My POTS and ME/CFS Progress

Per a request by a fellow POTSie, I am sharing my POTS and ME/CFS progress. Before sharing, I want to explain a few things first:

1. These changes happened very gradually and subtly over the course of the last two years.
2. This improvement has happened with the culmination of dozens of small things/treatments and time.
3. I want to acknowledge that this is not indicative of everyone’s experience, so take this for what it is.

I developed POTS and ME in the spring/summer of 2017 and was diagnosed in August of 2018. This compares when I was diagnosed in 2018 to now (November 2020). To read about my path to diagnosis and journey with POTS and ME/CFS up until October of 2019, you can check out My POTS and ME Story.

Tilt testing

• 2018- My BP went hypertensive at the 1 minute mark and otherwise stayed normal. My heart rate jumped from 78 to 122 (increase of 44 bpm) and stayed in the POTS criteria range the whole time I was upright.

• 2020- Poor man’s tilt (so, this is not a scientific comparison). It’s important to note that I am currently taking Mestinon because it lowers the heart rate a bit. My BP drops about 20 points when I stand, but I don’t put a ton of stock in that because I’m just using an at-home machine. My pulse at laying down is 57 bpm. 30 seconds after standing it jumps to 107 bpm (a jump of 50 bpm). By the 1 minute mark, my heart rate is already back down to 75 and stays between there and the mid 80’s the whole ten minutes.

According to my neurologist, I no longer meet POTS criteria because the heart rate increase must be sustained for a period of time. That doesn’t mean I am cured and no longer have POTS, but it is an encouraging sign of my improvement. Now I understand how my first tilt table was negative even though I felt horrible. The underlying mechanism of the disease is still present, but the outward signs can demonstrate themselves on this subclinical level. This tracks with recent research that shows decreased cerebral blood flow in patients with ME/CFS even if they do not meet the traditional POTS criteria.

Out of breath

• 2018- Very often.
• 2020- Occasionally.

“Gassed” feeling in muscles

• 2018- Severe, debilitating, and frequent. This is the sensation of the muscles having no oxygen and “burning”. The “burning” is not painful, it is a fatigue-inducing sensation. It is like having the feeling in the muscles like you just completed a 400m race… perpetually.
• 2020- This fluctuates. Most of the time it is mild, but sometimes it is more intense.

Low grade fevers with fever symptoms

• 2018- Frequent.
• 2020- Fairly rare.

Sore throat

• 2018- Occasional.
• 2020- Rare.

Bloating

• 2018- Frequent and very significant.
• 2020- Sometimes it isn’t too bad, but for the most part it is still pretty frequent and significant.

Brain fog

• 2018- Major and debilitating. This was very upsetting and embarrassing in the beginning.
• 2020- I have a very minor brain mist as my husband lovingly says. Actually, it is rare that I notice this anymore. I feel very confident in my cognitive abilities.

Driving ability

• 2018- Heck to the no.
• 2020- I can drive up to 30-45 minutes at a time on easy routes. Also, I drive like a grandma. I think this is more of a confidence issue now and I need more practice.

Pre-Syncope

• 2018- Frequent, and I would sometimes drop to the floor, but not fully faint. I like to call this maneuver the POTS, drop, and roll.
• 2020- This fluctuates. Sometimes, I will go a period of time without noticing it at all. Other times, I will notice it only when I crouch and then stand up. Occasionally, I will have a day/several days in a row where it’s like “WTH is going on!”. The good news is that my body regulates quickly and the sensation passes after a short period of time.

Fatigue

• 2018- Severe, debilitating, and constant. I was functioning around 30% of normal. I could do a little beyond taking care of my basic needs.
• 2020- This is still my most limiting factor, but this has improved significantly. I function around 70% of normal now and feel better. When I speak in percentages like that, 100% would be able to function like my peers, not necessarily feeling perfectly amazing. I do not consistently feel 70%. It will dip sometimes. But, for the most part, I can stay functioning at that 70% without “paying for it” despite a dip in how I feel.

Energy crashes/Post-exertional malaise

• 2018- Frequent and they would take several days to bounce back from.
• 2020- Occasional and they take less than a day to bounce back from.

Cycles

• 2018- Menorrhagia, oligomenorrhea.
• 2020- I alternated between what is listed above and normal early in the year, but the last few cycles have been normal.

Noise/commotion sensitivity

• 2018- Sensitive to always.
• 2020- This only bothers me if I am in a crash and it is still less bothersome at that.

Muscle weakness

• 2018- Useless noodle body. My hip flexors were especially weak- this happened at the onset of the illness. I became so weak in the year before I was diagnosed that my husband would have to carry me up the stairs.
• 2020- I am much stronger and feel like an athlete again. My hip flexors still struggle despite me working on this consistently, though.

Vestibular ocular reflex issues

• 2018- My vision was “off” in a way that is hard to explain. I used to explain it like a drunk feeling, but not exactly like that. Another way to explain is like in That 70’s Show when Eric would talk to his parents after he came up from the basement and the walls would swirl behind them, but to a much lesser degree.

• 2020- I do not notice this at all anymore. Three cheers for physical therapy!

Heat and cold intolerance

• 2018- Basically like a cold-blooded lizard.
• 2020- I kicked butt with the heat this summer. I am not cold intolerant, but I still despise it. My google searches for “warm places to live” have gone up exponentially this month.

Acute illness and sinus infections

• 2018- Every time I would get sick (which was constantly), it would turn into a sinus infection.
• 2020- I haven’t gotten a sinus infection in about 10 months. I also have only gotten sick once in that time period. I believe COVID-19 measures are the largest factor in this.

Blood pooling

• 2018- I would occasionally notice where my feet would have the blood pooling in them. Or, I would lay with my legs up and my feet and lower legs would go white.
• 2020- I can’t remember the last time I noticed this.

Cold hands and feet

• 2018- Ice, ice, baby.
• 2020- Vanilla ice, ice baby. Too cold, too cold. They are my secret weapon when my husband is looking a little too comfortable.

Exercise tolerance

• 2018- I could tolerate 3 minutes of slow, easy movement.
• 2020- I exercise for 30-60 minutes every day doing: yoga, walking, dance cardio, and HIIT workouts.

Dry eyes

• 2018- No problems.
• 2019- Dry eye syndrome and blepharitis.
• 2020- Prone to the issues above, but it’s under control/treated.

Headache

• 2018- I used to get a sensation of pressure around the base of my head. It was a different than a headache, but I don’t know what to call it.
• 2020- I do not notice this anymore.

Sleep

• 2018- Rare insomnia.
• 2020- No sleep problems.

As you can see, some symptoms are resolved or significantly improved. I still struggle daily and life is not normal. I am fighting for more normalcy and to be able to function like my peers. Although I am not there yet, I am very encouraged by how far I have come and I have a lot of hope for the future.

How has your POTS or ME/CFS progressed over the years?

Disclaimer: I am not a medical professional. Statements on this site are not meant to be taken as medical advice. These statements reflect my personal experiences having mild-ish post-viral POTS and ME. Due to the wide spectrum of these diseases, comorbidities, and everyone being different, your experiences may be very different than mine.

Note: If you post a comment, this site does NOT have a feature to notify you of responses to your comment. I have not found a good solution for that yet. However, I usually respond to every comment in a timely manner, so be sure to check back.