20 Questions About How to Manage EDS:
1. Are you super flexible? There are two answers to that question. On the one hand, I am hypermobile, and I do have the Classic type of Ehlers-Danlos Syndrome (joint and skin), as do both of my children. On the other hand, my flexibility is not always obvious, and I did not grow up thinking I was very flexible. In fact, I was inflexible in many ways, and still am. I can’t touch my thumb to my forearm, I can’t do a split or put my leg over my head, and I have never dislocated any limbs (thank GOD!) My hamstrings, ankles, and neck have always been very stiff…that is until I started working with my Physical Therapist, releasing the fascia, and relaxing the trigger spots, and then HOLY MOLY! I got very flexible very quickly. Circ de Soleil still hasn’t tried to recruit me, but the point is, my muscle “inflexibility” was a direct result of how flexible my ligaments really were under the surface.
2. When did you get diagnosed? It took me a long time to get a proper diagnosis. I was misdiagnosed with Fibromyalgia for 30 years, and for 20 of those years, I kept collecting more diagnoses to explain all of my problems. This is a very common EDS story. I went to my first Geneticist and he told me that I was too inflexible to have EDS. My PT was very frustrated by his inability to recognize me for what I was, because it was my inflexibility that clued her in that I had connective tissue dysfunction. She sent him a follow up report of how little time it took for me to go from having a severe whiplash neck to being able to touch the back of my head to my back (don’t try this at home. It’s bad…very bad…,) but we never heard back from him. I was undeterred: I knew this was my problem (Never give up! Keep seeking second and third opinions!) I made an appointment for my children and I to be seen at the Harvey Institute of Human Genetics at GBMC, which in the year that I had to wait for my appointment, became the EDNF Research Center. Dr. Clair Francomano (Adult) and Dr. Antoine Kline (Pediatric) had no trouble diagnosing us. (The moral of the story? You know your body! Get that second opinion!) I was already learning how to manage EDS from my therapists, but getting the diagnosis was really important, and I am so glad that I never gave up.
3. What other symptoms/problems do you have? I have had migraines/cervicogenic headaches/spinal headaches for the past several years. I have been diagnosed with cervical instability, and was told I should have cervical fusion surgery (eeek!) I said nay for now. I tried prolotherapy, but that did not stop the pain. I recently did a rhizotomy from C3-C5, and that has definitely cut the number of severe headaches by a lot. I have scoliosis all down my spine, herniated discs in my lumbar spine with an annular tear. I also have slowed nerve conduction to my bladder and a cluster of symptoms which indicate “tethered cord syndrome” – something EDS people are prone to. I am in the process of figuring out what to do about that. I also have TMJ, a hyperflexible throat (it becomes stuck to the side sometimes – euch!) and the neck tension was so bad for so long, I developed nodes and had to do vocal PT for a year. I have terrible circulation and am always freezing. I have pale, buttery, translucent skin that bruises easily. I get “tissue paper” scars when I get stitches, and scratches last a really long time on our bodies (my kids especially.) I also need stitches for longer than normal people. I have irritable bowel, irritable bladder (interstitial cystitis), and my muscle fascia seems to get stuck very easily, especially in my abdomen around my organs. Actually my bladder was my worst problem for years, but it turns out that once my PTs fixed the trigger spots in my abdomen, and my pelvis stopped twisting and my uterus stopped sitting on top of it, my symptoms went away! So if you have IC, please go get evaluated by a PT. I had a terrible pain under my ribs for years, and it turns out that my diaphragm had gotten stuck to my liver and pancreas and abdominal muscles. Also, all of my ribs are stuck together so I have a hard time taking a deep breath! Of course, none of these problems were recognized by regular doctors. I had to wait my whole Life until I found people who could recognize hypermobility and who understand fascia. I also have orthostatic hypotension because my veins are very floppy, and I get dizzy when I stand up too quickly.
4. How do you find a good doctor? Every doctor I interview should know and have experience with this diagnosis (and I see each first appointment as an interview!) In my experience, the younger practitioners are coming out of school much better informed about EDS, so don’t assume just because a doctor is young that that they are inexperienced with this syndrome. If you have been told that you are hypermobile, and you have any of the symptoms that I have mentioned so far, please see a Geneticist! To date (March 2015) there is no blood test for anything other than the vascular form of EDS, and an official diagnosis can only be made by a Geneticist. If you have already been told by a Geneticist that you are “too inflexible” to have EDS, try again! Not all doctors understand that we are not rubbery all the time. The medical community learns more about this syndrome every year. Also, all of your doctors need to know this syndrome, because it affects all of your systems: we have Neurologists, GI doctors, Cardiologists, Urologists, Ophthalmologists, Podiatrists, Primary Care doctors, Chiropractors, Physical Therapists and Massage Therapists who all know how to manage EDS. We have had to educate our Dentist and Orthodontist, and remind them what our needs are, but good practitioners are willing to listen and learn.
5. What is the worst pain you deal with? Headaches. They. Are. The. WORST. Here is what I have learned about how to manage my and my children’s severe headaches (the addendum being that the prolotherapy was not enough to overcome my cervical instability, and I have since gotten the denervation procedure.)
6. What kind of therapy do you do? Of course I spent a few years in Physical therapy, which is where I first learned how to manage EDS, and I go back to see my PTs as I need to. I see a chiropractor, but he never adjusts my bones in the traditional sense, because that is bad for people with hypermobility. Rather, he works with my muscles and fascia through trigger point therapy, dry needling, and cupping. Our goal is to release the scarring in my fascia that is keeping my muscles weak so they can work optimally: then we go into the gym and we do exercises together using the Janda method. We found that my body was “freaking out” with just simple movement and, say, using 10 muscles when maybe only one or two was needed for an action. The Janda method is tricking my body into not over compensating, so that I can start to develop true stability, and get my muscles out of exhaustion mode.
7. What kind of bed do you sleep on? A Sleep Number, and I freakin’ LOVE it! (I’m a 35 – thanks for asking!) My husband likes his mattress much firmer than I do, and I need my firmness exactly as I need it, or I will crawl out of bed on my hands and knees the next morning. This bed saved our marriage, and not in a don’t come a knockin’ kind of way…
8. What kind of pillow do you have? The right pillow is essential for people with EDS, and especially those of us with cervical instability. I used to have a MediFlow Waterbase pillow. It’s a regular poly-fill pillow with a water balloon-thingy underneath that allows me to raise or lower the height of the pillow exactly as I need it to support the space under my neck (do not get the Tempurpedic one!) It’s very comfortable, but people should have their Physical Therapist help them find the right height and periodically let out the air and refill it. I could tell mine needed to be fixed when I woke up with a sore neck.
Lately this pillow stopped working for me, so I switched to My Pillow. The jury is still out.
9. What kind of supplements do you take to help your joints? I am crap at taking supplements, and Science hasn’t yet told me that taking supplements will increase my collagen or improve my joint health. I have a heightened gag reflex since I’ve been on Topamax (migraine prevention medication), so if I don’t have to take a pill, I don’t. I have been somewhat successful with taking liquid Vitamin D (it’s well documented that this benefits us in many ways) and I have trusted my current chiropractor that taking a powder form of Vitamin C will help the work that we are doing with my muscles (and it tastes like Tang, so why not?) I am also sporadically good at taking probiotics, just so I can call them “gut bugs” and gross out my kids. ProB’s are really good for us, so I try to stay compliant (key word TRY.)
10. What is your go-to pain remedy? Right now it’s Winter, and I am usually in pain because I am chilled to the bone (I have about as much circulation as an extra on The Walking Dead.) Those of you with horrible circulation know it’s PAINFUL! Whether I have deep bone ache, muscle spasms or the start of a headache, a quick hot shower usually resets my buttons. If I need to take it to the next level, I take a hot epsom salt bath or foot soak (the magnesium in the salts is very good for our muscles and reduces pain.) But if I have sprained a joint or have back or neck pain, I use ICE for 10 minutes (not heat!) Ice is a fabulous natural anti-inflammatory. I even have a cryo-helmet to chill out my headaches. Kinesio tape is a miraculous way to calm muscle pain. Seriously, we have it in bulk…I also own my own TENS unit, and use it on really bad days. As you can see, my toolbox is chock full of things that are not medications.
11. Do you take pain medication? I hate taking my pain medication. It knocks me out. My husband and I joke that I “roofie” myself when I take it, because I am so out-of-it that night and the whole next day. I take preventive headache medication and rescue medication specifically for breakthrough headaches, because I have to function. But for any other pain, I try to use other methods first. My kids can only use Motrin for their bad headaches, and they have the same body pain that I do – they can’t see me popping pills all of the time! I need to be creative and show them a realistic way to manage their condition. Besides, most of the other methods work just as well, if not better than medicine. Addendum: Since writing this post, I have started using medical cannabis at night, and it has been a lifesaver.
12. What kind of exercise do you do? If you have seen my vlog, you know how much I love my foam roller. I lie on it just about every evening for at least 10-20 minutes. If I have back/neck pain, I do the foam roller. Pop a rib? Foam roller! Not only does it realign my spine, that helps me get better nerve conduction to my muscles and access my strength. Before I started using the roller, I thought I was really weak – it turns out all of the herniations in my spine just didn’t allow me to access the strength that is there. I find that if I do some of my Pilates exercises on my foam roller, I can do them better. Even when you are just starting out, before you have progressed to exercises, just balancing on the roller builds your core muscles.
13. Are there any exercises that you avoid? I used to do Yoga (I was really good at it!) But because of how unstable my spine and neck are, I stick to Pilates now. I am too unstable to protect my spine during a Yoga class, and I do not need to develop flexibility. However, I have carried all of the lessons of Yoga with me into my daily Life. There are certain poses that are very beneficial for everyone, like Tadasana (Mountain Pose.) One of the worst things an EDS person can do is stand on one foot and jut their hip out, effectively “hanging on their joints.” Jen describes why this is so bad in our posture vlog. Mountain pose teaches me how to distribute my weight evenly, use my core strength to stand tall, and not put extra pressure on any one part of my joints. I also avoid weight lifting, because the weight just pulls my joints out of place instead of building any strength in that limb. It is much more effective for me to use isometrics (my own body weight) or therapy bands if I need to increase the resistance. And…no running. If you ever see me running, start running too, because someone is chasing me with a large knife.
14. What kind of adaptive equipment do you use? Posture is everything to me, since poor posture has caused so much of my chronic pain, so I use a lot of lumbar support cushions and pillows on my chairs. I have links to those products in my post “Stand Up Straight!” I also have adjusted my car seat to be ergonomic, and I teach people how to do the same. My kids and I wear wrist braces every night to sleep to prevent hyper-flexion, and I use carpel tunnel wrist guards that I bought at my local pharmacy. I also stopped carrying a purse, because it was putting too much pressure on my neck and shoulder, and now I rock the hip satchel…OK, it’s a fanny pack. But it’s still VERY trendy and cool. I’m a early adopter, and I have one hand to hold my coffee, and one hand to do whatever I want! Freedom!!! I also have a large bag that I use to go to the pool or the library with wheels on it. We have a whole collection of braces that we use temporarily for injuries, but every time we brace, it weakens our muscles, so we use them sparingly and for short periods of time. Really, they are just to prevent us from limping and putting more pressure on other parts of our body, so we can maintain normal movement. I only wear my neck brace when I literally can’t hold my head up, but it doesn’t make my muscles any stronger, or address the tension that is keeping my muscles stuck, and so it’s not fixing my underlying problem.
15. What is one thing you did that made the biggest difference? I started wearing orthotics and good shoes. People don’t realize how much their feet are the foundation of their health. As EDSers, we usually have very unstable ankle joints, and I was always falling on ice or tripping. I have high arches, and my feet were pronating (sagging in.) However, I was wearing flip flops and UGGS all the time! These are the worst shoes anyone can wear – they have no support, and my feet were sliding all around and subluxing. Even people who do not have EDS are developing ankle, knee, hip and back problems from bad shoes. I ranted about it here and showed people how they can still be fashionable and responsible. If you want to learn how to manage EDS, start with your feet.
16. How do you eat? I try to eat as cleanly as I can, but the medicine I’m on takes my appetite away, and I do need the calories. I spent all of last year eating a very strict Primal diet because of a sugar intolerance that my chiropractor diagnosed with some lab work. I ate mainly protein, veggies, brown/basmati rice, blue/yellow corn, and dairy. Almost no fruit, no sweetener except stevia. It was great, because I had a lot of inflammation in my body that cleared up almost immediately. However, it was hard for me to eat enough that way, and I was too thin. I have relaxed a bit this year, and will eat wheat/sugars if I feel like it. Ideally, I follow what my body tells me to eat, and I tend to follow a seasonal cycle. I don’t want tomatoes or strawberries in the winter. I don’t want mashed potatoes in the summer. I crave apples in the Fall, and come Spring, my tastes change again (whiskey in the Winter, wine in the Spring.) With any chronic condition, it is very important that people limit the amount of chemicals and “noise” coming into their body. For most of us, healthy living is some of the only tools we had before we had answers, and we do a lot of good work just cleaning our bodies up and paying attention to what it’s telling us.
17. Pet Peeve? Technology. I see people looking down at their phones, tablets and laptops. It is a miraculous invention, but not only can it interrupt human relationships if we let it, it is killing our necks! When you look down at your device, you put about 60 pounds of pressure on your head! If you have to look at it, put it at eye-level. Over time, the constant looking down, even slightly looking down at the monitor of a laptop, has been straightening our cervical spines, leading to “straight neck syndrome” or loss of lordosis, from our forward head posture. One does not need to be hypermobile to develop this form of scoliosis, and it leads to chronic neck tension, pain, weakness, and headaches. This is all preventable suffering.
18. Guilty pleasure? Coffee and Alcohol. Minus the guilt.
19. How do you keep going on bad days? Humor. I use humor like a drug. I listen to Comedy Central Radio in my car, and I also have comedy radio stations set in my Pandora app. I am friends with a lot of humor bloggers, and I read their posts every day. Even when I have terrible pain, I can’t feel it when I am laughing.
20. Advice for people? Stay informed. Stay connected. Stay positive. Oh, and sign up for email notification for my blog if you haven’t done that already 😉
Disclaimer: This article was written based on my experience and the wisdom of my incredible care team. Everyone who has EDS looks different, and only you know yourself the best. If you recognize some of your story in mine, I hope it inspires you to know that you are not alone, and we can all learn how to manage EDS better by sharing our experiences. Thank you for reading and being a part of my amazing community.
(Please note, I am not a medical professional. I do not diagnose or treat problems. If you have any serious medical concerns, seek the attention of a professional.)