When Infection Sets In – Sinusitis with Ehlers Danlos Syndrome

Sorry for the radio silence.  Things have been a tad, well, meh.  The Cheetah Keeper seems to be working for a ‘how many times can you make mummy cry on the school run’ award by refusing to get dressed of a morning and having to be taken, kicking and screaming into school and once again, my sinuses are infected.  Sinusitis with Ehlers Danlos Syndrome is no fun at all.  Sinusitis isn’t fun at the best of times; excruciatingly painful, the feeling overwhelming congestion – your face feeling like it’s as packed as the M25 on a Bank Holiday Friday evening.  I have discovered, that with my sort of Ehlers Danlos Syndrome, getting sinusitis is far more likely and also far harder to shift.

I have had a level of sinus/chest infection since August 2012.  Yep, 15 months of it.  Much worsened by my ulnar nerve surgery back in January when lingering infection (probably Strep) tootled down into my chest and refused to move.  I had a little respite over the summer but it transpires it never quite went, hence the long term cough and snotty nose, plus the feeling of there being gunk in my throat all the time – a feeling that made me crave acidic fizzy (and probably teeth rotting) fizzy drinks as it was the only thing that cut through it.  Sales of Pepsi Max must have increased.

With a bit of research *gross alert* I’ve discovered that the gunk, snot and normal nose related stuff isn’t draining through my sinuses properly because the connective tissue that makes them just isn’t up to the job.  Some of the gunk drops into my throat (this is called a post-nasal drip) and then trickles into my chest, making that infected.  The rest of it pools in my sinuses – the connective tissue just stretching to accommodate it rather than pushing it through.   The bacteria in the snot think ‘wooohooooo’ party place and settle in for the duration and then refuse to go home.  Urgh.

So far this autumn I’ve ended up with Staphylococcus Aurea (that’s the SA bit of MRSA, but I didn’t have the MR bit) which, despite 5 weeks of double strength, lab targeted antibiotics went and hid in a corner rather than being blitzed to kingdom come.  Within 3 days of coming off those antibiotics, the headaches were back, my face was tender and the pain was beginning to increase.  I sounded bunged up – although that seems to be situation normal.

By last week the infection was well and truly set in.  I don’t run a temperature, I shiver a bit but that’s normal.  What happens is that I lose the plot, badly.  I was confused, struggling to string a sentence together, had the shortest fuse possible and was getting lost in conversation.  I was ready to burst into tears at any opportunity and the reality of being out with other people around me (normal things like Sainsburys and going to the zoo) was enough to send my pulse racing and my ‘fight or flight’ adrenaline response veering heavily towards the flight.  Except you can’t when you’ve got a trolley full of shopping and a small boy in tow.  Claustrophobic, agoraphobic, suffering from poor judgement, having almost no spacial awareness and feeling distressingly out of control – but no temperature.

I was exhausted but couldn’t sleep – the pain in my head and face was exacerbated by lying down.  Regular doses of Tramadol didn’t touch the sides.  Walking hurt – every footstep jarred through my face like skewers.  Sinusitis is no fun.

Having researched further, it seems that people with EDS are more prone to sinusitis for the reasons I mentioned above.  It also seems that the only way to shift it is to have long doses of strong antibiotics.  By long I mean around 20 days, not just the 6 or 7 that would deal with it in people without the syndrome.  I’ve also realised I need to catch it early – as far as I’m aware, current NICE prescribing guidelines recommend that people suffer the symptoms of sinusitis for 2-3 weeks before antibiotics are given as the viral infection can take that long to clear, especially after a cold.  I’m going to have to be a rebel (thankfully my GP is up for this!) and get the treatment in as soon as I can – because I can’t keep going through the winter like this.

I’m now 3 days into the Clarithromycin (500mg twice a day for 4 weeks – ‘normal’ dose would be 250mg twice daily for 6-10 days so the leaflet tells me) – it gives me a strange metallic taste in my mouth but the pain is easing – it’s not bad enough to bring tears to my eyes or make me feel sick.  I so hope it works – there’s a lot of autumn I want to photograph.

 

 

 

 

Comments

    • Jenny; Cheetahs In My Shoes & Just Photos By Me says

      My GP and I are on a mission to shift it – unfortunately she leaves at Christmas so I will need to get another one on side. I can’t keep going like this x

      • David Campbell says

        Oh dear getting a new GP to understand EDS problems is an absolute nightmare, the only easy way to do it is try and get your current GP to sit down with another in their practice and talk them through everything, it’s why I’m happy dealing with 2-3 GP’s at once so they all understand whats happening if another leaves. I hope you get it sorted before your current GP leaves as the months it takes to get GP’s on your side is not healthy.

  1. Anya from The Healer and Older Single Mum says

    Oh Lord, that all sounds awful. Much love and healing vibes going your way. There’ll be other pics to take xxx

  2. Aisha from expatlog says

    As always, sending love, hugs and my undying admiration xxx

  3. AlwaysARedhead says

    Sinusities is horrible, and obvious, triple the pain for you. I do hope this new course of stronger antibiotics works for you.

  4. Rachelle says

    I’ve had sinusitis a month but not as bad as you are going through. I hope you get well soon.