Currently, there is no treatment and no cure for Ehlers-Danlos Syndrome. When the condition becomes symptomatic, it causes severe, disabling, and intractable pain. Given that there is no recognized protocol for managing Ehlers-Danlos Syndrome at this time, it is no surprise that there also exists no agreed-upon method of dealing with such pain.
This leaves EDS patients in a difficult spot – having to make a decision which will affect our lives, our futures, our sense of self while having limited and/or conflicting information available 🙁
Some medical practitioners and EDS patients promote the idea of using aggressive, high-dose opiate therapy as a humanitarian effort to treat symptomatic EDS individuals. (link)
Others promote alternative methods to addictive pain medications such as massage, acupuncture, dietary changes (such as low histamine and gluten-free), physical therapy (aka Muldowney protocol), orthopedics, PACING, cognitive behavioral therapy, biofeedback, etc.
And finally, there are those practitioners who promote medical marijuana or short term use of opiates/narcotics.
EDS patients are left to pick and choose from those three views on managing chronic pain associated with Ehlers-Danlos Syndrome. Our decision is often highly influenced by our environment (family and friends, work, financial resources, societal pressures), and will evolve over time. For others, like me, my decision to not use opiates and narcotics came from the fact that I have very bad allergic and neuropsychiatric reactions to these medications. For me, the decision was easy… but figuring out how to live by that decision brings with it some challenges!
SO, I decided to document what things I have found helpful with managing my EDS pain. IT IS REALLY ABOUT THREE BASIC STEPS TO FORM A FOUNDATION…
1. P A C I N G
Yes, pacing. Taking it easy, going slow, taking breaks.
Sound easy, right? The trick is being honest with myself.
Saying “I cannot do x if I do y”, understanding how my body reacts to foods, environmental factors, movements, stress, and then using all that information to make an educated decision about my current activity is NOT EASY. Accepting that naps have to happen, that early bed-times are OK, that not going out on a Friday night is SMART… is all part of accepting that I live with chronic illness and chronic pain.
For some, PACING is a foreign concept. Become a “spoonie” if it helps – read about the “12 spoons” concept which allows you to set boundaries on people and things that normally sap your already limited resources. This is also an excellent way to get friends and family to understand when you are in pain (and cannot adequately express things!)
More on the “12 Spoon Theory”
2. PHYSICAL THERAPY
Aye – no one likes this idea at first. But, I’m telling you – PT is key.
This is where you have to use that pacing skill the most! GO SLOW! Focus on the entirety of the movement with control – re-teach your brain WHERE ARE THE LIMITS OF MY TENDONS AND LIGAMENTS? Which muscles do I need to fire to perform this movement SAFELY?
I’m going through the Muldowney Protocol. Even though my SI joint is completely eroded from a separate autoimmune disease, his protocol is still helping manage my chronic subluxations and pain – more and more each day.
3. COGNITIVE BEHAVIORAL THERAPY / BIOFEEDBACK
Think about the first two suggestions.
You seeing the mental game involved with managing chronic pain with EDS yet?
It takes quite a bit of logical thinking – CONSCIOUS thinking – to over-ride movements/behaviors/routines that are not efficient/effective with EDS.
Example: With each step I take, I have to consciously think about bracing my core/abdomen, activating the muscles in my hip (or else I sublux them when I lift my leg!), then firing the muscles I need to lift my leg – while also holding my foot in the right place (hard to do when your tibia is out of place and your ankle ligaments are so floppy!)
That takes QUITE a few resources in my brain… and usually my brain is off thinking about a million other things I need to do during the day. Soooo, I usually mess up my steps, pop out my hips (then my ribs, then my shoulders), slump with exhaustion, and then get a headache/backache/neck ache/migraine from the terrible posture (and emotional defeat!).
There is also the whole fact that pain, emotions, and stress are all processed in the same part of the brain… so, when you are tired or upset, your pain will be compounded. Then there is the whole fight or flight or freeze stress response system running along side the pain… so if you get WORKED UP OR SCARED because you do not KNOW THE ORIGINS of the pain, it is a whole other level of compounding the pain!
Put all that together… and you see why CBT is a good idea, right?
Wait – it is EVEN MORE important for an EDS patient to have a good therapist because – well…. medical trauma plus genetics.
What does that mean?
Go into any support group and you will see a trend – EDS patients tend to feel disconnected from their bodies.
My theory regarding this fact is simple – something I call the “EDS DISCONNECT”.
- 1. We have poor procioception (as mentioned by Dr. Chopra) because of damage to our ligaments. We have a poor sense of where our bodies are in space and time, GENETICALLY.
- 2. EDS patients tend to have histories filled with medical trauma and relationship damage (associated with our medical problems). We already have a genetic predisposition to feeling disconnected to our bodies – so many of us use DISASSOCIATION as a COPING MECHANISM. We literally disconnect from our bodies as a way to cope with pain, unpleasant medical experiences/tests – which is TOTALLY UNDERSTANDABLE. However, this leads to problems with PACING and PHYSICAL THERAPY. Not to mention, it adds to “brain fog” symptoms, detracts from enjoying the present, and leaves us more likely to use disassociation in more unhealthy ways.
- 3. EDS patients – “ZebraWarriors” – often use their ability to disconnect from their bodies AS A WAY TO DO MORE. That’s when we start acting funny – pushing beyond the limits of our bodies purely on the will power generated by our minds. Yes, we pull off some amazing feats – but it comes at a cost which is both physical and mental.
One last thing… Pain management doctors do not know much about sleep. Sleep is critical for pain management. Psychologists trained in CBT can teach you how to re-establish your circadian rhythm/sleep schedule and help you deal with the pain better 🙂 A CBT psychologist can also help you to learn how to soothe autonomic dysfunction as well 🙂
All that adds up to CBT being an essential component for managing EDS and chronic pain 🙂
Here is more info about Cognitive Behavioral Therapy:
Manual for Pain Management with CBT – https://www.va.gov/PAINMANAGEMENT/docs/CBT-CP_Therapist_Manual.pdf
Cognitive Behavioral Therapy for Individuals with Chronic Pain – https://www.apa.org/pubs/journals/releases/amp-a0035747.pdf
Pilot Study on using CBT with EDS – https://www.ncbi.nlm.nih.gov/pubmed/23913726
All participants completed the intervention. We found significant changes in perceived performance of daily activities, significant increase of muscle strength and endurance and a significant reduction of kinesiophobia. There were smaller changes in self-perceived pain. The participants also reported increased participation in daily life.
These three steps weave together to form a foundation of strength and resiliency – giving you the confidence to move and live within your own body despite the pain 🙂 Start with this foundation, then LISTENING TO YOUR BODY, add in specifics required for your individual symptoms. Examples are: bracing, mobility aids (cane/rollator/walker), massage, aquatherapy, aromatherapy etc. WORKING WITH YOUR DOCTOR and listening to your body, you may need to discuss things like anti-inflammatories, immunosuppressants (if you have autoimmune disease co-existing with EDS), cromolyn sodium and allergy/GERD meds if you have mast cell, salt if you have POTS (as well as consider a recumbent bike!).
Another great way to manage your EDS and pain is actually through DIETARY CHANGES.
This is a HUGE controversy in the EDS support groups. Some patients claim no dietary changes help… but when I was so severely disconnected from my body as a way to push through working, dating, keeping up with pressures of society, I also believed dietary changes on little to no effect on my body. So, as I worked my way through reconnecting to my body and working to understand my conditions – I began to see the LINK BETWEEN INFLAMMATION AND DIET. Through this self-observation, I soon realized I had some allergies – and was able to get them confirmed with allergy patch testing. I also came to discover I am gluten-sensitive — something found in approximately 50% of EDS patients. Either way, what I once thought was a non-factor in my body, health, and life – FOOD – turns out to be a key component to managing my EDS (by managing inflammation!).
It all starts with learning your body, learning your conditions, and STAYING CONNECTED despite the pain TO MOVE FORWARD!
Other EDS PAIN RESOURCES: