What is Dercums Disease
Adiposis dolorosa, also known as Dorcum's disease, is a rare disease characterized by multiple painful lipomas that arise in adult life. It occurs most often in obese postmenopausa...
Join Now
|
living with chronic pain
|
Watch this |
| View More Posts Ignore |
Being told one has any kind of illness is not easy. this is hard enough. being told you have a rare disease and that there is no cure or anything to slow the process.... Is devastating. I am one of those people who has always been able to find a way through things. I had a very demanding job where most of the time I was putting our fires and finding a solution around things. But this ...this disease. Has just taken over me. It did not start suddenly but slowly progressing and growing till now where I feel completely debilitated. I am no longer able to work, or maintain my home. I have been living off my savings and IRA. Doing as much as I can which is always very little. I know all this sounds really bad. but its not the worst. the worst is the pain. I hurt always. The pain is constant, it's excruciating. I try to overcome it, to do the simplest things. The pain always wins turning my attempts into failure. I feel so frustrated. I feel like I am loosing myself, my way of life.
Posted on 07/13/08, 03:07 pm |
| 5 Replies | Add Your Reply |
| View More Posts Ignore |
ne the tip here is to make sure you get plenty of rest when you can. i feel i can sleep my life away. if i am awake for an hour i can sleep for 4 to recover from it. I too am in constant pain, i still work,, my job is a desk job so i can get away with doing it still for now. when i get out of a chair i feel like i am one hundred yrs old. i cant move, i stiffen up really bad, but the pain when i do move is unbelievable, i dont bash on about it at work, my colleagues know my situation, but will not want me to keep going on about it. I feel i may be suffering fibromyalgia too, i am under a neurologists, there isnt a blood test to show it, only trigger points as with DD, i have pain in places where there are no lumps, and some of my lumps dont cause pain, so i feel i may have other things going on too. stick in there and remember...plenty rest when you can 
|
|
|
|
||
| View More Posts Ignore |
Hi Sandy,
I know what you are feeling. I had to leave a job that I loved and am now home bound too. Thank God I have a loving husband that insisted that it was not worth the pain and suffering that I had to endure just to go to work and that what little energy I had should be spent on my family. Unfortunately the pain of Dercum's diease if not easy to control. I have had to learn by trial and error what helped me, and even then it didn't help the same every time. Narcotics don't seem to help me enough to risk the real problem of dependence or addiction. I found that Cymbalta helps me to cope on a day to day basis. There are good and bad days, and bad and worse days... But one thing I know is that they don't kill us. The bad days will make you misserable for a while, but you can learn to endure the pain. There are flaresups with Dercum's that can really be debilitating, and you will learn to recocognise when they are coming on and know to take it extra easy and rest and take pain meds. Then there will be some "good" days and you have to resist the urge to do too much or it can cause a flare up. I know, it is a catch 22... Reach out and talk to us about it. I want to help if I can. Sometimes just putting your feelings into words will help you deal with it in your mind. I hope to call you a freind and that we can talk again. CJ
|
|
|
|
||
| View More Posts Ignore |
I've just found this website after researching for answers for myself (undiagnosed over 4 years)
I'm not sure if I have this disease yet but I tell you a lightbulb went off when I finally found the disease info online. I'll get busy catching up with all the posts here but in the meanwhile just wanted to say Hello to everyone ! My personal story of living with an undiagnosed illness is: http://www.undiagnosedillness.org If anyone has similar symptoms I would love to have a chat xx Samantha
|
|
|
|
||
| View More Posts Ignore |
Hi Sandy,
Newbie here and just vented on the board. Totally understand where u coming from and can only suggest going back to doc to up or change pain meds to try and find 'something' that might work. I know how you feel and the feeling of losing yourself, but hey perhaps there's a new you to come out of it all. I've started an art course for me and only do it one day a week but feel great doing it. I can't do the things I used to so I try new things, that's where I discovered art. It's a good way of expressing how you feel, beleive me!! I also vent on my drum, just bashing it (yep it hurts the arms a bit) makes ME feel better! Trying and keep smiling, at least you know you're not on your own. Pacing also helps. I nap in the afternoon, and before I go out of an eve. Bye for now
|
|
|
|
||
| View More Posts Ignore |
Hello Sandy, I am new here I have ajob that require me to sit and stand I am amedical assistant thishelps because you are not supposed to sit long period or stand long periods. I work 40 hrs but I am unable to clean my house I just started acupuncture, and will be trying chines medicine for chronic fatigue along with my other medications I take. for the first time I have found the right dosage of medication for me where I am not suffering in pain 24hrs aday. I know some people don't want to take narcotic medicine. pain management and rheumatologist suggested acupuncture since can't do physical therapy and you could try chinese medication. I do take morphine, cymbalta, and muscle relaxents and they do work for me Iam now walking also. Try different options see what is right for you. Ican't wait to try chinese med. for fatigue. I will let you and everbody else know how it works. I loved me first appt. It was so relaxing I slept and stress just came off of me. I agree stiffness is terrible I had it everyday now I get it on occasions. If I can help anyway let me know , and I wish you pain free existence. hope and support Elch
|
|
|
|
||
| Add Your Reply |
