You Are Not Alone
You or a family member are newly diagnosed with Ehlers-Danlos Syndrome (EDS), or you suspect you have it based on the following criteria. You’re in pain. You’re overwhelmed. Likely, you’ve been trying to find answers for months or even years. You’ve probably “tried everything,” to feel better. You might have even developed a reputation with friends and family as “always having something wrong (eyeroll),” or worse, being labeled as whiny, lazy, or a hypochondriac.
Sound familiar? I know all of this, because you are not alone: that’s the first thing that I want to tell you. Your story is now connected with hundreds of thousands of people very much like you. I speak with EDS people all the time, and while there are many differences in our health presentation, there are some universal truths on the journey of being properly diagnosed and cared for. I started this blog, because it took me over 30 years to be correctly diagnosed. My goal is to help people get to their diagnosis faster, and learn how to manage their care based on the amazing advice of my own team of experts.
If you are still searching for the right diagnosis, here are some of the symptoms my care team looks for when spotting people who might have EDS (keep in mind, you may have some, but not all of the problems on this list):
- Joint hypermobility OR abnormal joint rigidity* (whiplash, loss of range of motion of limbs, inability to bend forward and touch knees, feet, etc.)
- Poor posture/scoliosis/kyphosis
- Sagging ankles, flat feet
- Knees that turn inward
- Chronic muscle pain
- High/narrow palate, crowded teeth, need for orthodontia
- Chronic headaches/migraines
- Soft skin that bruises/scars easily, unexplained bruising
- Irritable bowel: diarrhea or constipation
- Irritable bladder, urgency, frequency, incontinence
- Allergies/hives/sensitivities to food and environment (eg seasonal asthma or reactive airway)
- Occasional chest pain (stabbing, like a “heart attack” feeling), chest tightness, and or shortness of breath
- Brain fog, poor memory
- Insomnia, fatigue
- Heart palpitations, dizziness when standing, fainting
- Cold intolerance, poor circulation
* Please note that many people are not diagnosed with EDS right away, because their underlying ligament laxity creates muscle rigidity as a protective mechanism. Therefore, instead of appearing hypermobile, people present as stiff and inflexible until they begin undergoing Physical Therapy to address their muscle trigger spots. This fact is not well represented in the medical literature, and is not yet well understood by many doctors, or even some specialists in the EDS community. Le sigh.
You may have some or all of these symptoms. You have probably been living in chronic pain for a very long time, and have fallen through everyone’s cracks. Doctors might have been telling you “nothing is wrong with you” for years, even though you feel like monkey poo all of the time. I know how awful and overwhelming this is. I have lived it. But believe me, it gets better once you know and do a few key things.
What to Do
- Find a mentor: (Hi!) Yes, I am a good one, because I am years ahead of where you are. But, I assure you, I am not the only one out there, and my way is not the only way. There are a number of EDS support groups around the world, and there may be a local group you can attend with your family. The Ehlers-Danlos Society holds a Global Learning Conference every summer. (So far it has been held in Baltimore the past two summers…location for 2017 TBA.) Networking online and IRL with other patients is a great way to learn new tricks and commiserate with like-minded people.
This is also a great place to disclaim that I am not a medical professional. However, I have assembled a Dream Team of professionals right here in the heart of EDS country (many of the experts in this field practice in my area), where I am getting the best information. I have lived and tried everything that I pass on to you, and I run it by my band of professionals before I do. And now YOU need to become the expert of your own care, so please use me or others as merely consultants on your journey. If you want to know how I manage my care, check out this blog post. In it, I link many of the posts I have written about having EDS and caring for my two children who also have it.
- Build your Dream Team: If you don’t yet have a formal diagnosis, you will need one eventually. However, (and this is very important) your EDS diagnosis does not define you, nor does it dramatically impact your day-to-day care. I say this for all of the people who are on a 1-2 year wait list to see a Geneticist and believe that they cannot get on a treatment plan until that time comes. This is bullshit. You are in control of your health, and there are so many things that you can do to take care of yourself while you wait for that consultation. My Geneticist is a wonderful doctor, has taught me some great things, and has sent me to some very good specialists for my issues.
However, the people I most rely for my overall health are people I have found on my own: my physical therapists, my chiropractor (NOTE: please read this if you plan to use a chiropractor) and all of the other specialists that help me with specific problems in body systems (like GI, Neurology, etc.) When I am looking for a doctor/therapist, I call the practice to ask who has had experience with EDS. Chances are it is one of the younger practitioners in the office (Medical schools have been better about teaching EDS to students for the past 15 or so years, so practitioner knowledge has been increasing in the newer doctors.) If no one has heard of it, I go somewhere else. If you currently have a doctor you love who is willing to learn and just needs good information, The Ehlers-Danlos Society has great articles you can print out and share.
Caution: There are many medical professionals out there who claim to have knowledge about how to diagnose and manage EDS. This does not mean that they do. Each discipline is going to have their own take on this highly complicated and poorly understood syndrome. As it is, the diagnostic criteria has yet to even be agreed upon by the experts in the Ehlers-Danlos Society to date. There may be individuals who have taken it upon themselves to learn about it, and who diagnose and manage it very well. For example, two of the most well-known experts in the field are a Rheumatologist and an Internist: Dr. Rodney Graham and Dr. Alan Pocinki.
That said, I cannot offer a blanket recommendation for you to seek a diagnosis from anyone other than a Geneticist. I have heard too many stories about people being misdiagnosed as having “hypermobility with fibromyalgia,” from Rheumatologists (which is NOT a thing!), or being told by Pediatricians or Physiatrists that they don’t have EDS (when they totally effing do.) Until we get this diagnosis thing locked down, and can spread the information out into the medical world, stick with Geneticists, and realize that, in fact, not every Geneticist has what it takes. (Remember that thing that I said about some hypermobile people being very stiff, and that this isn’t well understood yet? Guess who got turned away by her first Geneticist…)
- Fill your toolbox: There are many products that can help you reduce your physical pain, get strong safely, and move about when you are injured. For a list of the ones I recommend, click here.
- Reduce your pain: Consider what you are doing to manage your pain in the short and long term. Things I recommend are:
- Regular trigger spot therapy from a qualified physical therapist, massage therapist, or chiropractor who focuses on soft tissue work and understands how to work with hypermobile people (This is very important! These people can hurt you. Call the practice, ask if they have experience with hypermobility, and assess if they are coachable.)
- Kinesio tape – Order it in bulk. It is that important. If you follow me on Facebook, I have videos about how to put it on yourself.
- TENS unit – This device delivers electrode muscle stimulation that is excellent, natural pain relief.
- Skin analgesics – Biofreeze, essential oil products, lidocaine patches (must get a prescription)
- Ice and heat: Ice is your new best friend. We need to avoid over heating, as it causes muscle and joint laxity, as well as contribute to inflammation when you have an “itis” (tendonitis, bursitis, etc.) However, hot showers and epsom salt baths/foot soaks are excellent for headaches, sore muscles, and stiffness from the eventual arthritis that we develop. I have horrible circulation, and cold is physically painful to me, so I heat up my hot sock (a knee sock filled with dry rice: 2 min in the microwave) and put it on my belly while I am icing another part of my body. Check out this excellent post for a summary of when to use each.
- Laughter (not kidding): Follow me on Facebook at facebook.com/FlexibleFamily. You’ll see that 60% of what I share is humor for a reason. I fill my days with comedy and things that lift me up, because it gives me the energy that I need to battle pain. It really is some of the best medicine.
- Medical marijuana – As the states pass their laws, the data is coming in very strong for marijuana’s ability to help control EDS pain. One does not have to smoke it – it can be consumed as an oil, or rubbed on the skin topically, which makes it a viable option for children who are suffering.
Things to use with caution:
- Muscle relaxants (like Flexeril, Valium, Botox). Remember that your muscles are the only thing holding you up without the aid of strong tendons and ligaments. If you take that away by using a muscle relaxant, you increase your risk for subluxations, or keep yourself in the pain cycle that you are trying to treat. I personally do NOT use Botox for my headache pain. Even though people really enjoy the short-term pain relief, they are not being served in the long-term by loosening their neck muscles (Most of our headaches come from weak, unstable necks that fall forward. Botox makes that worse.) I only use Flexeril when I am lying down in bed for the night, and I have muscle spasms that are causing subluxations.
Anti-inflammatories (Advil, Motrin, etc.): In the short-term they can cause rebound headaches, and in the long-term, they can cause GI distress. If chronic headaches are a problem for you, please seek the care of a Neurologist (who knows EDS) and a physucal therapist. My Neurologist is awesome, because instead of offering me Botox, she introduced me to dry needling, which has changed my life.
- Opioids: in the short term, they may or may not address the root cause of your pain, and in the long term, they will contribute significantly to your constipation and GI problems, as well as run the risk of being highly addictive.
(back to the Hot Tips!)
5. Deal with your gut: It is likely that you are aware (or possibly yet unaware) that you have chronic constipation (most of us do.) Gastroparesis is a common symptom of EDS, because our guts are lax and stretchy, and do not push food along like they are supposed to. Most GI doctors tell normal people that they need a stool softener to treat chronic constipation (like Miralax) and to avoid laxatives (like Dulcolax) because they are “bad for us.” I am here to tell you that EDS people need BOTH. While stool softeners are helpful at drawing water into your bowel, you need to do more than just turn your poo into applesauce to manage this issue. The fact is, you have no oomph in your tubing to get everything moving along, which is why you are constipated! It just sits there, leaching fluid, and becoming dehydrated.
The worry that you will become “dependent” on laxatives is about as productive as worrying that a diabetic will become dependent on insulin: you need them, and you will never not need them. Please seek the care of a GI specialist, and be prepared to educate them about this important distinction between you and their other patients. While I cannot prescribe any medication to you, I can tell you that my kids and I take daily Miralax, and a weekly dose of laxative to rooter out the pipes. Just sayin’…I should also point out that I was a GI Nurse for 10 years, and It took me YEARS AND YEARS to finally recognize and admit that the three of us have chronic constipation. There. I have confessed.
6. Get stronger: Now that we have you feeling better, and you have people who are pulling the scar tissue out of your body, you are about to get MUCH more hypermobile than you were before, so it is important that you begin a proper PT regimen right away. If you have been doing aggressive exercise like long distance running, weight lifting, TRX, CrossFit, Bikrum Yoga…please stop. I don’t care if “people say” these things are good for us. You are not like other people. Your exercise regimen has to honor the instability of your joints, and the above activities do not.
Eventually you may get strong enough to add some of these things back into your life with modifications, but for the newly diagnosed hypermobile person, it is best to relearn how to move in a safe way, after you have addressed your body’s injury and weakness. The right kind of physical therapy program should focus on identifying the imbalances in your muscles, as well as trigger spots, which both prevent you from being able to build stability in your muscles and joints. Every session should start with soft tissue work first to “warm you up” and align your body, and only then can you effectively do your exercises.
The rules of EDS PT are are LESS IS MORE and GO LOW AND SLOW. Meaning, it is better for you to do five quality movements with pristine form than 30 half-assed ones. Also, we do not need to lift weights! The weight of our own body is usually enough, or therapy bands should be used starting at lowest levels. Any new exercise should be introduced by doing minimal amounts of repetitions (if a normal person does three sets of 10, you do one, etc.) and then you take a day of rest in between to see how you feel. Keep in mind, that because our body goes in and out of alignment from day to day, week to week, so too will you go in and out of strength and ability. Your therapist needs to understand that and roll with it.
If you are craving a group class, and you think that I can pull Yoga out of your cold, dead hands, might I suggest Pilates instead? Pilates is an amazing discipline for EDS people: it strengthens your core while protecting your back and neck, can reduce POTS symptoms, reverse spine curvatures, basically, it can make you way less EDS-y.
This is a process. Please take it one step at a time. While I have many tips and suggestions, I did not come to them all at once, nor do I tackle all of my problems at the same time. Prioritize, ask others for help. Be willing to make change, but not too many at once. Allow your children to get used to the “new normal” before you move on to the next one. I strongly recommend that you enroll in individual and family counseling. I did not make that enough of a priority early on, as I ran around with my hair on fire in the crisis zone for five years. Now, we are all in therapy, and I am so very glad that my kids have another adult they can turn to for processing their feelings about living this crazy/wonderful/painful life that we do.
I’m sure I have missed something. Please post your questions or sage advice in the comments below!