I have Ehlers Danlos Syndrome (EDS) hypermobility type and hike.
It sounds like the start of a support group, and maybe it is. For those afflicted with EDS, frequent joint dislocations/subluxations, chronic pain, and fatigue but who want to stay active on the trails like I do, then support is exactly what we need. I’m talking stability belts, braces, tapes, and hiking poles in this case. 🙂 However, I’m also here for you if you seek emotional support as well. ❤ I completely understand loving an activity and struggling to continue with it, or having to give it up entirely—yoga and dancing, for me. 😥 Kayaking and cycling are questionable at the moment. However, to keep me hiking, I’ve spent the last year working with the best physical therapist I’ve ever had (and I’ve had many, for different joints, over the last 25 years). Dave Miers is the only board certified orthopedic and fellow trained in manual physical therapy in Cincinnati, Ohio, and I owe him my life (on the trails). https://www.mierspt.com/
About twenty-plus years ago, I fell in love with mountain hiking. I did my first summit hike in the Uintas Mountains and have since blazed every day-hike trail possible in the Wasatch Mountains in Utah. I’ve hiked stunning canyonlands in Utah as well: Bryce Canyon, Snow Canyon, Zion National Park. I’ve booted many miles in reserves, state parks, and national parks in many other states too: Alaska, Hawaii, Colorado, California, Montana, Nevada, Virginia, West Virginia, North and South Carolina, Florida, Georgia, Tennessee, Kentucky, Ohio, New York, and lately Pennsylvania. I’ve even put in miles in Grand Cayman, France, Italy, and England. If I had my way, I’d hike the entire planet.
But, a little over a year ago, I couldn’t even walk a quarter of a mile.
Why? This requires a little background information…
I have problems with most of my joints; it’s probably easier if I list the unaffected ones: ankles and toes. Although, my left foot is perpetually swollen because of tissue fragility and leaking cells. Anyway, this post is about the powerhouse of walking: the pelvis and sacroiliac joint. You thought I would say legs, didn’t you? 😛 Guess what they’re connected to? 😉
So…I’ve had “hip” pain since I was 32 years old (I’ll turn 51 this April 2019), and seen various orthopedics and physical therapists to help me to no avail. I’d even had surgery for FAI impingement in 2014 and steroid injections. As it turns out, it’s not quite my hip joint–it’s my entire pelvis, which one physical therapist who specializes with EDS patients called “wibbly wobbly.” She actually “fired” me from her care because my pelvis was too hypermobile! Yes, my pelvis is very hypermobile, the most hypermobile of any of Dave’s EDSers. The root of my problem is “loosey-goosey” (doctor’s phrase, not mine. I’d say “lax”) ligaments and sacroiliac (SI) joint dysfunction.
The strongest ligament in the body on me is too stretched, too loose, and cannot hold the joints in place. Quite often I suffer subluxations, or partial dislocations, of my sacrum and/or my ilium. If they go, then the lumbar spine tends to follow. Basically I’m Humpty Dumpty, and my physical therapist has to put me back together again, and again, and again. After adjustments, he guides me through different strengthening and stabilizing exercises, and amps the challenge as I master some. He’s taught me how to properly walk, sit, stand, enter/exit a vehicle, and climb stairs–yeah I did all those incorrectly because chronic pain has a way of rewiring your mechanics and disconnecting the brain. A lot of the therapy is retraining your brain with the body, and I have gotten stronger and gained more of my function and ability back, at least when it concerns walking/hiking.
Although my sacrum pops constantly out of place, typically the left side shifting downward and twisting inward, my ilium stays more often than not in its neutral, normal position. That said, two months ago I partially dislocated my ilium while rolling over in bed and reaching down to turn off my alarm. Yeah, I hurt myself sleeping. If you have EDS, you probably have as well. I did learn self-correcting techniques for my sacrum and my ilium, and I can say it’s easier to reset your ilium than your sacrum. I’ve only ever been successful once. At least intentionally, I’ve “accidentally” self-corrected randomly simply by being and moving around with enough force to correct it. Or coughing. I seemed to have popped my sacrum today with a cough–though, in or out, only an x-ray or my physical therapist would know.
If you have SI joint dysfunction, you might be interested in these videos for self-correcting the sacrum as suggested by Dave Miers:
Now, for the gist of the matter: Hiking Tips for the Hypermobile Hiker!
1. Consult your doctor and/or physical therapist about the type and intensity of activity that suits your ability. As I’ve mentioned, I’ve had to quit certain activities and for what remains I’ve had to accept limitations and modifications. I can hike within reason but can no longer do rock scrambles, or very strenuous or very long hikes. I tend to hike the easy-to-moderate trails now. Even though my physical condition and abilities have declined, I am better off than many with EDS because I maintained a very active lifestyle and kept as fit as possible, considering. I might be the most hypermobile EDSer under Dave Mier’s care, but I’m not in the worst shape. I’m a proponent of “move it or lose it” despite doctor’s advise to stop, despite the fact one told me I was “very brave” to do what I do. As I tell my mom who worries, I’m going to hurt myself “being”; I might as well hurt myself having fun. 🙂 Your opinion may differ. 🙂 But attitude is part of the battle in managing EDS. Pain is much harder to cope with if you’re also depressed. ❤ Hiking is my natural anti-depressant.
A peer reviewed blog on exercise and movement for adults with EDS written by Jason Parry has a lot of great sound advice: https://www.ehlers-danlos.org/information/exercise-and-movement-for-adults-with-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/
Not only consult the experts about what to do, but how you should do it. Dave designed my program centered on my goal to hike. His individualized care has made a world of difference. I can’t give you medical advice on what exercises you should do and leave those tips to your care provider. I highly recommend finding a manual physical therapist fellow–trust me, I’ve been seeing physical therapists since I was 25 years old, and I’ve failed physical therapy every time until I met Dave Miers.
2. Buy the best pair of sturdy boots you can afford. You’ll need the best footing possible on uneven ground, slippery rocks, snow, muck, when you ascend and descend, if you can rock scramble. Sole tread and grip matter too. If you have wobbly ankles like I do, then you’ll need good ankle support. You’ll need good arch support. Ultimately, the boots will have to be comfortable. REI has a rock prop for you to test boots. Or hiking shoes, if you decide you don’t need ankle support.
My new spring, summer, and fall Oboz boots (https://www.rei.com/b/oboz), and my winter Columbia Arctic omni-heat and omni-grip boots (https://www.columbia.com/technology-omnigrip/). Unfortunately the Arctic Trip boots are last season and probably unavailable. Wearing those boots keeps my feet warm, and I rarely have warm feet in the winter!
3. Get some trekking poles with a comfortable grip. I couldn’t believe the difference hiking with and without poles, and wished I’d been using them the entire time. Using the poles takes the pressure off my knees. Usually after hiking my knees would swell and hurt. Now I can hike without knee pain! Or a knee brace or tape–neither of those helped me because my knee caps move way too much. As an aside, one time during physical therapy, I mentioned my knee kept moving while I did the exercise. Dave tried to hold it in place while I performed the motion. My knee still moved! He gave up, knowing it was a lost battle. Wiggly knee wins every time. So, who wants to buy my expensive knee brace that can’t hold my knee? Only used once. 🙂
4. Wear your joint stabilizing belt, braces, or tape. I gave up the knee brace, but for my SI joint dysfunction, I wear a sacroiliac belt. Although the belt doesn’t hold my wigglier-than-my-knee sacrum in place, it definitely keeps my ilium locked in a normal position when I hike (not so much when I kayak). The one time I forgot to wear my belt on a short forest hike I ended up with a twisted torqued pelvis. Furthermore, the SI belt may not protect you if you fall.
Taping or wearing shoulder braces will also help your SI joint–subluxation of the shoulders will cause subluxation of the cervical spine, which will cause subluxation of the SI joints. Shoulder bones connected to the hip bone. 😛 I can’t tape myself and haven’t yet decided on which brace to buy (too many options). If you have a favorite, please let me know in the comments. 🙂 I still think a biomedical engineer needs to create synthetic spider webbing for us EDSers. 🙂
5. Get professionally fitted for a backpack. You’ll regret hefting the weight if you carry the wrong backpack for your body. The unbalanced weight will strain your neck, shoulders, back, hips, and knees, and you’ll ache at the very least. Matter-of-fact, my physical therapist advised wearing a backpack instead of carrying or pulling luggage. I wear a small backpack instead of carrying a purse to balance the weight, and of course I have an XS 40L backpack for my back-country trips, but I only carry 20-25 pounds (ultralight backpacking!). https://www.ems.com/the-north-face-womens-terra-40-backpack/1304688.html
Head to your nearest REI store for one of their staff to assist you. Or, if you don’t have a nearby REI store, then they’ve produced a nifty how-to: https://www.rei.com/learn/expert-advice/backpacks-adjusting-fit.html
6. Know your limitations. Hike only as far or as long or at the difficulty level your body can handle. Don’t hike twelve miles as soon as you get the green light from your physical therapist and then complain about hurting. Not saying this happened to me, but it happened to me. 🙂 I tend to overdo it, but on long backpacking weekends, I now only hike to the point I feel the first sting of pain and stop. I no longer push myself through the pain, which is what I’ve done all my life until the last year. Understand your thresholds, whether it’s distance, exertion, temperature, fatigue, pain. These may help you avoid injury or the inflammatory flares.
7. Prepare to manage the inflammatory flares. Even on long backpacking trips, I bring what’s necessary to decrease inflammation. Inflammation is a state of being when you have EDS, and working joints and muscles will exacerbate inflammation. I rely upon a variety of measures: (1) grape seed extract and turmeric extract; (2) portable TENS; (3) Max-Freeze (I prefer it over Biofreeze and Icy Hot); (4) my icy gel pack or ice; and (5) rest. ACE bandages and shoulder slings come in handy too. I also take Indomethacin, a prescription non-steroidal anti-inflammatory, daily because I have hemicrania continua, a rare chronic headache condition. I’m not sure if Indomethacin helps my joint pain because I always have joint pain, but maybe the pain would be worse if I didn’t.
What tried-and-true at-home self-care methods do you use?? 🙂
8. Adopt an anti-inflammatory diet. Certain foods produce a pro- and anti-inflammatory response in your body. You’ll find lots of information on the internet about an anti-inflammatory diet, which foods to include, which to exclude.
As for me, I opted for a vegetarian diet 18 years ago, but, because of high insulin and low sugar health problems, I needed to further restrict myself. I only consume 50-60 grams of carbohydrates a day and eliminated gluten. As a result, I feel better, lost 16 pounds of water weight caused by high insulin, and experience the benefit of pain reduction, especially for my headaches. I discovered gluten triggers the worst of my head pain. I will admit my diet presents a challenge at times and demands careful planning to meet my nutritional and appetite needs. The benefits far-outweigh the cost of effort though.
In my camper cooking blog (https://wordpress.com/block-editor/post/thewanderfullife.home.blog/158), I mention I’m a fan of organic foods. I’m also a fan of non-GMO foods (because of the lack of transparency–what’s in my food? An additive that’s pro-inflammatory? A chemical that artificially raises insulin?) and sustainably produced foods, such as eggs and dairy from pasture-raised animals, or palm oil, which if not sustainably produced contributes to deforestation and the endangerment of tigers, elephants, rhinos, and orangutans. 😦
If you watch Forks Over Knives (Netflix), you’ll learn a lot about the food industry and human, animal, and environmental welfare. Adopting a whole food, plant-based diet could reduce disease risk and boost your health and body’s maintenance and function.
An EDS expert states the whole food diet, as well a paleo, raw, Mediterranean, and vegetarian/vegan follow the approach she recommends for those with EDS. Many of us have digestive issues, such as gastroparesis, or food sensitivites because of mast cell activation syndrome (MCAS). We need the most appropriate fuel for our bodies. I’ve provided the link to that information: https://issuu.com/markmartino8/docs/eds_nutrition_and_supplements_heidi
9. Repair and build muscles with a protein bar or drink. While whole foods contain the amino acids your body needs to repair or build muscle, I feel my muscles need the extra boost. Overstretched, weakened ligaments and tendons cannot hold the joints as intended, and cause joint instability. The muscles, thereby, double duty as muscles and connective tissue, holding the joints and moving the joints. Fatigue and spasms ensue.
As you age, you tend to lose muscle, but as someone with EDS, you need more muscle. It feels like an uphill battle, and sometimes I think all I can do is maintain my muscle rather than increase muscle mass. I tell my children–my daughter confirmed with EDS, my son suspected–to get strong and then get stronger. That’s the legacy I leave for the genetic lottery we’ve won.
My favorite brands of protein powder are Garden of Life and Sun Warrior. They both have BCAA’s the building blocks for muscles. Since I have a low-carb diet and need to avoid maltodextrin/dextrin (raises insulin), I have two choices for bars: Quest Bars and Power Crunch’s Snapsticks. Also, I ❤ the Koia convenient ready-made protein drinks. Other options to increase protein and omega-3 fatty acids are flaxseeds, chia seeds, and walnuts. The problem with those is the volume you need to eat. 🙂
10. Use foam rollers to stretch and calm your muscle tightness. My most important rule: NO STRETCHING! Stretching only further weakens already over-stretched ligaments, and you’re more likely to hyperextend a hyperflexible and hypermobile joint. We all know what that means: PAIN and DAMAGE to the joint.
The first time I used a foam roller on my quads I wanted to cry. Yet, over time it does work. I have a large roller and small roller. You’ll find a myriad of roller types and size. For some spots, you can even use a tennis or rubber ball.
If you can afford the luxury, pay for a medical massage. They hurt more than the roller, but…:)
11. Enjoy life and this world. We’re not long in it, and you might as well go into the grave with a defective, broken well-used body than a hardly used one. You’re going to hurt yourself no matter what you do.
You might as well enjoy the sights and sounds, even if the sounds are your joints popping.
Some trails and scenic lookouts are wheelchair- or walker-accessible. Don’t let disability actually disable you from experiencing wandering into the wonder. ❤ I’m hiking with my legs until I can’t use my legs, and then I’m going to hike with my arms, or make Shane push me. 🙂 http://wheelchairwandering.blogspot.com/2017/05/accessible-trails.html
I’m going to be in pain, whether I sit, stand, walk, talk, eat, or breathe. At least when I’m hiking I have a very good and acceptable reason for the pain. 🙂