Frequently Asked Questions


    I receive a lot of emails in response to this website. Whether it’s someone who suspects they might have Dercum’s Disease, or someone who has already been diagnosed, every email I receive tends to feature the same assortment of questions.
    While I of course always do my best to answer all of the emails I receive, being a sufferer of the disease myself, I can’t always predict when I’ll feel well enough to respond to emails. So in an effort to make sure you get the answers you need as soon as possible, I’ve set up this Frequently Asked Questions section.
    I always welcome emails, but please take a minute to read through this website before sending your questions. Chances are you’ll receive the answers you need immediately! If not, however, you’re always welcome to contact me!
    Keep checking back, I’ll be adding more questions and answers constantly!

    Please keep in mind, none of the comments posted here are meant in any way as medical advice! I am NOT a medical doctor, nor do I claim to be! I’m merely a sufferer of Dercum’s Disease. Nothing posted here should in any way take precedence over any advice you have received from your medical doctor!
    I wrote this merely for average individuals without medical experience who either suspect they might have Dercum’s Disease or who have already been diagnosed. The information posted here is based on my own personal experience and my own research, but none of it should be taken as absolute medical fact. I have, however, done my best to translate some information from medical journal articles into layman’s terms. But for purely scientific medical information, please look at the Articles section of this website.
    The information provided is provided in good faith as a means of emotional support for those suffering from Dercum’s Disease. This site will not be held responsible for anyone who misinterprets this information in any way whatsoever.

    Alright, now that all the legal mumbo-jumbo is out of the way, let’s get to the questions and answers! :)

M E N U

    Getting Diagnosed

    Doctors & Experts

    Treatment

    Living With Dercum’s

    Organizations & Misc

- Getting Diagnosed -

    Q: How is Dercum’s diagnosed? Is there a test for it?
    A: Unfortunately there is no one clinical test for Dercum’s Disease. Diagnosing Dercum’s Disease is a long, arduous process of exclusion – essentially, you have to rule out all the other potential causes before you can say with any certainty that your symptoms are caused by Dercum’s Disease.
    Believe me, I understand how frustrating that prospect is. Oftentimes the diagnostic process can take many months, sometimes even a year or more. But being thorough is worth the wait!
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    Q: How long does the diagnostic process usually take?
    A: The diagnostic process can take anywhere from a few months, to well over a year. In my case, it took three years before I was properly diagnosed.
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    Q: What kind of disease is Dercum’s Disease?
    A: Dercum’s Disease is what’s known as a lipid disease – a disease affecting the fat cells of the body. Unfortunately not too many doctors seem to be all that familiar with lipid diseases. That said, Dercum’s Disease is not the only lipid disease out there; there are many, many others that are somewhat similar in presentation to Dercum’s, but vastly different in both their root cause and their treatment.
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    Q: What other lipid diseases will I need to be evaluated for?
    A: The one disease that seems to be most commonly related to Dercum’s Disease is Madelung’s Disease. It too causes the body to develop many painful fatty lipomas. Although in the case of Madelung’s, the lipomas develop in a different pattern throughout the body. It’s very important that you & your doctor review information for Madelung’s Disease as well, to ensure that you’re accurately diagnosed.
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    Q: What kind of doctor usually makes the diagnosis?
    A: No one doctor can really make an accurate diagnosis of Dercum’s Disease, because it takes the experience and expertise of a wide range of specialists to rule out all the other potential causes of the symptoms you’re experiencing.
    If your doctor were to rush to the diagnosis of Dercum’s Disease, they could miss key evidence that might point them to a more accurate diagnosis of a similar disease, such as Madelung’s Disease. It’s important to be as thorough & patient throughout the diagnostic process, because the treatments for some lipid diseases might actually end up making another lipid disease worse. If you truly have Madelung’s Disease, but follow the treatment protocol for Dercum’s Disease under a false diagnosis, you may end up suffering negative consequences.
    We discuss the different specialists involved in the diagnostic process in the Specialists section. I would encourage you to read that section thoroughly.
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    Q: What can I do to prepare for the diagnostic process?
    A: There are many things you can do now to prepare for the diagnostic process, to ensure that the process is as efficient & relatively painless as possible.
    The first thing I would recommend is to prepare emotionally. You must be ready for the process to take as long as it needs to; don’t get your heart set on any specific time table. Let the process go where it needs to go, take as long as it needs to. Your goal should be to get the most accurate diagnosis possible, not to force the process to fit within a specific time frame.
    Next, do your best to keep an open mind. If you suspect you may have Dercum’s Disease, that’s fine, but please don’t get your heart set on it. There are many, many lipid diseases and disorders out there that might just as likely be the cause of your symptoms. If you focus your mind so intently on just one of the potential causes, you may miss vital evidence that could lead you to the true cause. Keep your mind and your heart open to wherever the diagnostic process takes you.
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    Q: What information should I compile now to get ready for the diagnostic process?
    A:Aside from the emotional aspect of preparation, there are many things you can get done now to help make the diagnostic process as efficient as possible. First and foremost, start a diary of certain key information that will be needed later on in the diagnostic process.
    When I was going through the diagnostic process, I waited several months for an appointment to see an Endocrinologist. When I got to the appointment, he told me, “Come back in three months with a full weight, food, and measurement diary. Until then, I can’t do anything for you.” All I could think was, why didn’t he tell me this sooner?! All that time I’d spent waiting for the appointment, I could have been compiling the information he needed! I wasted all of that time because I just didn’t know.
    But now you know! That experience inspired me to create the Dercum Society Handbook – a guide to the basic information you might need during your diagnostic process. It will help you to track your diet, the growth of either your diffuse fatty tissue or lipomas, and so on. Please download that handbook and make copies of the different charts inside of it. Read it and start keeping track of the information listed inside. If you do that now, you’ll be prepared for just about anything, saving you time and frustration later on down the road.
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- Doctors & Experts -

    Q: Do you know of a doctor where I live who’s familiar with Dercum’s Disease?
    A: I’m very sorry to say that I do not have any information about doctors who are familiar with the disease. Not only would it be a full-time job to track down such doctors & keep track of them all, there are other very serious implications to compiling such a list in the first place. There are lots of industry guidelines & ethical codes of conduct involved when it comes to posting and sharing information about physicians, their expertise, their contact information, whether or not they’re accepting patients, etc. We simply don’t have the time, funding, or capability to even attempt to create such a database of physicians. Sorry!
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    Q: Why is it that so few Doctors are even aware of Dercum’s Disease at all?
    A: Even though I know it’s frustrating, we all have to remember that doctors are only human. There are literally hundreds of thousands of millions of diseases, syndromes, disorders, and conditions out there. We can’t possibly expect every doctor to know about or remember all of them.
What’s more, at least as far as I’ve been able to discover, Dercum’s Disease is only even mentioned in passing at two medical schools worldwide – Harvard and the University of Malmo in Sweden. And even then, it’s literally only barely mentioned; it’s certainly not an in depth look.
    Furthermore, a lot of the information available about the disease is either out of date or mere conjecture based on anecdotal evidence, which has yet to be fully substantiated in a repeatable, peer-reviewed study. So even if they did go into it in more detail, there wouldn’t be much they could really cover. It’s disappointing, but that’s the sad truth of the matter. A lot of managing this disease is based not on solid, concrete fact, but on trying to apply the basics of sound medicine to a rough outline of what little is known about the foundations of the disease.
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    Q: Can you recommend any experts?
    A: Again, since I’m unable to create or maintain a database of the few doctors out there who are familiar with the disease, I’m unable to direct you to any specific experts that would be able to work with you. I apologize.
I do want to point out, however, that you do not need an expert in order to receive all the medical care you require. I’ll go into that in further detail, so please keep reading.
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    Q: How do I get in contact with any of the authors of the peer-reviewed medical journal articles available on this site?
    A: Unfortunately, none of the authors are available for direct contact by patients.
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    Q: But if I can’t have an expert, isn’t it hopeless? I don’t have any other options!
    A: Please don’t give in to despair, there are always other options! They just sometimes differ a bit from what you originally intended.
Always remember that the principles of sound medicine are the same, whether you’re treating cancer, the common cold, or Dercum’s Disease. Just because your doctor isn’t an expert, doesn’t mean that he or she doesn’t have the basic toolset required to provide the best medical care you require.
    That basic toolset is simple, but not every doctor will possess it. The key is to learn to recognize the signs that will tell you when a doctor is right for you.
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    Q: So if I can’t have an expert, what should I look for in a doctor?
    A: It’s as simple as this: intellectual curiosity and a willingness to listen & learn.
    Unfortunately, it’s all too common for people to become prideful, thinking they already know all there is to know in the world and shame on anyone who dares to tell them otherwise! If you meet a doctor like this, run the other way!
    But if you can find someone who’s excited to find out about new things, chances are, you’ve hit the proverbial gold mine!
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    Q: How do I know if a Doctor is willing to learn?
    A: The best method I’ve discovered is to print out copies of the medical journal articles listed on this site. Start carrying them with you to every doctor’s appointment. When you meet a new doctor, describe that you’ve been diagnosed with a very rare disease and ask if they’d be willing to read a peer-reviewed medical journal article about it. (Those words – “peer-reviewed medical journal article” – are very, very important! We’ll get into it in detail in a later question, so please keep reading!)
    When you ask that question & offer the article, be sure to keep an eye on the doctor’s reaction – it will tell you everything you need to know! If they’re standoffish and not at all eager, chances are they aren’t open to learning from a patient.
    But if they’re excited at the opportunity to learn something new, that’s the doctor for you!
    It shows that they’re open to a partnership with their patient, willing to learn alongside you. If you can find that, you’ll be well taken care of, because you’ll have an equal partner to walk this road with you. You can both learn along the way, figuring out the puzzle, piece by piece, to create the best plan of action specific to you, your body, and your needs. That’s just as good as any expert, because in time, you’ll both become experts in your specific case of Dercum’s Disease.
    And since no two cases of Dercum’s Disease are exactly alike, well, it’s all the more fitting!
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    Q: I can’t get my Doctor to listen to any of the information I bring! What do I do?
    A: I’ve received so many heart-breaking emails from Dercum’s patients who are just about at their wit’s end when it comes to trying to get their doctors to listen to what they have to say. In a high percentage of these instances, it’s not necessarily that either the doctor or the patient are at fault, it’s simply that – in a sense – the two parties are speaking different languages.
That may sound strange; chances are, you’re both speaking English, so what’s the problem?! The difference is between the industry language of medical science versus the layman, the average patient who doesn’t have much experience at all in any sort of medical or scientific field.
    So how do we bridge the two worlds to come to a mutual understanding? How do we really listen to each other, to the point where we can both comprehend and convey our own messages?
    The first impediment to patients feeling understood by their doctors is when it comes to how we bring information to our doctors’ attention. What I most often hear in these stories of frustration is that, upon being diagnosed with Dercum’s, the patient runs home and their first instinct is to google “Dercum’s Disease”. (That was my first instinct too! And that’s probably how you found this website.)
    Chances are, you find a website that has all sorts of information that you immediately think your doctor needs to see. That’s a perfectly understandable and reasonable approach, so you print out copies of the websites you find and take them to your doctor…
    Only to be turned away. Your doctor seems dismissive, unwilling to read it, unwilling to take any of the steps recommended on the websites. You’re frustrated and angry – you put in all that time and effort into doing so much research and what?! Now they won’t listen!? But this is your life on the line, your well-being! Don’t they care?!
    Yes, they do care. But this is where the two languages clash.
    As patients, we need to understand the responsibility our doctor has to protect our health and well-being. If they don’t do everything in their power to protect us, they’re held responsible and we’ll get hurt.
    Therefore, isn’t it reasonable to see how they could be hesitant to immediately act based off information pulled off some random website they’ve never heard of before? Anybody can write anything on the Internet – there’s no guarantee it’s true. And for these individual doctors, with all their hundreds of patients, do they really have time to track down every bit of information that every desperate patient gives them? Do they really have the expertise to do that anyway, even if they did have the time?
    No, they don’t. Which is why a system has been set up to solve this problem before it even starts.
    It’s called the peer-review process.
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    Q: So what is the ‘peer-review process’?
    A: You’ve probably already heard it mentioned on this website, with all the talk of peer-reviewed medical journal articles.
Medical journals are usually published by medical schools or large medical organizations. They publish articles written by doctors who have either conducted extensive research, a survey of some sort, or have written articles based on individual case studies (meaning, they write about their experiences with one specific patient.)
    Before an article can be published, however, it goes through an extremely laborious review process, where every bit of information contained in the article is reviewed and scrutinized by an extensive panel of medical doctors from a variety of specialties – i.e. your doctor’s peers, hence the term peer-reviewed.
    This peer-review process is a safeguard not only for your doctor’s liability, but it’s a huge safeguard for your safety as well. When a doctor reads something from a peer-reviewed medical journal, he or she knows that the information has a solid foundation in sound scientific medical practice. They know that they can safely act upon the information, knowing that they’ve done everything they can to ensure the safety and validity of the medical information they’re basing their decisions upon.
    They can’t say the same thing about some random information off some random website you found online. It’s just not the same thing. It’s simply not as safe.
    But of course, not everyone outside medical or scientific industries has ever had a reason to get to know the peer-review process. So naturally, that can cause a lot of frustration on the part of the patient.
    So please keep that in mind in when trying to communicate with your doctor, and whenever you try to educate yourself or your doctor. Just because your doctor may be dismissive of certain information you’ve tried to bring to them in the past doesn’t necessarily mean they’re being dismissive of you. There’s simply a protocol they’re expected to follow, all in order to protect you and your safety.
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    Q: I end up wasting so much time going to appointments with doctors, only to have them turn me away! How can I avoid this situation in the future?
    A: Believe me, I’ve had this happen to me too and I know how absolutely frustrating & disappointing it is! I’ve had doctors literally look me in the face and say that my case was simply out of their league. While other times, I’ve had doctors just flat out say that they didn’t want to deal with such a complicated case. I of course appreciate their honesty, but I always walk away from those situations thinking, “Why couldn’t they tell me this before I schlepped all the way down here and wasted so much time?!”
    My Mother and I figured out a way to try and prevent these situations from happening in the first place, especially when it comes to long-term relationships with new doctors, like primary care physicians or pain management specialists.
    The best thing you can do to avoid these situations is to be as honest and upfront as possible. When you’re looking for a new doctor, before you make an appointment with them, call them and ask if they’re taking new patients. If they are, explain that you have a very rare – but documented – disease and ask if you could fax or mail them a letter explaining your case, as well as a peer-reviewed medical journal article explaining the disease.
    If they agree, write a quick, concise letter to the doctor or the practice in general. In as few words as possible, explain your case, explain that you won’t be a run of the mill patient, and enclose a copy of this article.
    Sure enough, you’re going to get a lot of rejections. But, each one of those rejections represents an appointment that could have wasted your time, the doctor’s time, and your money. So get that rejection over with in a letter rather than at the doctor’s office.
    In the end, though, you will eventually find a doctor willing to take on your case. Some do it for the intellectual challenge, others out of duty, or myriad other reasons. But whatever the reason, you’ll go into this new doctor/patient relationship with eyes wide open, on both sides. That’s the best possible foundation you could have for a long-term relationship with your physician, one built upon trust and mutual understanding.
    And not to mention, it’ll save you a lot of time and frustration!
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    Q: I don’t think my Doctor believes that my Dercum’s fat/Lipomas hurt! How can I convince them?
    A: You have a right to be believed by your Doctor when you say that something hurts. If that trust isn’t there, how can your doctor ever treat you?
    If trust is lacking in your doctor/patient relationship, you need to honestly evaluate what went wrong. Keep in mind that sometimes it’s not always the Doctor’s fault. Is there something in your behavior that appears erratic or untrustworthy? Always be 100% honest with your Doctor.
    If you have been 100% honest, but your Doctor still doesn’t believe you, consider that you may need to find an alternate doctor. You always have a right to seek a second opinion.
    I have heard a lot of stories from patients where they do have a trusting relationship with their Doctors, but their Doctor has simply never heard of lipomas being painful. And because they’ve never heard of it, they have a hard time understanding why yours are painful. Sometimes that’s where the apparent lack of trust can appear.
    This happened to me too at first, before I was fully diagnosed. My first surgeon was completely adamant that all lipomas were normal and that none of them should ever hurt. Believe me, I know how frustrating it is when facing that, knowing that you’re in real pain, but you just can’t find a way to convince them.
    The best thing you can do is to be as calm and descriptive as possible. Better yet, come armed with information your doctors know they can trust – peer-reviewed medical journal articles!
    Check out the Articles section of this site and download the first article listed there – “Portrait of a Medical Enigma: Dercum’s Disease” by Dr Brorson & Dr Fagher. That article will clearly show your doctor that yes, in some circumstances, lipomas and fatty tissue can hurt a great deal. Other lipid diseases such as Madelung’s Disease can also cause a great deal of pain. An article like this will hopefully open the door a little bit to them understanding that yes, in some cases, fatty tumors are indeed very painful! Hopefully that will open up the pathways of communication again between you and your doctor.
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- Treatment -

    Q: Do you recommend any herbs or supplements?
    A: I certainly don’t have the medical expertise to recommend any sort of herbs or supplements or anything else.
I would like to stress, however, that we all must remember that herbs are – for every intent and purpose – very powerful medicines. After all, most of our “western” medicines are derived from the very same substances as most herbal supplements.
Everything we take into our body must be taken with great care, consideration, and caution. I would strongly urge all of you to consult with your doctor and your pharmacist before ingesting anything that makes any sort of medical claims. Not just because of the potential implications of the herbs themselves, but because of the potential interactions between the herbal supplements and any other medications you may be taking.
    Some people like to retort with, “But herbs are natural! They can’t hurt you!” Might I remind anyone who makes such a claim, arsenic is natural. Cyanide is natural. But both would cause you great harm.
    Individual herbal substances may be perfectly fine on their own. But any chemical, when mixed with certain other chemicals, can become harmful. And what’s more, even something as innocuous as vitamin C can, when taken at high doses, result in a dangerous overdose.
    So please, I urge you, be careful. Even the healthiest of bodies can be fragile, but ours are even more so, given the disease we live with. Take great care in everything you do and everything you take into your body. It never hurts to ask before swallowing a pill, but ignorance sure can hurt a whole lot more.
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    Q: I’ve read online that other Dercum’s patients are taking different over the counter medications, sometimes at higher doses. Are you familiar with this?
    A: Yes, I have heard of this idea being circulated around various different Dercum’s groups and quite frankly, it scares me to death. Again, as mentioned in the previous Q&A, always, always consult with your physician and your pharmacist before ingesting anything!
    Just because something is available over the counter does not automatically make it safe. It’s only available over the counter at very specific, regulated doses. If you take a dosage above the limit listed on the packaging, you’re taking a very grave, serious risk. By doing so, you’re essentially taking something that’s the equivalent of a prescription-strength drug, without the consultation of your doctor or the oversight of a pharmacist. The consequences can be catastrophic. And if something horrible were to happen, you would have no legal recourse, since you took a dose outside what was instructed on the drug’s packaging.
    Some of my friends fell into this trap, initially reporting that surely it must be safe, because they felt fantastic! After receiving advice from a physician online who was posing as an “expert”, my friend took high doses of an over-the-counter drug originally intended to treat heartburn, or gastric reflux. Initially, she was convinced that it worked, that it was an outright miracle! Suddenly her pain was better, she had energy again, and she felt like she was on cloud nine! Life seemed perfect!
    Thankfully her pharmacist happened to notice the large quantities of this drug she was buying and was friendly enough with her to inquire what was going on. She happily shared the stories of her newfound joy and pain-free lifestyle.
    It was only then that her pharmacist explained the danger she was facing – the high doses of the gastric reflux drug were interfering with her time-released narcotic pain medication. All the extra pain medication being flushed too quickly into her system sure made her feel good, but at what cost? Essentially, she could have overdosed, without ever knowing the cause. Sure, she temporarily felt great, but death sure would have put an end to that party.
    So please, be careful. Don’t take drug recommendations from random people online, no matter how much they may pose as experts. Before taking anything, before subjecting your body to any sort of chemical (herbal or otherwise), always check and double check it with your doctor and your pharmacist. All drugs have side effects, all drugs interact with each other. It’s better to be safe than sorry.
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    Q: I’ve heard that liposuction can help relieve pain in Dercum’s patients with diffuse painful fatty tissue. Do you have any experience with this?
    A: To say it again, I’m not a doctor myself. So I can’t give you any real direct medical advice. All I can tell you is what I’ve been through myself.
    When I was 22, my body was growing so fast from the Dercum’s that I’d gained about 65 pounds in three months. The more I grew, the faster the growth. I was growing so fast that it was unbearably painful. After over a year of careful consideration with my doctors, I ended up going through five rounds of high-volume liposuction to bring me back to a stable weight.
    The operations were so exceedingly painful that after each one I had to spend up to three weeks in the hospital, just for pain control. I was bruised so badly all over my body that several ER doctors said I looked like I’d been hit by a truck. After each surgery, I’d swell up like a balloon, which in and of itself has huge risks associated with it. Not to mention all the risks of possible infection.
    After all that pain, agony, and risk, sure, I felt a little better for a little while. Until I started developing lipomas where I had surgery. And then I started swelling and couldn’t stop. I’ve been carrying around 100+ pounds of fluid ever since and now I’m 26-years-old.
    But that’s me. I can’t tell you for certain why I started swelling; we still haven’t figured that out. So I can’t tell you that you’ll have the same experience. But I have heard all too often that people seem to think liposuction is some sort of miracle cure. That if only they could have liposuction, all of their problems would go away and they’d be right as rain.
    I can honestly tell you, that’s not true. Liposuction simply can’t get rid of the underlying genetic mutation that’s the root cause of this disease. It may be a temporary fix, but at what cost?
    That’s what you and your doctor have to answer for yourself. What are the risks to you? What can you hope to achieve? Do the potential benefits outweigh the costs?
    Only you and your doctor can answer that.
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    Q: I’m considering having Lipomas surgically removed. Can you tell me anything about that?
    A: Just like the question of Liposuction, I’m not a doctor and can’t give you direct medical advice. Again, all I can tell you is based on my own experience and other anecdotal evidence I’ve heard from friends and family who suffer from the disease.
    In my own case, I’ve had some successful lipoma removals and some not so successful lipoma removals. Some go well and haven’t grown back yet, while others have grown back bigger and more painful than before.
    That’s pretty much average, based on what I’ve read in medical journal articles on this subject – there’s always a risk with Dercum’s Disease that any lipomas that are removed could possibly grow back worse than before.
    Therefore it’s up to you and your doctor to research the matter on PubMed, see what you can find out about the general odds, then try to figure out what your odds might be. How have you responded to surgery in the past? Do you tend to heal well, or do you develop excessive scar tissue? What are the pro’s and con’s in your own case? Are there any other non-surgical alternatives to try and lessen the pain?
    It’s really up to you whether you want to accept the odds or not. But just like with liposuction, it’s important for you to realize that simply cutting out your lipomas will not be a magical cure-all. Again, it simply won’t remove the genetic mutation at the root of the disease. As long as your expectations are reasonable, by all means, consider it. But take a long, honest, open-minded look at the risks with your doctor, then decide for yourself.
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- Living With Dercum’s -

    Q: Can you recommend anything I can do at home to help deal with the pain?
    A: One of the first instincts we have when confronted with pain is to apply a heating pad. It seems that in the vast majority of cases, while heat might temporarily relieve the pain, it can actually make the pain & inflammation associated with Dercum’s worse in the long term. If you ask your doctor to search for medical journal articles about Dercum’s Disease on PubMed, they’ll find that a great many of the articles reference that Dercum’s patients are incredibly intolerant of heat. Many even seem to be more susceptible to heat stroke.
    So instead of reaching for that heating pad, try applying ice instead. I’ve found that incredibly helpful. Of course, stick to the general rules about applying ice – 15 minutes on, 15 minutes off.

    Some patients report that very light, gentle massage can be helpful as well. Although don’t be too surprised if some areas of your body are so hypersensitive that you can’t tolerate being touched at all. For those areas, I’ve found that a very slight vibration is helpful. A lightly vibrating soft pillow, like the kinds made for children with Autisim, are quite nice. If nothing else, I’ve found that it’s a kind of pleasant distraction from the pain. It seems to calm my nerves enough that I can focus on other things without being so overwhelmed by the pain. I found it so helpful that I’ve invested in an adjustable bed that has a built in vibrating massage feature. You might want to look into that as well.

    You might also want to ask your doctor about over the counter topical analgesics, such as Biofreeze, Arnica, Cryoderm, or Kool ‘n Fit. These are all readily available without a prescription and can be purchased in a wide variety of places, both online and in person. If you google them, I’m sure you’ll find several options.
    But of course, as with anything else you put on or in your body, please don’t take my word for it – it’s always better to ask your doctor, just to be safe. Also, make sure you always read the active ingredients list in full detail – sometimes you can find different products with the same ingredients at lower prices.
    Just as with the heating pads, though, I would recommend that you stay away from any of the warming topical analgesics if you find that you have any sort of adverse reaction to heat, as most people with Dercum’s do.
    The only such topical analgesic that I have any direct experience with is Biofreeze. I tried it for a little while and found it a little helpful for localized breakthrough pain. Eventually I stopped using it cause I’m rather fastidious and didn’t like getting it on my bedsheets. But it is at least an option that you might want to look into. I know some people have found some relief from it, especially for breakthrough pain that their regular pain medication regimen doesn’t seem to touch.
 
    Just to be clear, I’m not paid by any of these topical analgesic companies and I don’t receive any sort of kickbacks for mentioning them. I don’t accept any sort of advertising or anything on this site at all.

    If you have any other recommendations for at-home pain management, please feel free to contact me and let me know!
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    Q: Are there any other options available besides narcotics to help treat the pain?
    A: Unfortunately, as much of the published medical literature on Dercum’s Disease states, it seems that for the majority of Dercum’s Disease patients, narcotics are really the only systematically effective means of treating the chronic pain associated with the disease. Of course, given the very serious risks of long term narcotic use, it’s certainly worth it to try other methods of treating your pain. Just because most of us require narcotics doesn’t mean that you might not find another method of treating your pain that could be just as effective, if not more so. It’s definitely worth exploring all available options with your doctor.

    If you do require narcotics, I would highly recommend you seek the expertise and counsel of a Pain Management Specialist, especially if they have training as an Anesthesiologist. Their training will be an invaluable resource for you. They often have solutions most other doctors aren’t readily aware of. They’re also fantastic at discerning the nerve pathways associated with your pain, then coming up with a multi-pronged approach to addressing your specific pain. Whether it’s a cocktail of different pain medications, or alternative therapies, or a combination of everything, they’ll really be your best bet for relief.
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    Q: I’ve read in some of the medical literature about Lidocaine Infusions. What’s that?
    A: Many Dercum’s Disease articles have mentioned that some patients have found temporary relief from regular infusions of lidocaine. I used to have this done on a regular basis.
    Essentially this is the same as getting any sort of IV, really. The IV is placed and over the course of an hour or so, lidocaine diluted in saline is slowly infused into the patient. The lidocaine slowly circulates throughout your body, which slowly dulls the pain for a short period of time.
    For the entire twenty-six years that I’ve been alive, I’ve never known a day – a single moment – without pain. Except for when I had those lidocaine infusions. For me, it was entirely worth it just for those short fleeting moments of reprieve from agony. Overall, for me, this wasn’t enough to remove my dependence on pain medication. But it was enough that I was able to at least lower my regular overall dosage level.
    I don’t know of another way to describe it, but it seemed as if those short breaks from the pain gave my body a chance to reset. It’s as if my nerves have been screaming at me for every minute of every day for my entire life. Getting even a short chance to stop that screaming gave me a chance to rest and get caught up, before the screaming began again. That reset was enough that it took time for the pain to build again. If that makes any sense.

    Of course, that was just my experience and my experience alone. Since I’m not a doctor, I can’t say if you would receive the same benefit, or even if it would be safe for you to attempt it. Naturally, as with anything else in life, there are always risks involved. Lidocaine infusions are no different.
    There are plenty of risks involved. It’s very easy to overdose on Lidocaine, resulting in seizures, depressed respiration, and so on. That’s something you’d have to go over in depth with your doctor. Most doctors don’t even have direct experience with something like this. Typically these infusions would be administered by either an Anesthesiologist or a Pain Management specialist.
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    Q: Are there safer alternatives to Lidocaine Infusions?
    A: A safer alternative to Lidocaine Infusions would be something like a Lidoderm patch – lidocaine in the form of a sticky patch. When applied to the skin, the patch slowly releases lidocaine over time. You can typically apply up to three patches over a 12 hour period, then you have to take 12 hours off. Naturally you can’t cover your entire body in patches or you’d overdose, so this isn’t something that can take the place of your overall pain management regimen, narcotic or otherwise. But in my own experience, I’ve found Lidoderm patches to be extremely helpful in dealing with localized breakthrough pain. Whether it’s a particularly painful lipoma, or intense joint pain, Lidoderm patches are perfect for addressing that sort of discomfort.
    Again, there are risks to be considered. But this is another option to be discussed with your doctor.
    A similar patch you might want to look into is a Flector patch. It’s just like the Lidoderm patch in terms of delivery, but the active drug is an anti-inflammatory. I’ve heard from other Dercum’s patients that they’ve found it helpful.
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    Q: My doctor doesn’t seem willing or able to help me manage my pain! What do I do?
    A: I’m honestly not surprised to hear from so many of you who report that their primary care physicians are at a loss when it comes to how to treat the pain inherent in Dercum’s Disease. Managing severe chronic pain, especially when caused by such a rare disease, is typically outside the scope of an Internist’s expertise.
    Which is why I always recommend that Dercum’s patients seek out the guidance and care of a Pain Management Specialist. These Doctors are trained specifically in how the body reacts to pain, and how to help manage it. No one will be better equipped to help manage your pain than a Pain Management Specialist. They’ll work with you to come up with a multi-pronged approach to treating all aspects of your chronic pain.
    Unfortunately, not all Pain Management Specialists are comfortable dealing with chronic situations, especially those that could potentially require long term narcotic use. Be prepared to be turned away by many pain management offices. It’s just the nature of the business, given the sad & unfortunate abuse of pain medication, especially narcotics. That naturally complicates things, making it harder for those of us who really do need such medications to survive.
    So when approaching your search for a Pain Management Specialist, please keep the reality of the situation in mind. Be mindful that they’re always going to be on the offensive against potential fraudulent patients who are merely looking for their next high. Be aware of the fact that your requests, your habits, and your eventual regimen of pain medications are going to be very, very closely scrutinized. Expect to be asked to participate in regular drug screenings, to ensure that you really are taking the drugs you’re supposed to be taking. Often times, pain management practices will also ask you to sign a contract of exclusivity – meaning, you swear to only obtain prescriptions for pain medication from that one doctor. Keep in mind that all of this is not only to protect your doctor, but you as well.
    Once you do find a Pain Management Specialist, it might take a while to find an approach that best suits your needs. But no one will be better able to treat your pain than someone who specializes in this exact field of medicine.
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    Q: I have such a difficult time dealing with heat! What more can I do to try and prevent getting overheated?
    A: Trust me, the battle to remain cool is constant for me. I completely understand the constant struggle to keep your body at a comfortable temperature, especially during the summer months. Over the years I’ve devised a few simple tricks that might be of use to you.

    The first and most important is, be mindful of what you’re wearing! I don’t just mean to wear short sleeves and short pants. I mean, look at the tags before you put anything on. What your clothes are made of will have a huge impact on the way your body reacts to different temperatures, and ultimately, how you feel.
    Man-made fibers don’t breathe as well as natural fibers. Meaning, air flows more easily through cotton than it does polyester. Even a cotton/poly blend will feel more stifling than 100% cotton. It’s gotten to the point where my body is so sensitive to the slightest change in temperature that I can literally tell you if something I’m wearing contains any polyester at all, without looking at the tag.
    Try it for yourself – see if you can feel the difference. Wear polyester one day, then cotton the next. See if you can feel any changes in the way your body reacts to heat. Do you perspire more? Does your perspiration smell different? Do you start to feel overheated faster? Does it take you longer to cool down?
    I can certainly feel the difference, now that I know what to look for. And I bet you will too!

    Besides switching to natural fibers, I’ve also started carrying instant cold compresses with me wherever I go. They’re little pouches that contain a mix of chemicals inside, some in crystal form, and some inside a small bladder that, when ruptured, mixes the chemicals together causing an instant cold reaction. I carry at least three with me at all times, so that the minute I start to feel too warm, I can pop one and place it over a major artery to instantly cool me back down. These have saved me from heat stroke on many, many occasions!

    I’ve also started carrying portable fans with me, both battery operated and the traditional folding Japanese variety. Even the slightest change in air flow can make a world of difference!

    Lastly, you might also want to look into silica gel neck-wraps. I discovered these as a kid when I lived in Tucson, Arizona. Every summer you’d see these ribbon-like neck-wraps on sale at every convenience store. They’re long strips of fabric with a pouch sewn into them, which are filled with silica gel. When you soak them in cool water, the silica gel expands and remains cool. If you tie that around your neck, it applies that cool temperature right over your jugular vein, keeping the blood flow to your brain nice and cool.
    Although they aren’t as readily available outside the Arizona desert, you can order them online or you can make them yourself! eHow.com has instructions available on how to make them, which you can find by clicking here!
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Have any other ideas? Feel free to contact me! I’ll be happy to post the best ideas here (with credit, of course!)

- Organizations & Misc -

    Q: I need financial help, do you provide assistance for uninsured Dercums sufferers?
    A: I’m very sorry to say it, but I’m afraid that I’m not aware of any sort of charitable assistance programs specifically for those suffering from Dercum’s Disease. If nothing else, you might want to look into the possibility of being treated at the Mayo Clinic or Johns Hopkins, both of whom have programs for those who cannot afford treatment. There may also be other assistance programs in your local area. A good place to start would be to contact the nearest university hospital. They often have programs for treating uninsured patients.
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    Q: Does the Dercum’s Society provide an online support forum for sufferers?
    A: Unfortunately I simply don’t have the time to maintain an online support forum. Maintaining such a forum requires a great deal of time and effort. Given the fact that I’m still struggling with the day to day trials of living with Dercum’s Disease myself, I simply am physically unable to keep up with such a huge responsibility. Perhaps that will change in the future, but as of right now, I simply couldn’t keep up with it.
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    Q: Do you participate in any Dercum’s Disease conferences, meetings, and conventions?
    A: No, the Dercum Society is not in any way involved in or associated with any Dercum’s Disease conferences, organizations, meetings, or conventions. We also do not endorse any such meetings. If you see our name on anything like that, we would encourage you to please report it to us.
    We have been notified in the past that certain organizations and conferences have attempted to make it appear as if we are involved. Please know that we have never been involved in any sort of conference or meeting in any way whatsoever. Any use of our name, image, or logo has not been authorized.
    Again, if you have seen our logo being used anywhere for any such purpose, please let us know immediately.
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    Q: Do you charge money for any of the information you provide? If I pay you, is there any additional information I can receive?
    A: No, the Dercum’s Society does not solicit donations or money in any way whatsoever. Everything we have to offer is offered freely online to everyone who visits this website. I pay for this site out of my own meager income because I personally believe it is important to do so. I do not believe that information about this disease should be reserved for only those who can pay. It is freely available elsewhere, and so it shall remain freely available here. I would not encourage you to spend any money for information about Dercum’s Disease, since everything currently known about the disease is already freely available.
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    Q: Can I repost the information I’ve found on this site elsewhere?
    A: You’re welcome to share the information on this website, provided that you clearly give credit to the Dercum Society and include a link back to our website at www.DercumsDisease.com.
    However, you may not reproduce anything on this website for commercial purposes – if you seek to generate any sort of income using information from this website, we reserve the right to prosecute.
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    Q: My Doctor would like to speak with you. Is it okay if they email you?
    A: Absolutely! So long as they fully understand that I’m not a Doctor myself, although I would be happy to help them in any way that I can. I can direct them to others, provide them with additional articles, etc. I’m always happy to help in any way that I’m able!
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- More Coming Soon! -

    I really hope this has been helpful for you! If your question isn’t listed here, please feel free to contact me!
    As always, I’ll be adding more to this site over time, so please keep checking back! If you have any suggestions for anything not included here, please send it my way!
    Thank you! And never forget, you are not alone!
          - Heather

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