While my MCAS has been really good lately, the same can’t be said for my Ehlers-Danlos Syndrome and I have been in a huge pain flare since the end of 2019. I have no idea what set it off and I can’t seem to get out of it, which is massively frustrating. It’s probably hormone related but I don’t know that for certain and not having a medical professional to call for advice at times like this leaves me feeling like I’m floundering alone in the dark. Which I am, let’s face it.
The pain is concentrated on my hips, SI joint and pelvis. I’ve had issues with all three in the past, but usually if I wear my SI belt constantly, rest up and use my crutches for walking it will eventually settle down. This time, though, none of that is really helping.
Nights in bed are the worst. I haven’t been able to lie, let alone sleep, on my back or front in years as my back is way too painful in those positions so I’m a side sleeper. But now if I sleep on my right side the pain in my left hip is unbearable, plus my right arm goes totally numb and if I sleep in my left side my left leg goes totally numb to the point where it’s actually painful. *Sigh*.
I’ve tried taping my hips and wearing my SI belt while sleeping and although it does help a bit it’s not effective in reducing the pain to the point of being comfortable.
In addition, when I was first diagnosed with hEDS ten years ago I was having constant issues with my elbows, wrists and hands. It took a couple of years but eventually when I started taping and found some kitchen aids to help my hands things settled down and I haven’t had any significant pain for a while. Until this year, when for some reason it’s all flared back up again. My right elbow in particular is sooooo sore getting dressed is like a daily form of torture and as I’m typing this my hands are protesting loudly . I’m taping and bracing every day but nothing seems to be improving.
Hand in hand with the pain is severe stiffness which is painful in itself. It started more than a decade ago but has ratched up a notch or ten in the past twelve months and my range of movement is diminishing by the week. When you’re used to being hypermobile, being stiff as a board is totally weird and I can’t even bend down to put my shoes on let alone wrap my legs round head like I used to 😉.
Add to this my often daily migraines and my body is shouting to me that it is NOT HAPPY *stamps foot*. I’m trying to placate it with Pringles and Haribo Gold Bears but the only part of my body liking those, it seems, is my waist line 😁.
If any of my middle aged Zebra readers have any ideas what’s going on or any advice on how I can help the situation please let me know because it’s irritating the shit out of me now! Bare in mind, though, that we are still in lockdown and in any event I have anaphylaxis to acupuncture, massage and osteopathy and zero money so my options are limited .