How long have you had this?


#1

I read in an article that average life expectancy for DD is 52. I’m curious to know how old some of you are and how long you have had DD. Also I would like to know if any of you have flare ups like mine. I have episodes of severe pain that is mostly in one area like it is probably new growth, hot flashes with excessive sweating, cold chills, lowgrade temp, and fatigue that makes me bedbound for 1-5 days. These episodes are becoming more severe and more frequent with sometimes only 1-2 days of relief. Does anyone know the cause? Is it just the progression of the disease? What can I do about it? I filed for disability as I could no longer hold down a job. I feel like a total loser and I don’t have much hope for the future.


#2

hi
I am 51 had propably DD all my life. First episode when I was
19 and got massive weight gain and became a constant DD
sufferer at the age of 28. Many DD patiens get other dieases
and complications (heart, diabetes and other related things)
which may explain the age,also to social and economic
stress are difficult to live with. I spoke with an old lady who
was nurse and had DD. I asked how bad this gets. She said
that I don’t want to know. She told also that when people get older nursing homes do not understand DD.
She let me also undestand that many DD sufferes take their lives.
I think that the episodes of getting worse and feeling warm and cold are like times in rheumatoid atrit when it takes
a step down…I get better but I have lost some function or
got some new lumps…

Arieldiva


#3

I am 63 and have had DD since I was 21 at least. Mine has progressed every year. I can’t walk or do much of anything. I just sit in my recliner most of the time. I have to use a massager and strong pain pills all the time and I am always in a lot of pain. It really hurts to lay on the bed as the marbles on my sciatic nerve kill me. I am where nothing makes the pain ever completely go away. I can try and ignore it momentarily when I am very interested in something…like my grandchildren. I got a lot worse in the last 10 years. I don’t know how much longer I can stand this pain. I try to keep myself a little doped up so I am kind on sleepy all of the time. If I don’t the pain is too much. I could not be working and be in this much pain. I am retired and my family knows that I drift off. I don’t drive anymore. I still enjoy life despite the wide-spread pain. I have every manifestation of DD. It has now affected all of my body. I still enjoy my grandchildren and my life. There is always someone worse off…I have several friends who are totally disabled from MS and Lou Gerigs’s and can not sit up or eat and have to wear diapers. At least I can got to the bathroom. My husband does everything around the house. If I were alone I might not want to keep living but with him and my children and grandchildren I still find joy in life. I don’t have “flares” I hurt all the time sometimes more than other times but my best day is still one spent in pain. It never goes away so you have to do some mental work to deal with it. My advice is to find things you enjoy and do a lot of that. I don’t want to take away your hope. Maybe a cure will be found or at least a way to get rid of the pain. I hope that all of you keep trying to educate your health care providers and not let them treat you like a fat crazy person! We have to stick together and demand respect for our suffering. I printed out info and gave it to another new doctor today who of course had not heard of it. I don’t care what anyone says…I know that I have a serious very painful disease. I also suffer several other bad diseases like diabetes so maybe you all will not be as ill as I am at 63. I really hope that I don’t live to be 80. I am in so much pain now. I don’t want to live to be an age where someone must take care of me…feed me and change my diapers. I want to live as long as I can contribute something. I don’t want to be a burden on my children. My grandchildren will certainly remember me…I have made sure of that! We are very close and I have so much love for them! So you young women can expect to live a normal lifespan. I will probably go sooner from my heart disease or diabetes complications. Life is precious and I hope you are able to focus on something that makes you feel better. I love to read, eat, watch movies and enjoy the children around me. Hugs Grandma Sylvia


#4

I too have read that DD patients rarely live past the age of 54. I was really upset, I read that on the day I was diagnosised and its was in one of the first articles I found. Of course I have done a ton of reading since then and do not believe that at all. I am going to be a very old lady in a rocking chair yelling at the grandkids GOD WILLING!!!


#5

I have to say Grandma your post was most inspiring and definitly says
exactly what is happening to some of us…It was so inspiring that I have enclosed a
copy of the post with my letter to my Congressman explaining about DD and
why I need his help getting my disability…Thank you so much for saying the
words I wanted to say but couldnt…Hugs to you…

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#6

Thanks to you sweetie. I love all of you! Grandma Sylvia


#7

Good for you Lisa. Mother Nature is the best inspiration to turn to. It helps so much to keep in touch with our beautiful world. Remember that you have friends here. My family are all nature lovers. We try to get out as much as we can. Wow. now you have made me in the mood for a picnic! Keep smiling! Hugs, Grandma Sylvia


#8

I am almost 40 and I have had DD all my life. I developed arthritis in my knees when I was 5 years old. The problems went on from there!


#9

I am only 40 :frowning:

I really dont believe it either.

I may be bed bound but not coffin bound…by 54…hmmph


#10

Hi - I have just found this site. I have had Dercums Disease for 34 years. I stopped counting when I reached 300 of them several years ago. Like Grandma Sylvia I have all the same symptoms and take painkillers daily. Re: dying by the age of 54 - I am now 64 so I say to all out there worrying if 54 is the end - no it definately is not! You learn to put up and manage your symptoms; to enjoy life as much as you can; to not expect too much of either yourself or others and to just get on with it. Death is a part of life; there is no getting away from it but I will not sit/stand around waiting for it to come. I am going to live life to the fullest I can and do most things that I would like to do. One of my secrets is pacing myself during the day/week. I may have a well stocked medium sized garden but I don’t tackle it all in one go. Physical exercise like that would put me on my back for a week! I find that a little each day eventually sees the job done. Planning your days activities and interspersing rest periods works best and make sure you keep to your timings. That way any pain felt the following day will be minimal. Hope this gives you all more peaceful nights and takes away the fear of an early death. Gentle Hugs! Grandma Ann


#11

Hi all, ladymary here, yes to Nature and outside. I go out several times a week with my metal detector and just stroll and see what i can find. I eat a good breakfast, play with my pets, then go and after I come back I take a short nap…I’m beginning to take the dogs out in the evening for a short walk around one block. I’m having a lot of trouble with joints and aching/swelling but find the outdoor activity makes me feel good inside which makes the pain easier to deal with. The fresh air for those of us who can go out also makes me sleepy and I have a good nap, love naps…in the winter I just get busy with my crafts and movies which also make me feel good inside and about myself. Luckily I have a high threshold for pain and aching and if I didn’t I would not be so blessed to be able to do some things still. love to you all, Bev


#12

Thanks to all of you for caring enough to reply to my post. I consider you as my friends and hope to some day plan a convention or something so that we could all meet.Today is Tues and I feel good today for the first time since Friday(except of course the pain which I can deal with thanks to narcotics). My husband took me to a local state park where we walked around on the lake for a few minutes and enjoyed nature. I just can’t believe the difference a day makes. Love ya, Lisa


#13

I too am 64yoa and do 4 full days per week as a voluntary manageress of a charity shop and like AJay, I have learned to pace myself because if I don’t, I become exhausted and drop into sleep within 20mins of getting home and sometimes quicker.You must eat well and rest well and be as happy as you can be as that helps also. Live ,love ,laugh and be happy.


#14

I have never actually seen that article, but I have heard about it. It scares the daylights out of a bunch of newly diagnosed people, and whoever put that out there is very irresponsible! I’m 54 now, and I don’t plan to die this year or for a very long time.

Sylvia, you have an amazing attitude with all you go through. Good for you!

Hugs,
Pamela


#15

I am 54 and have apparently had this most of my life. Don’t worry about that article. It is pure garbage. There are people in their 60s and 70s who belong to some of the DD groups and one older lady said her forebears, who also had DD, lived into their 90s.

Yes, I get those episodes, but they rarely knock me down for more than a day or two. I don’t know the cause, but it is typical of DD.

Hang in there. You will still have good days you can enjoy.

Hugs and spoons,
Pamela


#16

Hi. ladymary here…I am going to be 60 on Monday and have had this disease since 1989…I’m finding it harder and harder to get along as I’m ALWAYS very hot and sweaty, go thru the periods of worse days than others but am always HOT…I get dripping wet with the slightest of energy expenditure. I use AC non-stop in the car, at night both AC and Fan and during the day high speed overhead fan and AC is it is very warm out. This cool period for me here in R.I. has been wonderful, but it is August and I expect more heat. So Grandma Sylvia I’m so sorry you suffer with the cold…I seldom need a coat all winter long, usually just a shirt over my t-shirt, this will be my second winter of not being cold…take care, ladymary


#17

Im 52 and I would hate to think this is my last year on earth…I dont think it is true so dont believe everything you read…I have obviously had this most of my life just never knew what it was and it was really not that bad til I started menopause and when stress got to me…