Dercum's Disease Support Group

Hi, my name is Tammy. I have been having health problems for a while now. My mom was watching a medical show called mystery diagnosis and told me about this disease. I need to find a doctor in Texas that is familiar with this. I would like to meet with a doctor to see if I have this.

I have had several knots on my body for years now I am 50 years old. Some of them are now very painful to the touch. I have use to have migrain headaches every now and then. Now I have a headache at least 3 days a week sometimes more. Sometimes they are migrains, sometimes tension, etc. My eyes also hurt sometimes and lately for about the last 8 days, my jaws hurt so bad I can barely eat. I woke up about 5 months ago and my right arm at my elbow, was very swollen. It continued to ache, be weak and very swollen for weeks. I have 3 different knots around that elbow. My arm even got to where I had no strength in my hand and couldn't pick anything up. The doctors told me I had tennis elbow or probably had dislocated the elbow. I hadn't been doing anthing to do that. I have shooting pains on the right side of that elbow. I have been heavy in the past, but had lost a lot of weight and kept it off for many years. June of 2009, I had a hysterectomy and now, a year later, even with hormone treatment, I have major hot and cold flashes. I don't sleep at night, get depressed easily, and have chronic pain. I hurt all over when I get up in the morning and am very stiff and can hardly walk. My upper thighs have fatty pockets on them, have gotten larger and are very sore. Some days, they hurt to touch them.

I have always been very outgoing, had a high pain tolerance, told i am a very strong person and used to stay very busy. I used to be told I have the memory from hell. I am now unable to work, hurt all the time, usually depressed and don't want to leave the house, don't want to be around other people, have continuous pain, seem to forget things easily, sometimes get disoriented and am having anxiety attacks. Now, starting this past week, my thumbs feel stiff and every time I bend them, they pop and when they do, I have a shooting pain in them. sometimes it hurts to even hold a pen in the right one. I also have major problems with my throid, especially thyroid antibodies or hormones.

Thanks for letting me vent. I am frustrated, need to work and tired of hurting and being depressed.

Hi Tammy,

I am very new here however I am sure that everyone will make you feel welcome.

Unfortunately I do not know of any doctors except Dr. Herbst. I talked to my current doctors and one of them agreed to research Dercum so maybe that would work for you.

best wishes for a "good" day,

Nickie

Hi Tammy!

Welcome to the group! This is a place to vent. we all take turns being frustrated. It does sound like you have an awful lot of symptoms of Dercum's Disease. The weight gain for no reason, swelling and lumps, shooting pains, sensitive to touch, migraines, depression - all can be Dercum's symptoms.

First off, see if you can get some meds for the depression. Depression only makes this all worse. We've got some members here in Texas. Who are your doctors???? I'm trying to think who all they are so I can send messages. It may help to get some articles about Dercum's to take with you when you see your doctors. My rheumatologist had heard of it and made my diagnosis. Didn't know what all it included so we are learning together. Which is true of many of us. Be prepared for most of them to not have heard of it. We're trying to get the word out! Mystery Diagnosis was a HUGE step for us! Hopefully the Dear Annie etter also helped.

We'll do our best to answer your questions. Know that we're always here for you.

Take care,

Diane

Hey, sorry you're suffering, but this is the place to rant, so feel free! I'm in England and still haven't found a doc, but working on it, in the mean time the people here make me feel better about it all with positive and validating advice.

xox

Hi Tammy welcome to the group. I know some people in Texas who have DD. Go to the FDRS web site...I think they have a member in Texas. It is the Fat Disorders Research site. They are putting together a list of doctors by state. I think that DD takes off after menopause or a hysterectomy...mine did. I hope that you do not have DD..but DD or not..your symptoms are no fun. Dr Karen Herbst in San Diego California could diagnosis you...if you could go to see her..you are a lot closed to her than I am in Ohio. We will support you throught the diagnosis process and if you have it we are here for you. If not..we are still here for you! Hugs, Grandma Sylvia

Welcome Tammy. I hope you find your answers. I do know of one member in TX but she actually took the trip to San Diego to get diagnosed. I believe that her doctor does work with her now for the pain. Definitely check out the FDRS site and Dr. Herbst site (lipomadoc.org) for some suggestions. I'll PM the member from TX to get in touch with you.

Any time you need to vent, we are here. It is difficult feeling alone with this with very few answers out there. We understand and have all been there. Best wishes.

Janet

Thank you so much for all the info you have all given me. I didn't even know where to start. My gynecologist says most of the problems are probably hormonal, my md says the headaches are migrains or from stress, another doctor says my hormones are probably still out of whack after the hysterectomy which was over a year ago. I haven't said anything to any of them about DD. I just found out about it 4 days ago. I am just so tired of being tired. The other day, I helped my husband mow the yard and do some clean up for about 3 hours. I felt like I was going to pass out, so he helped me to the bed. It was about 4 in the afternoon. I went to bed and slept until 5pm the following day, got a bite to eat, then went back to bed. Slept off and on through the night and next day, in between hot and cold flashes. When I wasn't sleeping, I still pretty much stayed in bed, because I was exhausted and didn't have any strength or energy.

It is not unusual for me to want to rest for a day or two, after shopping for a few hours or driving somewhere for a few hours. I use to love to shop and could go on shopping trips with friends out of town, where we would shop nonstop for 12 hours. Now I don't go with them anymore, because I am exhausted after the first hour. I used to sing and lead praise and worship at church. I love that and have done it for 32 years. I had to quit because I can't even make it through the first hour of rehearsal. I have a bad headache today and can't stop crying. My jaws are aching so bad, as is my whole body. I don't want to get out of bed and I have so many important things i have to do today. I used to work 2 jobs (one as a bank supervisor), had 3 kids at home, praise and worship practice one night a week, led praise and worship on Sundays for 2 services, cooked dinner everynight, ran my kids to ball practice, gymnastics, etc, went to a church group on Wednesday evenings, worked in the church office when needed, taught voice lessons and spent hours with my kids doing fun things. Never a procrastinator and if something had to be done, no matter how hard it was, I just did it, no time to complain. And if I was sick, even with a high temp, I would still go to work and just do what I had to do. Now, I usually don't want to get out of bed, procrastinate and even when something important needs to be done, I can't seem to get motivated to do it. I don't find joy in doing much of anything these days.

I have a friend that lives in California. I might could stay with her for a few days so that I could go see Dr. Herbst. What kind of tests, or what does she to do, to make a diagnosis?

I really appreciate all of your help. I am not usually a complainer and don't usually focus much on myself. I hate for people to worry about me, so I usually don't say much to my family and friends. Everyone has so many problems these, days, I feel like they don't need to have to deal with mine, so I really needed this time and place to vent and try to find some help.

Blessings!

I used to work alot too, but have found comfort in taking care of me so that I can take care of others. Don't worry things will work out. I am on antidepression meds too, among all kinds of other things to help me with life and be there for myself and family.

To make a diagnosis they will biopsy one of the lumps or remove it depending on the size. They do this with a local and it really doesn't hurt when it is happening but can be pretty sore depending on where it is. They look at the lipoma and will test to make sure it is adiopose tissue and that is how they give you a diagnosis. With the pain that you experience, it is most likely going to come back positive that you have Dercums.

It is hard but if you can, in the meantime, get on an anti-depressent (amitriptyline is a good one) that also will help with sleep and some of the pain. That is the one that they used to always prescribe for fibromyalgia. Also try to get a pain management doctor to help with the medicines. Some over the counters that will help: Capsaicin (get in the roll-on that way you don't have to use your hands and be careful not to get anywhere near your eyes); advil or motrin because they also hae the anti-inflammatory in them (if the doctor gives your Darvocet, Vicodin, Percocet or Oxycotins DO NOT take any other pain meds besides Tylenol and even then be careful - Tylenol can harm your liver - it is fine to take with the prescription pain meds because they are cut with Tylenol); the Tagamet is cimedidine and that may slow down the growth of the lipomas; get your vitamin D levels tested and take a daily vitamin.

Yes, you are going to have to slow down and not do as much as you used to. It doesn't mean you have to give up on everything, just do it when yu are feeling good.

Stress, menapause, surgery, a car accident, a lot of physical activity or any extraneous stress on the body can make the disease worse. Try to relax and do what you can when you can. I am not 40 yet (2 more months) and I still work a full time job but I have accommadations where I can work from home if I have to. My DD came out early in me because I have been asthmatic my whole life and on steroids for most of it and got Lyme's disease when I was 27. There are more and more younger people getting this probably because of the stresses in our lives and the toxins we put in and on our body (through pesticides and processing our foods, medicines and health and beauty products we use).

I know it is scary but I hope that it makes a little more sense to you about what you have been going through. We have all needed time to accept this and it will come to you hopefully sooner rather than later.

I am sorry that you have this, but I am glad that you found us and also found this information from the Mystery Diagnosis show. Jake is a brave man and he did a good thing going on that show and just knowing he may have helped one person find the answer, I am sure makes him glad he did it.

I know I am throwing a lot at you but just do what makes you feel comfortable but try to bring the info on this disease to your primary doctor and see what he says. Hopefully he surprises you and knows about this disease, but if not, know almost all of us have been there and you just got to keep trying. To be honest with you, you may want to try a dermatologist. I know that is strange but for some reason they are taught this disease more than any other medical branch of doctors. When making an appointment with a doctor, you may want to be forthcoming that you think you have this disease. Maybe they will be honest and let you know before you go to the appointment that they do not know what DD is.

OK - I think I just typed more than I have in 20 years I hope I helped a little.

Janet

Tammy...I just read your post about your life and I know it is hard to believe at first..but you described the typical DD person. I am speaking for all when I should just probably speak for myself....but we were very hard working women with responsible positions and always doing everything for everybody. DD seems to have a personality componet. We are the type of people who always put everyone else before us. I relate so much to what you wrote. It is so hard to adjust to a different life style...but you can do it...I did. Now I just say..that I don't know...that I can't..that I'm sick..that I'm tired. I never used to do that. It took a long time for me to go easier on myself but I am doing it now. I sometimes have to sleep for a long time..I think we all do..then I can't sleep at all sometimes. Your body needed rest...listen to it..and sleep when you can and be glad you can sleep. I also think there is a hormonal componet to DD. Mine got worse after my hysterectomy. My mental status improved as I did not have the killer PMS anymore. Your body is changing and you may find that you need to change along with it. Try not to force yourself to do what you used to do. You can learn to still feel like a valuable person without doing so much. Try being as kind to Tammy as you are to everyone else. Tammy deserves it!! I'm too tired to write more for now so I won't force myself!! Hugs, Grandma Sylvia