Dercum's Disease Support Group

My husband is 36 years old. He has had awful back pain for the last 6 years usually lower but seems to be in different area.. Yes he is overweight and understand that can cause problems..

He was told he had lipomas.. fatty deposits. Dercums' is similar right? Is it possible that this is the case?

He has fatty lumps, probably about 10 or so on his back. And if leans forward slightly u can visabliy see them.. he also has some on his chest, arm, legs... back seems to be the main spot. We find new ones every so often.

He is (or at least to me seems to be) in a lot of pain... i can't believe he would fake this for so long. He has problems with standing for long times, lifting or moving things around. He seems to be comfortable only when he lies flat on his back.

He has been to the doctor multiple times, to the point where they feel he is just drug seeking even though he doesn't ask for anything other than flexeril

for slight relief. They won't let him change doctors or he will not be allowed to use the clinic in our area. The only thing the doctor will do is say lose weight, eat better and exercise. He hurts so bad he doen't know how to start with exercising. The doctor assumes nothing shows on xray therefor nothing wrong. He tells him its all in his head. Is it possible that he has dercums considering he was told he had lipomas? idk just need some advice

thanks

Sounds like your husband could have Dercum's Disease. Men do get this disease, just not as often as women. Tell your husband to look up Dercum's disease (Adiposis Dolorosa) on the web. If he thinks he has it, print off some copies of the articles on the web, print his name and medical record number on the papers, mail them or bring them into the Dr. he sees. It is best to get the articles into the Dr. atleast a few days before he has his next appointment so the Dr. has time to review them. One good site to copy is www.dercumsociety.com and another site is the one that most Dr.'s use when looking up rare diseases called "National Organization of Rare Disorders" (NORD). Look on the NORD website, click on "Adiposis Dolorosa" and print off the description for the Dr. to look at. Most of us have had a hard time with receiving our diagnosis because this is a rare disease and most Family Dr.'s have never heard of it. Dercum's disease is not even in most of the medical databases that the Dr. offices use in their computers. Most of us who have DD have had to seek out a dermatologist for the diagnosis and even some of them have never heard of it. Dercum's disease is more prevelent in the Scandinavian countries.

Hope this helps you and your husband. Keep in touch, let us know what you find, I wish you best of luck and hope for a quick diagnosis for your husband. Hugs and Hope, Celeste.

I should also tell you that if you husband has Dercum's Disease, there is no pain medication that will work for very long. The best medication for DD is lidocaine infusions, however, they are not used here in the USA. I am still searching for a Dr. who will give me lidocaine infusions for my pain. The pain you have with DD is chronic and is very hard to treat.

Removal of the lypomas is not recommended as they will come back and usually in multiples. The lumps your husband has sound large, however, like myself, a person can have many, many more lumps that can be as small as grains of rice up to golf ball size. Usually what you see or feel on the outside, there can be just as many on the inside attaching to organs and such.

Dercum's disease is a progressive disease and usually worsens the longer you have it. Celeste.

Welcome to the group! I hope you find it as helpful as we all do.

It certainly sounds like your husband is having a really hard time being believed and getting answers. And that is DEFINITELY common in DErcum's people!!! We tell many stories... And it definitely sounds like he may have Dercum's. Did you know that extra weight is also a symptom? Apparently Dercum's people typically weigh 50% more than normal. I know it's true for me! There is also a typical body type with upper arms fatter than lower arms and thighs fatter than calves. And a hanging abdomen. There are some pictures on the web. You might google "Dercum's pictures." I'm also going to give you a link to an article reporting research that the ONE U.S. doctor did. She talks about the common symptoms in DD people.

http://lipomadoc.org/pdf/K.Herbst-AD%20is%20More%20Than% 20Painful%20Fat-The%20Endocrinologist.pdf

My rheumatologist diagnosed me. Last time I saw him I gave him this article and marked which symptoms I have. I also did a show n tell to show him what my arms and thighs look like. He is learning along with me. As are many of our docs. The good ones are the ones that are willing to learn about it!

As far as exercise, see if you can find a book or web site that shows stretching exercises. There are many that can be done laying down or sitting in a chair. That is a good place to start just to gently get his body more flexible. If that works, he can try more. You do have to be careful with the type of exercise. I learned the hard way that strenuous repetetive exercise causes the thighs and arms to get fatter and flabbier rather than toned.

You are a sweetheart for checking and asking for him! Tell him to feel free to jump on anytime. There are a couple of guys in this group.

Keep us posted and take care!

Hugs,

Diane

Thanks for the quick replies. I have been reading in to the disease on multiple websites. Now as far as someone weighing more than typical with this disease does it necessarly have to be disporporitonal? I guess i am not sure about what that means. his weight seems to be mainly in stomach area. Calves seems to be normal size , upper legs a little flabbier. Arms seem normal other than not toned. Main weight gain in stomach.

We are cursed to live in a small town in the upper pennisula of michigan. So variety of doctors are not available i think the nearest dermatologist is around 3 to 4 hours away. I don't know if it makes a difference that most of this seemed to start after a major car accident about 7 years ago where he walked away with no visible injuries other than stiffness. but i am not sure the realation to the lumps. He showed me a new band of lumps that extend from his largest on his lower back (visibley size of an apple or tennis ball if it was set into his back) the band wrap around from this lump to his stomach area on right side.. you can feel a multitude of litte ones. there are ones in chest he found now that if you even brush your hand against he almost jumps in pain.

I don't even know how to go about to convince his doctor though, even with the liteture.. his doctor seems to discredit every thing he says... problably cause they believe he's drug seeking. He will go in there with extreme pain but when he tell the doctor anything the doctor almost immeditatly (at least from what he tells me) stops him, will not examine anything, look into anything and just tells him you need to lose weight and get your cholestoral down.. its so frustrating.

again i appritiate all who have given advice and hopefully we can figure a way to at least get the doctor to look into to this disease and not just blow it off.

Post edited by: asiahdai, at: 11/10/2009 09:26 AM

No, it does not have to be disproportional. I think we have many common things but no two of us are exactly alike!

Starting after a car accident fits in, too. And the band with the multitude of small ones - sounds familiar. I have some areas with big ones where they have joined together and then I have areas - especially on my thighs - where there are a gob of lumps but they are almost a solid mass. Those are the ones that are really messing with my flexor muscle which kills me when it flares up!

Sadly his doctor sounds like a total jerk. And that's not unusual. We've all had loads of those. Anybody want to share stories so he'll know he's not alone? I had 3 in particular tell me my weight was causing all my problems. End of story. One was my psychiatrist who had been treating me for severe depression for 3 years. All of a sudden it was my weight causing me to hurt which made me depressed!!!

Is this a GP? Do you have any specialists who might help? Many people fly out to California to see Dr. Herbst to get the diagnosis. Celeste is in Minnesota and I am in Indiana. Not sure how far away we are (I'm guessing at least 8 for me) but seeing our doctors might be an option. Sylvia is in Ohio. Anybody with a good doc who is closer to upper Michigan?

I think you are definitely on the right track. Keep reading - that helps. And don't give up.

Hugs to both of you!

Diane

It sounds like your husband has one good thing going for him...a caring wife! He will need your support if it is DD. When men get it it is usually milder but some men get very large DD lipomas. The other women gave you great advice and I agree with everything they told you. The typical weight distribution in women is usually a pretty normal looking body with a very large stomach hanging down and bags of fat hanging from the upper arms. The fat that is infiltrated with DD lipomas is heavier than normal fat so it hangs down. It sure sounds like DD to me. He must be in a lot of pain like the rest of us...poor guy. Your doctor experience is typical. Just do the info gathering like the other women advised and just keep going to doctors until you find one to help him.It may take a lot of doctors...but don't give up. Request copies of his medical office notes each time and copy them for each doctor. It took many years for my diagnosis...as no one even knew about DD until maybe the last 10 years. I have had it for over 40 years. My rheumatologist is with OSU in Columbus OH. Dr Kevin Hackshaw. If you can get a local doctor to educate himself about DD and maybe consult with Dr Karen Herbst..the leader in DD research. She is in San Diego. Check out her website for valuable info. Good luck to both of you. Your compassion will help him. Hugs, Grandma Sylvia

I just want to mention that you don't have to be morbidly obese to have DD. Your husband sounds like his weight is distributes just like mine. Mostly around the stomach area, my calves are normal size, upper thighs are getting flabbier, and the upper arms are flabby. I have probably many hundreds of tiny lumps, 50 or so medium lumps (sized up to a quarter) and just a couple of larger lumps on my back and waistline. tons of tiny lumps across my ribs.

My lumps also hurt when I bend over or to the side. Sometimes they itch, and when I scratch them, I let out a yelp, because I forget that they will hurt when scratched. I have also noticed that the lumps down the sides of my legs started up when I took up walking. this is when they also started itching alittle. I first noticed some slight bruising (probably from scratching) then the lumps got bigger. I am one of the lucky ones that the lumps have not been too much of a bother unless touched.

I do have all over body aches and weakness, sore and sometimes swollen wrists, ankles, feet, and my neck is sore on a daily basis. My fingers have begun the look like sausages and I can no longer wear my rings. My fingers seem to fumble with small objects, I drop things alot. These are all symptoms of DD. But not all people have all of this. Not everyone with DD has all of the symptoms.

When DD first started with me about 15 years ago. I was diagnosed with Fibromyalgia, (now that is in the Dr. database and fits some of the symptoms!) It even hurt to take a shower, the water seemed to irritate me. I was so weak it was hard to lift my arms up to wash my hair. Toweling off was another great chore along with lifting my legs to put on pants. I was soo tired, I could sleep for 14 hours per day. There were days I felt so bad, with general weakness, fatique, and achiness, I did not get out of bed. It even hurt to roll over. I believe that as time goes on, you learn to live with it and adapt. You face the fact that some things you just can no longer do. You learn to ration your time, ration your activity, ration your rest time, you learn short-cuts to do almost everything. Life goes on and you have learned to keep moving forward eventhough you are still achy and your lumps hurt, you are tired.

You feel like your body is constantly fighting some type of a flu bug or auto-immune problem. Your sed rate tests being slightly elevated confirm this, but nothing can be found on other tests. Your C-reactive protien also shows that you have some inflamation, but again, nothing can be found on other tests. All auto-immune tests come back normal or negative. (normal for people with DD) You have many, many tests done. All come back normal, negative or just slightly off, nothing alarming. Your memory begins to fail. You think it is probably just stress. Later you will find it is part of DD.

You have weight gain. Weight that is very hard to get off your body, you think you have never had this problem before in your life with weight gain like this. This weight is not a firm weight, it is flabby or like jelly. Exercise doesn't help, infact exercise can make more lumps or make your lumps swell and grow. After your weight loss, then the weight returns, it returns with even more weight than when you started your diet. (you end up weighing more than before you started dieting) Even the people at Weight Watchers think you are cheating on your diet as you should be loosing more if you were sticking to your diet! You don't understand why you have this weight problem. You have never had a weight problem like this at anytime before in your life. This can happen with DD. Most of us with DD have struggled with weight.

The Dr.s start to doubt you, they question your statements about how you are feeling and your pain level especially since most pain meds don't work for very long or at all, they begin to suggest you see a psyc. Dr. and think its all in your head. Sometimes the Dr.s are down right rude and make nasty comments to you. Sometimes they almost laugh at you. This is normal as they don't know what is wrong with you because you don't fit into their pigeon-hole technique of diagnosing medical problems. You don't fit any of the criteria in their databases for a medical problem that they can diagnose you with.

Ahhh! atlast you will find a Dr. who is willing to read the materials you have sent to them about DD PRIOR TO YOUR VISIT, along with COPIES of your medical records of all the tests you have had done with the Dr. chart notes included. THEN, When you go for your visit, they confirm that you do indeed have DD. You see, This makes the Dr. feel good that they were the one who recognized the disease you have. They will either diagnose you or send you to a specialist who can. This way, You are not embarassing them by walking into their office and talking about a disease (you think you may have) that they have never heard of! I mean this is a Dr. you are talking to about a medical problem. This is their job! They feel that they should know what everyone has wrong with them. They are educated in knowing. You are paying them to know! They feel that they must know, or their job is in jeopardy. If you walk in and start talking to them about a disease that they have never heard of, well, quite frankly it is like being in court without your lawyer and not knowing the case to be presented. You see, as they say "talk is cheap" this is so true when TALKING to a Dr. You can say I think I have --- and they can dismiss this as just talk. Nothing in stone. However, when you put it in writing, now that is a different story. Writing it MAKES IT LEGAL. They have to read it, and is becomes part of your medical chart. Then they have to address it. Do your work, make the copies, highlite the copeis, request your medical records with lab tests, and chart notes, Write your name and medical record on all. ONly send copies and keep originals for yourself as you may need to send them again to another Dr. Always send your records yourself. Don't ever think that a previous Dr. will send a complete set of your records to the next Dr. you are going to see. I carry my records to each new Dr. just incase they didn't get them previous to my visit otherwise it is a wasted visit in my eyes. The Dr. can't treat you unless he has your history.

You have to remember that Dr.'s have 15-20 minutes with each patient. They want it easy and fast. People with DD are not easy. We are difficult people with a difficult disease that is not even in most medical databases. This means that you have to do the work for the Dr. You need to mail the Dr. articles about DD that you have found on the web. Use sites that Dr.s use and are familiar with as this makes it more professional, (more believable to a Doubting Dr.) Write your name and medical record on the front page of each article. Highlight with a highliter pen the symptoms you have in the articles. Make notes in the margins if some of the articles parts pertains to yourself. Also request your medical records from your previous Dr.'s including lab tests done, and chart notes. Remember, You have to prove that you could have this disease to get a diagnosis because this is a rare disease they most Dr.s are not familiar with.

Sorry this was so long. Hope some of this helps you. Hugs to you and your husband. Celeste.