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.
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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.