Tag: ME/CFS

What if it is inflammatory arthritis instead of fibro?

~ Caroline Elizabeth ~ Leave a comment

TL; DR: Do you experience a lot of inflammation, widespread body pain, tendonitis, and peripheral joint and spinal pain? If so, you may benefit from exploring a group of autoinflammatory/autoimmune diseases called spondyloarthropathies in the differential diagnosis. Spondyloarthropathies are a group of related autoimmune rheumatological diseases (AIRDs) that can be challenging to diagnose because they … Continue reading What if it is inflammatory arthritis instead of fibro?

Sick and single

~ Caroline Elizabeth ~ Leave a comment

My husband and I separated in 2022, leaving me single for the first time in decades. While the separation process was a special kind of hell, I have landed on my feet for the most part. I harbor no ill will toward my ex, as our uncoupling has allowed us to keep the best parts … Continue reading Sick and single

My IV saline journey

~ Caroline Elizabeth ~ Leave a comment

My previous two blogs touched on IV saline for dysautonomia and exertion intolerance in ME/CFS and Long COVID and the ins and outs of IV access. In this blog, I discuss my journey to getting a port for IV saline. If you want to explore IV saline therapy, determining your angle for this treatment may … Continue reading My IV saline journey

The ins and outs of IV access for saline to treat dysautonomia

~ Caroline Elizabeth ~ 2 Comments

In my last piece, I discussed practical approaches for building a case for IV saline to treat orthostatic and exertion intolerance, two primary features of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID (especially those meeting the criteria for ME/CFS). IV saline helps treat various forms of dysautonomia, including postural orthostatic tachycardia syndrome, orthostatic hypotension, … Continue reading The ins and outs of IV access for saline to treat dysautonomia

IV saline for dysautonomia in ME/CFS and long COVID

~ Caroline Elizabeth ~ Leave a comment

There are no FDA-approved treatments for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID, a problem patients are acutely aware of. Despite this shortcoming, there is one treatment that has the potential to give people with these diseases a boost in physical and cognitive function: intravenous (IV) saline. I wish people with ME/CFS and long … Continue reading IV saline for dysautonomia in ME/CFS and long COVID

Life force

~ Caroline Elizabeth ~ 4 Comments

Living with a chronic illness is a reductionist endeavor. As pieces of us slip away and our lives diminish, we can lose sight of what it means to be a human. We are wired for connection to others, joy, love, pleasure, beauty, adventure, mystery, and more. Over time, a benevolent form of amnesia has allowed … Continue reading Life force

Six month post-tethered cord release update

~ Caroline Elizabeth ~ Leave a comment

Time for a six-month update on my spinal cord surgery on August 18, 2021! I'll try to keep it brief (haha). TL; DR - it's mixed. Bladder: I had high hopes for bladder improvement, which rapidly vanished in the initial weeks after my spinal cord surgery (called sectioning of the filum terminale, SFT). My bladder … Continue reading Six month post-tethered cord release update

Three month post-SFT surgery update

~ Caroline Elizabeth ~ 1 Comment

Chronic illness dismantles our life force, but what does it look like to reassemble it? As I reflect on the three-month mark since my surgery for tethered cord syndrome, I realize that recovery can't be captured by a list of symptom improvements (though scroll to the bottom to Table 1 for the TL; DR version). … Continue reading Three month post-SFT surgery update

I needed that like a hole in the head: what my invasive cervical traction and ICP bolt tests revealed

~ Caroline Elizabeth ~ 2 Comments

This is a slightly more technical piece with a lot of jargon - my apologies. It is geared toward people on the path to determining if they have cranial cervical instability and have some knowledge of this topic. I am happy to answer any questions readers may have. My neurosurgeon offered two "appetizers" to go … Continue reading I needed that like a hole in the head: what my invasive cervical traction and ICP bolt tests revealed

Six weeks post-SFT

~ Caroline Elizabeth ~ 3 Comments

A glass half empty "Two steps forward, three steps back" has been my mantra these past three weeks (week 3-6 post-SFT surgery). My brain feels as if it has been suspended in an opaque, viscous fluid that mutes and confuses my days. Since my last update, it's as if I have been inside a cocoon … Continue reading Six weeks post-SFT