DD progressing - getting forgetful

Dercum's Disease
#1

I wondered if anyone else has their DD progressing too…

I am having a lot more stings in my back and arms…I took a shower last night and for the first time ever I had pain when the water hit my back…

I am losing my memory fast now…I couldn’t find my cell phone yesterday so I just didn’t think about it for 3 hours I wondered where I put it even going outside and looking…

It didn’t even occur to me to call it from the house…my husband came home and told me he found it …outside on a window sill…why it was there I dont know…I even forgot my mothers’ birthday…Im losing my mind…is anyone else feeling like this??? Is this part of the disease?? I ask so many questions because I need answers…

#2

Sweeite, I do know how you feel. I feel like I am gonig crazy because I can’t remember anything, I have always had a great memory. My boss who I have worked for for fifiten years depends on my once sharp memory, now I have trouble remembering simple things, it makes me angry because my mind just won’t work like it used to. You know I lost my cell phone a while ago and I still haven’t found it, but I still think its somewhere in my house. My Husband bought me a new one for Christmas. My husband has a hard time adjusting to me forgetting all the time. I got in trouble with him by forgetting to write down debit purchases or checks I wrote and messing up my checking account. I have made some really big mistakes. Its so not like me. I still have a pretty good long term memory but I feel my short time is gone. I am sorry I ramble a lot. I too have so many questions so many I don’t know where to start. I have had the flu for a week so I have felt pretty rotten lately and I always get more depressed. I need to work but its getting so hard. All I want to do is stay home.

God Bless,
Brennie

#3

Hi Brennie !
My name is Jan and I am new here. I can completly sympathize with your symptoms. I am a nurse and have worked cardiology my( favorite medicene) for 20 yrs. I had a bright idea in 2005 to try a different specialty. UROLOGY.

I wanted to work with kidney cancer pt. The Dr I was working with was a great surgeon and Dr. THEN ! He started having marital problems and man what a mess things turned into!
Alot of the office was my responsibility but I found a lump inbetween my breast on my sternum that started to really hurt. Especially under STRESS!
I went to a surgeon in our building and within 1 week had it removed and went back to work next day. No problem. Path report stated lipoma.

I started to have to change our appointments,reset surgeries because he was so stressed and had attorny appt and this and that. Pt’s were becoming upset and I had to do alot more phone triage.

I WAS STRESSED! and wham 3 more lumps appeared! More pain then I could imagine and I started forgetting alot. My memory was almost photographic. Oh well, NOT NOW! I can’t find anything if I had it 5 min ago!
I have done alot of research on this, in depth. They all want to treat it as Fibromyagia.

So far I have had 9 surgeries and over 180 tumors removed 3 the size of grapefruits. I had my last surgery Sept 12 2007 and have had one problem after another. I still have drainage tubes that are suppose to come out on
Fri 2-8 at the University of Michigan. I have a plastic surgeon there who is
wonderful! Will sign off, don’t want to keep complaining. I hope you have a good day ! We all pray for 1 of those.

Sincerely,
Jan

#5

You are so NOT ALONE about this I am 39, remember I am the one on oxygen (which they can’t figure out why). I feel like that pretty much everyday. My daughter (20yrs) just said to me the other day its pointless to talk to me sometimes because it makes her feel like I don’t care because I forget what she says 5 minutes ago. She is still in denial about my DD Day by day honey. That’s all I can say. Try to live each day to the absolute fullest and don’t obsess about the DD or you will make yourself worse. Try hard to stay positive and rely on others in the careplace to let it out. You know I luv ya!

Hugs,

Linda

#6

HI Just like to say i am also on oxygen at 37 they said it was a problem with myheart and asthma the heart was repaired asthma improved some yet still on oxygen, lumps growing bladder packed up vision keeps going blurry,all drs confused GP has asked the dermotologist to reveiw me thats a laugh he gave me a diagnosise 2 years ago then discharged me wit no explanation,i think its me who’s got the right to be confusedbut my memory is so fussy i forgot how to be lol hugs to you all HELENA

#7

Thanks all…I learned that God must have a plan for all, as we had no damage from the tornados in the area …whereas others lost all ,even some lost their life…and a tiny miracle kept me reminded who is in charge…the 11 month old baby was found alive 100 yards from his destroyed home while his mother was killed…I have found the lump in my stomach area is getting larger and I believe it is what is causing my gastric distress…I wrote my Dr a letter and enclosed some more info from Dr Herbst as I never can reach him by phone…Im praying he reads this info as he read the last…I even enclosed Dr Herbst’s phone number and asked him to call her and get her recommendations for my care…I am just tired of being sick…Thanks to all I know now that I am not alone and I fell better knowing I have company…

#8

Oh gosh I have had alot of lump activity today…I actually took a second pain pill…so many stings all over mostly in arms and legs…I fell ALOT more lumps now too…

#9

hi all - just wanted to comment on the itching/stinging. Doctor put me on lrcria, 75 mgs to start at night, and now has added 75 mg in the mornings. I can’t tell you the difference it has made. All though I am really sleepy most of the time, I will take that as a trade for the itching/stinging I had all over.

Bumps and lumps still appearing everywhere, specially in my hands, on the tops, and in the thumb joints, and in my elbow joints. The tops of my feet are full of new lumps as well.

Yes, my little group of aliens seem to be increasing at their own will. I have BAD pain under my right knee all the time. That’s the knee I had replaced. When I talked to my orthopedic surgeon, he was blown away. He had never heard of dercums, all though after I gave him the paper work he said you know Carin, I have seen hundreds of these cases just never knew what they were. As well as being my dr. he is my pal, one of the nicest guys you would want to meet. He was so glad to get the information I gave him.

I have decided that once a week, I am going to deliver a package about Dercum’s to a Dr.s office. Its not much, but I can do my little part.

In the mean time i keep getting lumpy and bumpy. Hope the Lycria helps some of you as much as it helped me.e

#10

Helena,
Does your oxygen drop when you are just sitting and talking? Have you had an overnight study done of your pulse ox? I had 2 so far and just when I am getting into my second stage of sleep my o2 levels drop down to 50% and go back and forth up to 80%. Weird I know.

My internist who diagnosed me is sending me to Minnesota to see a team of Drs to try and diagnose my o2 problems. I have had my heart totally checked out and my lungs. I only have a little scarring in my lungs from whooping cough as a baby and pneumonia a couple of times but I did all the lung function tests and everything was normal. My doctor (internist) is completely stumped!

Are you on disability? I had court for mine on Jan. 4th and the judge has 8 months to make a decision. I filed Dec. 1, 2005. I want to continue talking about this. My doctor and I are convinced its the lipomas but I have had mri’s and scans off all kinds and everything has been normal. My breathing is fine too! please write back, hugs linda

#11

After my wonderful weekend with my daughter, I am exhausted and I hurt all over, shoulders, elbows and my legs! They are getting worse by the day, they ache and I have several new lumps and now they are popping up below my knees. That was the one area that had not been effected yet, oh well not anymore. I was walking through the house and I had this numbness in my leg and then pain in one spot and looked down and now I have another “blue Dot” that is what I call the really painful bumbs. They turn blue and burn like fire. My legs feel like logs I am dragging around behind me.

My arms are getting so bad I have an hard time picking up my left arm to answer the telephone. I itch like a madwoman too. I would say the dercums is progressing pretty fast right now. I loved getting my mind off of it for a little while, but it still with me and getting worse all the time.

I have to try and see another doctor soon, I am thinking of a neurologist for tests, the numbness is getting so much worse.

#12

Well I havent posted alot lately as I have hurting hands…I thought I had hurt them somehow…But now I think its DD…My foot is really bad too…And the back of my neck has the hump still growing…Yesterday was the first time that cooking dinner or cutting my husbands’ hair ever made me cry…I tried to tell him how much my hands hurt but all he ever gives me is attitude…I wished him to have something like DD come on him I was so mad…

#13

I am not sure what it is with our partners,that they cannot except how much real pain we are in,wether it is guilt and frustration because they cannot help us or if they stay in denial we will keep being mother to them.
I know for one my hubby can bereally nice and understanding 1 minute organising the cchores with the kids ordering a takeout for tea, the he will go back to his bed virtually crying that his knee is in so much pain COR! if only i had pain in just the 1 place what heaven. So i am sure it is a man thing need to be the carer and provider 1 minute need mothered the next give us strength .

#14

I know how you feel. Sometimes I think the world would be a kinder place if everyone had to experience this kind of pain( just for a little while). People who have never really been ill don’t seem to have the empathy and compassion of those who have.

That said, I wouldn’t wish this on anyone.

#15

Hi Brennie,
I have all the pain and numbness problems you mentioned too, but you should know they do come and go. Some days I can’t lift my arm at all, then it goes back to “normal” just as suddenly as it went bad. Same thing with my legs. They can torture me for weeks on end, and then suddenly I’m walking normally again. I will say that my right leg, or a large portion of it, always goes numb when I spend more than 5 minutes on my feet. The feeling comes back when I sit down, so I am assuming there is a nerve getting pinched in my back. There is an enormous tumor on and around my lumbar spine, so I suppose that is the one causing the trouble. The lumps below my knees are huge, especially on my left leg, and wrap around from front to back. I stopped wearing shorts years ago because people actually asked me about the big deformity under my left knee. It is much bigger now. Sometimes it hurts so badly I can’t walk and sometimes it doesn’t bother me much. Just wanted you to know you are probably in a flare, but you will not always feel as bad as you do today.

Pamela

#16

Hi,
I totally agree with you @ozziespamela, I get those flares and then I am fine until the next one. Its always something different every day. I know I have asked this before but is anyone else on oxygen that you know of. There are sooooo many new people I just wonder if anyone else is on it besides me.

take care and hugs to all.

#17

Yes, @Linda, someone answered you a while back and said she is also on oxygen. Sorry, I can’t remember who it was.

#18

Hi @Brennie7660 ,

Your description sounds just like me. I also had every childhood disease there was (except polio) and I had MRSA (antibiotic resistant staph infection) just four years ago badly enough to be hospitalized in quarantine for over a week. I started out a size 10 and have gained 150 lbs. I’m a size 28 or 30-lost track a while back. Most of my neuropothy is in my legs, but I also have ulnar tunnel syndrome in my left hand. A large lump in the outside of my left wrist is causing me a lot of pain lately. I wonder how long I’ll have the use of that hand? I agree with you on the surgery thing. I react very badly too, plus it just invites more invaders.

Pamela

#19

Hello

I alos have oxygen issues. I am not on supplemental oxygen however. I had the overnight ox test and my levels drop to around 80%-85%. I had a pulmonary test and found my lungs are at 93% which is good. I alos sometimes wake up freezing cold even though I have been under 7 blankets. I dont understand!!!

Rodney

#20

I haven’t been diagnosis with any oxegen problems per say, but I do have trouble breathing sometimes, like I can’t catch my breath, even though I sitting still or laying in bed. Then my heart pounds like crazy, but when I check my bp and pulse they are normal. I did have a heart monitor test it was inconclusive, no abnormalities with my heart. But when I am close to my GP’s office I go by and they put the o2 sensor on me and I have run as low as 82%, i have a tendency to have chronic bronchitis, especially after any stress. I am allergic to antibiotics so I do as much nutritional support as I can to help my body help itself. But when it comes to pain, I need my meds, no one gets between me and my meds.

I am in the process of finding doctors right now, I will be interviewing doctors to find out if they know about DD if not are they willing to find out about it and help me, if not I will keep looking. I am starting with a neurologist, I will need as much documentation as possible when I start the disability process.

#21

Nomad…Today I had almost the same problem about freezing…My hands and feet got so numbingly cold last night that I had to put the down cover on the bed too this morning(couldnt sleep and stayed up all night)…I had to stay in bed til I warmed up enough I guess because when I got out of bed to see about the dog I could not stop shaking from the cold…I went back to bed til I stopped and felt ok…Im not shaking now…