Hello again 🙂 hope you’re all doing well.
Getting back on topic with my health issues for today’s post; all about a new diagnosis I received back in 2012. As you hopefully already know as you’ve read past posts, you’ll remember that I was initially diagnosed with M.E back in early 2011. They tested for pretty much everything, found nothing, so they left it as M.E or ‘chronic fatigue syndrome’. As I began to make new friends in the spoonie circle, it became apparent to some of them that my symptoms were very much tying in with another condition: something called: POTS (Postural Orthostatic Tachycardia Syndrome)…
Don’t worry. I hadn’t heard of it either. In true Kelsey style, let me grab some info from elsewhere.
Orthostatic intolerance is a term that is sometimes used to describe symptoms of POTS. It means symptoms that occur on standing and are relieved by lying down. In addition to heart rate and blood pressure, other bodily functions that are regulated by the autonomic nervous system can be affected
Well doesn’t that sound like fun? Still want to read more? Here’s a symptom list from the same website (potsuk.org)…oh and for a bit of extra understanding of my symptoms, all the ones I have experienced will be in bold.
– Dizziness or light-headedness or presyncope (almost fainting)
– Syncope (fainting or blackouts)
– Tiredness or weakness
– Brain fog
– Shortness of breath
– Chest pain
– Excessive or patchy reduced sweating
– Gut problems
– Poor sleep
– Visual problems
– Bladder problems
And here’s a list of triggers that can worsen symptoms:
– Excess heat
– After eating; especially refined carbohydrate eg sugar, white flour
– Speed of positional change; don’t stand up quickly
– Time of day (may be worse in the morning, especially rising after wakening)
-Deconditioning or prolonged bed rest
– Exercise (occasional exercise can cause one to feel worse, but an ongoing exercise program can improve symptoms)
The next step was approaching my GP. I’d been told that it was unlikely my doctor had even heard of POTS, so I wasn’t holding my breath. But actually, after telling her about it, my symptoms etc and her own bit of research, she agreed that it was worth me being referred for tests elsewhere. HALLELUJAH!! I know it’s not that easy for everyone but I was so grateful. The possibility of getting a diagnosis that could be medically proven was genuinely exciting. There would be no way that anyone could dispute the fact that I was unwell or argue that the diagnosis was wrong.
I’ll continue this in another post very soon where I’ll be telling you about the diagnosis process.