After 5 consecutive months in physical therapy (and 7 months of the past year in PT), I am finally graduating! The issues that prompted the referrals were related to my Ehlers Danlos Syndrome diagnosis. First the subluxations (slipping) of my sacroiliac joints worsened until I was having nerve pain down my legs when I sat for any length of time. Then I developed tendonitis in my right shoulder that progressed to partial rotator cuff tears and a frozen shoulder. Today, after months of PT and a month of rigorous daily workout routines, I feel stronger than ever before in my life and ready to achieve a higher degree of fitness.
Not all physical therapy providers are equal. Initially, when my symptoms became problematic enough to necessitate PT, I chose a practice for the sole reason that they offered hydrotherapy in a 90-degree pool. Hydrotherapy is low-impact and very beneficial to the person with EDS, and the PTA who administered my therapy was engaging and fun. Hydrotherapy feels wonderful and I looked forward to my sessions. However, in two months of biweekly therapy, I saw the actual physical therapist exactly twice. Upon my initial evaluation, he gave me 4 home exercises that never changed through the 2 months that they treated my shoulder. My injury progressed from tendonitis to two partial-thickness tears and a frozen shoulder. I had to stop working due to pain and disability. Ultimately, the care provided by this practice yielded no benefit.
Dismayed by my diagnosis and frustrated by my lack of progress, I returned to Neff Physical Therapy in Quarryville, PA. I had been a client of Neff PT a few years earlier to treat subluxations of my left shoulder, which quickly resolved under their management. This time I arrived in sorry shape in the dark, dark days of January. I was in tremendous pain and the slightest rotation of my forearm sent paroxysms of agony though the inflamed shoulder. I couldn't sleep, couldn't put on a sweatshirt, and couldn't put my hand on my head or on the opposite shoulder. I was anxious and miserable, frustrated about my inability to work, and terrified at the possibility that the shoulder would require surgical intervention. People with EDS do not heal well from surgery, and sometimes surgical repair involves trading one problem for another.
Neff’s approach to physical therapy involves manipulating the joint to restore its normal anatomical position and movement, then working through an ever-expanding regimen of strengthening exercises to maintain that alignment. I saw the same physical therapist, Dr Davis, at every appointment, and worked with the same PTA, Dillon, who put me though my paces each time, modifying exercises as my strength and ability improved.
With each visit, Dr Davis listened carefully to my self-assessment, answered questions, performed manual therapy that restored normal alignment, and prescribed exercises that helped me continually gain strength and improve functionality. While my shoulder injury was my presenting problem, Dr Davis saw me holistically. He worked on the spasms and restrictions that prevented my neck from moving normally. My sacroiliac joint suffered frequent subluxations and he used manual therapy to correct abnormal rotation of my sacrum. On a typical visit, I would undergo 10-15 minutes of manual therapy and perform 45 minutes of stretching and strengthening. Under their care, I made steady progress.
Today, after 5 continuous months of physical therapy and a month of daily workouts, I feel strong. I still have months of stretching and strengthening ahead of me to recover my previous range of motion. But I feel strong and vibrant, ready to build my future self though hard work and clean sweat.
As a person with EDS, it is almost inevitable that I will require physical therapy in the future. Now that I have adopted a lifestyle that emphasizes daily fitness training, I hope that my future breakdowns and subluxations will be infrequent in timing and minor in degree. But it has become clear to me that some physical therapy providers are much more effective than others. I am grateful to Neff PT for restoring the functionality of my arm and pointing me towards a lifetime of better health.
What follows is not a paid review, but rather is an honest assessment of my Fitbit Versa 3, which I love. I posted a copy of this review on the Amazon site as well. I have owned Fitbits before and liked them all but the Versa 3 is the best yet. It has been a great motivator.
I bought my Versa 3 directly from the Fitbit website. I love it! My doctor said I MUST build muscle and do cardio if I am to have any quality of life in the future. And I have NEVER stuck to any kind of exercise program in my life. In that moment, I redefined myself. I created the self-concept that I am now a person who exercises and I must do something active every day of my life from now on. But how to stay motivated? How to bring some fun into the routine. The answer was get a Fitbit, a fancy one with all the options.
I am a competitive person, but only with myself. I find it fascinating that the woman next to me is pumping huge amounts of iron, but what matters to me is that I was only able to curl 1 pound with my injured arm three weeks ago and now I can do 3 pounds. When I started using the elliptical a month ago I could only do 0.11 miles; three weeks later I can sustain 45 minutes and 3.3 miles! I compete with myself to challenge my personal bests. The Fitbit is terrific for this, because it stores all of my data and I can see evidence that I am getting stronger and developing endurance. I can even wear it swimming!
It also rewards me for a job well done. Some people reward themselves with a cookie - not me. I feel amply rewarded when I hit those 10,000 steps and the display in the ap flashes and says "You did it!" I find the rewards provided by the Fitbit - goal achievement and a graphic display of what I accomplished for the day -- are strong motivators.
I love that I can set the exercise timer to specific activities. When I hike, it tracks my route by GPS, and afterwards I can see not only my mileage, but my route on a map, my pace, and how hard I exercised along the way. I have the premium membership, which unlocks all of the features. The Versa 3 tracks my heartrate, my heartrate variability, my body temperature while sleeping, sleep stages, and my readiness for exercise. It can also track mindfulness and mood, and has tutorials and exercises to cultivate calmness.
A few Amazon reviews mentioned that Fitbit has poor customer service, and that gave me pause when considering which device to buy. This was not my experience! As it turns out, I needed to use customer service within the first 3 weeks of purchase- the Fitbit wouldn't change and the battery went dead. I ran into problems with their "message a representative" options - the site kept giving me error messages. However, when I called the help desk number (which was not difficult to find on the site) I was only on hold a short time before an agent answered and guided me though the surprisingly simple answer to my problem. I had slathered on moisturizing lotion after my shower the night before, and it obstructed the charging contacts. She had me swab the charging surfaces of the Fitbit and the charger with an alcohol wipe, and that resolved the issue. So, A+ for customer service.
The ap includes a feature where I can log my water intake (hydration is a huge challenge for me) and log my food intake. At the end of the day I can see my intake of not only calories but carbs, fats, and proteins. I have learned a lot about my eating habits and how to strategize for improvement.
The versa 3 specifically is super comfortable and I like the big wide display. It is easy to read even in bright sunlight. I got the pink one, which is a pretty, cheerful salmon color. You can change the clock face to whatever display pleases you. There are third party options for displays. I like the one with the dandelion that opens into a full seed head as you do more exercise. I finally settled on the photo display that allows you to upload your own image. My choice is a painting I made of my beloved horse who recently died- it is comforting to see her on my Fitbit whenever I check the time or data.
There are a few shortcomings. I am a midwife and work 24 hr shifts; we nap when we can. When I sleep in 2 or 3 hour intervals the Fitbit does not track my sleep stages. Also, annoyingly, when I am lying in bed unable to sleep, the Fitbit thinks I am in either light sleep or REM sleep. This design flaw artificially inflates my sleep total; the ap might say I got 6.5 hr and bestows a good sleep score, when in reality only I logged only 4.5 hours of sleep and I was groggy and cranky all day. Another problem is that I want to gain weight. Fitbit is heavily slanted towards people who want to lose or maintain. The ap does not have a feature that tracks calories towards my goal of a 10 pound slow gain to support muscle development. Also, while there are settings for tracking elliptical, circuit training, hiking, etc, there is no setting for rowing. I use the general workout setting when I row.
The Versa 3 was pricy, and I had to carefully weigh the options before purchasing one of the most expensive trackers on the market. Overall, though, Fitbit in general and Versa 3 in particular are worth the investment. I think if I had bought a cheaper tracker with fewer features, I would have eventually bought a Versa 3 down the road. I previously owned Fitbits, and the Versa 3 is the best of them.
As a person with Ehlers-Danlos syndrome, I am no stranger to joint dysfunction and pain - but the difficulties I developed with my shoulder this past fall have been among my greatest challenges presented by this disease. It started in September with minor tenderness with certain repetitive movements, and progressed to life-limiting tendinopathy, rotator cuff tear and adhesive capsulitis (frozen shoulder) by January. All through December and especially January, the pain was difficult to manage. After 2 corticosteroid injections and vigorous physical therapy, I am finally making progress towards healing.
This is the story of the products that have been helpful to me in my healing so far. All are available at Amazon and links are included below. If you follow the link to Amazon I get a few cents when you purchase it, and in so doing you will support this blog. What follows are honest reviews of products which I found helpful. I tried a lot of products, often buying 3 or 4 items before I found the one that actually helped. Hopefully what worked for me is also helpful to you if you are struggling with a similar condition.
I had to sleep in the guest room propped up on a high wedge from AllSett Health (folding memory foam incline cushion system) with pillows along both sides to limit movement. Many people move to a recliner chair for the duration. As any movement woke me with pain, it was a real challenge to structure my beds space to maximize comfort and minimize movement. I was most comfortable sleeping in a high semi-sitting position, using rolled blankets, cushions and thick pillows along both sides of the wedge. Semi-sitting, the pillows supported the arm from elbow to hand, and if I slept on my on my left side the pillows supported the arm comfortably at sternum-height.
I don’t want to think what the nights would have been like without my übertherm Compression Shoulder Ice Pack Wrap. This product was a LIFESAVER. I tried several other braces and compression wraps but none was anywhere near as effective for pain management. It has a wide compartment that holds not only its custom heat/ice pack but also accommodates other brands. The ice pack that came with the übertherm, however, stays cold much longer than my other ice packs. The compression is perfect, and it greatly reduces the pain of the injury. It would be especially good for supporting a dislocated shoulder as it heals. It stabilized my arm at night and allowed me to sleep much better. It also supported the shoulder while I went about my day and restricted the painful movement. On a bad night, I would sometimes get up 3 times in the night for fresh ice, but the übertherm worked better for pain management than any other modality.
The only way I will be able to get normal range of motion into my frozen shoulder without surgery is to stretch it hard. This of course can be excruciating. My physician gave me a series of two steroid shots to reduce inflammation and pain so that I could better mobilize the joint. My physical therapist prescribed stretching exercises including making snow-angels, the prayer press, and wall climbing, The most effective (and painful!) treatment has been the use of a shoulder pulley. I bought an inexpensive but effective model on Amazon for home use, the Vive over-the-door shoulder pulley. It really hurts but probably is the most effective method I have tried for regaining mobility. Ask your physical therapist if it would help you too.
Stretching the shrink-wrapped tissue is key to healing, but the other essential component is strengthening the arm, and my whole body as well. My physicians have strongly recommended I engage in a regimen of strength training and cardio for the rest of my life. This represents a HUGE lifestyle change for me, but it is the only way to prevent my body from breaking down, so Ill do it. I joined the YMCA, but continue to work out at home. The Vive resistance band set works over the door and is easy to use at home.
Embarrassing but true, if you spend a lot of time with your arm strapped to your chest, you will sweat and often incredibly stinky bacteria begin to grow in your armpit. This powerful and horrible underarm odor does not go away with ordinary soaps or cleaning agents. I did, however find Hibclens surgical soap to be the solution. Simply wash with Hibiclens and apply deodorant as usual and it truly keeps the odor at bay.
My sports medicine doctor says that if I build muscle to stabilize my joints, my body will likely remain active and functional for years to come. If not, it will fail spectacularly in only a few years. How's that for rocking your world? He specified that while trying to build muscle, I need to take in 60-100gm of protein a day (it is based on my body weight). I am of low-normal weight and have difficulty gaining. Im not a big eater, and I do not want to overload myself with sugar. My body-builder son recommended the Redcon MRE protein powders. They are made with real food, real nutrition. They taste pretty good. The one thing I do not like is that they contain sucralose. Life is full of trade offs, and with protein powders you have to decide whether you are willing to accept excessive sugar or artificial sweeteners. MRE works well for me in smoothies. It doesn't taste bad, kinda good actually. I sip on it throughout the day and drink the next one the following day. When I complained about the sucralose to my son, he suggested switching to Animal Meal. No artificial sweeteners - it is sweetened with stevia, and he says it feels good in the belly and tastes delicious. I just ordered some and Ill let you know how I like it. I also ordered some Animal Flex joint powder from the same company.
II rely heavily on smoothies to improve my caloric intake and as a way to get the protein powder into my body. I take a 2 quart blender and add oat milk, pomegranate juice, frozen and fresh fruit, coconut milk, chia seeds, yogurt, and proteins powder, and sip the concoction throughout the day until it is gone. It is cheaper than buying those pre-packaged protein drinks, and you have control over what goes into your smoothie; you can use real food. I used to use the Nutribullet but wasn't happy with customer support when the motor started smoking (!). So I switched to using a Oster Blender Pro 1200 with a glass jar. I’m so glad I switched brands. It is powerful and has been working for years without issues. It is easy to clean and machine washable. I can even put nuts into my smoothies and it pulverizes them perfectly.
If you are suffering from a frozen shoulder or similar condition, you truly have my sympathies. I hope my recommendations can help you to find the products that will help you to recover more quickly.
Ehlers Danlos Syndrome is one of the most common connective tissue disorders. The basic problem is that the recipe that the body uses to make collagen is defective. Imagine if a carpenter used a blueprint to build a house that called for not timbers and nails but for greensticks and bubble gum? There is connective tissue throughout the body, and when this tissue is defective it can cause weakness and dysfunction in a wide range of body systems. There are several subtypes within the syndrome. One person may primarily have issues with joints moving beyond the normal range of motion. Another may have problems with blood vessels bursting.
I have had EDS my entire life but was diagnosed at the age of 55. Before my diagnosis, I didn’t realize the disease occurs on a spectrum from mild to severe. My sister, on the other hand, was severely affected with EDS. She was so hypermobile her joints would literally fall out of the socket. Once a co-worker gave her a High Five and it took the hospital 4 hrs to secure her joint back into the socket. Her shoulders would even dislocate when she was sleeping. Can you imagine waking from a deep sleep with a dislocated shoulder? She had surgery to keep her joints in place. People with EDS, however, do not heal well from surgery, because healing is accomplished by collagen, and people with EDS have a faulty recipe for collagen. Surgery can make pain and disability worse for the person with EDS. Moreover, people with EDS are predisposed to developing chronic pain syndromes, especially following surgery. My sister was disabled by age 35.
My EDS manifestations were milder, but they were always there. People with connective tissue disorders tend to be unusually bendy, but their muscles are often rigid to stabilize abnormally loose joints. When I was a kid, I usually chose to sit in weird positions that made other people cringe. I could easily put my legs behind my head. Many people believe that it is a wonderful thing to have a highly flexible body. After all, those healthy yoga masters that achieve enviable degrees of flexibility are the picture of optimal health. But the yoga master has worked to achieve not only flexibility, but also muscular strength and balance.
Many people with EDS have extreme flexibility but have weak or unbalanced musculature. Often, one group of muscles is strong, but the opposing ground of muscles is uncommonly weak, setting the stage for injury. As people with EDS live their lives, their joints are always moving beyond the healthy range of motion, and that causes damage. Joints that move out of place put pressure on nerves and other structures and cause damage. Over time, people with EDS are more prone to joint disease and torn tendons. This damage can lead to freezing and immobilization of joints.
For my first few decades of life, my shoulders would subluxate whenever I reached over my head. If I reached for a book on a shelf and sneezed, one or both shoulders would slip out, then slip back in. It was very painful, and every time it happened the joint became weaker. In grade school, I frequently sprained my ankles. In high school my knees would collapse. Id be walking across the cafeteria and a knee would give out, and there I was on the ground with my lunch on top of me. In my 20’s, while I was working as a paramedic, my sacroiliac joints began to slip and lock.
I knew I was bendy but didn’t realize that my hypermobility represented a disease process. I saw my sister dealing with her truly serious issues and never considered that I also had a connective tissue disorder because I was only dealing with sprains, slipped joints and fainting.
Then I was 55, a physical therapist noticed my hypermobility and suggested I might have a connective tissue disorder. My PCP had me evaluated, I was diagnosed, and suddenly my life made sense. As it turns out, my mother probably has a mild manifestation of EDS, while my child is severely affected and is currently on disability.
Building strong muscles can compensate for weak, stretchy ligaments. Most people with eds benefit greatly from physical therapy and customized exercise programs. Knowing I have EDS allows me to maximize my health and strategize about preventative maintenance that will improve my long-term health.
Bonnie Gruenberg is a certified nurse-midwife, artist, author, photographer, blogger, and hobby farmer. She also struggles with the challenges of a chronic connective tissue disease: Ehlers Danlos Syndrome.