For the first time in seventeen months, I was able to exercise without long covid ‘fiery lungs’
How an exercise test and a high dose of colchicine led to a long covid breakthrough
To give you some context about my situation:
- My pre-covid diagnosis: no diagnosis / symptoms except low blood pressure
- My post-covid diagnosis: blood clots in right lung which dissolved thanks to blood thinners, hypoperfusion defect in right lung (ongoing blood thinners), post-covid pericarditis, gas transfer equivalent to a lung disease patient, reflex sinus tachycardia and orthostatic intolerance, plus severe iron deficiency, insomnia and acid reflux (latter three have now resolved).
- Medication: Apixaban 2.5 twice per day and colchicine 500micrograms x3 per day (increased to three doses from two on the 4th Aug).
- Biggest symptoms: shortness of breath followed by ‘fiery lungs’ / ‘storm’ ravaging through my chest and heart attack mimicking symptoms (heart pain, heavy, numb, tingling left arm)- both triggered by talking and walking.
- Pre-July I was largely house bound with a severely restricted ability to walk and talk.
- Post-July, colchicine changed my ability to walk and talk. In July, I was able to walk slowly for twenty minutes once per week (if I’d stayed in silence for the day).
- My colchicine dose was increased from half a tablet per day to, one, two and eventually three tablets per day from the 4th August.
On the 1st September, I had a cardiopulmonary exercise test (CPET) at The Royal Brompton Hospital.
A cardiopulmonary exercise test (CPET) lets your doctor see how your lungs, heart and muscles react together when you exercise.
My blood specialist, Dr Laura Price, wanted to see if I had “pulmonary vascular limitation phenotype on exercise”.
She also wants to take me off the blood thinners but before doing this, she wanted to check for pulmonary hypertension (high pressure in the arteries of the lungs).
Anxiety inducing…
Only long haulers and those suffering from chronic conditions such as ME will understand the anxiety of attempting any form of walking/exercise because we just don’t know how our bodies will react — it’s always a delayed reaction.
When I say ‘exercise’, I’m referring to just being able to walk around the block.
I just never know ‘what I’m going to get’ so I have to stick within a very strict window of severely limited activity.
So an exercise bike was the most amount of exercise I’d attempted this year.
Sometimes, I can feel ‘okay’ whilst walking — I’m short of breath but that’s it, only to experience something inflamed, ‘ripping through my lungs’ and heart pain hours later.
I couldn’t go through that again.
That said, I was very grateful to be having this test thanks to the determination of my specialists to continue to search for answers.
I also hadn’t tested any exercise whilst taking three doses of colchicine per day. On two doses of colchicine, I experienced improvement, however it soon plateaued and the ‘fiery lungs were back’.
On one hand, I needed to test what my body could do on three doses of colchicine. On the other, I was terrified that the ‘fiery storm’ would rear it’s ugly head again and made me feel like I was dying (again) — when that happened, no one can help me — not even A&E.
Here’s what happened in the CPET:
Once again, the Royal Brompton staff were phenomenal — the respiratory physiotherapy team were full of kindness and compassion and really helped to ease my anxiety.
They advised that the test would be guided by me and to only cycle as much as I could manage.
This is what they used during the test:
- X2 blood tests from my ear to measure 02 and co2 before and after exercise
- ECG
- Spirometry — 98%
- Pulse oximeter
- Blood pressure machine
How did the test go?
- I managed approx 5–10 minutes on the bike!
- I felt very short of breath during and after but didn’t experience fiery lungs or heart pain during it.
- Towards the end, I felt like I’d been hit by a lorry.
- I explained that my symptoms appear as a delayed response to any activity up to an hour or a few hours later.
For me, the ‘real’ test wasn’t how I would perform during the test, it was how my body would react hours afterwards — when there was no doctors around and no one could help me whilst experiencing heart pain and something ravaging my lungs. This was my norm for seventeen months.
How did my results look?
The pulmonary hypertension research specialist advised that my results didn’t appear to show any sign of pulmonary hypertension (HOORAY!).
Though, this confuses the medical mystery even more.
He informed me that he’d need to analyse the formal report and he’d send me a letter, which I’m awaiting.
What were my symptoms after the test?
I felt like I’d been hit by a lorry.
Muscle fatigue, aching.
Four hours later I experienced mild heart pain…
It was unsurprising, though surprising that the pain was only mild, considering the degree of exercise!
It was intermittent and lasted for 1hr 15 minutes.
I then took a late lunchtime dose of colchicine and it miraculously wore off!
It felt like a massive breakthrough!
But I didn’t want to get too excited — I’d experienced the ‘false hope’ of feeling better and then feeling worse for the past seventeen months. I knew it could still go either way at this point…
I spoke too soon — the mild heart pain twangs returned around 10pm.
They came back intermittently when I was tying my hair up — whenever I lift my arm up after having talked for too long or moved for too long, it always aggravates my heart. In this case, the exercise test was the trigger.
I felt more short of breath than usual.
The day after the test: aching, stabbing feeling in my back
Muscle fatigue, aching.
Stabbing feeling in my back - I couldn’t stand up properly.
Unusual mental fatigue whilst sitting down. I couldn’t keep my eyes open when reading and writing, which I didn’t usually suffer from (unless I had been talking or walking past my limited boundary), which I hadn’t.
Window of tolerance for speaking impacted — noticeably more short of breath.
A few heart ache twangs.
Two days after the test: intermittent heart pain
Same as above.
Hot left armpit and chest.
More heart ache twangs.
Plus worse mental fatigue.
Three-six days after the test: can’t lift up left arm, aching left armpit
I started my morning stretches again (mostly on my back).
Lying down, I did a full body stretch (which I normally do), although this time, I experienced stabbing pains in my heart, which quickly spread to my left arm. Strange, I thought — yet also not strange, because it was the after effects of the exercise test.
I wanted to see what would happen if I just lifted my right arm and as expected, nothing happened. Though, when I lifted my left arm above my head, that’s when the pains returned.
Plus a hot and aching left armpit.
I couldn’t lift up my left arm properly for three days, otherwise the heart pain would return (even slowly lifting my arm to have a shower). This is tough to deal with.
My heart pain seemed to go away after day six but then I got the flu for a week (you can’t make this up). This brought on a pretty aggressive chesty cough, which triggered (you guessed it), the heart pain, again…
If I experience any subtle heart pain, anything is a catalyst and makes it worse (stress, walking, talking, coughing etc).
Dr Lyon agreed that I could increase my colchicine dose to four per day but I couldn’t risk any side effects on top of my current symptoms. Therefore, I decided to ride it out, staying in silence and not walking.
Summary of heart pain
The intermittent heart pain lasted for six days from the day that I took the test plus another five days from the force of coughing from the flu.
Just like countless other times, the consecutive pattern is:
- The heart pain worsens over a few days and lasts up to a week
- The aching spreads to my left armpit, causing a burning sensation and fatigue.
- I’m then unable to lift up my left arm, otherwise I feel a sharp stabbing pain in my heart.
- If I don’t stop walking and talking, the aching spreads down my left arm and causes a tingling, numb and heavy feeling in my arm.
What was the huge breakthrough?
Despite the lingering heart pain, this was the first time that I’d been able to exercise without experiencing a delayed reaction of ‘fiery lungs’ or worse, a ‘storm’!!!!!!!!!!!!!
Can you feel my excitement!? Only long haulers with fiery lungs will understand this.
This was by far, my most significant progress to date *happy tears*.
Other observations:
1. Heart pain was surprisingly mild (unlike the severe episode in April when I ended up in A&E).
2. I took colchicine after the heart pain and it seemed to wear off.
3. It was the first time that I had tested any form of exercise whilst taking three tablets per day. In comparison, I experienced heart pain after basic yoga stretches and talking too much when I took two tablets per day. Dr Lyon mentioned that other patients experienced a huge change when increasing their dose from two to three or four.
The first breakthrough happened at sixteen months:
The first breakthrough happened when I first started taking colchicine on the 27th June. Within a week, I was able to talk for hours and walk around with no fiery lungs. I felt normal! It lasted for a few weeks but unfortunately I plateaued again..
What’s next?
It feels like colchicine acts like a fire extinguisher against the ‘fire’ inside my chest but it seems to plateau.
All I know is that the more Dr Lyon increases my colchicine dose, the more it’s ‘putting out this inflammation inside my body’. For how long, we don’t know. Will I plateau again? Time will tell…
Possibly four doses per day
Dr Lyon has advised that I can increase my dose to four tablets per day. I haven’t done this yet as I didn’t want to risk any side effects alongside having the flu and heart pain post CPET but in the next few weeks I will — let’s see what effect it has.
I’m waiting for the report from the exercise test and then we’ll know more.
Most long haulers seem to have extreme side effects
Twenty-seven fellow long haulers have messaged me to share that they tried colchicine but they couldn’t tolerate it at all (bad gastro side effects) — only six others I know have been able to tolerate it, as well as me.
I’m feeling very lucky that I’ve had no side effects at all.
My next test:
My next test is on the 24th September: a bubble echocardiogram to check for a ‘hole in my heart’. I have the worst gas transfer out of 130+ patients in the clinic — it’s barely improving and my specialists don’t understand why. They want to rule out a hole in the heart (apparently small holes aren’t even visible on a normal echocardiogram — who knew!?).
Nothing makes sense in the world of long covid.
All I know is that colchicine is the only remedy in seventeen months that’s helped me to simultaneously increase my ability to walk and talk and ‘put out’ my fiery lungs.
That means, it can help others too.
For the latest insights about my recovery, follow me on Instagram: @Jasminehayer_
