Category: 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

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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

When positivity undermines connection

~ Caroline Elizabeth ~ 2 Comments

Positivity harms many with chronic illnesses because it can deny people their experience. A quick scroll through my friends' social media accounts reveals meme after meme decrying "toxic positivity" - a form of gaslighting involving dismissing and invalidating genuine emotions. Looking on the bright side and focusing on the positive may be helpful in some … Continue reading When positivity undermines connection

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

10 tips for long-haulers seeking disability benefits

~ Caroline Elizabeth ~ Leave a comment

A couple of weeks ago, I wrote a piece for the Mighty about how long-haulers, those who remain sick after getting COVID-19, will likely face many of the same issues people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) deal with when applying for disability benefits. Having a contested illness, such as ME/CFS or chronic COVID, makes … Continue reading 10 tips for long-haulers seeking disability benefits

Balancing hope and acceptance with a chronic illness

~ Caroline Elizabeth ~ 2 Comments

Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly hope and acceptance are not mutually exclusive, but over time … Continue reading Balancing hope and acceptance with a chronic illness

Blunted heart rate and implications for pacing in ME/CFS

~ Caroline Elizabeth ~ 2 Comments

In a nutshell: Chronotropic incompetence (CI) - the inability of the heart to keep pace with increased activity - is common in myalgic encephalomyelitis (ME/CFS)CI is worse in women with ME/CFS but both men and women have a lower than expected heart rate at the anaerobic thresholdCI is worse in those who have a more … Continue reading Blunted heart rate and implications for pacing in ME/CFS