and my symptoms got worse. I never thought I would stay up for days at a time but I am. I don’t think it is a good sign!! I have been on amitriptylline for 20 years to make me sleep but it is not working. I take 2 Gapapentin, 2 Excedrin PM and the amitriptylline and I am still not sleepy. I have been reading a new book every night. It is 5:30 so I will get in bed and see what happens! Last night I slept at 9:00 and awakened at 10:00 with three phone calls in a row. Enjoy the game you Super Bowl fans!
Hello Grandma Sylvia.
I’m older than you…but not telling how much…lol. I’ve has DD since birth…symptoms started showing in my early teens…but I did not know what it was then…and yes my entire body is just one large lumpy excuse for a body really.
I have a long family history of DD…and now have 5 of my 6 children with DD.
Cheers to you.
Kay`K.
I’m 32 now, and still have a ways to go, but reguardless, I hope you do well. I hope that a cure comes soon, because for me, it’s rather bad.
I’m a male with this, and i have well over 300, only 200 are visible through the skin, but it’s enough. The fact that I’m not exactly far over weight at 210 and almost 6’ even just makes it to where everything is pressed on that much more by bones and muscles. It started when I was 24, just getting into the Army. I’m still fighting the govornment on that one, but I did find something out.
Perhapse there’s something to the Polio view after all. I’m not sure what, but it’s a prme suspect, since i’ve found out that four people out of the seven i’ve talked to have had contact with Polio in some form.
I hope the find something soon.
I don’t know what can be done about the fungus thing any more than anyone else, but I’d say pennecilin is your best bet. It has a way of killing funguses, since it is a fungus itself. But, it’s a good fungus…
Hope you feel better.
Hi - I am 54 soon to be 55. The pain everywhere is amazing. I cannot count the number of lumps, clumps, and marbles I have on my body. They are all over my hands, all over my feet - the tops of them, my arms are just chock full, specially at the elbow joint. My hubby went to feel them there and he said oh, your making a muscle. I said NO, those are the llumps. They are in single lumps, clumps, and if i don’t feel a lump or clump, then its like i feel a - gonna sound wierd - shiny slick area, and that whole area is painful.
Going to see my knee doctor on monday, have had the knee replaced twice, and I am sure I am going to have to educate him. Ah well, I feel lilke I am doing the medical profession a favor. I have these books all printed and ready to go when I see a new doctor. It contains several articles of information about Dercum’s disease, including dr karens paper. In addition I have 3 pages about me - my surgical history (I have had over 20 surgeries) my medicine chart, and page of all the Dercum’s Disease symptoms I have.
I will let you know how the knee thing goes. I am a little afraid, the knee is not very stable and gets stcuk an awful lot. Well we will see.
Hugsssssssss
Calle//Carin//PHX, AZ
I’m 48 years old, diagnosed 6 years ago. Had a hysterectomy 4 years ago. I don’t know that I connect the progression of my “lump invasion” with the hysterectomy, because the previous 4 years (two years before diagnosis and two years after) had been pretty wild with new crops coming up and causing no end of trouble!
Before that I’d only had lumps now and then. Various symptoms always, that now I look back and put them altogether I see that I’ve lived with this most of my life.
So that’s me in a nutshell. My biggest thing right now is not sleeping. I take Ambien, but it’s not working. About every other night I sleep. Oh well. I see my PCP next week - hopefully he’ll switch me to something else or increase the dosage. I am bright eyed and bushytailed right now. In about 5 or 6 hours, when my husband could expct a normal wife to look lively, I’ll be staring at things and falling asleep. Dunno how to break the cycle. Even if I stay awake all day, I still have trouble falling asleep. It’s not that I’ve got my clock switched around.
The list of garbage we live with is miserably long, isn’t it?
me
I got my first lump that was noticeable when I was 16.At that time I did not know what it was though.I had been thrown froma horse and knocked unconcious.ZI still have that lump above my eye but now another one is there to keep it company…Then I didnt notice anything until I was in my 40s and I hade three lumps removed.Then I got really sick in 05 and couldnt figure out why.I developed a “lump” in my mid abdomen and the Dr did not know what it was…In Sept 07 I started doing research on why I found a lot more lumps and looked up lipoma (what the surgeon called it when she removed the last ones) and found DD…It matched every symptom I had.Took the articles to my Dr and he agreed.But now I am fully aware of every lump and have been sick alot more and hurting more than ever…I even have the lumps along the scars from the C sections I had…and I still feel more everyday and Im 51…
I’m 43 and DD started for me when I became pregnant at 38 years old. I’ve always been clumsy (falling and tripping) and prone to having illnesses that affect the immune system.
I am 47, I have had DD for a long time, not sure when it really started because I was mislead into thinking it was something different. But I think mine started to get bad after Zachary was born in 1993. That is when I started having so many problems, healing, being exhausted, noticing lumps that no one ever paid attention to. I went to a ton of different doctors until I went to see the dematologist who diagnosed me with DD. He doesn’ tread it, and pretty much blew me off when I asked him for more details about it. SO I presented to my Nurse Practioner and friend, Rana Russell, she and I have been researching to find out how to go about treating it. She is frustrated like me not knowing where to turn for answers. But I have been seeing the Name of Dr. Herbst and I looked her up on line and I will be looking into her research and websit for help.
God Bless you, hope you have a pain free day!
Love,
Brennie
Sylvia, I’m 53 and I have had this most of my life. I am also covered with lumps, head to bottoms of feet.
My lumos also probably weigh in the neighborhood of 100 lbs.
I’m 53, and most people in my age group were given injected and oral polio vaccines during childhood.
My cousin died of polio. I doubt it caused the DD, but who knows? My triggers were several major surgeries and steroids.
I’m 48, will be 49 in July. I started falling years ago. Was in two rear-end car accidents - one in 1997 and the 2nd one in 2000 (this one was minor but caused problems anyway). I was given at least 11 steroid injections for my back. Therefore, I now have degenerative disc disease in all my back areas. Nodules have formed near those trauma sites. In 2001, I started with the shaking, jerking all over from the generalized myoclonus. In late 2002 I started noticing that nodules were forming in my forearms in strings of bb-sized nodules in the middle of my bones in my forearms and on both sides of my shin bones. Then they started in ernest about March 2003, upper arms, legs trunk, back, etc.
I’m now getting them in old trauma areas; i.e., lower back, neck, etc. I have a fat pad that formed in my left wrist area where I broke my wrist when I was about 12 and was skating and someone had thrown a brown cow ice cream on the floor of the girls’ bathroom and I didn’t see it and fell and caught myself with my left arm breaking my wrist.
Sylvia:
I’ve had horrible insomnia for the last few years too. I’ve gone through several sleep aids and was even on 2 different kinds at the same time - still would have bouts of being unable to sleep when taking the meds for an average of 5 days and 4 nites or even more. You can’t function very well when you haven’t had sleep like that. I’m now on Dalmane and it may take a while but it will knock out an elephant (me!)! You may want to try it.
Benita