Sara-Syndrome (or possibly POTS)

{from my shoot for the OBJECT lookbook}

My whole life I’ve been weird. I don’t just mean socially (although, yes), but physically too – I’ve always known I am fundamentally different to other people, and admonished myself for not conforming better.

For example, I am always too hot. I overheat so easily that I routinely sleep naked, with a window open, under a towel, whatever the weather. I wash my feet & ankles in cold water at the end of a day just to cool them down. I find staying at other people’s houses in winter kind of difficult, because the heating is always on and it makes me feel dizzy or nauseous or hazy.

Weird, right? Given that it’s pretty much an English occupation to complain about the cold and huddle by a radiator, I’m regarded with understandable suspicion as I fan myself in a bikini by the Christmas tree. I’m just not the same.

Then there’s the fatigue. Over the years I’ve talked with my doctor repeatedly on this subject, convinced it wasn’t normal for a twenty-something to be falling asleep whilst driving, to choose naps over socialising, shopping or shows.
If you woke me at 7am on an average morning and offered a choice between Β£1mil or another hour’s sleep, I would always, always choose slumber. I mean, I’d regret it later, of course – I’m not crazy – but when sleep has me in its grasp, it’s a non-negotiable need.

On bad days, simple tasks like cooking dinner or carrying Orla leave me weak-legged and faint. I will always choose to lie down instead of sitting –  we bought a day bed for our living room instead of a sofa because of this. A morning’s walk or work wipes me out for the rest of the day, and Orla knows that past 2pm she’ll probably find me in upstairs in bed.

Now I’ve spelled it out like this it absolutely sounds like a problem, but in reality, it’s much less cut and dry. I can go days or weeks without struggling too much. When all my blood tests showed as normal for anaemia etc, I assumed that I was simply pathetically lazy.  I’m pretty awesome at self criticism so it was easy to accept this reality; that when I crawled into bed after baking a cake, or flaked out on walks in favour of napping in the car, I was just being a shitty, lazy person. This fits well in the general inner narrative of my head. I’m used to this sort of label.

Recently I stumbled across an article about POTS, an autonomic nervous disorder that means your blood doesn’t flow around your body properly when you’re standing. It causes your heart to race and your brain to be short on oxygen, resulting in a long list of symptoms, almost all of which I have.

I idly began to check my pulse from time to time, & discovered an amazing secret: my heartbeat regularly hikes up to as much as 170 bpm during normal, non-strenuous daily activity. Lying on the sofa, it can be around 100, 120, 130.
 To put that into context, Rory’s pulse never really goes about 50bpm. 40-90 is roughly normal for adults, and 230 is the point at which you basically explode and die or something similar. This is probably why aerobic activity makes me feel like I’m walking through a brick wall, and is almost definitely why sometimes I feel like I’m having a panic attack without the actual panic. My body feels like it’s done a 100m sprint when I make a cup of tea, & just possibly, those times when I can’t keep my eyes open are linked to the fact that my blood is all gathered at my (overly warm, need a cold wash) feet. 

Amazing, right?

POTS isn’t a controversial diagnosis – it’s a fully recognised condition and is diagnosed with a simple, easy test. The problem is it’s also massively under-diagnosed and unknown, so I had to convince my doctor to google it before he could even think about referring me for tests.

I’m waiting for an appointment with a cardiologist in November who may or may not be the right person to help me work it out. Perhaps it’s not POTS at all, and I’m a raging hypochondriac, but the evidence of my heart rate is finally a solid, undeniably fact that I can’t guilt or dismiss my way out of. 
Maybe finally I’m on track to a solution, and becoming a little bit more normal. I can’t wait to tell cardboard Luke πŸ˜‰πŸ˜†.

Are any of you dealing with a chronic condition? I have a feeling many of us are and just don’t tend to talk about it…

 

 

  • Oh my goodness, yes! I’m the opposite on the warmth front, but the weariness, yes!! I’ve always had massive guilt about it, and attempted to put it down to limited kidney function. On some occasions, it’s down to my introvert tendencies & the need to recover, but otherwise, just guilt that I need to sleep! I’ve mentioned it numerous times at the Dr’s but always been brushed off!
    Hope you get some answers & solutions x

    • Eep! Feeling too cold is also a part of POTS – it’s basically just poor thermo-regulation, one way or another. Maybe you should be checking your pulse too?
      The introvert thing definitely applies to me too, though. It took me far too long in life to properly understand that.
      I wonder at so many doctors dismissing fatigue in patients. I suppose it’s because it’s a common complaint, and we’re all tired – plus there’s generally nothing they can do. Yet I look at how much energy my friends and Rory have and something definitely seems amiss…

      • Ooo ok, I’m going to have to look into this more! All my bloods always come back normal too…I’ll be checking my BP!!
        Yes, it’s when everyone’s still going I struggle!

  • trona

    it is an absolute nightmare having something wrong but not a diagnosis, I have a family member who the doctors know there’s something with the autoimmune system but they just don’t *know* exactly what it is. I actually think I have the same thing but it’s masked by the symptoms I have associated with chronic pain. So yeah, anyway, I hope you get a diagnosis and treatment you need!

    • Gah, Trona, that sounds nightmarish. I wish we could just book a session with Dr House and refuse to leave until he gives us some sort of explanation. I think doctors often think people are just looking for a solution, when really all I want to know is I’m not defective! Stay well xx

      • This Dr House comment really made me laugh Sara! I often think the same. I was diagnosed with hypothyroidism at the age of 24, just after my teaching NQT year and following a series of throat infections, sinus infections, and weird rashes all over my body. I’ve probably had it all my life. Although I take medication I feel like they’ve never really got it properly controlled I have good months and then sudden crashes where I get ill/put on weight/generally feel wiped out. But now I’ve begun having chronic pain on the right side of my body, no pain on the left side at all, so here we go again with the investigations, I’m just praying it’s nothing awful but after 12 months of blood tests, gynae appointments, seeing an endocrinologist and so on still no answers! I hope you get your answer soon x

  • Paula Solar

    I completely understand what you’re going through. Four years ago I spent a whole year doing test after test, X-rays, trying out several treatments… etc until they found out that I had two conditions. One was more logical for me as it all began with unbearable back pain (like I had to sit in a 90ΒΊ angle position in order to sleep) and the other one hypothyroidism was discovered “by chance” in one of the blood tests. So, four years later I can confirm that the nodule (benign thankfully) that caused my hypothyroiddsm is at bay and that my back is more or less stable (though it will need surgery eventually, when the pain comes back).

    So my advice is never ever take anything for granted in health matters, if you are not convinced with your diagnosis or your doctor seems to be making guesses, please insist, ask for a second opinion, do research, ask people going through the same stuff that you’re going through, never give up, make questions as many times and as many people as you need. This is what I’ve learned in those 4 years, and counting.

    Good luck and best of wishes

  • Janice Issitt

    pretty much all that you have described here has been my iife for over a year due to the menopause. You can’t underestimate how awful it can be, and I’ve been having symptoms for years before the actual menopause kicked in for it’s last flush, pun intended. The hot sweaty overheating, the flushes which are like some weird pins and needles, tiredness beyond anything, having to rest for days after a day when Ive had to walk for a few hours, acheing joints, etc etc plus enormous weight gain, mostly around my waist. Happy to say I’m now coming out the other side but it is bloomin orrible to feel so shit all the time. I completely sympathise and hope you get it sorted, while I doubt yours is the same it’s worth getting your hormones tested regularly and I feel that menopause isn’t talked about enough. Love J x

    • I’m pretty sure if men went through the menopause, we’d hear far more about it. I read some stats recently about how women are ignored for longer in A&E with acute chest pain because it’s usually assumed they’re “just making a big deal out of it”.
      Sounds like you’ve been through an awful time, and pleased to hear you’re coming out the other side. Women definitely get the shit end of the stick when it comes to hormones and reproduction!

  • Kate X Design

    Really interesting Sara. This was me in my twenties. Always too hot, always so tired. Fainting was an issue if I was stuck standing in a queue for too long while wearing a winter coat. Twenty years on things are better. I drink lots of water and sleep with my head elevated on two pillows, although I’m still always fighting the urge to nap and I hate standing for too long. I think having the kids may have altered my body for the better in regards to this? My blood pressure went from low to normal because of pregnancy. Of course now its all the peri-menopause nonsense which is a whole other kettle of fish I could do without!

    • Wow, that’s fascinating Kate! Drinking water and elevating your extremities is all good advice for POTS – combined with your BP issues it definitely sounds like you could be a candidate for it! I wonder if whatever was happening with you has improved with age, or if you’ve just got better at managing and doing the things that help? What do you think?
      Stay well! xx

      • Kate X Design

        Having normal BP has been the biggest improvement but also just being kinder to myself. Going to bed early, (or even the same time as the kids!) having a nap, or spacing activities out instead of one super busy day. It’s not being lazy or indulgent, just self care to keep me going for my family.

  • I, like 25% of American females, have a thyroid disorder. It’s quite low-grade now though it’ll probably eventually worsen. Thankfully, the only symptoms I currently have are a slightly slower metabolism and slightly-less-thick-than-it-used-to-be hair. But any medical diagnosis is a bummer, right?

    That being said, I hope you find out what’s wrong! It’d certainly be a relief to put a name to it, right?

    • 25%!? Wow – that’s so much higher than I would have guessed! I’m sorry you’re dealing with a health disorder too. It’s astonishing once you actually start talking about this stuff how many people are quietly, determinedly working through these obstacles. Fingers crossed yours stays low grade – although less-thick-hair is defo a legit complaint!

      But as you say – a diagnosis would be a relief at this stage. I used to hear parents of kids I worked with say this, that they wanted a diagnosis of autism or a specific syndrome, & I never understood. It’s just a label, it doesn’t change anything, right? But of course, older & wiser, I can see how much guilt and doubt and shame is built into these sorts of things, and how much putting a proper name to something can depersonalise all of that.

      Also, seeing as I’ve read your blog for, oh, forever, I still get a bit fangirlish when you engage with something I do πŸ˜‰ xx

  • Lucy Shipley

    So my Mum is an acupuncturist, and while I’m a big sceptic in other areas of my life (ffs, I love science) I’ve had enough eerie positive experiences with it to be saying it might be worth investigating who your local British Acupuncture Council qualified therapist is. Mum actually studied in York- you need four years plus many practice hours. She always says that Western medicine is incredible when there is a clear issue or emergency, but struggles to diagnose and manage chronic problems. I never know if it’s psychosomatic because patients finally feel someone is listening to them but perhaps worth a go.

    • Oh interesting! I love your stance on science and treading that line – totally relate. As it happens my GP is a *big* advocate of acupuncture and has recommended it to me too – he even got out some needles of the same size to try and convince me! πŸ™ˆπŸ˜†
      I might do some research – I’m up for trying anything that might work, and I think often half the solution with fatigue is psychological anyway, simply because it’s usually the only thing we can control in that regard. If that makes any sense at all!
      Anyway, thanks for the food for thought, & the background info. Really interesting! x

      • Lucy Shipley

        Thanks for the reply- just to say if you are nervous with needles there is a lot you can do with pressure, moxa and this weird electric thing… Good luck xx

  • Never heard of POTS, sounds like it might be the answer you’ve been looking for though. Hope you get that solved, sweetie! – I have gastritis caused by stress, sigh… oh, and can’t party because by 7 pm I’m always falling sleep wherever I’m, like a grandma! Does that count?! πŸ˜† xx

    • I hear ya on that 7pm thing! But hey, pyjamas and novels and cups of tea are my idea of a good party anyway! ❀️

  • Wow, resp failure is tough! Sending lots of love & strength to you. Thanks for the kind wishes! x

  • Kate Phoenix

    Oh Sara! I think the lady behind Deliously Ella has POTS. She might have a helpful blog post or two about it. When it was a teenager I was constantly exhausted and weighted not much over 5st and it took ages to get a diagnosis that it was something as simple as coeliac disease. Can be really frustrating, I hope you find a solution soon!

  • Dioni Kal

    Ξ—ave you checked your thyroid? It might be the cause of many of these symptoms too… :)

  • “Just don’t tend to talk about it.” Over at my blog, it’s aaaall I talk about! Well, I also throw in some food and travel but predominantly I talk about unrecognised, misunderstood, poorly funded chronic pain conditions because I have had one for the last eight years. I write ‘A Life Less Physical’ for exactly the reason you’ve posted this – because it’s all a bit weird. It’s not a big deal, life goes on, but it’s also a MASSIVE deal because it changes every little decision you make in day-to-day life… like choosing an hour’s sleep of Β£1m. (I’m with you there, by the way.)

    Good luck with the diagnosis. It’s the hardest part of invisible illnesses, but at least your possible condition has a clear pathology with a clear treatment plan. Wishing you all the luck, and I hope you get some answers. I’m a firm believer that once you know what you’re dealing with, it’s a whole lot easier to cope.

    Also, um, maybe lie down more?!

  • Alexandra P. Hobson

    After more than 2 years without a diagnose, progressively worsening and accumulating over 30 different symptoms, I was finally diagnosed this year with Chronic Lyme Disease and several other co infections. Lyme Disease is a bacterial infection, usually transmitted by a tick. Initial signs include flu-like symptoms, fever, muscle pain, light and sound sensitivity, stiff neck and fatigue. Left untreated, the infection can spread anywhere in the body, leading to many more symptoms and often neurological problems. Late or chronic symptoms include joint pain, peripheral neuropathy, paralysis of facial muscles (Bell’s palsy), cognitive problems such as memory issues, word finding difficulties and β€˜brain fog’, headaches/migraines, heart problems, insomnia, extreme fatigue, autonomic nervous system dysfunction, dizziness, anxiety and depression. The immune system is so suppressed it technically doesn’t exists. The disease is called the great imitator as it’s often misdiagnosed for MS, Lupus, Alzheimer’s, Parkinson’s, CFS, fibromyalgia among others. Testing methods in the UK are extremely unreliable and there aren’t Lyme literate doctors. The official NHS guidelines state that Lyme is treated with doxycycline for 2 to 4 weeks while in reality if the illness has become chronic one needs years of complex treatment including cocktails of different antibiotics, herbals, antimicrobials, antiprotozoals, various supplements, serious detox program, diet and lifestyle change. The best outcome is remission when the immune system is strong enough to keep you asymptomatic. I got tested in Germany and now I’m treating it privately and seeing a team of lyme specialists abroad.

    I’m writing this whole lecture/essay mostly to say don’t you ever mistrust your gut and always, always listen to your body. If I had stopped searching for answers and googling, I wouldn’t have had my diagnose, I could’ve even been dead because Lyme is fatal if not treated. No doctors here helped me, I myself realised that I have Lyme and when I finally got tested the results were so high and showed so many other problems that it was the most overwhelming moment in my life, and yet the biggest relief, because nothing was worse than not knowing. I’ve promised myself I’ll never ever compromise again with my intuition and inner voice. The second I took my health in my own hands and started listening to my body I commenced my slow recovery. I’ve been called hypochondriac by GPs too, don’t let this stop you. Only you know how you feel and if something is wrong. I truly hope you’ll find answers soon and things will start improving. In the meantime keep on posting so I have something beautiful to look at and read while in bed. Best of luck, Sara! Xx

  • I am get tired really easily, and it’s not just normal tired, but exhausted tired and I can normally stay in bed all day – no not being lazy, but I literally feel like I have absolutely no energy. I am a diabetic but somehow, I’ve always felt that this fatigue isn’t related to the diabetes. I have aches and pains that I have always talked about with my doctor. My doctor has always attributed it to diabetes (my blood sugar control isn’t the best, to be honest). Because my doctor was on maternity leave, I saw someone else and they did tests that my normal GP hadn’t. This doctor listened to me and ordered tests. He found abnormalities in my test results and I’ve seen a consultant. I feel a lot closer to a diagnosis because someone has actually listened to me now and they’ve not actually disregarded my aches and pains. I am currently doped up on pain meds, but I’m happy that someone has actually listened. Sometimes that’s all that someone needs to do, listen and find out that we do know what’s going on in our bodies.

    On a less selfish note, I hope you’re feeling better! :)

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  • Just read this post Sara as I was popping around your articles. First, your photos are some of the most beautiful I have ever seen ( I’m sure you get this ALL the time, but, there it is). I saw the word ‘chronic’ and zeroed in. Congrats on your POTS diag.! Only those of us with chronic ‘invisible’ illness understand the relief felt when we become ‘official’ in knowing there has been something ‘wrong’ with our bodies and/or minds for a long time. My website is dedicated to the care & encouragement of those living with chronic illness, so of course I had to leave a comment and give a shout out from ‘across the pond’ to one of my tribe! β™₯