Tag Archives: Hives

Dermographism

Also known as Dermatographic urticaria, Dermatographism, Dermographia or Dermatographia and commonly called “skin writing”.

I’ve had Dermographism for as long as I can remember.  So I was either born with it (most likely) or developed it in infancy.  I had absolutely no idea that other people didn’t have it until I was 45 years old because it had always been normal for me.  How crazy is that?

According to Wikipedia: Dermographism is “thought to be caused by mast cells in the surface of the skin releasing histamines without the presence of antigens, due to the presence of a weak membrane surrounding the mast cells. The histamines released cause the skin to swell in the affected areas.  This weak membrane easily and rapidly breaks down under physical pressure causing an allergic-like reaction, in general a red weal (welt) to appear on the skin. It can often be confused with an allergic reaction to the object causing the scratch, when in fact it is the act of being scratched that causes a weal to appear. These weals are a subset of urticaria (hives) that appear within minutes, in some cases accompanied by itching. The first outbreak of urticaria can lead to others on body parts not directly stimulated, scraped, or scratched. In a normal case, the swelling will decrease with no treatment within 15–30 minutes, but, in extreme cases, itchy red welts may last anywhere from a few hours to days.”

I couldn’t have put it better myself 😉

I develop dermographism when I’m scratched, or sometimes when my skin is subjected to pressure.  I cope with pressure better than scratching and can wear elasticated clothing and socks without problems, so long as they’re not too tight.  My biggest issue in respect of pressure are the braces I use for my joints.  They have to be tight in order to support the joint but on the whole they’re simply too tight for my mast cells and cause welts to develop.  The welts itch me like a son-of-a-bitch and of course if I scratch the scratch itself becomes a welt.  Joint braces = histamine hell.

Scratches on my skin cause my dermographism to go bonkers but, unlike the welts caused by pressure, these welts don’t itch.  It’s bizarre.  I thought I’d demonstrate my dermographism by scratching the word “hi” on my arm with the end of a pen.  Here’s the instantaneous result:

Photo of Dermographism on the armI’ve never timed how long it took for the hives to go down, so as an experiment here’s the dermographism after 2 hours:

Photo of dermographism on the armAnd again after 4 hours:

Photo of dermographism on the armAfter 7 hours the swelling had gone but the red mark of the word “hi” was still there when I went to bed that night (though had gone by the next morning).  As I said though, no itching and luckily the hives are always contained to the area of the scratch and don’t seem to set off any kind of histamine chain-reaction elsewhere, yayyy!

My dermographism isn’t confined to pressure and scratching though.  When I had a 24 hour heart monitor done in 2014 I had to wear pads stuck on my skin with electrodes attached to them.  My skin can be iffy when it comes to glue (some plasters and tapes make me itch like mad) and this was the reaction to one of the pads on my chest:

Photo of dermographismThe itching nearly drove me to distraction and, not only was there an oval shaped hive from the pad, but weird criss-cross hives all the way round it too – no clue what they were, but oh boy was I glad to get those damned things off me!

I don’t take any kind of medication for my dermographism.  I scrape my skin 10 times a day (being thin-skinned due to EDS) but luckily the scratches don’t itch so I feel no need to treat them with anything.  It would be great to be able to wear proper joint braces but, as I’m allergic to anti-histamines, taking daily medication to counter-act the pressure hives isn’t really an option.  So I just don’t wear anything tight – problem solved 🙂

I wish I’d known a very, very long time ago that dermographism is an indicator of Mast Cell Disease.  Mine is classed as fairly severe and unusual that it presented from early child-hood.  Obviously as MCAD is now linked to Ehlers-Danlos Syndrome and EDS is present from birth I personally feel my MCAD has also been present from birth and simply worsened in middle age as did my EDS – it’s no coincidence that my MCAD exploded less than 2 years after my EDS exploded.  Other people, however, acquire dermographism in later life and of course not all people with dermographism have EDS.

I wish I’d known as a kid that my skin wasn’t like everyone else’s.  I could have added Skin Etch-a-sketch to my list of party tricks and I’m sure when I was 9 that would have been super cool.  Not so cool though to have thong induced hives up the crack in my arse.  Who the hell invented thongs anyway – they’re like dental floss for your butt! 😉

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Weekly roundup

I’ve been doing my Swedish Chef routine for 3 days this week and my kitchen looks like a bomb has hit it.  I now have 32 meals and 25 lunches in my freezer, alongside dozens of smoothies and biscuits.  It’s a start.  I’ll have to have a week off though cos my hands and wrists are now so painful I can barely make a cuppa let alone anything else.

I wear my wrist braces and finger splints when my hand joints are painful but here’s the  thing…….for activities like chopping veg, where you really need some joint support, you can’t wear your braces because they get wet and dirty.  You wash your hands a LOT when you’re cooking and baking.  There is nothing worse than a soggy wet wrist brace and when my hands are wet I find my ring splints tend to slide off.  So I have to remove them, leaving my ligaments open to sprains and strains and my joints to subluxations.  And here’s another thing about hand braces – it’s impossible to wear gloves when you’re wearing them because they won’t go over the top.  So, again, for activities like walking my dog on a lead when I could really do with the support from my wrist brace I have to remove it otherwise I can’t wear my gloves and would get frost bite.  You’d think the solution would be obvious – just buy larger gloves.  Oh, if only life were that simple.  I already have child-size hands and wear gloves for a 7 year old (no kidding!).  Anything bigger means the fingers are so long I can’t actually grip anything, or pick the dog poop up, or turn the key in the car ignition.

I finally got to speak to a Social Worker about having some home care while I recover from my surgery.  Turns out you are entitled to 6 weeks free care after being in hospital, so I was thrilled about that.  The care isn’t provided by Social Services though, you have to go through a different department and you can only do that when you’re actually in hospital, which tells you everything you need to know about how care services are run in Britain.  My neighbour (the one that died last week) was admitted to hospital last month.  He only needed to be in 4 days but ended up staying for 2 whole weeks because there were no Home Care workers available and without care in the home the hospital wouldn’t discharge him.  I have contacted Social Services well in advance of my op so that I’m on the system, all my finances are sorted, they know what my illnesses entail and what kind of care I need so that they can plan my care on discharge from hospital and I won’t end up lingering in there for weeks unnecessarily …….but this is all way too efficient and the system apparently can’t cope with that level of organisation.  Instead you’re supposed to arrange everything while you’re actually in hospital recovering from surgery and feeling like crap.  Then when you get home you’re supposed to show the Home Care worker where your food and crockery is kept, how to work the cooker and dishwasher, how to work the shower, where the towels are kept, where your hairdryer is etc. etc.  when you can barely get out of bed.  FFS.

On to lighter news.  My Great Tit picture came second in this week’s Camera Club competition.  This is the last Projected Digital Image competition of the season and, over the year, I have the highest score which means I’ll be promoted from the Beginner’s League to the Intermediate League in September.   I won’t be winning any more competitions in the Intermediate League because it contains some seriously good photographers, one of whom has a photography degree and her own wedding business, however it’s not a bad thing to have the pressure taken off to do well and means I can enter more ‘risky’ creative images and it doesn’t matter if they bomb.

Open wide

I have an increasingly painful right foot, just to the left of the ball on the base and down from my first toe (ie in the middle at the top of the underside).  It’s been sore for some months now and I have no idea why.  I mentioned it to the Orthotics woman when I went for my new insoles the other week and she just said “hmmm” and left it at that.  It’s so acutely painful by evening I find it hard to walk on.  If any of you have any ideas as to what it might be please speak up!

I’ve woken with a few red itchy patches on my body this past week and again have no clue why.  This appeared in the crook of my arm on Monday and, although it’s now less red, it’s still itching:

Photo of rash on armI had a similar red itchy blob appear on the outside of my groin/thigh and one on my other leg.  I’m also still getting the odd hive on my behind which is probably the longest outbreak I’ve had, having gone on for nearly 5 months now.  And to add insult to injury Spring is on the way and so is my hayfever.  At least life is never dull 😉

Weekly roundup

This week seems to’ve been a tough cookie.  My mast cells are still having a field day, my butt is covered in itchy hives, I feel nauseous every second of every day, I’m not sleeping well and I’m having reactions to just about everything I put in my mouth.  I’m so angry at this disease I want to meet it in a bar and fight it til it’s lying in a bloody heap on the floor.

I’ve also been very MEish, though if my theory is correct that ME is some kind of mast cell disorder this comes as no surprise.  I have a sore throat (which these days I hardly ever get), feel weak, achy, fluey, foggy and have the energy and stamina of a new born.  Consequently, the pile of chores which has been building up all year just got a whole heap bigger and I’m feeling even more overwhelmed by it all than usual.

I had my annual eye exam yesterday, and need new reading glasses.  Two pairs, plus my eye test, cost £200 ($300).  I went for cheaper glasses last time, and the lenses on both pairs chipped in the first 6 months, so I’m not making that mistake again.  I’m already overdrawn for the whole of May, which hasn’t even started yet, so where the hell I’m supposed to find that sort of cash I have no idea.  Fuck-a-doodle-do.

Someone left a comment on my blog this week that went something like this: I’ve been ill for 4 months, but I’ve healed my gut with probiotics and various herbal supplements and now I’m cured.  You lot need to get off your antihistamines and sort your gut out and you’d all be well.”  Are you fucking serious?!  I know I should have written some diplomatic, educational reply but after 2 decades of listening to shite like this I just can’t muster up any tact.  She got the short end of my ire and I make no apologies.  I’m fed up of trying to be nice and take other people’s feelings into account, when they clearly don’t take mine into account when they write drivel like this.  Jog on.

EDS UK posted this link to a piece by the parent of a child with HEDS.  It’s wonderfully written and explains, without melodrama, what life is like for both her and her daughter.  Life as an adult with both EDS and ME is difficult enough, but to have either disease as a child is……………I can’t even think of the words.

The highlight of my week was Wednesday, which was my best friend’s 40th birthday.  Her partner works away 4 days each week so my friend was on her own, which was lucky for me as I got to spend her special day with her 🙂 .  We went up the Lakes, had a gorgeous lunch out, then sat for 3 hours by the water in the warm spring sunshine.  The food made me nauseous as all hell, and I felt so ill by the time I got home I thought I was going to pass out (and I’m sure so did my mate, who also has ME), but I still had a brilliant day in fabulous company and I’ll never forget the look on her face when I pulled out a cupcake, glowing with a birthday balloon candle, and my parents and I all sang her happy birthday – she was mortified 😉

 

Weekly roundup

The past week has had it’s fair share of ups and down.  I’m still not taking any medication for my GERD, although I’m swigging Gaviscon Advance like it’s water.  The replacement tablet prescribed by my GP wasn’t available anywhere, so she had to change it and even that drug was only available from one pharmacy.  It had to be ordered in, so I’m currently waiting to pick it up.  To be honest, though, I don’t hold out any hope of being able to tolerate it.

I have the worst outbreak of butt hives I’ve had in ages.  It could be that the H2 blockers were doing more than just helping my stomach acid.  Or it could be down to the fact the Birch pollen season has started so my histamine burden is currently way high.  Or it could be down to the emotional stress of the past couple of weeks.  Or a combination of all of the above.

I also have a really sore throat.  Due to my M.E. I had a permanent sore throat for about 15 years, but now no longer suffer.  So I’m wondering if this is M.E. related or whether I have a mid throat infection (it’s much worse on one side than the other, which points more to the infection theory).  It’s impossible to tell if my glands are up – I had Glandular Fever when I was 13 and my glands have been like rock hard golf balls ever since.

My Mum hasn’t been good this week either.  She had to be on 3 different types of antibiotics last month for a chest infection, which has now given her the worst case of thrush I’ve ever seen.  The cream she was given isn’t touching it, so it looks like she might need oral anti-fungals.  But she’s now started coughing again, so is on yet another lot of antibiotics which will make the thrush problem worse.   She’s just so fed up of the whole merry-go-round and seems really down – I don’t blame her.

However, the week hasn’t been all bad – in fact, quite the opposite.  The first week I stopped the H2 blockers for my reflux the pain was like nothing on earth, possibly from rebound acid production.  But this week it’s actually settled down to at least an acceptable level and I no longer feel like I can’t manage it.  I’m not saying it’s any fun, but it’s (kind of) bearable.

The weather has also been great this week.  Still in single figures, but dry and spring-like.  I’ve even managed to potter about in the garden for half an hour most mornings doing a bit of pruning and having a general tidy up after winter.   Being amongst nature in the fresh air never fails to lift my spirits and I sat mesmerized watching some sparrows taking in twigs and straw to my nest boxes.

Having been largely stuck in bed for the past 2 weeks it’s given me the opportunity to start a new blog (my friend K says I’m a blog addict and I need professional help 😉 ).  As many of you know, I have a passion for amateur photography which started 4 years ago when I adopted Bertie.  I’ve never had a lesson in my life and when I first started hadn’t got a clue what I was doing – it took me an entire year just to decipher the manual of my DSLR camera 😉 .   In addition, none the information I read either in books or online seemed aimed at a total beginner and assumed all sorts of knowledge I didn’t possess.  So it’s been a really steep learning curve trying to figure it all out.  To save anyone else going through the same trials I thought I’d start a blog on what I’ve learned and share my experience with others interested in improving their photography skills.  The site is called ‘The Amateur Photographer’ if anyone is interested – it’s best to start at the beginning as the posts all build on each other.

It was Mother’s Day here in the UK last weekend, so I managed to pull myself together enough to take my Mum out for lunch (well, OK, technically my Dad took us all out for lunch as I’m broke and couldn’t afford the bill).  With my stomach problems I thought it would be a nightmare, but actually I coped alright given the circumstances.  My Mum was sent some flowers off my brother, so I thought I’d leave you with a picture of a Ranunculus from the bouquet – isn’t nature wonderful?

Ranunculus

Weekly roundup

It’s been a bit of a tough week.  I’ve been icing my hip twice a day, rubbing in lashings of Ibulieve gel and doing zero exercise………but my hips have actually gotten worse not better.  I’m gutted.  I’m now in constant pain and can’t find a single position in bed which is comfortable.  Consequently I’m sleeping even worse than I was already, which means I’m not just tired I’m exhausted and now my ME is playing up so today I am confined to bed.

The NHS gutter crutches are simply unusable.  They are so heavy and cumbersome I feel like I’ve spent an hour weight-lifting in the gym every time I use them.  So I’ve bitten the bullet and ordered some Smart Crutches (in black, so they go with every outfit 😉 ) and am just waiting for them to arrive.

The physio wanted me to do some hydrotherapy but it involves a 60 mile round trip which isn’t physically do-able every week in winter for the next god knows how many months.  With my dodgy immune system I’m also not keen on using a hospital pool!  My neighbour has some mild back issues and also fancies swimming but doesn’t fancy a snot, pee & germ infected public pool so this weekend we’ve been investigating hiring a private heated indoor pool and having ourselves a swim session pour deux.  We’ve managed to find one locally which rents out at £20 ($31) an hour, so we’re hoping to try that next week.  The last time I tried swimming it made me feel really MEish and fluey, but I admit it’s been 18 years so things might have changed!  I’ll give it a go and see how I get on (obviously starting with just a few laps and working up).

Both my Mum and my dog are also ill (Mum is coughing up blood again and Bertie is lame) so we’re all a bit miserable.

I’ve been investigating upgrading my current little mobility scooter to one that will go over much rougher terrain.  There’s a 2nd hand one going at my local Disability centre and, while it’s still outrageously expensive at £1,000 ($1,600) and would decimate my meagre savings it’s really cheap compared to a new one (cost £3,000+ or $4,800).  It would mean I could take Bertie out off-lead, and do my photography, on my usual public footpaths through woods and fields rather than being confined to the road with Bert on the lead as I currently am.  It’s a huge decision for me financially and I’m still undecided as to what to do.  One of the biggest things putting me off is that the scooter is only shower, not water, proof.  It’s bloody ridiculous.  Are disabled people not supposed to go out when it’s wet (where I live it rains 300 days out of every 365!)?  I don’t understand why the console on a scooter can’t be made waterproof like the console on a motorbike (this particular scooter was designed with the Harley Davidson motorbike in mind).  With my current scooter I either wear a large waterproof cape draped over me and the scooter (which makes picking up dog poop a total pain in the backside and one of these days when it’s windy I’m going to take off like Mary Poppins) or I place a bin liner over the console to keep it dry, but the way the Sport Rider is designed placing a bag over the handlebars would be a nightmare.  I’m ringing the mobility place again today for another chat.

Mast cell-wise my large outbreak of butt hives are finally on the wane, but I had a mast cell reaction last night at about 9.30pm for no reason I could fathom (increased blood pressure and heart rate, anxiety, muscle spasms, nausea, buzzy nerves, brain freeze – the usual suspects).  It could have been a late reaction to my dinner (eaten 2 hours earlier) or my H2 tablet (taken 90 minutes earlier), the fact I’m ovulating or it could be something else entirely.  I’m obviously still quite mast cell-y though and have been for about 2 months now (ever since my hip issue started).

And to top off an other-wise crappy week, last night was the last episode in the current series of Downton Abbey *sob* 😉 .

Despite spending this entire post whinging, life is not all doom and gloom.  I do have some exciting news but will save it for later in the week!

 

 

Mast Cell Flares

I’m currently having a mast cell flare.  Not a mast cell reaction, which is an acute anaphylactoid event, but a gradual increase in my symptoms which, for me, results in hives (your end result may be totally different).

Looking back, this flare began about 2 months ago with insomnia.  I never sleep particularly well, but when I flare I start waking several times a night and really struggle to get back off.  Consequently my fatigue is ratched up a notch or ten.  Insomnia was my very first ME symptom (I’d always been a superb sleeper until then) and now I recognise is a sign that my histamine levels have increased.

Then my bowels get sluggish.  Instead of pooping every day after breakfast I’m down to every other day (sometimes every third day) and at random times, even the middle of the night.  Of course, having my poop backing up in my intestines leads to colicky pain, bloating and ultimately more heartburn.  Yay.

At the opposite end of the spectrum my urine output triples.  When I’m in a good patch I never have to get up in the night to pee, but during a flare I’m up and down like the proverbial bride’s nightie.

I’m either totally nauseous and unable to eat a thing, or ravenous and chomp through food like the Hungry Caterpillar.  I prefer the chomping, and am currently eating myself out of house and home.  In the past couple of months I’ve gained 4lbs and my jeans are getting uncomfortably tight.  But that’s OK.  I know for sure at some stage in the future I’ll be sick to my stomach and lose it again.

Next comes the sneezing and the annoyingly itchy prickly nose.  During a flare the first thing I do when I wake up is sneeze and I spend all day rubbing my nose until I look like Rudolph’s older-yet-better-looking-it-has-to-be-said sister 😉

My skin also gets more prickly and itchy and tends to welt easier.  If I kiss my dog I spend the next hour feeling like my entire face is being tickled with feathers.  Trying not to kiss my dog is futile, being as though he’s the cutest dog on the planet.

And finally, 2 months on, my butt hives have appeared.  Itchy little fuckers.

I had no idea why I was flaring until I started writing this blog post and had a Eureka moment – my hip started hurting 2 months ago!  I have pain, severe inflammation and of course my body is producing an immune response to the situation, so I’m now thinking this probably has a lot to do with why my mast cells are currently behaving badly.

I don’t do anything hugely different to cope with a flare, although I make sure I’m really strict with my diet.  I use prescription steroid cream on my hives (the only thing that works) and try to keep on top of washing my bedding to get rid of Bertie’s dander (don’t always succeed!).  I also do try to rest more, as histamine for me is a potent simulator and I often feel I have waaaay more energy than I actually do.  So I tend to do more, which makes me more exhausted, and stimulates more histamine, which ramps me up, so I do more………..and a vicious cycle develops.  Got to admit, though, I find it incredibly hard to rest when I feel so energized and it still amazes me that I can be so tired, yet so wired, all at the same time!

I finally saw my physio this week (more on that in the next blog post) and am hoping in the next month or two I can get my hip bursitis to calm down, which should also calm my mast cells down.  Famous last words 😉 .

 

 

Weekly roundup

I’m starting with some good news for a change.  I’ve had rotten griping stomach pains for several weeks now.  I couldn’t understand what had set them off and the only thing which has been different is that I stopped taking my H1 anti-histamine at the beginning of summer (I usually only take it during the spring Birch pollen season).  When I thought about it, I realised I’d also been sneezing a fair amount recently so decided to go back on the ceterizine (brand name Zyrtec) to see if it would help.  In only a few days my stomach pain had completely vanished, which amazed me!  I know the entire GI tract is packed with mast cells, but hadn’t realised the impact an H1 anti-histamine would have on the bowel.  When I was first looking at histamine I remember reading a fascinating personal account by Paul Robinson on how histamine wrecked his life and how he saw almost complete remission by doing the H1/H2 anti-histamine combo.  His immunologist said he’d developed hives within his bowel, which I didn’t realize was possible.  I wish I had complete remission just by taking a spoon of Zyretc liquid and a Tagamet tablet, which sadly isn’t the case, but at least it’s helping my pain for which I’m truly grateful.

Next week I’m going to the hospital for my long-awaited appointment with the oral surgeons regarding my failed root canal and my constantly subluxing right jaw joint. There have been times during the last 4 months where my molar has irritated me to such an extent I’ve wanted to pull the damn thing out myself with a pair of pliers, so I hope they can do something to either save the tooth or get rid (it extends into my sinus cavity so an extraction is going to be tricky – why is it always me who has the complications?!).  I don’t want surgery on my jaw joint, but am hoping they can make me some kind of night-brace to wear to stop it slipping about while I sleep.

I’m also seeing a GP regarding my subluxing right hip joint, although I don’t expect to get anywhere – I’ll just ask him to re-refer me to physio so’s I can speak to someone who knows what they’re doing (though lord knows how long I’ll have to wait).  In the meantime I’m bracing the joint using my SI belt but worn lower than usual, which does seem to help particularly when I’m walking.

Since getting a Murphy ring splint for my sprained ring finger 6 weeks ago it finally seems to be on the mend.  The lump which developed on the knuckle is still there but is no longer red and inflamed, and although the finger is still slightly swollen and I still can’t fully bend it it’s nowhere near as painful – it’s only taken 4½ months to begin to heal!

On the flip side I’m now having to wear my right wrist support, having woken up one day last week with burning and painful tendons.  Not really sure how I strained the wrist, but think it was lifting a pan off the cooker (which I’m really not supposed to do, but it was the Chef’s day off 😉 ).

As I’m allergic to painkillers I use heat a lot to alleviate my muscular pain.  I saw an advert for FireActiv braces which have a repeat-use heat pad actually within the support which I thought I’d share with you in case of any of you fancied trying them.  I think they look fab and I just need to win the lotto now so I can afford to buy some 😉 .

I’m going to end on some nice news (don’t worry, I won’t make a habit of being this positive 😉 ).  Last week was my little dog Bertie’s birthday.  He is the light in my life and had a fabulous day, playing, cuddling and being spoiled by everyone we know.  I thought I’d include a little photo of us going off for our afternoon ‘walk’, though he doesn’t usually sit on my knee on the scooter obviously – I just couldn’t get him to stand still next to me long enough to get a snap!  There are many days I wouldn’t bother getting out of bed if it weren’t for the fact that Bert needs me to, and no matter how ill I am or how bad my day is he always manages to make me smile.  As I type this, propped up in my bed, he’s lying asleep next to me with his head half tucked under my arm – my constant companion.  Love you to the moon and back Bertie boy x