Living with EDS

A slice of daily life with Ehlers-Danlos Syndrome, Hypermobile Type.

 

I was diagnosed with Hypermobile EDS at the age of 37 after seven long years of fighting a monster roller coaster of physical ailments. You can read about the tests I underwent here, and insights I've developed in learning to cope and adjust to EDS here. Read about what hypermobile EDS is here, or for a brief description, the bottom of this page. Read a brief description of Dysautonomia at the bottom of this page. A common EDS "trifecta" includes Mast Cell Activation Syndrome in many different forms. There is a brief synopsis of that at the bottom of this page, as well.

I've put myself through many tests and treatments, before and after diagnosis, to see what will improve my seemingly endless list of symptoms. So far, this is what I've come up with to get through each day. I am not a medical professional, I only hope to enlighten others with my experiences.

• No daily dose of pain medication- I learned at the PRC in Rochester, MN (Mayo Clinic) that pain meds are created for acute pain, and meant to be taken only while that pain occurs. Taken daily for chronic pain, it can cause a vicious cycle that is hard to break and exacerbates symptoms over time. I proved that theory by discontinuing daily Tramadol use after a year. I feel much better, overall, without it. It was no longer lowering pain levels, anyway. It can be helpful for breakthrough pain treatment- but I haven't used it at all in many years. Every case is different- discuss options with your doctor. CBD in doses of 50 mg or higher can work well for breakthrough pain. It should be noted that I know several people who do use opioids as part of their daily pain treatment, which is acceptable for their needs. For me, it exacerbates other GI symptoms and muscular issues, so it's just been less evasive for me to work through it. Be sure to have your doctor help you with whichever course of treatment is needed for your individual case.

• Pain, Pain go away- I take supplements daily to help ease chronic muscle spasm and joint pain. Glucosamine & Chondroitin w/ MSM, potassium, calcium, and magnesium make a noticeable, positive difference. If a muscle is tweaked, I usually try a pain cream or a TENS unit before adding aspirin or ibuprofen to my regimen since my GI system can't tolerate them. Try to find the resolve within yourself to keep your focus on more positive things since the pain may always linger. Pain is meant to be a siren to warn us of issues in our bodies. When it's chronic its' signal is inappropriate and probably misguided, overly active signals in the brain. Techniques I learned at the PRC are lifestyle changes that stick and pay off daily, such as Distraction, Cognitive Behavioral Therapy, and Mind Over Matter. The more tools you compile in your chronic pain toolbox, the more often you'll be up for the task at hand. Occupational therapy can teach you to use your body in better ways, as well. 

• Diet infused with several diets- A perfect example of parts of therapies that work differently in each patient, I've found through trial and error what sort-of manages my insides. In the GI system alone, I suffer from acid reflux, hiatal hernia, gastritis, duodenitis, gastroparesis, pelvic floor dysfunction, and slow colon transit. I have permeability  and absorption issues due to EDS, as well. I've developed food sensitivities since youth and I have Mast Cell Activation Disorder (MCAD) which is a common comorbidity with EDS. To try to manage all of these symptoms, I'm gluten free and low lactose, and follow Low-Histamine diet guidelines, recommended by Dr. Francomano. I'm nauseous upon eating most foods in the morning, so I have a pea protein shake to get the day going. I take Famotidine (Pepcid), Loratidine (Claritin) and Gastro Chrom (cromolyn sodium) throughout the day to help keep Mast Cells at bay. I often have reactions of bloating and discomfort from many different foods even following these guidelines. Read your ingredient labels and watch what restaurants are putting on your plate. It also helps me to never eat an orphaned carb. Many days, my stomach says DON'T PUT ANYTHING IN ME! It's often a crap shoot (literally, sorry) as to what part of me is going to rebel- autonomic or GI system. A vegan/vegetarian diet has also been very beneficial for a number of medical issues- especially keeping my floppy veins clear of plaque build up. In complex medical issues, managing diet can be as rewarding as it can be difficult.

• Get up and move! Even if no stretching and no added weight exercises leave you to simply move around, that's often a better way forward than lying still, if it's manageable. I've tried lots of different Physical Therapy, water PT, weight bearing exercise, stretching, and it took many years to find the best specialized Physical Therapy from a Dr who happens to have EDS, as well. She has developed a plan that works well for me and I've been able to build upon my lacking posture and balance to a point that I can now include some strengthening exercises. Granted, there will be times when you overstep your own boundaries and rest and healing will be required. It's a daily planning process, which often depends on what's going on outside of your control. Leave some wiggle room for post-stressful situations, and you'll see a light at the end of the tunnel of big projects or busy days.  

• I use a wheeled walker (rollator) to walk any distance- from my car to a building, and around the grocery store. If I'm going to an amusement park or all over a big mall, a power wheelchair is my friend. My muscles will give out, weaken and spasm (neuromuscular fatigue) when left to their own devices. Not to mention muscle microtears and stretching the ligaments beyond repair due to EDS is just something I have to work around as much as possible.

• Braces can help keep wobbly joints in place, which can help further movement and with less pain. I use ankle, knee, and SI joint stabilizers when needed for long days of walking.

• The feet are the foundation of the body and my arches disappear with use, so I need orthotics at all times. I even keep a pair in my house shoes.

• Keep an eye on that heart rate- Mine used to average 100 bpm sitting still, and dips lower and jogs higher by around 30 beats upon laying and standing. Several things that keep inflammation lower, like vegetarian diet, mast cell medications, and manual lymph drainage, has helped this tremendously- my BP has an average of 80 bpm now! 

•Sleep is an integral part of chronic living. Having a healthy sleep routine is essential. Sleep studies help uncover a myriad of sleep disturbances, and getting the proper amount of restorative sleep can help not only revitalize and energize, but keep pain levels down, as well. If I don't sleep well or enough, I won't heal correctly, and will have to add the pain I develop throughout a day on to the pain from the previous days. The oral appliance I use on a nightly basis has helped me achieve more restorative sleep.
•I see an OT for MLD (Manual Lymphatic Drainage) and recently acquired a lymphedema pump that I use daily and it is helpful in many ways. When your lymphatic system stops working properly from collagen issues that lead to floppiness of the lymphatic system and the pumps are not able to work due to chronic inflammation, many different issues in many other systems can occur. I look forward to more research and development in the future.