Symptoms

• Presentation
  • Previously healthy women notice lumps or previously present lumps start growing. They describe pain and discomfort in the region of the lumps associated with weakness.
  • Before the onset of the disease, the patient is usually only slightly obese, but, in a short time, the patient becomes overweight.
  • The pain increases with the increase in fatty tissue and in connection to menstruation.
• Types and location
  

  • The painful lipomas have been reported to occur in any location, except in the head and the neck.  ^{(Our note - they can also appear there.)}
  • Different types can be identified according to the spread of pain.
    • Type I, or the juxta-articular type, with painful folds of fat on the inside of the knees and/or on the hips, in rare cases only evident in upper-arm fat
    • Type II, or the diffuse, generalized type, where widespread pain from fatty tissue is found, apart from that of type I, also often in the dorsal upper-arm fat, in the axillary and gluteal fat, in the stomach wall, in dorsal fat folds, and on the soles of the feet
    • Type III, or the lipomatosis, nodular type, with intense pain in and around multiple lipomas, sometimes in the absence of general obesity; lipomas are approximately 0.5-4 cm, soft, and attached to the surrounding tissue (Histologically, these are not always encapsulated. Some have been classified as angiolipomas.)
• Type of pain
  

  • The pain varies from discomfort on palpation to excruciating, paroxysmal spontaneous attacks.
  • The pain can be aching, burning, or stabbing, often described by the patient as "it hurts everywhere."
  • The pain is usually symmetrical; however, it can become localized to the thighs, the knees, or the upper extremities.
  • Pain can be felt in the skeletal system and in the fat.
• Hyperalgesia is found by light pressure and touch in the fatty tissue below the skin and is made worse by tightly fitting clothes or showering. The pain is temperature and weather dependent; it decreases in dry heat and when pressure is high. Hot baths can have a positive but short-term effect in the relief of pain, but some patients do not tolerate heat. Estrogen replacement at menopause does not reduce the pain.
• Other symptoms, with variable incidence, include the following:
  • The fingers have a tendency to swell up, fumble, and tingle, and they can be numb (paresthesias), in addition to secondary median nerve compression.
  • General tiredness similar to the symptoms of chronic fatigue syndrome may be present. Light physical activity and poor sleep aggravate the tiredness.
  • A tendency to bruise, possibly secondary to the formation of delicate vessels in fat deposits, may be present. Coagulation test results are normal.
  • Morning stiffness and stiffness after resting may occur.
  • Headaches (eg, tension headaches, classic migraine, neck headaches) may occur. Also, pain in the jaw and the eyes due to retrobulbar fatty tissue may be present.
  • Cognitive dysfunction, with concentration and memory problems, may be present.
  • Bouts of depression (atypical depression, possibly latent) may occur; this finding is not associated with the onset of the disease.
  • Feeling hot affects a small number of patients, with recurring high temperatures of 37.5-39°C for weeks at a time associated with worsening of pain.
  • Patients may become susceptible to infection, which is possibly due to the presence of fat. Pain is exacerbated with infections.

Physical

• Dercum disease (adiposis dolorosa) symptoms are almost always out of proportion to the physical findings, which include the following:
  • Dercum disease (adiposis dolorosa) patients are usually 50% over the normal weight for their age. In some patients, only localized fat, without general obesity, is present.
  • Lipomas are multiple, painful, symmetrically distributed, fatty deposits that are either diffuse or localized. The abdominal region and the lower extremities are common sites, especially around the knees. The ankle is an uncommon site of involvement.
  • Hyperalgesia is found in the fatty tissue below the skin on light pressure and touch.
  • Other findings include acral swelling, bruises, and telangiectasias.

The above information is an exerpt from the Adiposis Dolorosa article on Emedicine at http://emedicine.medscape.com/article/1082083-overview

Our Experiences

Lipomas Showing Up Everywhere

Though most of the published research says that lipomas are in the trunk and limbs, there are many people who have them in other places including the neck, head and scalp.  You may want to talk to your doctor to make sure that they are not going to cause bigger issues if they keep growing. 

What IS That Feeling????

While pain is a very common symptom of Dercum's, it is not the only sensation you are likely to feel. One thing we have learned from talking to other Dercum's people is that we are all different! Some people have a lot of pain and some people have a very manageable level of pain. That doesn't mean you should worry about it - we all have different levels and what you experience is normal for you. (I'm going to assume you have already talked to your doctor about your pain and know that it is not from any other cause.)

So what are the other sensations besides pain? Here are some of them:

• itching
• burning
• tickling
• pin pricks
• crawling sensation
• feeling of water running under skin especially in your limbs
• feel like hair or fuzz is blowing across the surface of your skin (in my case I kept looking for a gnat!)
• vibrating
• numbness
• swelling

As a rule the sensations will pass. However, if they are constant or worrisome, talk to your doctor to be sure there is nothing else wrong.

Other Things That We May Have to Deal With

Dercum's does not just stop at lumps that give us pain.  There are many other symptoms that we deal with on a regular basis.  I may be missing a few (please let me know and I'll add) but in my experience these are issues that many of us have in common (I'll start at the top of the body and go down):

• headaches or migraines
• sleeping disorders such as insomnia, apnea or sleep paralysis
• chronic fatigue
• brain fog (short term memory loss or other cognitive dysfunctions)
• depression
• allergies to environment and foods
• loss of hearing or tinnitus
• the Dercum's hump at the base of the neck/top of the back
• heartburn or acid reflux (mine turns into an inability to swallow foods or dysphagia)
• breathing issues such as asthma, frequent bronchitis or pneumonia
• susceptible to infections (teeth, sinuses, throat, kidney, bladder and everything in between)
• sudden weight gain or loss
• swelling in limbs and trunk
• nerve disorders such as carpal tunnel syndrome
• weakness in arms, legs and/or hands
• tendency to bruise easily
• overhealing - keloid scars form on the outside of the body as well as inside
• stiffness in joints after resting
• body temperature fluctuations - run hot or really cold for no reason
• Irritable Bowel Syndrome or other digestive issues
• just the ladies:  endometriosis or cysts on ovaries
• tender feet, feels like walking on glass or gout like symptoms
• possibly higher cholesterol (but that could be from medications or inability to process foods correctly)

Do remember that we are all different. Not everyone has ALL of these symptoms. There is no guarantee that you will ever have all of the symptoms. There is no one thing that can treat all of your symptoms but if you take them one by one and figure out what is most important to you to get under control, your doctors should be able to work with you to ease some of them. 

Just a note of advice: I route all medications from my many doctors through my pain doctor's office first to see what he thinks.  You should try to rely on one doctor to work with you on managing all your medications, including anything you take OTC.  Always make sure that ALL of your doctors have a full list of your medications. Use one pharmacy as well so they can watch and let you know if there are any potentially harmful interactions between medicines you are taking.  Doing your own homework on these before taking is a wise choice as well.  Remember you are in charge of your body. If you are not comfortable taking something prescribed to you, do not take it.  Don't hesitate to go back to your doctor and tell him or her if a medication is causing problems. Some side effects are tolerated better by some than they are by others.  There is no one treatment that is right for everybody.

And just for fun: