Asking for a friend…
I hate to exercise. There. I said it.
I do wear one of those fancy FitBits, though, which means I at least have some sort of aspiration to exercise. I go to the park across the street a couple times a week to “get my steps in”. There I see young people and old people and couples and dogs and even kids jogging along looking all glowy with the sweat of a fit person, and I think to myself, “It must be nice to be so strong and awesome like that.” I get uber jealous of runners sometimes.
I want to run, but, honestly, I’m not 100% sure whether it would be wise for me to run. Between the Boulder Battle of Swedish Coast (you can read that unfortunate back story HERE) and the joint hypermobility syndrome I mentioned in Anxious Bodies and I love you. I accept you, I’m not sure if I’m a good candidate for running. But I want to…
Throwback 20 or so years to when I was a bright blue-eyed 6-year-old. Not to brag, but I was truly adorable at this age. Milk-blonde hair to my waist, giant blue eyes, and an adoring smile tend to have a special effect on big people. Although it didn’t mean much at the time, I remember my parents talking in concerned tones about letting me hike for long distances. At the time we hiked as a family on the weekends. Apparently something wasn’t quite right with my hips and knees and they were discussing ways to keep me from overexerting my joints. Turns out the doctors had suspected joint hypermobility syndrome at the time.
Don’t get me wrong, hypermobile joints are incredibly common. Some doctors goes as far as to say that it affects some 40% of the population. About 90% of those people have no symptoms other than having unusually loose joints, which happens to be an incredible blessing if you decide to become a dancer, gymnast, or contortionist. It most often runs in families and usually affects females more often than males. The remaining 10% have loose joints AND symptoms such as…
- pain and stiffness in the joints and muscles (me)
- clicking joints (yes)
- joints that dislocate (come out of the correct position) easily (hello, right hip joint)
- fatigue (extreme tiredness) (uh-huh)
- recurrent injuries – such as sprains (I’m a catastrophe in heels…)
- digestive problems – such as constipation and Irritable Bowel Syndrome (IBS) (Nods solemnly)
- dizziness and fainting (sometimes?)
- thin or stretchy skin (not this one, haha)
If hypermobility occurs alongside symptoms such as these, it is known as joint hypermobility syndrome (JHS). There is no cure for the syndrome. One can only manage the symptoms such as the pain and swelling. There’s a ton doctors and researchers still don’t know about the syndrome, but it tends to run in families and they think it has something to do with the way collagen is made by the body. And, yes, I jumped on the grass-fed collagen bandwagon, and I have seen NO improvements over the years. That’s just me, though. It is still a decent non-dairy protein source if you’re into that kinda thing.
JHS makes exercising unusually challenging. Normals activities such as standing all day at work or a long car ride cause radiating pain in the joints, which makes one highly unmotivated to exercise. Exercise can help stabilize the joints, but JHS makes you more likely to slip a joint and cause injury during exercise. So when I’m exercising I have a hard time gauging when I am in pain because I am exercising and when I am in pain because I’m causing damage. For instance: I love pigeon pose in yoga. It’s amazing for relieving low back and hip pain. I like to get in and stay in that pose for 5, 6, 7 minutes at a time. I love it. To me it feels like a good kind of pain. In reality, though, I was putting so much pressure on my loose hip joints in that pose that later when I tried to walk like a normal human being the ball of my hip joint was rubbing in a way to cause severe pain and inflammation in my hips. So the doctor gave me a shot in my butt and said “No more yoga.”
But that’s not good enough for me. I can’t live life like this.
Believe me there is nothing quite so frustrating and tear-inspiring as when a doctor comes into an exam room and announces that they have no idea how to help you, but that they will happily refer you to a quadruply expensive specialist who will most likely not be able to help you either.
Physical therapy does help. It helps a lot. It’s also super expensive when you don’t have insurance coverage for it. For now I’m still shopping for a good PT in this town. Have I mentioned that it’s a dream of mine to enter the PT field to help people like me? How I will get to that dream, I have no idea, but that’s another discussion for another time.
The pain does come and go. Sometimes I will go months without pain and other times (like now) I will go months with pain where it hurts to stand, walk, and exercise. It’s especially panful when any of those things happen while standing on concrete and/or in heels/flats/dress shoes/any shoe not a running shoe or Chacos. Doctors have said that people like me tend to improve in warmer climates. Can’t really move states at this moment…
And my doctor said it’s ill advised for me take any of the anti-inflammatories (treatments for osteoarthritis are frequently prescribed for individuals with JHS) because of the GERD so what exactly am I supposed to do here??? Exercise is complicated and can be risky for someone with JHS – plus painful – but exercise also sounds like it’s my only option for longterm pain relief.
I used to go to yoga classes 3-5 times a week, and I remember feeling stronger and more capable, but now the doctors are telling me that yoga isn’t appropriate for someone with my joint composition. They say I should take up something not so hard on the joints like swimming.
I can’t swim. And I’m afraid of water. So…
I’m super curious whether anyone else out there has any experience with exercising with hypermobility joint syndrome? Doctors are giving me lists of “do nots” as long as my arm but I have gotten few “dos” and I am beginning to go a little crazy from the pain and frustration. I used to be a gymnast for crying out loud! I used to be capable!!! What happened??