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Products of benefit to individuals with Ehlers Danlos Syndrome
Reviews and Recommendations by Bonnie Gruenberg Ehlers Danlos Syndrome is a genetic disorder that makes the connective tissues in the body weaker and less supportive. This abnormal collagen can affect many different structures within the body including cartilage, skin, joints, blood vessels, and muscles. Some people with EDS also have POTS, Mast Cell Activation Disorder, and other related conditions.
As a person with EDS, I can recommend the following products: POTS/Fainting Postural Orthostatic Tachycardia Syndrome (POTS) is a common diagnosis for people with Ehlers Danlos syndrome. There s no easy solution for POTS, and it isnt always possible to avoid activities (such as prolonged standing, heat, dehydration) that can lead to a fainting episode. How I avoid fainting: stay hydrated- drink electrolytes daily. Stay fit. AND wear medical grade compression stockings when iI expect to be standing for long periods. The secret is to get the kind that compresses the abdomen as well as the legs. Compression socks and knee high stockings are not as effective, at least not for me. Compression leggings https://supacore.com/en-us/products/medical-grade-pots-compression-legging I ordered my Supracore leggings from the Supacore website. These leggings are designed specifically for people who suffer from POTS. They are very tight but breathable, and have good length, great for tall people. I find them more comfortable than compression hose. The company is out of Australia, but they must have a US outlet because I got mine within a few days of ordering. Compression stockings https://amzn.to/3JscCjk Jobst 20-30 mmhg ultrasheer panytyhose work great as "POTS stockings" They are also quire expensive. However none of the cheap brands have been effective for me- except Futuro. Cheap but effective compression stockings https://amzn.to/3X9ZRgk Futuro offers effective stockings at a much lower price than Jobst, but they are also much hotter and thicker. Sacroiliac pain I often develop sciatica or SI joint tenderness wen my pelvic joints slip out of alignment. Physical therapy and increasing muscular strength is the most effective treatment for me, but while Im healing I benefit from wearing a Serola SI belt. Serola SI belt https://amzn.to/4oJit2A The Serola SI belt is absolutely the best device for cinching my hips together while i heal. It is thin enough to wear under most clothing. Socket Seat https://amzn.to/4qGbJUO For many years I had issues wiht my right SI joint slipping. At its worst I had trouble driving even the 45 minutes to work without the joint locking painfully. I tried a half dozen seat cushions, and this is the one that works. I bought one for my desk chair, for my daughter, and for my mother. Not only can I drive for 4 straight hours while perched on this cushion, it seems to have improved by SI pain overall- a few months after buying it the pain was almost gone. Muscle spasms Shiatzu machine. https://amzn.to/4hHZ3ZR Other brands work as well as this one. The person with EDS is often hypermobile. To compensate for overly stretchy connective tissue that lets joints move beyond a normal range of motion, the surrounding muscles tighten and spasm. Over the years, trigger points develop. Massage therapy, stretching and strengthening is the ideal treatment. In the absence of a massage therapist, this device aggressively attacks muscle knots and helps them to relax. It works similarly to those massage chairs in the nail salon. Shoulder pain https://amzn.to/47zod87 REVIX Shoulder Ice Pack Wrap for Rotator Cuff and Arm, Reusable Gel Cold Wrap with Compression. Actually, I used the Ubertherm brand, but Amazon doesn't seem to carry it anymore, and this product is close. When the pain of a frozen shoulder/torn rotator cuff shoulder pain prevented sleep, this ice wrap was the only thing that got me anywhere near comfortable at bedtime. |
About this page
I am a certified nurse-midwife, artist, author, photographer, blogger, and hobby farmer who struggles with the challenges of a chronic disease: Ehlers Danlos Syndrome. Most people with EDS have a drawer full of braces for various body parts and are eager to learn how to compensate or overcome health issues. On these pages, I discuss the benefits and drawbacks of products I have purchased (not free products or paid reviews) while striving to live better with Ehlers Danlos. I might make a few cents from Amazon if you click on my links. |
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© Bonnie Gruenberg 2021 Synclitic Media LLC Schoolhouse Rd New Providence, PA 17560 [email protected] (717) 723-8341 |
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