Dercums, The Invisible, Insidious, progressive disease no one can see

Dercum's Disease
#1

So, I was at my docs, we were almost done, and I had mentioned to the doc that I had some wax in one of my ears that I needed some help getting out, as my husband and I were looking into hearing aides.

So the doc had his nurse flush it out -ICK. But now its gone. Thats the good news.

A couple minutes later i mentioned that I was hearing a lot more - hmm what to call it - chattering in my ear. The doc and my hubby both lookedup and said what are you talking about. So I explained out the lovely lil noise that lives in my ears, now made even clearer by them being cleaned out.

My husband continued to look at me like I was from mars, or is it venus?

I have provided both of these men with all of the information on DD that is available to us on the internet.

Then I mentioned that playing on my son’s Wii game, I had injured my arm playing baseball. I threw a killer fast ball, but boy did I mess up my arm. The doctor felt it and said, yes, it feels like the muscle is swollen. In truth, there are lumps and bumps there that were not 5here before. Why can’t they feel them? I can feel it.

So then I asked the doc for a referral to a pyschiatrist. I was quite clear that I was not looking for a pain management person, but someone who could help me accept the direction my life is going in. And will continue goinin in until there is a cure.

Hubby says why you need that?? In truth, dealing with the fact that I have a progressive damaging illness that will last until I die, is very hard for me. I need some help. Most of my friends and family don’t believe it because they don’t want too, or because I don’t LOOK SICK.

Im sorry to ramble but I really got hurt today. So after 3 grueling hours at the doctors office, and another 2 hours to get there and back, when I got home I was exhausted. I was supposed to babysit my grandbabies from 7 PM until whenever my son and daughter in law got done with their party. I called, said can I cancell, I am exhausted. She said let me call you back, my son wasnt feeling well either.

They called back and said could I come at 8 PM instead, they would have the kids in bed. I agreed, its so hard for me to say no to them.

I got there, the kids weren’t in bed, but gave me minimal trouble, really. All is quiet. There I sit.

So - this is the good news. I decided to go Wii bowling. it is really close to the real thing, only i can do it sitting down, and the “ball” only weights as much as a remote.

I bowled a 245!! That was so awseome. My highest ever. Seven strikes in a row. Wow.

I left it on the screen for my son and daughter in law to see when they got home. I was soooooooooooooo proud of myself.

Well I waited and waited and waited, I had kinda figured my son and his wife would return early, knowing how exhausted I was. They returned around midnight. They oohed and ahhed over my game, and I got in the car to come home.

We only live 4 miles away. I am exhausted. I will pay a big big price for tonite. No one will believe that except you on this board.

Maybe I am being a baby. I guess i would just like to be appreciated.
And Believed. And Supported. Hubby hates it when I talk about lumps or bumps or other aspects of the disease.

Ok My rant is over. I don’t feel better but maybe I will.

Hugs/spooons/kisses//best wishes//fairy dust

Calle//Carin//AZ

#2

I had a flare up yesterday and was couch ridden most of the day and when he got home my husband wasnt very understanding but Im learning to just go on with what I have to do for me…When we first got married it was fine I did all the cooking and cleaning and all in the house…I do what I can do and I dont worry anymore …We have had fights over his dislikke of some of my meals but I am not caring any more. I tell him there’s the ,it opens both ways…just keep talking on here it will help you cope too…

#3

Hello, Sorry you have been flaring. I think sometimes spouses forget that they could be the ill ones and how would they want us to treat them. I do feel sorry for my husband taking on so much but he is so kind about it now. I really feel for all the people that don’t have that. I know I am blessed with that. I am glad you know what you need to take care of yourself. I hope you are better soon and I have a couple extra spoons today,

Joan

#4

Calle…we know exactly how you feel. No, our kids don’t understand. We went out with our daughter’s family for dinner for my husband’s birthday last night. After sitting on the hard kitchen chairs at her house and at the restaurant I almost could not make it to the car in the handicapped spot. My hips just freeze up in this weather. The fog was so bad when we were driving home some cars were pulling over.

Two other cars passed us going about 85 mph, but we made it home. My son-in-law said something about my staying up all night and how his dad (who died last year) always got up at 5:00 AM. I said yeah I go to sleep at 5:00 some nights and take naps several times a day after I take my gabapentin. I sleep when I get doped up enough, and I am glad when I can get some sleep. I’m starting a new muscle relaxant tonight so maybe I will sleep. I was up all last night with my IBS.

Yes Calle, definitely get a psychologist to talk to. I have a great one that I found last year and go to once a week or so. I can tell her how I feel and she works at getting me to stop trying to be all things to all people. She says to lower my expectations of people and not to expect any gratitude or kindness in response to mine. She said that I appreciate everything and other people don’t! So stop just thinking of others and think of yourself. I let my husband cook and clean and I am working on feeling guilty if I can’t do everything like I used to. You all really need someone on your side! It is great to get confirmation from someone that you are living the best life that you can with the unfortunate horrible disease that your have.

Like I always say I wish our faces turned blue and we had big black Xs on our lumps so people could see how much pain we are in. I’m sitting here now typing to you when I can just look around the house and see work that I should be doing, but it is more important to try and help you Calle and the others if I can. I have gone through all the gradual changes in my life that DD causes so I understand how you feel. So please find a good psychologist and work on accepting that you can’t do what you used to do. Just try to be as kind to yourself as you are to others. I am the luckiest wife in the world.

My John is always kind to me and he is the reason that I have the strength to cope. He was 67 yesterday and has his own medical problems. That is what marriage is supposed to be “in sickness and health as long as you both shall live”. We just take care of each other and he resents any implication from anyone that I am not trying my best. My goal for the evening is to make a salad to have with our steaks. A special dinner for a special man! Here is a hint for a happy marriage. We have been married 41 years.

I have always expected the best from John and he has lived up to it. I tell everyone how good he is to me and I am so proud to be his wife. The “power of positive thinking” is a good approach to life. Now, if the DD would just listen and quit torturing me!

#5

I forget about the hearing comment. I have a hearing aid for my left ear and I also hear something like far away music when the house if quiet. I did not know this was a DD symptom. Please tell me about it and where you found out about it. Thanks Calle.

#6

I don’t know the full story of what is going on with you and your husband but we all seem to share a familiar story with our spouses. I keep telling myself that this has to be hard on them too. Men tend to want to fix things, and they can’t fix us. It has to be frustrating as well as worrying about us.

They have no comprehension of what we are going through and I think that is the whole problem. That’s why there is soooo many divorces when one spouse gets ill. Then there is the money thing, for some of us. My husband and I have been married for 21 years and we are both 39 years old. We hardly ever fight but since I was diagnosed Nov.05 we have argued a lot about the small stuff.

I tell him and my kids who are 19 and 21 that who knows how long I have to live. Who knows how long anyone has to live. You could get run over tomorrow. I only know that life is very short. Too short for some and I want to be happy not miserable for the time I have left. Choose your battles. Try to put the shoe on the other foot…

Love and hugs,
linda

#7

Callie, dear.

When I read your post, I could remember feeling everything you’re feeling. It does get better, if only in that those around us will catch on, especially after we stop trying to be everything we used to be, painful as that is. It hurts to miss family stuff, one time events. It drives me crazy to have my son buy $5.99 premium chicken breast when the store brand is on sale for $1.99! But at least he does the shopping. I’ve been grossed out by my own bathroom.

I’ve cried in pain after working a full day and then having to miss a family birthday party because it just wasn’t in me to go out again. But, people did begin to see it. They began to understand, at least in part, that something had changed. There are still hurtful comments, and I miss more stuff than ever, but Jason is learning to read shelf labels! And yesterday, my sister sent me a cleaning lady, since she can’t be here doing it herself. (she’s working two full-time jobs right now, the nut.) A clean house! Amazing. I can see by your profile that you are a Christian.

In the early days, only my faith got me through. I really think I’d have gone off the deep end, especially in those many months before I was diagnosed. I got really good at singing in my brain, just running my favorite hymns and praise songs through my head, over and over. And each biopsy or painful test, I reviewed every verse of Scripture I could think of. Jesus is able to bear all our troubles. Sometimes we just don’t rely on Him to do it.

I found a couple of people to enter in a prayer covenant with me - that helped immensely. It doesn’t change anything on the surface, at least not right away, but I’ve let people know that this is who I am. I am a sick person with many limitations.

I make it a point to do things now and again that hurt like crazy to do, and my family goes to great extremes sometimes (like hauling a padded recliner outside at a family party so I could be as comfy as possible)…you’ll work out your own way to deal with this. I wish this awful struggling part were over for you.

Hugs!

#8

Calle:

Just know that you are not alone! What you were writing could have been a day in my life. My daughter isn’t very understanding when I’m too fatigued to keep my twin granddaughters (2 y/o) but they just take so much energy to wrangle! Love them dearly but no one wants to hear, much less try to understand, what we go thru and how much of a struggle it is to just face another day of unrelenting pain and reminders of what you can’t do any more.

I saw a psychologist for anxiety and adjustments to what I no longer could do when I was working - saw him over 2 years and he was a great help to me. Then I thought, I’m okay now, I know what tools to use to deal with these issues but guess what - I’m going to start going back to him starting this Tuesday. Even the SSA psychologist said that I had depression and issues that I needed to work on secondary to having DD. Too bad SSA didn’t bother to listen to what he had to say before they denied me the 1st time. Still waiting to hear back from them re: appeal.

Everything is such a struggle, doctors, DD, etc. it just knocks us down constantly and stress is the worst thing for us, throws us into a flare.

Wishing you more serene days/nites,
Benita

#9

Hi - and thank you for your encouragement. I have to tell you I am having a hard time holding onto my faith.

I held on to it when I was 23 and my husband of 3 years was killed by a drunk driver, leaving me alone and three months pregnant with my only son. I held on to it through many many more incidents and life happenings. Car accidents. Pain. Spouse. You know, Life.

But I crushed my knee in 2004. Its not fixable. After 3 surgeries, 2 where they replaced my knee and one where they put in metal bars and screws.

I went online today and bought a nice firm cushion I can carry into church to sit on. But I really just can’t face this now, and reconcile it with what I know about God and Jesus and the things I have believed all my life. I am numbed.

More lumps, more aliens, more pain. Because of the sciatica I have in my left hip I cannot even reach down to touch my left foot. Had to have my husband cut my toenails today. How embarrassing. My son is not even interested enough to read what I took him over about DD.

AND NO one in my family gets the progressive part.

Thank you for your kind words. I am struggling to at least stay even with
the Baseline of Christianity I have had all my life.

Again - thanks.

Carin//Calle in AZ

#10

This email came to me from JhElai9@aol.com I understand…I have had ringing in my ears for ever…I had ear drum damage a long time ago and I have learned to ignore the ringing…Lately it is very loud…It is constant and Dr H says DD can cause it too…Here is what she said when I asked her…

"The hearing may be affected in this disease because of activation of proteases in the tissue that then affects any protein component near it. It also affects thinking. The idea here is to stop activating the proteases by changing your diet. "

#11

OMG i too occassionally have high pitch noise in my ears especially the right one, i always as with other symptoms shrug it off, another to add to the list for the specialist on wed. I hope everyone is doing well today. michelle x

#12

Do any of you think you hear music when there isn’t any around? Also, since developing DD, I’ve had horrible ear drainage which no doctor thinks is significant. I can’t hear as well as I use to but maybe it’s age but I’m only 48. Just wondering if anyone else is having problems with their ears? Since we’ve talked about all our dental, eye/vision problems wonder if the little alien buggers are all thru our heads/necks and just don’t show and are small enough or hidden enough that we might not feel them?
Benita

#13

Benita,

I have the gooey drainage, too. It will literally be down onto my face some mornings. Gross. But my hearing is quite good, and has remained so. (A rarity ni my family, in which a genetic hearing loss is prevalent. (My father, a sister, several nieces and my own son, just to name a few.) I can identify who’s visiting by the sound of their vehicles, and I can hear sirens before anyone else - which makes them think i’m nuts! :wink:

So, Benity, you are not alone with the yucky ear goo.

I do think Dercum’s is absolutely an invasive, systemic condition, despite the previous theories and drawings which showed where the tumors most often show up. I think it’s more likely that since these little nasties are so hard to detect, it’s been easier to just assume that the ones that could be palpated were the only ones. And there was no networking from one patient to another to say, “Hey, do you have…” That’s why this forum is so great. I think, if we continue as we have been, we can be the single most significant source of information about the condition. We seem to be bent toward listing and comparing symptoms, to isolate those which are truly Dercum’s related. We do encourage one another (thankfully!) but I most appreciate this aibility to talk to other Dercum’s patients to just figure out what’s what.

Yeah for CarePlace!

me

#14

My ears drain a lot too, and they itch constantly!

#15

yes mine too, I thought i had an infection, I constantly have wed or really dry bits in my ears too.

I was lying awake the other night … typical night as i too cant sleep unless i just taken my meds. I was reflecting on that day. One thing that really hit me is the way i am neglecting my 13yr old daughter. I started to cry, and vowed to do my best, every night i lie there and do this over and over. I get so tired especially when she is due in from school all i can do is sleep. I dont have the energy to have her dinner made. I have been stocking the freezer up with her giant yorkshire pudding dinners as she loves them. I know i should be making time with her but i am really finding this so hard. I hope she understands, and i understand her frustrations too.

My husband has been great lately. He is always asking if i am OK and how i am feeling. He does still occassionally have the glazed ‘oh no not again, lump talk’ look on his face, but he is getting better.

#16

My ears drive me crazy too! They itch all the time and drain too. I have periods of time where I hear things that are not there. It drives me crazy sometimes. Depends on how bad my day is going. Here lately I feel like I am rolling downhill and can’t stop. Out of controll, I can’t focus, can barely lift my arms to answer to the phone at work my productivtiy has gone down a lot over the last few months. I feel like a ninety year old woman. I am to young to feel this old!!!

I also feel quilty about not being a better mother to my youngest son who is still at home with me. He is fourteen and the sweetest most considerate kids God ever put on earth. I feel like I am failing him, he always makes his own dinner. Usually hot pockets, pizza or fish sticks all of his favorites.

He is a great kid I would be lost without him. This weekend we are driving to Austin to visit my daughter to help her with more wedding plans. It usually kicks my butt to make the trip but its worth it. Being able to focus on the wedding keeps my mind off everything else.

I appears we are all in the same big boat, it is a good thing we have each other to lean on when we need to cry or vent.

Love to all…
Brennie

#17

Geordie and Brennie

I appreciate having both of you to talk to. You are both lucky to have precious young teens still at home. Soon, they will fly the coop and your relationship changes, as you know. Brennie, I hope that you enjoy your daughter’s wedding. I was so freaked out about it all that I didn’t really enjoy myself. I sweat bad when I am nervous and I worry about that. How can you not worry when water is running down your face!

It was really bad at my son’s wedding and at our 30th anniversary celebration. People are so lucky who don’t sweat or have DD. I had to go up and light a unity candle at my daughter’s wedding and my shoes were too big. I had stuffed toilet in the toes just before it started and I had to try and suck them up as I climbed the steps to the altar. I should have refused to do it! The grooms mother a beautiful Japanese woman size 4 in an impeccable floor length fitted brocade had no trouble lighting her candle. A hairdresser had come to fix the bridesmaid’s hair and our hair and of course I insisted on going last so I had to dress in like 5 minutes…it was blazing hot in the room where we dressed.

Then I had to run to the chapel on the other side of the building in my loose shoes with the toilet paper in the toes and sweat running down my face and light the candle. We took photos before and I failed to notice one of my seed pearl earring had broken and I just had the wire in my ear. The bridesmaids had all been picked up in a limo to be taken to the church…I still have never ridden in a limo.

After the service, they all rode gaily off in the limos while I was being yelled at by the wedding planner to get our stuff out of the changing rooms as they had another wedding coming in. I cleaned up all the make up and stuff strewn all over and carried out like ten cases of stuff. And I had to clean up all the coffee and stuff they ate for breakfast. No one else was around. I missed the rice and could not find my husband who was off enjoying the festivities. You will have to have a better time than I did! The only luck I have is bad luck. : ) : )

Hugs and smiles,
Grandma Sylvia

#18

Hi there kiddo, Davana here. I want you to know that you are in good company with all of us here I think. My wonderful husband was asked by a lady friend of ours how I was doing and he told her he didn’t know but I hadn’t got out of bed but a couple days in a month and I take pain pills, morphine now and sleep all the time!!!

What? I hardly sleep at all. Yes, I am in my bedroon on my bed watching TV and tossing and turning trying to get out of pain in one position to another all over my body and I have sweats and then I’m cold and then I 'mexhausted and doze ff and then wake up and start all over. I just had a migraine for 3 days from trying to clean bathrooms and do some laundry and cook dinner for him knowing I would pay dearly but i couldn’t stand the smell coming in my room from the bathroom. I was just trying to do that interferon crap a few weeks ago becuz it would maybe help with my tumors too or at least some of Karen’s research study patients (3) I think she said it helped them) sooo… . l went ahead and tried it. I have been losing weight and feeling terrible and not able to eat before I went ahead with the treatment 157 lbs down to 123.

Well, when I went on the interferon it about killed me I think! I was very sick, I lost 12 more pounds turned ghostly white with dark sunken eyes was soaking wet all day shaking and puking at every smell. Like rotten meat and even the deodorizer made me sick. My legs wouldn’t hold me up they just stated shaking and I would be drenched with sweat… I even got gray hair in front all of a sudden. I had to quit taking it because my blood pressure went down to 60/102 I could barely breathe It was scary and I am just now starting to get my strength back.

Anyway this lady knows I am in AA for 19 yrs and I struggled with taking pain medication for a long time but can’t deal without it and I was just starting to come to accept that. I am a sponsor in AA and try to help others with their addictions and give them hope and today I got a card from my Lady friend and she has had a hard time with relapsing and she is now consoling me about "how hard it is and she understands the (UPS & DOWNS) of life. " Give her a call. I’m not sure what to think of that but I think she thinks I am relapsing or something thanks to hubby and I assure you I am NOT.

I have been clean and sober for 19 years on May 26th. I had an addict for a husband and went down with him back then but I walked away from everything i loved in the world and didn’t look back, Now because I have to take meds people treat me like its the meds causing me to be sick when I was sick long before I had to take them. I cry sometimes and stay in my room. I stay in here because it is the only place I can get some what comfortable once in awhile also so they won’t see me or hear me when I am hurting. My Hubbie says (You need to get outside and get some fresh air once in awhile!) Right! it is 40 degrees out and windy and Nowhere to lay down. Not what I want to do. They also want me to get exercise or go for a walk… etc.

They just don’t get it at all. Another reason I am in here with you guys on my computer. I have already fought and tried to do stuff and learned my limitations but they aren’t there yet and may never get there. I have to be strong and do what I know is best for me and not give up but also realize I will never be the way I used to be. It is a hard, lonely, scary, place to be, especially when those we love don’t understand and seem to be against us too.

I just printed out some more stuff about how someone else has no appetite and forces herself to eat a slice of tomato etc. But becuz I don’t feel like eating and had an ensure for lunch ihe says " How do you expect to get better if you never eat!) I just got done throwing up a couple days ago/// Geez!I want to bip him on the head with a newspaper and say WRONG ANSWER!

Thank God for you all!

#19

Imoon,

I am so sorry about your sister-in-law. I pray that you and your family get through this time in the best way possible. I know how painful it is to lose someone close to you. I lost someone very dear to me not too long ago and he tried to tell me he was dying, but I couldn’t accept it and wouldn’t listen to him. He died four days later and there is so much I didn’t get to tell him. He was one of my dearest friends, I wish I had listened to him. I know where you are coming from sweetie. But God will get you through it.

God Bless and gentle hugs,
Love,
Brennie

#20

OK, we all understand about the spouses. Mine is amazing but not always because he just doesn’t know. I like the comment you made about only us on this board knowing.
For the past few days my husband has been more sympathetic. The reason why is sad but sometimes things like this happen for a purpose.

Last Tuesday my sister-in-law (my husband’s brother’s wife) went to have an aneurysim repaired in her brain. She had been complaining of headaches for years. No one knew just what she was going through. Not the doctors, not her family or friends. Several months ago she began to have seizures. Thats when the doctors finally started to believe it wasn’t all in her head, so to speak.
If only we had listened, if only the doctors would have believed, if only SOMEONE would have helped her all those years ago, she may still be alive today.
That’s right, she died last friday. She was 47.
If only I had been nicer to her.

Anyway, my family now more fully understands how you can be very sick even when it does’t show on the outside so much.