Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

I wrote about my visit to the cardiologist last week, and as an Ehlers Danlos bendy with chronic pain and other strange symptoms including fainting, I found this article by a UK based GP to be easy to read and understand.  At the moment I’m not sure what I will be labelled with, but the more I read the more i am able to join the dots on a variety of symptoms from over the years – for instance the strange discolouration in my feet and calves as a teenager that looked like fluid pooling, for which my GP prescribed circulation tablets.  Just last week during the hot weather, every time I let my hands lower below heart level they turned purple, then navy whilst swelling with bumps resembling varicose veins!  See lovely pictures of my swollen hands – fortunately I was able to pull all my rings off before it was too late!File 26-08-2016, 12 56 25 File 26-08-2016, 12 56 52


Our series continues as GP Dr Lesley Kavi discusses this lesser-known condition.

“Recognising disorders of the autonomic nervous system is a challenge for GPs. Symptoms can be subtle, non-specific and mimic other conditions (1). Yet dysautonomia can be a source of considerable disability and poor quality of life for patients. The postural tachycardia syndrome is no exception (2)”

See full article at Source: Obscure diagnosis – postural tachycardia syndrome | Feature | Pulse Today

NHS trials for cannabis vape pens in chronic pain

I’ve just read this piece on Vice.com that will interest all UK chronic pain spoonies! The NHS is trialling  a cannabis based vape pen manufactured by MediPen……the journalist who tried it may not have chronic pain and may have enjoyed blowing vapour over his colleague, but the fact that the NHS is doing trials will hopefully be able to give some credence to the benefits of this CBD device.  In case you aren’t sure – CBD doesn’t have the psychoactive compounds normally associated with “weed”!

The full article can be found here:



Cardiology, POTS & Some Enchanted Entertainment

This last week has been a challenge, as I’ve really tried to carry on as a normal mum during the school holidays – and have used far too many spoons. So much for pacing myself.  Those of you who follow my facebook page will already know that I went for afternoon tea with my mum and some friends at the very posh Cannizaro Park, Wimbledon.  We were c
elebrating the 80th birthday of a family friend and I was delighted to be able to enjoy the afternoon – and to be able to wear a dress that I haven’t been able to get in to for a while.

So to those all too frequent swoony moments (no hunks involved sadly) and one story that File 24-08-2016, 17 01 22I put on facebook.  The weather has been beautiful, but has left me with massive dizzy spells and faints – I even managed a fantastic one during a short dog
walk the other day! I knew I felt rough, so Duncan called home for a teenager to come and help get me along the road. By the time Olly came wandering along I was just coming round on the pavement….what do you think he did? Straight to the dog to check he was ok!! Forget the blasted dog, what about your mother sprawled on the pavement?? Dunc says I’m not allowed out again…




This week has included a hospital trip to see a new consultant in a different speciality – cardiology.  The neurologist had recommended that I be seen as she felt, along with me, that the faints are not epilepsy related but probably a dysautonomia condition.  It probably wasn’t a bad thing that it was a warm day and as I wasn’t seen until late afternoon, I was feeling pretty rough.  I was lightheaded and massively fatigued.  Twelve lead ECG first with a new cardiographer and then the usual wait in a corridor.  My blood pressure was taken on a dynamap(always think a proper sphyg better) in the corridor and, not surprisingly, was elevated – well for me anyway, as my BP is normally on the low side.  The cardiologist was great.  He seemed to have a sound understanding of Ehlers Danlos, wanted to know about childhood issues related to it, when & where I diagnosed (University College Hospital, London) and what heart investigations I had already had…..answer: none since childhood.  He seemed slightly surprised, but went through some of the common issues of leaky valves, postural issues, thyroid levels, palpitations and then took a lying animages (3)d standing BP.  Whilst there was no significant difference with this (and I thought he nay think I’m making it up), he could see that I couldn’t stand up straight – it feels like I’m being pushed backwards, although I’m told I fall forwards. Weird! Anyway, he believes me enough that he has ordered a tilt table test (exactly as it sounds, but the patient is left lying flat for considerably longer than an outpatients lying/standing BP and injected with nitrates etc to observe reaction when tilted to angles which will induce symptoms. Can’t wait!), bloods and a 5 day heart trace.  He mentioned postural orthostotic tachycardia syndrome (POTS) and that postural circulatory issues are a symptom of EDS – which I knew, but had been concerned that he might not recognise!  More news as it unfolds.


The light entertainment has been enjoyable but tiring.  I have been writing this post for days now, but the fatigue and brain fog have taken over!  Duncan had bought tickets for my mum and I to visit Cadogan Hall in London for the concert “An Enchanted Evening” – with Lesley Garrett, Ruthie Henshall, Gary Wilmott and Michael Xavier (I have copied my short review to the books & reviews page). download (2) Public transport is a nightmare for me these days and I can’t manage the journey home after a show, so Duncan drove us up to Sloane Square where we managed to get the one and only disabled bay.  This is where I feel so guilty as my husband came to dinner with us – really could have done with a wheelchair to get to the restaurant- and then took himself off for the couple of hours that we were being enchanted!  Our darling eldest son was also in London for the evening and eventually called his father to invite him to join his group for drinks – because he felt guilty.  Too late, student engineer – Dad was already headed down the Kings Road for the Curzon and a performance of the new David Brent film. Of course Duncan spent many years working on THAT Slough trading estate! Office fans will understand.  Without him I just would not have been able to do this night out, and for that I am so grateful.

We had a lovely evening as a family with our dear friends Evi & David over the weekend too – they have been a major support to us in so many ways for all the family, and this is ongoing.  Evi and I are just massively relieved that David & Duncan have found each other – kindred spirits in their love of Prog Rock music, meaning that we don’t have to listen any more (sorry, boys!).  Then, bam!, it hit me.  The fatigue, the pain – everywhere, the swelling of my feet and hands…..here comes another PJ day!  I’m so sorry, I can’t come out today….



I wonder, has anyone had results with chamomile or ginger tea?


Drinking Chamomile tea has been shown to sooth back pain and menstrual cramps. It helps relax tense muscles due to the high levels of glycerine, which is an amino acid which is known to ease muscles.

Chamomile tea has a calming effect on tense muscles in the back. If prepackaged chamomile tea isn’t available, you can steep chamomile flowers in a cup of boiling water. Do consult your doctor first if you’re allergic to ragweed pollen or pregnant.

Consumption of chamomile tea 2 – 3 times in a day can provide highly effective results. Another option is to drink ginger tea 3 – 4 times in a day.


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#EhlersDanlos Radio drama “Tinsel Girl & the Great Reunion” Part 2

Hoping that you enjoyed the first episode of this radio play about Maz, who is a young woman who has a thirst for life and just happens to need a wheelchair to get about as she has EDS – so I’m going to post each episode link daily this week.  Please remember that the episodes are only available for a set number of days, so download them all now and listen at your leisure!



Many possible causes, no answers

This blog post from Chronic Rants will ring true with so many

Chronic Rants

When someone who’s generally healthy feels bad, they can usually tell you why: they drank too much last night, they haven’t been sleeping enough, they’re under a lot of stress, they’re getting sick.

When you have a chronic illness, it isn’t always so clear.

I was doing unusually well over the last few weeks. I wasn’t feeling as good as I do in the fall and winter, but as far as summer goes, my pain and fatigue and other symptoms weren’t too bad.

Then I started feeling unusually bad. I was more fatigued. I was depressed. I was in more pain. The symptoms ebbed and flowed but were always around. What happened?

I weighed the possibilities:

  • Maybe it’s the weather. But I’ve been staying in air conditioning. And it’s hot and humid, but not nearly as bad as it was last week. There’s no reason I should feel so much…

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