Weekly roundup

2018 has not got off to the start I’d hoped.  I wish I had a nice, happy, positive roundup post for you but sadly I’ve had a shitty week.  On New Year’s Day I had an anaphylactic reaction to the Famotidine (H2 antihistamine) I’ve been taking for my severe GERD (stomach acid).  It had been coming on for a couple of months, with anxiety, palpitations and muscle spasms after taking the tablet, but I’d been trying to ignore it in the hopes my mast cells would settle themselves down.  They refused and finally gave up on the drug last weekend.  Bugger.

My reflux is really bad and the pain of having my body’s equivalent of bleach eating away at my stomach and oesophagus day in and day out honestly makes me suicidal.  My nausea is also off the Richter Scale and my appetite has totally vanished.  Not to mention the appalling taste of battery acid which I now have in my mouth every second of the day and which burns my skin and tongue.

I also think the H2s have been helping with other things, such as muscle spasms and brain fog – I certainly feel much more spasmy since I stopped taking them and very foggy headed.  After all these years I am so sick and tired and being sick and tired I can’t even tell you, and spent the first few days of 2018 wishing I could have a massive heart attack in my sleep and not wake up, but that hasn’t happened so I’ll just have to find a way of coping with the symptoms.

I’ve now tried all the H2 drugs available and, while my body tolerates them for a year or so, eventually my mast cells throw a hissy fit and I become allergic.  I have no fucking clue what the problem is but it’s the same with any drug I take, no matter what it is.  So, yes, I could now progress to trying PPIs but every single day I would be worried about anaphylaxis – I either live with the pain and nausea or I live with horrendous anxiety.  Super.

To add insult to injury whatever I did to my neck in my sleep before Christmas is no better.  I’d hoped I’d just pulled something and it would settle but 3 weeks on it’s still hugely painful every single time I move my head or arms. I can’t be arsed seeing the Doctor (assuming I could get an appointment this side of Easter) as they would want to prescribe painkillers I can’t take or physio I can’t tolerate, so I’m just doing the usual icing, heating and spraying on Ibuleve gel (I can’t even reach to give it a good rub as it’s too painful to move my arms).

I am not a happy bunny and the week has not held any saving graces.

As if things weren’t bad enough, my Dad had some routine bloods done before Christmas in connection with his leg pain and weakness and the results showed that he has a low lymphocyte count (a type of white blood cell) and they also found kappa paraprotein.  There can be various reasons for this but tomorrow he has to take a urine sample in which will be tested for Bence Jones protein which detects blood cancer, so naturally we will be worried until we know the results.   At his age it is much more likely he has Monoclonal Gammopathy of Undetermined Significance (MGUS) and will just need to be monitored as statistically 1% of people with MGUS develop cancer each year, but it’s still something we didn’t expect and has come as a bit of a shock.  Luckily for my Dad he is totally clueless as to what’s going on and Mum and I haven’t discussed the possibility of cancer with him – it’s pointless worrying him (and due to his dementia he gets super anxious about the slightest thing) until we know more.

The only nice day I had this week was Thursday, when I made the journey through to the city to see my best mate.  She has been having issues with her hands which swell up and give her fingers like sausages.  Her skin is also dry, kind’ve lumpy and eczema like and no-one is quite sure what’s going on.  She had a scan which showed virtually all her finger joints were swollen, but her arthritis blood markers are all normal which is odd.  Anyways, on Thursday she had been booked in for allergy testing but they rang the day before to cancel it (for the second time) due to the crisis which is going on in the NHS, which left her day open so that we could have a catch-up.

Not wanting to sit in the house all day today on my own and dwell I’ve arranged for my folks to have Bertie for the morning and I am taking my hide down by the river to try and photograph a pair of Dippers I’ve spotted recently.  It’s bollock freezing cold, so I will need to be well wrapped up and have various heat pads secreted about my person, and it’s not going to be easy when I can barely move my head or left arm but it will pass the time.

Speaking of which I must get up, dressed, take the dog out, through to my parents and then get myself settled down by the river.  Or at least I would if I could stop sneezing.  I have been having a massive sneezing fit for the past 30 minutes, my nose is running like a tap and I’ve already gone through 2 man-size cotton hankies since I got up.  I swear if I’m starting with a cold it will be the last straw.

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10 thoughts on “Weekly roundup

  1. Helen

    Urgh – that’s just far too much crap for one person to be expected to cope with. Wish I could do more, but all I can do is send you a virtual hug x

    I know what you mean about the heart attack thing. I’m not even 1/4 as ill as you, and I also feel so fed up with it all that I find myself envying people who have passed on (as I firmly believe we’re ‘just visiting’). I’m so over this living business; so far it’s been a bag of cack. Sigh.

    I’m hesitant to suggest it, as I know you’re so sensitive to everything, but Apple Cider Vinegar is good for heartburn. How that would work with the GERD created by EDS and your histamine issues I have no clue, but I thought I’d offer it up in case you thought it might be of some interest?

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  2. Livvy Woodburn

    Hi jak sorry to read you are suffering. As you live in the North would your GP be up for referal to a neuro GI doc who knows (I am told but no personal experience of) abit about eds PoTS mcad ? He is based in Gateshead near Newcastle which I realise it a huge journey Being it’s on the east coast. Maybe he could offer suggestions?

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    1. Janjay

      Hi Livvy. If its ok, would you be able to tell me the name of the doctor in Gateshead? I live in Durham and a doctor with a bit of knowledge of EDS etc could be really useful!

      Hope you don’t mind be asking this on your page Jak.

      So sorry about the crap start to your year Jak. Just hope it improves for you. Totally understand your feeling of it being pointless trying to see the doctor. There seems to be so little they can do even when they actually listen and try to help. I hope that you have at least had a good days photography by the river and the cold hasn’t developed any further. Look forward to seeing any photos you choose to share- they are always fantastic!

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    2. Jak Post author

      I’d certainly be interested to hear of *any* consultant in the north of England who has any knowledge of EDS or MCAD Livvy! x

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  3. d

    Ah shoot Jak, I am so sorry to hear about your issues with the H2 blocker. I really, really, wish there was something that could work for you long term. You certainly deserve a break from all of this health crap. When I was a kid I remember my grandparents drinking a baking soda mixture when they had reflux. No idea if you could tolerate it, but the possible advantage being that it would contain no additives, colouring, etc. I know you have pretty much tried everything, so forgive me if you’ve gone this route, and feel free to ignore if you know why you can’t do it.

    I hope your dad’s test is ok and he just needs to be monitored.

    Sending many good thoughts your way in hopes that things settle.

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    1. d

      I did a little reading about this and definitely talk to your doctor first to make sure you don’t have any contraindications. Wish there was a simple fix!

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  4. Ellie

    Careful with apple cider vinegar, I know some people swear by it & it really helps them but its fermented & can cause a massive histamine reaction in sensitive folk. I tried this experiment a few times & each time it ended in disaster I always thought it was just the salicylate intolerance but I now know Im sadly reacting to amines as well.
    I remember reading somewhere that taking bi carb capsules can help to stop a histamine reaction, I have tried this one & there does seem to be something to it, In the old days bi carb was used as an antacid. There’s another thing to consider though, both too much acid & too little acid will burn & cause reflux, in the same way that something highly alkaline will burn your skin as much as highly acidic substances.

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    1. Jak Post author

      I assume that as my reflux is due to my over-zealous mast cells, and mast cells in the stomach produce acid, that my issue is over-production rather than under-production but I totally understand where you’re coming from Ellie. That all doctors think reflux is down to too much acid is incorrect x

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  5. Livvy Woodburn

    Re neuro GI doc in north: Consultant neuro gastroenterologist Prof Yiannakou at County Durham nhs is name I have atm or possibly referal to dr Adam farmer in Staffordshire. Hope helps xxxx

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