LIFESTYLE ADVICE
simple ways to make improvements
LIFESTYLE ADVICE
simple ways to make improvements
We understand. Living with Dercum’s Disease can feel like you’re constantly at war against unending, debilitating, all-encompassing pain. For many of us, literally every inch of flesh hurts for every minute of every day, for our entire lives. That understandably feels like an insurmountable obstacle, a constant challenge to everything we wish we could do, a permanent reminder of everything we can’t accomplish.
We’re here to tell you, please don’t give up hope. There is so much that can be done to help make our lives that little bit easier. As the old proverb goes, a journey of a thousand miles begins with a single step. This section is devoted to helping you find those single steps that will help you on your journey to a better quality of life.
In the battle against constant chronic pain, every little bit helps. None of these individual pieces of advice will cure your Dercum’s Disease. But like a leaking bucket, each little bit helps to stem the tide of overflowing pain.
Important notes: None of this information should be taken as absolute scientific fact. All of this advice is entirely anecdotal and not presented as fact. Most importantly, none of this is medical advice and should not be construed as such! Nothing on this website should ever supercede the advice of your doctor. We also want to note, we are not selling anything at all in this section. This is simply a list of small adjustments to daily life that we hope might help you find some relief. Always consult with your personal doctor before making major changes to your lifestyle or diet.
Small steps to help you plug the holes of chronic pain
Natural Fiber Clothing
Artificial fibers are beautifully designed to trap heat next to your body by restricting air flow through the fabric. That’s great if you’re trying to survive in the arctic, but not so helpful if you’re susceptible to overheating. Many peer-reviewed medical journal articles have noted that for some unknown reason, Dercum’s patients tend to have an insensitivity to heat. If you overheat easily or frequently feel ill from the heat, you might try wearing clothing made from only natural fibers. Natural fibers like cotton, silk, and linen allow for greater air flow, which helps you to maintain your body temperature and stay cool. That can be extra helpful if you tend to overheat easily. Also of note, many man-made fibers are also often covered in various finishing treatments that can further seal the fabric, restricting air flow even more. Give natural fibers a try and see if you notice a difference.
Blood Pressure Tests
As noted in the published medical research, Dercum’s patients frequently experience painful enlarged upper arms. This can make standard blood pressure tests exceedingly painful! These tests are vital, but they can be done in a less painful way. All you have to do is ask!
There are two easy ways you can have your blood pressure taken without causing increased pain in your upper arms. First, ask to have your blood pressure taken on your lower arm. It can easily be done, especially for routine tests and vitals. A well-trained nurse or doctor should know how to perform it that way. They simply place the cuff just below the elbow, then use the stethoscope to listen at the wrist.
Another option is to buy and carry with you at-home wrist blood pressure monitors. They’re widely available at just about any drug store. They tend not to be quite as accurate, but when it comes to taking routine vitals, most physicians won’t mind the ever so slight variation in the data. Most Dercum’s patients find wrist blood pressure cuffs to be far less painful that the larger traditional cuffs used at most doctor’s offices.
Look for Potential Allergens
Peer-reviewed medical research into Dercum’s Disease has shown many abnormalities in most patients’ immune systems, including a higher than average rate of allergies. It can be very difficult to figure out and eliminate all potential allergens, but any steps you can take to try and figure out what you’re allergic to would be a worthwhile investment.
Naturally this starts with visiting an Allergist. They can help guide you through the process of any necessary testing and perhaps an allergy elimination regimen if necessary. In the meantime, it might be a worthwhile experiment to identify potential common allergens in your home and remove them whenever possible.
An allergy elimination test is a somewhat long, but usually worthwhile way to determine any potential allergies you may have. With the guidance of your doctor/Allergist/both, you identify a potential allergen and work to remove it from your diet or your home. You do your best to eliminate any potential exposure for a period of time, tracking any changes in symptoms along the way. Then after a certain period – typically around six months or so – you slowly reintroduce potential allergens one at a time. You can then start to determine what may be the potential cause of any unusual symptoms, as allergic reactions can manifest themselves in a wide variety of ways, well beyond just the traditional rash or breathing problems. Naturally, given that allergic reactions can be severe and life-threatening, again, it’s very important that you have your doctor’s guidance throughout this process.
There are certain items that tend to be common allergens, even for people without Dercum’s Disease. It might be a good idea to start there. Anything with a strong fragrance can be a potential allergen, especially if that scent is particularly long-lasting, e.g. perfume, air fresheners, fabric softener, dryer sheets, hygiene products, soaps, detergents, incense, oils, etc. If you can smell it, that means you’re breathing in small particles of that substance. If you can smell it on your skin, that means those same particles are present there as well. Even the smallest amount of an allergen can be enough to cause a reaction. So start with anything that might have a strong scent and try eliminating them for a while.
Another potential allergen to be mindful of is anything mold-based. You might be surprised how many common household items are made from mold. For the vast majority of people this is perfectly safe and harmless. However if you happen to have a mold allergy, this can be quite cumbersome. If you’re trying to eliminate mold, do some research into common food ingredients such as probiotics, soy sauce, citric acid (distinct from citrus – not all citric acid comes from citrus), carrageenan, and many others. Again, for the vast majority of people all of this has been found to be completely safe. But if you suspect you may have a mold allergy, it’s important to do your research. If you find that you react badly around natural Christmas trees, you might want to consider looking into mold as a potential allergen. From the moment pine trees are cut, they immediately start emitting mold spores.
If you find you have a susceptibility to mold, you might also want to examine fungi as another potential allergen. Mushrooms are hidden in a wide variety of foods and don’t always have to be listed in the ingredients. If you find you feel ill after eating prepared, packaged pasta sauces, canned soups, packaged gravies, etc, then you may want to look into mushrooms as a potential allergen.
Naturally, almost anything can be a potential allergen. The best advice possible would be to very carefully track your diet and your symptoms. Then with your doctor, look back over the data you’ve collected for any potential correlations. Also, please don’t fall into the trap of thinking that “natural” or “organic” equals “safe”. Keep in mind, some of the most dangerous substances on earth are perfectly natural. Arsenic can be both natural and organic, but it’s still deadly.
Avoid Inflammation
When dealing with chronic pain, any kind of relief – no matter how small – is more than welcome. Do your best to thoughtfully consider any simple and easily avoidable sources of inflammation or irritation. If tight clothing irritates you, why bother with it when looser clothing is an option? If an underwire bra is causing added pain, is it really worth it? If your shoes are adding to your woes, why not cut yourself some slack and wear something more comfortable? Every little bit will help.
Another idea – avoid carrying any unnecessary loads. For ladies, cut down on the size and weight of your purse. For men, do the same with your backpacks, messenger bags, or briefcases. Do whatever you can to bit by bit remove any potential sources of irritation and eventually they’ll add up to at least some measure of improvement.
Protect & Cherish Sleep
Sleep is incredibly valuable and restorative. It’s especially important for chronically ill patients. Do whatever you possibly can to ensure healthy sleep habits. Try to go to bed at close to the same time each night. If you find you’re having a hard time sleeping – which is understandable when you’re in pain – there are certain small things you can do to try to help. Try to avoid looking at your phone, tablet, television, or other bright screens close to bedtime. Studies have shown that the brightness of the screens can affect our natural ability to fall asleep. Another suggestion is to avoid doing anything in your bed other than sleep. If you make it a habit that each time you get into bed you’re doing so because it’s time to sleep, that can help over time.
The more you can ensure a good night’s sleep, the better off you’ll be!
Low Impact Exercise
Generally speaking, given the sheer amount of pain and inflammation involved in Dercum’s Disease, it’s important not to push your body too hard with strenuous forms of exercise. But of course, regular healthy habits of exercise provide countless health benefits. In the case of Dercum’s Disease, the more low impact the exercise, the better off you’re likely to be. Many patients have reported that swimming seems to be the most beneficial, least painful option. Some patients even claim that floating in a swimming pool is one of the few times they feel as little pain as possible.
In addition to swimming, you might want to look into other low impact forms of exercise such as yoga, tai chi, aerobics, or any other similar method that can get you up and moving without putting too much strain on your joints or your body as a whole. Naturally none of this is going to cure your Dercum’s. For some unknown reason, Dercum’s mutated fat cells don’t respond to diet or exercise. But exercise will still affect the non-mutated fat cells in your body, in addition to other benefits such as improving lung function, muscle tone, lymphatic flow, and so on. Just about anything you can do to encourage and maintain basic healthy habits will be extremely beneficial.
Smile & Laugh Often
Countless studies have shown the health benefits of laughter and an overall positive attitude. Yes, living with Dercum’s Disease is a constant uphill battle, one that’s easy to be overwhelmed by. It’s entirely understandable and perfectly normal to have days where all you want to do is cry. You have every right to have sad days.
But please don’t let that be the norm! Anything you can do to lift your spirits, any excuse you can find to laugh, will be of immense benefit to your overall well-being. We know that scientifically speaking, when we laugh, our body releases endorphins that not only make us feel happy, but can actually help to numb the effects of pain. Endorphins are our body’s natural pain killers. So pump out those natural pain meds by making an effort to laugh freely, laugh loudly, and laugh often! If you have a spouse or partner, kiss them as much as possible – that releases endorphins too. Petting animals seems to release endorphins for many people too.
Basically, do anything and everything you can to approach life with a positive attitude. Your body will thank you for it.
Photo of laughing baby by Philippe Put.
Companionship Counts
It’s a natural part of human nature to abhor being alone. Loneliness can have many detrimental effects on our health and well-being. Anything you can do to try to encourage and develop some form of companionship will be extremely beneficial in the long run.
In addition to companionship, empathy can play a large part in your emotional well-being too. There’s something miraculous in seeing someone’s reaction when they finally realize that someone out there understands what they’re going through. Empathy and human interaction are powerful tools. If you take away nothing else from this site, please believe that there are countless people out there who understand what you’re going through, who feel for you, and who care about you.
Anecdotally, many chronic pain patients have also reported that they feel emotional benefits from interactions with animals. There’s a growing trend of therapy and emotional support animals. (It’s important to note, emotional support/therapy animals are not granted the same degree of legal protections as trained service animals.) If you are able, consider getting however much of a pet you can handle, whether it’s as small as a goldfish or as large as a dog. Having a loving face to look back at you can do a world of good. Having someone else’s well-being to look after can give you purpose and a reason to get out of bed, even when you feel miserable. But of course, always talk to your doctor and very carefully consider the responsibilities, consequences, and potential risks of pet ownership before taking any animal into your home. Especially if you have a weakened immune system, you should be very, very careful about which types of animals you interact with.
Relieve Stress Regularly
We highly recommend that you identify anything that helps you to relieve stress and make a concerted effort to make those activities a habit. Some Dercum’s patients find massages to be helpful at relieving stress, while others can’t tolerate being touched without pain. Whatever you do to relieve stress or distract yourself from the pain, make it a habit, do it regularly, and don’t feel guilty about it. Whether it’s playing a game on your phone, reading a good book, or drinking a cup of tea. Allow yourself that time to rest, recharge, and occupy your mind on something pleasant. There’s absolutely nothing wrong with taking time for yourself every so often to recharge your batteries.
Thank Your Medical Providers
In conclusion, this may seem a little odd to find on a page all about helping you feel better, but please take the time to thank your medical providers. An attitude of gratitude can go a long way toward improving your mood and overall outlook on life. It can also help your medical providers to know that their hard work is appreciated. All of that leads to better care for you, a better experience for medical professionals, and an overall better public impression of the Dercum’s Disease community. When it comes to gratitude, everybody wins.
To everyone in the medical community, thank you!