My Behemoth Flare
For the last couple of weeks I’ve had a deeper, ongoing pain that I’ve been treating with Prednisone, but it hasn’t done much to reduce the inflammation.
The previous two days I could sense something bad was brewing. Sunday morning I woke up and could hardly walk, even with my cane or my Nitro Rollator (the bright red 4-wheel one you push).
After eating, I went back to my Zecliner and napped until around 1 PM. The dogs were barking so loudly I hated to get up, but when I tried to stand, I almost didn’t make it. My feet felt like they were stuck in concrete — so cold, so heavy. The neuropathy hit the bottoms of my feet hard, and every bone in my feet hurt. The pain shot through my hips and straight up my spine to my damaged C3-C4 neck.
My entire back hurts, but the wide strip running from my right hip up my spine to my shoulders is indescribable. I already live with chronic pain from AS and a few other issues, but this was on another level.
I also have a stupid amount of electricity running through my body. When it exits through my toes and fingers, my fingertips get red and sore. I can’t pick up anything for very long or wear tighter shoes.
I normally live at about a 10 on the pain scale, so I know the difference — this felt like a 15. It’s not even winter, but this is the largest flare I’ve had, even compared to cold weather ones. I’m really not looking forward to the cold months ahead, since this 97-degree heat is already kicking my butt.
Just wondering how things are going for you. Has your painful flare improved? Thinking of you (Kathy (Team member) - Thanks for checking on me.
I’m still doing the AS dance, but the last month+ has been mostly about crushing fatigue. I have almost no energy or desire to get anything done. My sleep is completely off — my eyes just won’t close, so I rarely fall asleep before 2–3 AM.
Saturday night I finally dozed off at 2:45, only to be up at 4:40. I grabbed a quick bite, went back to bed, and slept until noon. Even now I’m sitting at the table, head propped up on my left hand, typing one-handed because I’m so wiped out. I’ve nodded off at this same table many times (thankfully never face-first into my food).
It’s just one of those long, dragging flares where everything feels like too much.
Appreciate you thinking of me.
RonI am so sorry your flare has dragged on and on. Fatigue is horrible! Have you spoken to your doctor about it? Thinking about you. Kathy (Team member)
This sounds overwhelming, both the pain and having to function with the pain. I am sure the extreme heat is contributing in some way, so I hope you have access to air conditioning. Do you have support at home, or at least someone to stop in and care for your dogs? Please let us know if your flare resolves itself soon. All the best, Kathy (Team member) - Kathy, I have a wife , Daughter only one Whakki dog. This Flare started early in June continues to get worse. Pain Management Dr is my friend have his cell number , email etc. I wrote him an email at 2this morning haven’t heard back. Monday he’s in clinic seeing many people. He works until his waiting room is empty no matter what time it is. He’s been my Dr and friend for 15 years easy work with. He gave me injections for my hips, back neck etc except they stopped being effective. I asked this morning if he had any other ideas for an injection but haven’t heard back. A few months ago he filled joints with Steroids headed for home they vanished 25 minutes after leaving his office.
Last night had to use my California Peace Pipe to get 3 hours sleep, it’s usually 2.
Ron- Unless it’s for a Dr. Appointment and couple other items I’m staying inside where it’s 72. lol
