People have been asking me about how I manage to live with chronic pain recently, so I figured I would compile some ideas and resources that have helped me on my journey.
First, I need to note that I am not pain-free and don't believe I will ever be pain-free. That was the first obstacle that I had to address. For me and many others with complex chronic conditions, pain can be mitigated to an extent, but we may never reach a state of being completely pain-free.
I'm not saying that to sound pessimistic, but realistic. It's not helpful to blindly believe that there is some cure-all remedy to make everything miraculously better. Pain cannot be prayed away, medicated away, or exercised away. Unfortunately, the human body is indeed failable, and we live in an imperfect world. These are simply facts.
Proper Doctors & Medical Team
I had many people, including doctors, tell me that I didn't need to seek further treatment options or diagnoses when it was first suspected that I had Ehlers-Danlos Syndromes (EDS). Unfortunately, these individuals could not be more wrong in this assessment. While there are technically no "treatments" or cures for EDS, significant modifications can be made to address the pain and symptoms caused by these medical complexities.
I currently use multiple sets of splints to help support my body. I use wrist splints to stabilize my wrists and hands while I sleep. I use finger splints daily so my fingers don't dislocate. I use a mouth splint overnight to help mitigate TMJ and the subsequent issues it was causing. I also wear insoles in my shoes to help support my feet. None of these modifications could have been made without the proper diagnoses and doctors.
It took me over ten years to find a doctor who would finally listen to me and not ignore my symptoms. The proper doctors and medical professionals are crucial to creating the appropriate treatment plan, as each individual's chronic pain is unique and may require different adaptations per the individual.
The process of finding the right doctors can be costly and time-consuming. When coupled with chronic pain, this process is often mentally and emotionally draining, especially being invalidated by the medical community. Add in trying to deal with insurance and logistical issues; this leads many people to give up on doctors and look to self-medicate. Don't get discouraged. Keep going until you find the support that you need and deserve.
One of the things that I resisted for the longest time was going to physical therapy. I didn't really understand the need for PT, but I was at my wit's end, and I needed something to change, so when my doctor recommended it, I caved and went. That was three years ago, and I haven't stopped going since.
Physical therapy is more than just a rehabilitation practice. This approach seeks to help people promote and maintain optimal physical health while addressing such issues as strength, mobility, flexibility, balance, and more. As we say in PT, the motion is the lotion -- as in, your body needs to move to loosen up. Even though it may seem counterintuitive, the more you move your body, the better it will feel.
I know that I will always be in pain. I will be in pain whether or not I work out. Physical therapy workouts are not fun and games, it's a lot of sweat and muttering at my trainer, but I know that long-term, I am doing what is best for my body. So if I am going to be in pain, I might as well reap some benefits from it.
Heat & Cold Therapy
I have a growing collection of heating and cooling products. Again, I listen to my body to know what it needs at the time versus following rigid recommendations.
Infrared heat is an excellent option for chronic pain, as the heat helps with circulation and increases blood flow to muscles. I like using an infrared heated crystal mat with jade, tourmaline, and amethyst as it helps to keep me grounded. I use a full-sized version on a massage table and also have a smaller-sized version on my desk chair. I also use a small portable heating pad and a heated blanket for full body coverage.
I have a rotating supply of ice packs that I use daily. My favorite one that I fall asleep with nightly is a large reusable style. Depending on the type of chronic pain that you have, there are different types of ice packs for hands, feet, and knees for easy usage. If you can think of it, someone has likely already designed it and put it on Amazon.
Getting massages is one of the most therapeutic and helpful things I have experienced for my chronic pain symptoms. If I could afford to do so, I would get massages weekly to help keep my muscles relaxed. Alas, that is an expense that I cannot afford, so I have invested in a few different types of at-home massage tools.
Personal massage tools can help to work out any tight muscles or knots without the cost of traditional massage therapy. I started my collection with a massage roller stick to help with myofascial trigger release. I also have a massage hook for trigger point therapy. In physical therapy, I was taught to use massage balls (or tennis balls!) to help release arthritic pressure in my feet. I recently added to my extensive collection a deep tissue massage gun after finding a decently priced option. I also have a TENS EMS (Electric Muscle Stimulator) device, but it is a bit more complicated to use than other massage tools.
Don't overlook the power of topical lotions, even the ones sold over the counter. I have found great success with topicals that include CBD and numbing or cooling agents. Though this is a temporary fix, it can significantly help in a pinch. Several different topicals contain CBD, but one that I would recommend is iLava Touch.
I would be remiss if I didn't mention how much I have benefited from medical cannabis. I have been a medical cannabis patient for years and have experienced great success with this medicine. Thankfully I do live in a state where we have a robust medical program where I have access to high-quality vapes, concentrates, and edibles, so I don't have to smoke the herb. Cannabis edibles help me on days when I struggle with extensive body pain. Vapes help me with near-immediate results.
As with any medicine, there is always a process of finding the proper dosage and strain for you. Strains can be reverse identified by their terpene profile, looking at the benefits of the terpene and finding options from there. Cannabis is so specialized from state to state that I cannot make recommendations outside of where I live. Still, I will say that I prefer the quality of local dispensaries over multi-state conglomerates.
If you're looking for any CBD products, the company that I would recommend is Lazarus Naturals. They offer excellent quality and a variety of options. And if you are not in a position where you're concerned about testing positive for THC, I always recommend full-spectrum products. There is not enough THC to make the product psychoactive but enough to enhance the medicinal components of the CBD.
Please note that cannabis is not for everyone. In my opinion and experience, it is more helpful than opioids and doesn't hold the number of adverse side effects. However, if you struggle with addictions, please proceed with caution.
Sleep & Sensory Friendly Rooms
Everyone loves to sleep, but those with chronic pain have a special love affair with it. Sleep is one of the best things to help me "reset" my pain levels. I am a big fan of naps and will take naps to give my mind a break. This also includes ensuring I regularly get a whole night's rest because my body can tell if it hasn't rested enough. When I don't sleep well, my body hurts more, and I am more irritable overall.
Even if I don't fall asleep, laying down in a comfortable and soft bed helps my body to relax. My bed is full of pillows, so I can prop my body up and support it as needed. I also have a growing collection of soft blankets that allow me to wrap myself up and soothe myself.
I have tried to make everything in my spaces sensory-friendly by removing harsh overhead lighting and using soft textures. In addition, I placed calming galaxy lights in almost every room in our home. I have also added multiple lights that allow for dimming and various colors to help control the energy of the space. Lighting may not seem important, but creating a comfortable environment is helpful when you're in pain.
Don't Cause Intentional Harm
This one sounds obvious, but sometimes it takes more awareness than we realize. When struggling with chronic conditions, you must do more proactively than most people to maintain your baseline. I've learned that short-term pleasures do not outweigh the long-term consequences.
Staying hydrated and not consuming too many dehydrating beverages to neutralize is one of the most important things I've had to embrace. Drinking alcohol is another thing that I tend to avoid in the spirit of not causing intentional harm to my body. While we don't think that one or two drinks will have much effect, any alcohol is a neurotoxin. Neurotoxins affect the nerves and take time for the body to filter out, so one drink may affect the body for multiple days afterward.
There are certain foods that I love that don't love me back. Unfortunately, I have had to eliminate these foods because eating them causes more harm than good, even if it's a healthy option. You must listen to the subtle clues your body gives you via pain and discomfort. If every time you eat a particular food and notice the same reaction each time, it may be a good idea to stay away from it. Every day is a new opportunity to make better decisions
One of my saving graces is my phone. The technology that we have at our fingertips is truly astonishing. It is my lifeline to the world, but it is also my escape from it. Videos on Youtube and Tiktok are a great distraction from pain. I also like to play video games that engage my mind and refocus away from the pain. Portable gaming systems are also an excellent opportunity for fun and distraction from discomfort. Tablets that offer video streaming and reading options are beautiful ways to keep the mind engrossed.
Change of Scenery
Even though it may not initially seem helpful, staring at the same four walls can be draining. As much as I love my house and the curated space, I need to get out sometimes. Staying inside for extended periods can lead to depression and worsening chronic pain. Getting outside in the sun for fresh air is an excellent option. If the temperature or location doesn't allow for time outdoors, allow yourself to change your setting—if you're in bed, try the couch, and vice versa. A fresh perspective can do wonders.
An Understanding Community
One of the most comforting things I've found is community. It is reassuring to know that you're not the only person riding the struggle bus. It's hard to admit where you're at sometimes, so it's encouraging to see others experiencing the same issues.
Opening up about my pain has allowed others around me to soften their edges and share their issues. When we realize that we all struggle silently, it makes us feel more normal. If we don't discuss our issues, people around us don't know.
You're the only one experiencing what is going on in your body. The people around you are likely not psychics, so you need to be vocal about where you're at with your pain. Some days are better than others, but we must communicate it to those around us if we expect them to have compassion and understanding for our situation. By being transparent with what you can and cannot do due to your pain, there is less chance for disappointment. Speak up for what you need, whether sitting down to rest or taking a nap to reset your body. Only you know what you need.
One Day at a Time
I try to focus on the present day and not let myself dive too deep into the future. I do my best to give my body the daily nourishment it needs. I try not to beat myself up about what I was or wasn't able to do the previous day because of how I felt. I like to remind myself that nothing lasts forever, and the feelings of discomfort will soon fade.
What are some of the methods that you've found to help you with chronic illness? I would love to hear about it in the comments below!
Arielle is a best-selling author, holistic life coach and intuitive energy healer.