Hi everyone, I wanted to share this in case it helps, particularly people newly doagnosed and wondering what to do.
Short summary: I was diagnosed with me/CFS in 2018 but have only recently been diagnosed with POTS. Addressing the POTS with medication has given me my most substantial improvement yet. I have been vaguely aware that I might have POTS for years but I just lumped it in with the me/cfs. I wish that I had investigated it sooner.
I have found it unpleasant / hard to be sitting or standing upright since my symptoms started. Initially I just lumped it in with the fatigue (my main symptom) but more recently I have been seeing a cardiologist.
He diagnosed me with POTS and has been trialling various medications. They have helped my symptoms enormously, and I wish I had pursued this sooner.
The key thing I wanted to share is that POTS has some treatments available which have a good chance of improving your symptoms, so if you suspect you might have it then you can:
This will be old news to many of you, but I hope it helps someone 🙏
It links to something else I've been thinking about recently which is to separate out ones symptoms in order to get more directed help from doctors. For example, when I went to see doctors telling them I had me/CFS and I needed to lie down a lot, its easy for them to think "well of course you need to lie down a lot, you have fatigue". But if I had just told them I need to lie down a lot and don't tolerate standing, it might have triggered some fruitful investigations.
Short summary: I was diagnosed with me/CFS in 2018 but have only recently been diagnosed with POTS. Addressing the POTS with medication has given me my most substantial improvement yet. I have been vaguely aware that I might have POTS for years but I just lumped it in with the me/cfs. I wish that I had investigated it sooner.
I have found it unpleasant / hard to be sitting or standing upright since my symptoms started. Initially I just lumped it in with the fatigue (my main symptom) but more recently I have been seeing a cardiologist.
He diagnosed me with POTS and has been trialling various medications. They have helped my symptoms enormously, and I wish I had pursued this sooner.
The key thing I wanted to share is that POTS has some treatments available which have a good chance of improving your symptoms, so if you suspect you might have it then you can:
- Do a NASA lean test at home - it's quick and only requires some sort of heart rate monitor (blood pressure monitor is not essential). Info here: https://solvecfs.org/wp-content/uploads/2021/07/10-Minute-NASA-Lean-Test-Clinicians.pdf
- If it suggests POTS then definitely try and see a POTS-literate cardiologist. In the meantime you can also do a few things that might help:
- Increase your salt intake - I just put some in my water, and add lots to my food.
- Drink plenty of water along with the salt. The aim is to increase the amount of water in your bloodstream, which increases blood volume.
- Try compression clothing. You can get medical tights, or sports ones from brands like skins, 2XU (get their highest compression level). I have also found an abdominal binder to be the most effective, it makes a huge difference. You can get them online, often they're used for post surgery recovery.
This will be old news to many of you, but I hope it helps someone 🙏
It links to something else I've been thinking about recently which is to separate out ones symptoms in order to get more directed help from doctors. For example, when I went to see doctors telling them I had me/CFS and I needed to lie down a lot, its easy for them to think "well of course you need to lie down a lot, you have fatigue". But if I had just told them I need to lie down a lot and don't tolerate standing, it might have triggered some fruitful investigations.
