Living Chronically

Alexandria Martin

Alexandria Brooke Martin's Story

South Carolina

Age: 16-24

A little bit about my journey:

My Diagnosis

Chronic Fatigue Syndrome or Myalgic Encephalomyelitis (CFS/ME), Fibromyalgia, Scoliosis, Depression, B12 anemia, and possibly IBS (no formal diagnosis for IBS)

Time to Get Diagnosed

CFS/ME only took 3 months thanks to my amazing NP. Fibromyalgia took longer but only because I was so sore from the CFS it was hard to tell. Took a couple years for that and scoliosis. Scoliosis was only diagnosed when I had back pain so bad I was bedridden for a week. B12 anemia was before the scoliosis or fibromyalgia. Only knew it due to peripheral neuropathy. Took about a month of testing to figure out it was B12.

Year I was Diagnosed

CFS/ME-2016 Fibromyalgia-2018 Scoliosis-2017 B12 anemia-2016

Sending Love to

Joy Chapman, NP.

Hospital I'd Recommend

This is my story:

In 2016, I was in community college about to transfer to a four year university. I remember it was February, and I had not felt well for a while. I got what I assumed was a bad case of strep throat. I went to the doctor, got told it was a sinus infection, and I went on my way. I returned to the doctor saying I still felt unwell and was told it was strep. I finished antibiotics and was still unwell. When I went back the final time, a test was done for mono, but it was negative.

I was told to get over it, and nothing was wrong. I felt awful. I would go grocery shopping and feel sore for weeks after. I would feel short of breath while walking to class, and I always had a sore throat and lymph nodes. Sore and achy all over. I had always been prone to afternoon low grade fevers, but it became a daily afternoon thing. I couldn’t sleep even though I was tired all day. I went to a Nurse Practitioner recommended by my mom, and within a few months, she said it was CFS/ME based on the Epstein Barr Virus being in my blood stream (her best theory). It made sense. I had mono, never knew, and I got CFS/ME. I never properly rested, and I was told I was fine.

Around 2018, I had a rheumatologist who told me I had fibromyalgia based on a whim and was young, so I would be fine. I should attend a gym. I cried and asked my NP about it. She did agree with it after doing the pressure point test. It was likely for someone with CFS to have Fibromyalgia. B12 anemia was found out before the fibromyalgia when I had peripheral neuropathy pain. My B12 levels were low, and I had to do weekly B12 injections at first, then monthly injections, and now I do not currently need them. However, I could need the shots again, so I get my B12 levels checked regularly. Finding out I had scoliosis was just as scary as finding out about the CFS/ME. I woke up one morning, and I literally couldn’t move. I could not sit up, get out of bed, walk, or anything. I ended up getting a MRI and X-ray only to be told over the phone “You have a slight tilt in your spine. That’s normal.” Even my NP told me later that no it wasn’t, and if there’s a slight tilt, then it was scoliosis. Another doctor later confirmed that for me a few months later. I was like that for a week or so. It flares depending on my activity level, but it hasn’t been as bad luckily since then.

I say I’m living chronically, because what else can I do?

Let’s play 20 questions:

The song that keeps me going is:
Way Less Sad by AJR
I never leave home without my:
My go-to feel better movie is: 
The Princess Bride
If I was in the hospital, the celebrity I would most love to visit me would be:
Good Mythical Morning Rhett and Link or Steve Burns from Blues Clues
When I need to relax, I:
Play Azur Lane on my phone or watch Good Mythical Morning
My favorite food is:
Chinese and Japanese food
The quote that keeps me going is:
I am physically weak, but I don’t want to be a weak person- Nagisa Furukawa from Clannad After Story
When I need a laugh, I:
Watch Good Mythical Morning or Game Grumps
Meet my pets (or favorite stuffed animal):
3 dogs and 1 cat. River and Delilah are sharpey lab mixes and sisters. Bones is my baby I nursed back to health. Sally is our cat that my mom helped find, and my husband decided he needed a cat haha.
My hero is:
Sean Martin, my husband
When I’m having a down day I binge watch:
Golden Girls
My favorite book to get lost in is:
Withering Heights. It’s fun to reread.
I want to be best friends with:
Karuna Satori ASMR or Rhett and Link from GMM
The thing I’m most proud of:
Having my licensed bachelors social work in two states (LBSW)
The most wonderfully unexpected thing that has happened to me as a result of this journey is:
Realizing it’s okay to say no, and self care is not selfish.
The most hilarious thing that has happened to me is:
Random but when I was in marching band, the butt of my flute fell off while at band competition
It really means a lot when someone does this:
Lets me just complain and be allowed to do so
My favorite social media account to follow is:
Imani Barbarin on Twitter, Wheelchair Rapunzel on Facebook
The advice I would give to myself back at the beginning of this journey would be:
Allow yourself to feel what you’re feeling. Allow yourself time and pace yourself.
Words of encouragement that I’d give to my fellow warriors are
Know whatever type of life you live, you are valid. Whether you work, are at home, are bedbound, or are somewhere in between, you are a valid no matter how “productive” society deems you to be. Productivity isn’t measured in that way. Brushed your teeth today? Awesome.
Follow my journey:

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