Living with Chronic Pain – Tips and Resources for Managing Pain Associated with Ehlers-Danlos Syndrome (EDS)
Pain…just the thought causes me to start breathing deep, my shoulders tighten and I can feel a headache wanting to break through. Talk about a full on psychological/physiological response to just the thought of pain because I am writing about it in a blog post. Pain and chronic pain has been a part of my life since I was a kid. And managing chronic pain associated with EDS has become my profession.
I can remember crying in the middle of the night asking my mom to rub my legs, because the ache from growing pains was so bad. I’ve had neurological migraines since puberty, chronic back pain starting at age of 14 (probably even earlier) and years of living with debilitating chronic pelvic pain. And those are just a few types of chronic pain that I live with, not to mention the pain of natural childbirth and the recovery afterwards, pain from breaking a bone, pain from full dislocation of my knee, and post-surgical pain. So, yeah … I get “pain,” like really get it. I can describe in detail how different each type is, how it feels and the severity in which I’ve felt it.
When I’m asked, “How are you feeling today?” I always just answer, “Fine,” because what else can I say? Pain is different every day and it gets quite boring listening to myself talk about all the aches and pains I have, where they are and how severe. In my opinion, things could always be worse and EDS isn’t going away, so why go into detail discussing it? Pain is pain. It’s always there and is my constant companion, who I’ve learned to accept as just part of life, and in many ways, has made me who I am. Wallowing in what life would be like without pain or even venting about wishing I had a pain-free day does not help me. It never has and it never will. Pain does not deserve the air I breath or even my energy to discuss it. Why? Because then I’m giving pain power and it does not have the power. I discuss pain with the main EDS physician and even my PT, but I pretty much just focus on doing what I know works or having someone show me something new, so I can move on.
I also find no benefit or need to “prove” how much pain I am in to other people. They do not understand and will never understand until they actually feel something similar themselves. Plus, how can anyone of us ever really judge someone else’s level of pain? It’s been proven more than enough that chronic pain is a totally different ball game than acute pain, such as from a broken bone. It’s an entirely different type of stress to the body, physically and mentally, not to mention what it does to us emotionally. Judging someone’s pain level based on how they look is nothing other than ignorant. We all deal differently. And we all have different sensitivities and perceptions to various pain sensations. Some do better with pain, while others cannot cope with any level of pain at all – no matter the type and intensity.
Honestly, I always thought that everyone lived with chronic pain. Possibly because of how I was raised and because growing up, I was surrounded by people who lived with chronic pain. Chronic pain seemed like part of life – my destiny as I aged. Just like getting fat and cutting my hair short. Nothing wrong either of them, but that’s what I was around. It was what it was. And it happened to everyone.
And then, I had a very good friend (who has EDS, BTW) say to me, “God, I have a headache today. I’ve never had a headache. I don’t know how you deal with them constantly.”
I don’t think I said much, other than realizing that living with daily chronic pain wasn’t the norm, and it is very challenging to manage.
I am often asked about how to deal with chronic pain and the varieties of pain that most of us with EDS, a chronic pain condition, live with. This post, including my personal statements about how I manage chronic pain, should not be interpreted as me dismissing the severity of chronic pain that others feel, nor should it be interpreted that I believe that everyone should manage chronic pain the way I do. In many ways, the way I manage chronic pain isn’t always the best.
Please remember, we are all different. Do what is best for you. You can also read my disclaimer here.
First, we need to establish some understanding about pain and EDS. Living with chronic dislocations and subluxing joints is inherently painful. And unlike other chronic pain conditions, EDS can include chronic acute pain. Then there is the general all over body chronic pain associated with muscle fatigue and chronic fatigue. Chronic pain is in and of its self a condition that needs to be treated. These different pains are very real and can be disruptive to normal function. However, there is a however: maladaptation.
Maladaptations are coping mechanisms that are actually counter productive or damaging over time, for example, kinesophobia. I might have intense pain in my leg on a Friday. I start to limp to compensate. After a few days, I am still limping, because it prevented me feeling a pain. But, with EDS my joints are so mobile, perhaps the subluxed joint or tissue that was causing the pain is back in place by Monday. If I continue to limp to avoid pain, I am going to atrophy, develop muscle imbalances etc., all the while to avoid a pain that is no longer there. We have to be willing to try movements today that may have been uncomfortable yesterday. Working with skilled Physical Therapists, Feldenkrais teachers, yoga instructors or Pilates coaches can help develop proprioception needed to avoid this kind of maladaptation by developing a keen awareness of healthy alignment and movement.
Another maladaptation is pain catastrophizing. Yes, the pain of EDS is real. But not every pain is actually an indication of injury or trauma. Learning the difference can make or break a workout day, and we need our regular workouts to maintain muscle mass and cardio health. Additionally, the hormones of the emotions fear and anxiety can increase the experience of pain. Using meditation, talk therapy, breathing exercises, any resource that helps to keep us calm in the face of our challenges and pain, can help control the mind’s reactions to pain and prevent it snow balling the interpretation of the stimulus and getting stuck in a catastrophizing loop.
You may want to read this article on Chronic Pain Syndromee. The article above discusses that chronic pain, despite having conditions that really do cause pain, can be considered its own separate condition in itself. There are many people with similar conditions that you and I have, but do not have the same level of pain. This article addresses the possible reasons why and what we can do as “chronic pain patients” to help ourselves manage our own pain, through the way we “think” about our pain, and pain in general.
There are also compounded pain creams (if made by a reputable compounding pharmacy, which is another topic), which can help many chronic pain patients (including those with EDS) manage their pain, without the need of high-dose narcotics.
Unfortunately, there are not currently any in-patient programs that understand EDS. I have talked with parents and teens and read their stories who have been at programs across the country and the stories are horrifying. From Mayo, to RIC in Chicago, to Florida’s, to Hopkins, they all have “push through the pain” and “ignore the pain” philosophies that result in injury in an EDSer. One promising program is in the UK, which EDS blogger, Sarah Wells of “My Stripy Life,” attended. The program is called the RNOH Stanmore Rehabilitation Program, and you can read Sarah’s post about her experience here.
When a child or adult has debilitating pain, it is crucial to his/her physical and mental health to get it under control, and that often requires medicinal and non-medicinal methods. Dr. Forest Tennant, author of the Intractable Pain Handbook, is a great resource.
Pain in EDS is unique in the medical world because it is one of the few conditions causing both chronic and acute pain. We often have to use a variety of medicinal and non-medicinal strategies. This requires becoming a collector of methods of pain relief. We need a toolbox to battle pain. In addition to medicinal options you can work out with your doctor, some non-medicinal options include:
TENS unit, ultrasound and cold laser, heating pads, ice, topical products like Biofreeze or Tiger Balm, Warm soaks with Epsom salts, braces, canes, walkers, scooters, wheelchairs, meditation, Biofeedback, deep breathing, Physical Therapy, exercise, professional massages, Acupuncture, Dry Needling, and distraction.
The more tools you can access when needed, the better your pain control will be.
Dr. Francomono describes her “5% Plan for Pain Relief. Take, for instance that your medications take care of 20% of your pain relief. Then you use your TENS unit for another 10% reduction. Some Tiger Balm on your painful joints brings another 5% of pain relief. Maybe you could pull out your heating pad too for another 5% of pain relief. Then you decide upon a warm soak with Epsom Salts for another 10% pain relief. Deep breathing and some PT exercises combine for another 10% of relief. And then you watch a great movie for another 15% of pain relief. So now you have 75% of your pain managed effectively. How would your days be different if 75% of your pain was gone? Dr. Francomono’s 5% plan demonstrates the importance of using multiple strategies…even if each method only makes a tiny difference, the difference made when they all are added together is significant.”
Pain Management Resources and Links:
World Health Organization (WHO): “Guidelines on the Pharmacological Treatment of Persisting Pain in Children with Medical Illnesses” – parents should be aware of the large risks with NSAIDS, such as Ibuprofen, as well as other classes of medications.
Anne Lynch-Jordan, PhD: “Pain Management: More than Just a Pill” (2012 EDNF Learning Conference – includes Cognitive Behavioral Therapy, biofeedback, meditation, etc.)
Michelle O’Sullivan & Michele Pavlis: “Occupational Therapy Management of Hypermobility in EDS.” (2012 EDNF Learning Conference)
Dr. Padeep Chopra: “Pain Management in EDS” (2013 EDNF Learning Conference)
Michael P. Healy, PT, DPT, DOMTP, CSN, CPT, MBA: “A Unique Pain Management Treatment for EDS Patients: Manual Therapy Approach” (2013 EDNF Learning Conference)
Dr. Howard Levy: “A Truly Multidisciplinary Approach to Managing Pain and Fatigue” (2013 EDNf Learning Conference)
Abbas Qutab, MBBS, DC, PhD, OMD: “Botanical Medicine and Dietary Interventions to Alleviate Pain and Inflammation” (2013 EDNF Learning Conference)
Dr. Pradeep Chopra: “Managing chronic pain in Ehlers-Danlos Syndrome” (2015 EDNF Learning Conference)
Muldowney, DPT: “Physical Therapy for the management of pain in Ehlers-Danlos Syndrome.” (2015 EDNF Learning Conference)
Here are some links to help find a massage therapist, who uses MFR (or Myofascial Release, which is the key word to use when searching):
Non-medical options that can be used at home to help with pain management:
Trigger Point Performance Total Body Self Myofascial Release & Deep Tissue Massage Kit
HoMedics Massage Pillow Rubba Roller (or any foam roller)
The Back Buddy
Shiatsu Massaging Pillow (see picture to below)
There are also many books on managing chronic pain with Hypermobility, EDS, Fibromyalgia and similar conditions; most are easily found on amazon.com, just through a search using the words: Hypermobility, Trigger Point Therapy and/or Ehlers-Danlos Syndrome.
In addition, a lot of research is showing that proper nutrition, a healthy diet and exercise, does in fact help decrease pain and other issues, in many people with EDS. There are several books on helping heal your body from the inside out, using different lifestyle approaches, such as diet, specific types of exercise and other alternative treatment modalities. Carrying extra weight on a hypermobile body frame, smoking cigarettes and/or excess consumption of alcohol, WILL play devastating role on symptoms and issues associated with chronic pain. Period.
Resources on a holistic approach to pain:
Free guided meditations – Some of these are similar to the above page, but voices are different and what one person likes, another person does not. Key is to find what works best for you).
Living with chronic pain is one of the hardest things that many of us have to endure on a daily basis. Living with pain while also coping with the multi-systemic effects of joint hypermobility, commonly diagnosed as Ehlers-Danlos Syndrome (EDS), is even more challenging. Some of the best approaches for managing chronic pain due to Hypermobility Syndrome/EDS are gaining a solid understanding of how hypermobility can affect the entire body, learning how to move and exercise properly, making healthy lifestyle changes, and finding a strong, positive support system.
Below are a few additional resources that explain why lack of activity is linked to chronic pain, a great resource from Standing up to POTS on pain management, as well as additional posts related to living with chronic pain.
The link between chronic pain, lack of movement/activity, and “The Disuse Theory.”
EDS Info.com – blog that focuses on the most recent medical journal articles about chronic pain, opioid use, chronic pain associated with EDS, Fibromyalgia and other chronic pain conditions.
Last, below are a few additional links on living with & managing chronic pain:
My butt is flat! Why sitting too much cause muscle atrophy, chronic pain and problems moving around
Long car rides and living with chronic pain
Yoga and Hypermobility – how to practice yoga safely for strength & managing chronic pain
Tai Chi for chronic Pain