As I mentioned in my MCAS, EDS, POTS – I’m a Zebra post, I recently was diagnosed with Ehlers-Danlos Syndrome (EDS) by a geneticist. EDS is a group of genetic connective tissue disorders that affect the collagen in your body. Collagen makes up a main structural part of the body. Collagen is a sturdy, fibrous protein that is a elementary unit in both building connective tissue, such as bones, and supplying flexibility where needed, such as in cartilage.
People with EDS often have joint hypermobility, skin that stretches more than normal and fragile tissues. There are often also issues with widespread musculoskeletal pain, eye problems, heart problems, gum disease, muscle weakness, and ruptures of vascular system and internal organs. There are 13 different sub-types of EDS, with varying issues with each sub-type. It appears I have the hypermobile EDS sub-type. Life expectancy may be shortened in Vascular EDS syndrome due to the risk of organ and vessel rupture. Life expectancy is generally not changed in the other types. Each person’s case of Ehlers-Danlos syndrome will be unique. Although there is no cure for EDS, treatment is focused on symptoms and prevention of problems down the road.
Symptoms can include: hypermobility, widespread musculoskeletal pain, fragile skin, rupture of the blood vessels, intestines, and other organs, migraines, menorrhagia, dysautonomia (including POTS), irritable bowel syndrome (IBS), reflux, bloating, constipation, nausea, anxiety, depression, and confusion (brain fog).
My symptoms of EDS, looking back, began with “growing pains” as a child. I remember crying in pain and my mom and dad having to rub my legs often. We attributed it at the time to me growing quickly as I had always been about a foot taller than peers my age up until high school. Even in high school, I was taller than most of the guys in my classes. That made dating fun – even now, my husband is about 3 inches shorter than I am. I was also always clumsy and was always spraining my ankles. We thought I was spraining my ankles because of my clumsiness, but looking back, I know now my ankles were often giving out on me causing me to fall. I’ve also always bruised very easily, which is common with EDSers. I also have sprained my wrists numerous times. Now, I have to be cautious because if I lean down on my hands – often even just a little – my wrists will give out and partially subluxate and I’ll have to pop them back in. Every time I go to the chiropractor, they have to put my hips back in. Although I have stopped going to the chiropractor because it’s really cautioned against with EDS because of the instability of our joints – an adjustment can actually hyperextend our joints and cause more issues. I had injured my one knee several times in the past and now it seems to go out from time to time. I have an over-the-counter brace to test out for it that I’ll tell you about here in a bit. The other knee I have at least strained once, but never as badly as I have the one I am trying to find a brace for. And now, when I roll over in bed, my shoulders – especially my right one – pops in and out often. I’m just one big pile of joint and muscle pain now.
I also have developed some of the skin issues common with EDS. When I had surgery in 2009, I did develop an atrophic scar from the incision. I have always had stretch marks, even before I started gaining weight. My skin seems to be thinner than other people’s – you can easily see the veins in my hands and arms, as well as other areas. I developed spider veins in my legs at an early age – before the weight gain – and am now getting a few varicose veins. Every time I have an IV – the vein blows or I get phlebitis afterwards. I’ve learned this is common with EDS as well. Gastrointestinal issues are typical in quite a few EDSers. With me having MCAS and POTS as well, I never know which of the three is causing my GI concerns. Well, often I can tell if it’s an MCAS reaction because those normally have other symptoms along with it.
As I’m writing this, my one hip is subluxated. I can tell because I have pain in that leg, and I often have to grab that knee to cross my legs or even get into the car. I have a difficult time getting it back in place myself. I’m hoping in physical therapy, they can help me strengthen it so it doesn’t subluxate as often. I started physical therapy on Monday. Hopefully this will help both my strength and improving the stability of my joints. The plan is to do aquatic therapy as long as it doesn’t trigger my MCAS or POTS. Aquatic therapy should safely improve my joint health and help with my reconditioning from being chronically ill for so long without answers. I’ll also see what they recommend in the way of joint stabilization braces. I currently wear OTC braces on my wrists and ankles, but need one for my injured knee. I’ll be going twice weekly for as long as insurance will pay and they think I need to. I’m hoping it helps as much as I am looking forward to it helping.
I’m trialing a Sleeve Stars Knee Brace for the knee I’ve repeatedly injured. I’ve worn it twice now. The one day I wore it for 6 hours or more. It generally fits well considering it’s a one size fits most and I have a large large. As you can see from the photos, it bunches some at the top, I believe from my thigh being much larger than my calf. It does offer a good bit of support. Since I’m not able to be very active due to all of my health issues, I can’t tell you have supportive it would be for someone really active though. I had less pain that evening and the next day, so I believe that it controlled my hyperextension. If this brace were a little bit longer, I think I would love it. With my large thigh and long legs, it’s just not the perfect fit for me. Someone with smaller legs and maybe a little shorter may love it. It is made from neoprene and is very comfortable. It was over 90° on the day I wore it for over 6 hours and it wasn’t too hot for me to wear. I do recommend this brace for someone who is smaller than me. It’s currently $10.00 on Amazon as of the writing of this post at https://amzn.to/2ld5jNF. I did receive this brace for free in return for my honest review and opinions.