Trying to understand and manage changing trends in my health
Over the past year, my usual patterns have gone out the window
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Sometimes I feel like my Ehlers-Danlos syndrome (EDS) is just plain weird. I can’t always figure out what’s going on or why, which makes it harder to manage. Recently, I’ve been waking up with a stiff neck and back, and sometimes my muscles feel shaky, as if I haven’t had enough to eat, even when I had a good dinner the night before. I try my best to track trends, but over the last year or so, I’ve noticed that my usual patterns have changed or are less reliable.
I’m not sure why that’s the case, but it certainly makes health management more unpredictable. To be fair, it’s been a crazy few months. Traveling to Europe over the summer put a unique strain on my body, between jet lag and the hours spent sitting on a plane. Then, a bad fall off my horse that resulted in a broken rib, along with muscle and diaphragm damage, didn’t help.
However, even apart from those events, it’s been harder to keep my soreness and stiffness relatively stable, and some things that usually help aren’t as effective anymore. Interestingly, Ehlers-Danlos News recently reported on a study that found that people with hypermobile EDS and other hypermobility spectrum disorders often have difficulty finding pain relief. This spoke to me.
My current strategies
I’ve been trying a few different strategies to ease my symptoms. First, I’m focused on eating right and getting enough protein. Between my EDS-related food sensitivities and alpha-gal syndrome, my diet is limited, so it can be difficult to ensure I’m getting all the proper nutrients. Eating a nutritious snack in the morning and afternoon, such as an apple with peanut butter or sugar- and dairy-free yogurt, seems to be helping.
I’ve also been using my heating pad religiously to relax my stiff muscles. I have one in my bedroom, one in the living room for the couch, and even one for my desk chair at work. No matter where I am, I turn the heat on if I’m feeling stiff. I know heat can contribute to inflammation, but for me, it tends to be the only thing that soothes my muscles.
Lastly, I’m trying to simply be more aware. I have a natural tendency to push through things, but my recent injury has forced me to slow down. I’m working to listen to my body rather than ignore issues that aren’t convenient.
But while all of this helps me better manage my symptoms, it doesn’t necessarily help me understand the changing trends in my health. Perhaps these changes are related to my injuries, or maybe my EDS is manifesting differently these days. My EDS is always changing, and as frustrating as that can be, I must do my best to keep up with it.
Note: Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
Mark Errett
I also find heat to be a major benefit to stiffness and soreness. And I have trouble adjusting my body thermostat during season changes. Since I no longer have a bath tub, I have put a heated mattress cover on my bed and I highly recommend them. It heats up very quickly, can be adjusted for temperature and duration, and can be purchased for under $100 online. Another benefit is that you can heat just the bed not the whole room, so there are energy saving as well.
Sharon Hart
I too find heat is the most helpful for the pain. I use a heated blanket when in recliner watching TV. I have an extra large heating pad to heat my bed. It is actually a dog bed heating pad that goes from my shoulders to my knees. I set it for one hour before going to bed and is shuts off automatically. I find the most relief in a hot tub. It eases my whole body. It is winter here now with -20C temps. The cold always makes everything worse. My peridontist thinks I have Sjogren's disease. Seeing Dr next week for more testing. The most helpful have been physiotherapists, our joke being we work on one body part at a time.
Cynthia Willner
Your body is still trying to recover from one traumatic issue but before it does its been insulted again. Your body can not catch up. I've have numerous surgeries, lets stop at about 80, yes 80 but the last 4 yrs(5 surgeries) and now 73 my body does not recover at all the same as even age 60. I pray I can forego any more major surgeries, my body doesn't seem to have the energy, the ability to heal itself as before. It's broken and we're older. After the 2nd knee revision after the original replacement my body is struggling to return to function like a regular EDS body 😅, it's sad. Stop pushing yourself. The stress of worrying about recovery isn't helping. I know its hard. You're not alone, you're not imagining what's happening or not happening to your body.