Skin & other stuff

It turns out that shock, emotional distress, worry, Norovirus and being a Carer aren’t that good for your health.  I lost 3lbs in the space of 5 days with my tummy bug and still feel weak, though at least I haven’t had an ME relapse which was my biggest fear.  My sleep, already rubbish, now involves spending half the night in the Twilight Zone, the odd trip to the loo for a pee (which I did for years but which had stopped after going low histamine), and waking at 3-5am unable to drop back off.  My back pain, which again had improved after going low histamine, has been ramped up several notches and is now keeping me awake again as I can’t find a single position in bed which doesn’t hurt.

My joints are slipping all over the place.  I got up off the sofa yesterday, actually heard my big toe joint crack, and spent the rest of the day hobbling about like a constipated duck having obviously sprained or strained something vital for standing upright.  My SI joint is playing up and giving me sciatica, hip and butt pain that I haven’t had in yonks.  And I’m also back to wearing my wrist braces, which annoy the hell out of me as it’s impossible to wash your hands when you’re wearing them.

To round it all off I’m suffering with heartburn 24/7, despite being on the maximum dose of Tagamet (H2 antihistamine) and swigging Gaviscon Advance before bed, which means my old friend Dry Cough has put in an appearance.  Add to that niggling tooth pain from my jaw slipping about and misaligning my teeth on the right-hand side, constant stomach pain and nausea, being covered in bruises, raging peri-menopause hormones and crippling exhaustion and if I could tolerate alcohol in any way I swear I’d get drunk on cider for the rest of the week 😉 .

I’m still toying with the idea of having my skin checked by a dermatologist.  I’ve never once had a skin examination, despite being covered in freckles and having dermographism.  Just out of curiosity last night I took my thumb, rubbed a freckle on my shoulder 3 times quite hard, and within 5 minutes this was the result (sorry about photo quality, it was dark and I just had the camera on my mobile handy):

Photo of histamine wheals

As you can see, I’ve got a roundish wheal over the site of the freckle where I rubbed, but also a long wheal along my shoulder-blade and what you can’t see is that there are another two long wheals down the top front of my arm.  Obviously these could just be dermographia (although my wheals are usually confined to the area which has been scraped or pressed) but being as though I’ve had mast cell symptoms since I was an infant, and have some slightly odd looking freckles, I still want to know for certain that I don’t have cutaneous mastocytosis.  Pointless asking my GP to refer me on the NHS – she already thinks I’m a raging hypochondriac.  So I’d have to pay privately and have been compiling a list of dermatologists who say they have a special interest in masto (none of which are local, so yet more travelling involved).  It’s just something which niggles away in the back of my mind so I think I need to find out once and for all so that I can put it to bed.

I also made the mistake yesterday of scratching an itch.  So what I hear you ask?  The problem being, scratching tears my skin off.  The itch disappears but I’m left with a much more annoying, sore and bleeding wound (again, sorry for poor photo quality):

photo of scratchingNote to self: itches should be rubbed, not raked with finger nails.  I now stink of Germolene 😉 .

Dr Seneviratne wants me to be formally tested for POTS/dysautonomia.  There is a leading Falls & Syncope Clinic 90 miles away in Newcastle, run by Julia Newton, and I received my appointment through this week for April.  Trouble being, it was for 9am.  That would mean getting up at around 5.30am in order to get dressed, have breakfast, put a low-histamine lunch up to take with me, drop the dog off at Mums, drive through, get parked and be at the clinic on time.  Bugger that for a game of soldiers.  The latest appointment I could get was 10am, so I’ve gone with that……..but it’s not til 16th June *big sigh*.

As soon as I have some cash spare I really must update my Medic Alert bracelet.  I’ve worn one for years due to my severe drug reactions and the fact I have M.E., but I really need one which lists all 3 of my diseases.  I did inform Medic Alert of my Ehlers-Danlos diagnosis so they do have that on record, but knew I was also going to pursue the mast cell issue so have never replaced my bracelet.  They do some really funky ones now, so instead of plain silver I think I might have something a bit more fashionable.  Who knows how useful they actually are in an emergency (I’ve heard paramedics don’t even check for one), but I still feel safer when I wear mine and at least doctors can’t ever turn round and say “if you’re allergic to so many drugs why weren’t you wearing a bracelet so that we’d know?”!

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4 thoughts on “Skin & other stuff

  1. E. Milo

    In Ireland, I don’t think the paramedics looked at my bracelet. Here they have always noticed it, but NEVER taken it off to look at the back. They have either asked my husband or, once, I remember them yelling at me over and over: “what’s this bracelet for?” I was barely conscious and couldn’t answer. I think about that a lot now because I have been given morphine many times in the past by paramedics, but now I’m allergic to it. Scares me what can happen if I’m not compos mentis.

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  2. bertieandme Post author

    Me too! The Medic Alert people have a list of all my drug reactions, and even they rang me up to say it was impossible to react to all the drugs I’d listed – bloody cheek!

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  3. AllieCats

    Recently I had my DNA tested through YouScript (Medicare paid 100%!) and found out what I’ve known but doctors never believed. I don’t metabolize many drugs properly and that’s why I have such horrible drug reactions. Now I have a card I carry that says what genes are deficient so they know what NOT to prescribe me. We’ll see how much they pay attention but at least I can check them out before taking them. Hopefully it will help me not have so much down time from bad drug reactions.

    Here’s a list that might be of interest. If you’ve had a problem with some of the drugs in a column it’s possible you’re either a poor metabolizer or a rapid metabolizer and should avoid the other drugs in that column. http://medicine.iupui.edu/clinpharm/ddis/main-table/

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    1. bertieandme Post author

      Thanks for the link, I’ll take a look over the weekend. I’ve had my DNA tested through 23andme but in the UK none of the medical staff I’ve seen have been interested in the results, and it’s hard to interpret the raw data when you have no knowledge of genes at all! I’d love to see a geneticist, who might be more interested, but over here you can’t request to see a particular specialist – it’s your GP who decides who she will refer you to 😦 I think my results gave me info on how I metabolized caffeine and various drugs, so I’ll have to dig it out and have another look. Jak x

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