Chronic Fatigue

This migraine appears to want to be my friend and comes back daily. So after two ER visits the 2 nd one gave me the right meds. I got a CT scan followed up w my doc. Checked al kinds of bloodwork and vitamin D and I am healthy as ever at 65. Why I see my doc and tell him I spend 90% of my time in bed and then I get to do it some more. I turned on a comedy show and laughed a lot. I feel like every few years I just got to check and see if anything is wrong nope just migraines and fibromyalgia and chronic fatigue. Oh well a good week spent now back to the couch to finish Kevin James special.

I was recently diagnosed as having hEDS in addition to my longtime diagnoses of fibromyalgia, chronic fatigue and psoriatic arthritis. It is the diagnosis however, that finally connected all the dots - early onset osteoarthritis, muscle tears (1st one at age 8), and many other things that didn’t quite fit. So, learning about hEDS and how that affects things going forwards. #EhlersDanlosSyndrome

So, after years of the drs saying that while yes, the blood works confirms i DO have lupus, as i have for many years but i must be exaggerating the intensity of the pain, but my blood markers were not showing THAT huge of disease activity, they (the VA) agreed to send me to a fibromyalgia specialist who actually read my medical records (unlike the VA) and diagnosed me with also having fibro. So what is your advice? Not the basic stuff like pace yourself, the lupus als gives severe pain and chronic fatigue so i know that, but what other advice do you have? The stuff they don’t put in the medical books? The real life things that work and/or don’t work? Any advice at all

For 20 of my almost 30 years I have shuttled back and forth between doctors, specialists, clinics, hoping that one day someone would look at me, take my concerns seriously, and help find a viable treatment plan. It’s taken me 20 years to make bare minimum progress; often hitting the roadblocks of “you don’t look sick,” “you don’t present normally,” “it’s just stress.” That coupled with intersection of navigating medical care as a Black woman has presented with constant challenges of having to prove my humanity and that I’m worthy of care.

Goals, dreams, advancements, have always been placed on the back burner as I shifted, delayed, and gave up on them in order to accommodate my worsening symptoms and pour into clinics, specialists, and testing. I’ve watched as those around me soar with a vibrancy in life while I remained stagnant. Stuck in what feels like an unyielding loop of delay, baby step forward, delay again with my health.

As how the loop proceeds, I stepped away from my graduate program temporarily in order to give my body the break it needs and to focus fully on my health. Despite initial feelings of despair with having to shift yet again, it has been transformative in giving me the uninterrupted breath that I needed. However, despite taking a vital step forward, I feel like I’ve been shoved 50 steps back, straight into that loop again.

I fought tooth and nail to be seen as someone worth saving, someone worth caring for, someone worth trying to find the conditions only to be met with “you’re too medically complex,” “you’re too genetically complex,” “medicine probably hasn’t caught up to what you need to find a diagnosis.” Where do I go from here? How can I continue to advocate in a space that deems me too challenging and discards me? Deflated, devastated, despair, it is all encompassing. How do I move forward when I don’t see it as worth fighting for anymore?

#EhlersDanlosSyndrome #ChronicFatigue #Fibromyalgia #MyastheniaGravis #Depression #MentalHealth