Wish Me Luck!

Dercum's Disease
#1

Hi everyone,

Well I have been reading your messages to each other over the last few months and have learn’t so much more abour this desease than anywhere else on the net.
I’m seeing my Doctor in Australia tomorrow, Thursday, and have my black marker ready to mark all the tumors. It’s a bit of a giggle really as my lumps are so close together so I will look spotted.
I cannot believe how many lumps I have - it’s unbelievable how quickly they grow. I have been on the doctor trail for 5 years with mysterious ‘blow-outs’, little did I know then thats when the little buggers were having a growth spurt.

It’s only recently that I have been having a general pain in my upper arms and lower legs - aching constantly. In the last 2 months I have had electric shocks run up my right arm and my fingers curled inwards - scary - my daughter had to grab the shopping bag off me. The lipomas in my abdomen are very sore and tender and growing huge - there is so many of them I wonder how they will all fit and look after a few more months. Like the rest of you all, when I have a painful lipoma removed 5 more grow back in its place so I have been putting this doctors visit off for 14months (thats when I was orginally diagnosed).

I am not obese, maybe a little over weight (self indulgent). I am a 46 year old female. I am a Community Coach and go into schools to teach them different sports for fun and fitness. I coach netball teams, ride hydro bikes, swim, play netball (veterans), go to the gym intermittently, work 4 part-time jobs (one being our own business), run a household of 4 (eldest daughter moved out) and am taxi to everyone as my daughters are very sports orientated and play several sports & train every night after school. So I am active enough for now but have noticed that fatigue hits me whenever it feels like it.

The lumps under my feet ache and love a good rub and seem to be slower growing than the rest. I truly wonder for how long I can keep up this pace as I’m too scared to admit that Dercums will be a problem in the near future and thats another reason I put off this doctors visit. I just don’t want to admit that this disease will incapacitate me eventually. I read about what this disease does to some of you and how the doctors/family treat you and it scares me silly. I sometimes push myself to exhaustion just to prove that I can and feel like i’m beating this thing, then I have a blow out and just ache all over, feel crabby and emotional at the same time and discover either more lumps or bigger ones…

I’ve noted the drugs that some of you are on (they will prob be different in Aussie) and hope that I wont need a drug regime for sometime yet. I take nothing at the moment, even when the pain is almost unbearable, as probably like most of you, i’m trying to cope and learn to live with the pain. I have 2 hour hot stone massage every month - absolutely lovely for three days after. I also believe that the beautiful massage relieves me temporally, but encourages the tumors to grow quicker as they too love the massage. It’s a no win situation…

GrandmaSylvia your last post was an inspiration to me and Brennie I love your pics. The recent post ‘what about your spouse’ was a sure eye-opener. My hubby at the moment is great and worried and I think sometimes scared as I am usually such a strong person. I showed him some pictures of a dercums sufferer and he went very quiet. The pic was a very thin person with lipomas of all different sizes and shapes literally all over their body, quite dreadful for them.

Anyway, again thank god for this forum and to you all. Fingers crossed and wish me luck…
Cheers
Chez

#2

HI Chez,

You may have better luck with doctors since you are in Australia where DD is listed as a disabling disease and more doctors are at least aware of its existence. I hope so, for your sake.

It sounds like you get a lot of exercise. I need to warn you most forms of exercise are not good for us. The excess connective tissue we have can tear even with stretching. Weight lifting is especially bad. Be very careful you aren’t speeding the progress of this disease by doing too much! Swimming is the best for us. You can do that safely, especially in warm water. Good luck with your doctor visit. I hope all goes well for you.

Pamela

#3

Thanks for the advice ozziespamela (luv the name), and thanks for the hugs GrandmaSylvia & Stonel, I can feel them from way down here.

Am shooting off to work now (1pm) and when I get home you will all be snug in your beds. So Good night from me for now.

Cheers, Chez

#4

Hi Chez

Please let everyone know how it worked out. I am with you on the hot stone massage! :wink: My lipomas grew rapidly when I was getting massages. So, I quit. Have you heard of Reflexology? I used to do that for my family until my hands got soooooo bad I couldn’t anymore. My advice to you and everyone is find one. Go to several because everyone is different in touch. Make sure they do the Ingham Method of Reflexology. If you haven’t heard of it research it. It is truley amazing. They don’t take insurance but I have seen it do miraculous things. I haven’t found anyone around me so good luck! Keep us informed and hugs to ya! Linda

#5

Hi Chez,

I wish you luck at the doctors and hope you can find a good one that will listen and try to help. Although there isn’t much in the way of help at this time, there are things you can and shouldn’t do. One is avoid steroids at all costs (in many of us, they have been the catalyst to progressing the disease) myself included. I too am not taking anything on a regular basis for the pain, only when I absolutely cannot stand it any longer, I will take a half of a Tramadol or 1/2 of a muscle relaxer. This is when pain is for me above a 8 or 9 level on the pain scale and I just can’t cope and need the help to bring it to a 6 or 7 perhaps. I’m never pain free, but most days I can deal with the lower levels of pain.

The electrical shock you speak of is what I experience often, but for me it either runs from my buttocks down the backs of my legs or from my feet up my calves. Occasionally I’ll get them in my arms, but mostly it’s the back and legs.

Anyway, good to hear from you, keep posting and reading and know that there are many of us out here willing to lend an ear when you need to cry, vent, laugh, etc. You emotions will run the gambit as I’ve seen personally. To go from acknowledging something is wrong, getting a diagnosis and then accepting this is your future to then calming down and learning to live differently so as not to exacerbate the disease.

I’m still learning, and have my moments of anxiety, depression, and just plain old worry, but I know that none of that helps me so I usually tamp it down as quickly as possible, and reading the posts usually helps me do just that.

Take care and good luck.

Suzann A. Cheney
Administrative Assistant
Graduate School/Government Relations/Provost Office
Clarkson University
PO Box 5625
Potsdam, NY 13699-5625
Tel: (315) 268-6738
Fax: (315) 268-7994

#6

Good luck with your doctor, please keep us up to date. I hope you have better luck with getting through to your doctor that some of us have.

Sounds like you are a Super-Mom! I still work full time and have a fourteen year old son still at home. My other son, well I am still his taxi service everyweek he is having car problems. And I really don’t like to drive that much because it makes me hurt more.

Chez you sound so much like me. Although I am not an athletic person at all, I have always been on the go. I miss being able to get up and go. I try to stay positive but sometimes I am overwhelmed by the limitations I am facing.

I have the lumps in the arms which are the worst, upper thighs and the bottom of my feet, sometimes I can barely stand on them. I have gain so much weight from this it makes me sick. I cannot stand to wear anything that binds me especially over my arms. But I don’t dare wear sleeveless because it never fails that someone will say something about my “blue” lumps and I dont’ like explaining this diseaseto people. Some just look at me with this really blank look, “I’ve Never heard of that disease!” Well believe you me I wish I hadn’t heard of it either.

I don’t like that I am self concious now, I was once a averege semi thin sorta cute young woman now I feel like a lumpy baloon. Ok now I am going on too much. I ramble!Sorry.

I have tried excercising but it always comes back to haunt me, it usually puts me down for three to four days, my body reacts bad to it. I used to walk all the time now I can barely stand.

God bless us all!

Brennie

#7

Chez,

Ozzie is my favorite dog and my name is Pamela!

Ozziespamela.