Have I been barking up the wrong autonomic nervous system disorder tree?
I am 28 with Fibromyalgia (diagnosed one year ago).
My symptoms have been gradually worsening and subsequently my quality of life has proceeded to decline. Christmas was rough but I put it down to work stress, and this year has been horrendous so far.
Since January I noticed I became incredibly lightheaded when standing. My fatigue was worse than ever, my brain fog makes processing information almost impossible some days. I put it all down to Fibro.
At the end of Feb everything came to a head, I woke up with a racing heart, upset stomach and debilitating nausea. It didn’t calm down for hours. I then got a visible band and noticed my heart rate is much higher than it used to be, and these moments of lightheadedness were accompanied by a big jump in my heart rate (often sustained as long as I kept standing or moving).
After lengthy research I thought it could be POTS. I’ve already got Fibro which is essentially a dysfunctional nervous system, and I’ve got Hypermobility and AuDHD… some illnesses work like some strange Venn diagram, often overlapping and coinciding with one another.
I saw a cardiologist, I’ve had bloods (fine), I’ve had an ECG (fine), a Holter (I proceeded to have the best 72hrs of my year, so fine) and I had a “POTS test” (5mins laying, 5mins standing). I failed the test as my heart decided to jump up by 20, not 30.
The cardiologist has given me some beta-blockers to try and reduce my overall heart rate, so hopefully my symptoms will improve. He did say it is ‘possible, despite not meeting the criteria today’, it is ‘definitively autonomic’, and wants to see me again in 3 months.
I’ve been signed off work now since the beginning of March, with immense pressure (borderline harassment) from my boss to return. I’m bedridden most days and my fatigue is worse than ever - I literally cannot function. Showering is not an option anymore as I get severe spotty vision and get so dizzy and nauseated after (and have to just go back to bed), I get weird red splotches all over my legs when I get out too. I have to have my baths luke warm which is not nice - hot baths were one of the only things that soothed my fibro. I cannot begin to convey how bone tired I am 24/7.
The lack of answer / diagnosis has hit me so hard I’ve been crying for hours and I feel like a fraud.
Has anyone else been through this? Please tell me there’s hope on the other side. I’m desperate.