Hi I am Mandy
I live in Australia and I have Dercums Disease.
Looking forward to meeting new people and helping each other.
Cheers
Mandy
Welcome, Mandy.
I’m sorry we have to meet this way but I’m glad you found us! (does that sound like a contradiction? Why not, so much about this condition is! ;-))
I hope you find support and friendship and acceptance here, and look forward to getting to know you.
me< (aka Cindy)
Hi Mandy, It’s good to meet you! I’m sorry you have to be here, but glad you found us.
Pamela
Hello and thank you for the welcome.
I am 26 years old and have had DD for 6 years.
My father has it therefore it only took 2 years to find a doctor that would take my case into seeing what i have.
I had my 4 surgery 2 weeks ago and still recovering from it in bed. I also have Endometriosis and IBS.
I have two younge children which are very understanding when mummy needs to have a rest.
I go to pain management clinic to control my pain and meds.
I go to physio each week to help with pain to try to limit how much meds i have too.
My father has it really bad now aswell as other things like hepC. We can be there for each other but again we are in the same case and all here, trying to find something else that works better.
I will be looking forward to reading your experiences and sharing together.
Take care
Cheers
Mandy
Hi Mandy,
Sorry you are dealing with this so young! I suppose it is good that you know what is going on though. I had DD back when I was that age, mush younger in fact, but had no idea what was wrong until just a few years ago. (I will be 54 very shortly) I also had endometriosis until my hysterectomy when I was 25 and I have had IBS since childhood, along with a myriad of other maladies that seem to be related to this scourge, like Lipodema.
I hope you find the support and knowledge you are looking for here.
Pamela
hey,
Yeah i have read a lot of things on the net and a lot of people have taken longer and know what they have but no doctor would listen… its sad…
I was looking into a Hyst just last week. I am going to try the hormone replacement first and then maybe a Hyst. My gyno is looking into them both for me to see if it will stop DD and Endo.
We can only try…
How is your DD now?
Cheers
Mandy
Hi Mandy,
My DD is very advanced now but I am blessed with an abnormally high pain tolerance so I am still able to work as long as I stay in a job which allows for my disabilities. I don’t know how much longer I can do it, though, because my arms, hands and wrists have been under attack this year, and I drive a school bus. I have had to call in twice recently because I knew I wouldn’t be able to keep both hands firmly on the wheel at all times.
A hysterectomy will stop the endometriosis, but won’t do a thing for the DD. In fact, surgery of any kind seems to make the DD angry, so it attacks the incised area. Hopefully, if you have one done, you can have it done laperoscopally. (I had the open kind, with an incision across my bikini line)
I know several other Aussies with DD, so I am aware that your government recognizes it as a disabling disease and most of your doctors are aware of it too. I hope it will be that way here in the US and in other countries soon.
Pamela
Hi MrsRobbo,
I am in the UK, I have had lipoma for almost 20 yrs, i am now 40. I was diagnosed with DD only 3 months ago. I am mostly affected in my right arm, both hips and thighs. my left thigh is worse its now numb all the time. Sometimes i wish i was diagnosed simply with Fibromyalgia as there is more medical support here for that, there is none for DD. Although i am going to physio, they found i have ‘golfers’ elbow, and over the past few weeks i believe i have developed carpal tunnel syndrome. I believe its all down to the painful lumps in my forearm.
Sorry to hear you and your father are both sufferers. I am estranged from my natural father so dont actually know where my Dercums has come from as my mother doesnt have it. Although she does have a lipoma on her arm.
please feel free to ask anything you feel you need to ask. we are all here for support. start new threads if you like. or just browse them. you never know you may get some answers.
take care
geordielass
Hi Mandy,
I am so sorry you have DD, I was diagnosised about three years ago myself. Although I have had it for many years just didn’t know what it was. This is amazing group of people who truely care about each other, we all have times when we need to vent. Because hardly anyone knows what DD is and people who don’t know about it don’t understand it and because we don’t look sick sometimes we are treated like its all in our crazy heads. And when that happens its so wonderful to have a group to vent to and validate our pain and frustrations to. I thank God everyday for this forum and the wonderful men and women who are a part of it.
God Bless,
Brennie
Hi all,
Nice to meet you all.
I am really greatful that i found this forum, there truelly are some nice people here.
Sorry we all had to meet here but i strongly beleive that every thing happens for a reason and if it means for me to be here to support others than thats fine with me…
Feel free to read my journal each day and i hope it helps in some way to hopefully put a smile into your day:-)
I too have not much feeling in my left side so i know how that feels…
I have lots of fuild left and bruising after my surgery 2 weeks ago and i feel like i am stiched together and ready to pop out any minute. Its kind of funny on another note because two is in my left breast so i am enjoying the swelling as they look much bigger… lol… there is always a plus to things hahaha…
How are you all feeling today?
Cheers
Mandy
Hi Mandy,
That excessive fluid is one of the reasons I try to avoid surgery these days! It seems to be a problem with many of us and I had terrible complications as a result last time I had surgery. I hope you heal quickly. Enjoy the swelling while it lasts, lol.
Pamela
Hi
Swelling is great if only i felt good enough to enjoy them lol…
Yeah i am sure the lumps just keep growing more and more and faster since i started removing them. I had some major nerve damage in my chest wall in Dec last year and thought it would be better but i am told it will get worse. Some doctors really have no idea and they should really keep there mouth shut if they don’t know. I work in the medical industry and some of the things my paitents tell me is just really low…
Thanks to dec surgon I am now on sooo… much medication.
I really hate drugs so i try every day to give my body a little break to stop having to up the medication every week. If I hadn’t I wouldn’t be able to drive my children to school and day care.
Hi Mandy…I didnt know about DD until last Sept…But I have had it a long time and didnt know it…I know for a fact now that any injury can cause the tumors to grow…I fell last Tuesday and a hematoma formed in my forearm and now there is a chain of lumps in there…be careful with th surgeries…Im too scared to have them done…I had sme removed and they grew back fast and brought some friends with them…