Tag Archives: Dermographism

Weekly roundup

Sorry there has been no blog post this week – I simply didn’t have the time, and more importantly, the energy.

Tuesday I drove my Dad 90 miles to the other side of the country for his pre-op assessment.  He has spinal stenosis due to a bulging disc and needs decompression surgery.  Eighteen months ago he was still walking 6 miles up the mountains every week but now needs a wheelchair outdoors and has to use a stairlift to get up the stairs to his apartment.  His deterioration has been swift and scary and he’s desperate for surgery, for which he’s now been waiting nearly 4 months.  At the assessment we met the Surgeon who will be carrying out my Dad’s operation and he dropped a bit of a bombshell.  He said that although my Dad’s MRI scan showed the narrowing in his spinal canal it isn’t bad enough to be giving my Dad such severe symptoms and he thinks something else may be going on further up his spine.  So while we wait for the surgery to take place I’ll need to take him back to the Hospital a further two times, once for an MRI of his upper back and neck and once for some nerve conduction tests.  While it’s bloody annoying to have to do another couple of 180 mile round trips I’m glad that the Surgeon is being thorough.  My Dad has MGUS (monoclonal gammopathy of undetermined significance) which showed up unexpectedly in his bloodwork a year ago and none of the doctors I’ve spoken to so far have wanted to know.  However, MGUS can cause peripheral neuropathy and we need to know whether that is contributing to his leg weakness.  He also has cramping/spasming hands to the point where he can’t even pick a cup up and again this has been ignored by the doctors we’ve seen so far.  But it’s not normal for heaven’s sake and I’m chuffed the Surgeon agreed and has decided to take a look at his neck at long last.

The Clinic was running 2 hours late, so we ended up having quite a long day.  We set off at 9.15am and finally got home at 3.15pm.  I was knackered.  However, that night I was teaching the beginner’s photography class so had to pull my leaden body and foggy brain together.  I managed to get through it but was so exhausted it was like an outer body experience and I can’t remember a thing about the evening or what I said!

I coped really well all things considered but the next day I woke to find I was crippled with pain and could barely walk.  I blamed it on all the driving and having to push my Dad’s wheelchair…………until my period arrived out of the blue :-/  My surging hormones seem to be affecting my ligaments massively as I transition into Menopause and even though my period has now finished my back and legs are still stupidly painful.  The constant shooting nerve pain right down to my ankles is particularly wearing and I can’t get comfortable enough to sleep.  I’m so over it I can’t even tell you and I had to miss Wednesday’s Camera Club as I simply couldn’t sit upright.

Thursday night I’d agreed to go to a Club event.  It was a buffet to thank those of us who had judged a recent International Photography Salon and I’d really been looking forward to it as I have no social life and rarely get to mix with other people.  Sod’s law that it coincided with having to take my Dad to the Hospital and my unexpected period, and I woke that morning feeling like road kill.  I lay in bed and cried at the unfairness of it all before eventually pulling my sorry arse together and just getting on with it.  I rested until late afternoon, had a bath, took some ibuprofen, slapped on my TENS machine and my SI belt and off I toddled.  I’m glad I forced myself to go because I had a smashing night but I’d be lying if I said I wasn’t still suffering for it three days on.

I’ve lost my reading glasses.  The case is on my over-the-bed table as it always is but the specs are nowhere to be found.  I have no clue where they could be and have searched every inch of my little house to no avail.  £160 of spectacles seem to have disappeared into the ether just before Christmas when I’m already broke.  FFS!

Speaking of Christmas, it’s five weeks away and I haven’t given it a second’s thought.  Arrrghhhh, panic!!

Today I am going out for lunch with my bestie 🙂  I don’t know why but this week I’ve felt lonely and a bit sorry for myself so I’m looking forward to seeing her, plus there’s the added bonus of someone else making me a meal for a change which is my idea of heaven.   But first I have to get my thermals on and take the hound out.  It’s a stunning, crisp late Autumn morning here in the lake district but it’s bollock freezing cold and I’m definitely going to need a hot water bottle stuffed under my jumper to keep me warm on my scooter.  It makes me look as fat as a whale but I’ve gained so much weight in the last 12 months I actually am as fat as a huge blubbery whale, so that’s alright then 😉

 

 

 

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! 😉

Weekly Roundup

I’ve had a strange week.  Up one minute down the next.  Not sleeping, still.  Rampant heartburn, which seriously gets me down.  Horrible stomach pains, which feels like my entire insides are on fire.  Diahorrea one minute, bunged up the next.  Weird head symptoms I haven’t had in years and a scary lack of energy.  Then there’s the usual joint pain, back pain, neck pain, head pain, nausea, floaters, brain fog, sore throat etc. etc. ad nauseum.

All out of the blue on Wednesday I started my period, which wasn’t due for another 8 days.  So, after a 6 month hiatus, it looks like the peri-menopause is on the move again, with my last 3 cycles being 25 days, 25 days and 20 days.  And now I’m wondering how much of my recent decline in health, insomnia, lack of energy and mood swings are down to that, how much is down to my mast cell disease after becoming allergic to all my antihistamines, and how much is just a general ME shitty patch.

Truth is, it’s impossible to know.  And irrelevant, when I can’t take anything for any of the symptoms whatever their cause (so, please, no advice on trying hormones, black cohosh or anything else because I can guarantee you, I’m allergic).

According to Google, 80% of healthy women going through peri-menopause will suffer increased “fatigue”, so the fact I’m feeling like I’ve been run over by a bus is probably to be expected.  It still sucks though.

I had my annual Doctor’s visit last week and asked her about my fainting episode during my last period.  She said that, although uncommon, it’s not unheard of during peri-menopause and she wasn’t concerned in the slightest.  As mine happened a few hours before bleeding began, she explained that we have a mix of hormones which trigger the bleed and during menopause the surges of these hormones can be extreme and affect all our other bodily systems.  She didn’t even take a blood test, but did say that if it became intrusive I should go back and see her (though it took me 6 weeks to get this appt, so I’d better not be in any kind of rush!).

On a change of subject, I’m still having problems in the area where I had my molar removed last September.  The tooth next to it has had a sore patch on the gum ever since which irritates the life out of me.  I thought it would eventually settle down, but it’s worse if anything and I don’t know what’s going on.  I see the dentist next month and only hope he can shed some light.

I was given a mouth guard to wear on my bottom teeth to help with my TMJ and I think it does, if only I could tolerate it in my mouth.  It makes my teeth ache like a son of a bitch and is just so uncomfortable I can barely stand to wear it.  I went back and had another, less tight, one made but still no joy.  I think a combination of my delicate EDS gums and my pressure urticaria are going to make using any kind of mouth brace impossible *big sigh*.

I dug deep into my energy bank today and went out for lunch with the Olds, as it’s Father’s Day here in the UK.  My reflux has not thanked me one little bit, and I could now cry with the pain, but my Dad enjoyed it so that was the main thing.

As you can probably tell, I’m feeling proper down in the dumps today and just sick and tired of being sick and tired.  It’s relentless.  The bloody weather isn’t helping things either.  It’s now the middle of June, the longest day, and it’s 15c and raining.  Again.  I can’t believe it’s summer and I still have my central heating on, FFS!  I do so much better in warm, sunny weather (about 21C is optimal) but the long range forecast is for another month of the same shite so it’s not looking hopeful.  I love Britain but our weather, particularly here in the North, is pants.

Having said all that, the wild flowers are out and there is nowhere prettier than the UK for the flowers that line our roads and fill our fields, so I’ll leave you with a picture of an Ox-Eye Daisy I took this morning.  Nature always makes me smile 🙂

Random stuff

I know, it’s a rubbish title, but it’s late and I don’t have any brain cells left to think of a better one 😉

I’ve not done a “weekly roundup” post for a couple of weeks because not much has been happening.  That’s OK by me.  I like boring because it means no new shit has hit the proverbial fan and life is just plodding along.

I made the mistake in my EDS update post of bragging that my wrists were good and I hadn’t had to use my braces this year.  Why do I say stuff like this?  Why?!  The Gods were listening weren’t they, sneakily little critters, and this week my right wrist is killing me.  So I’ve had to wear my brace.  Which is OK when I have my long-sleeved t-shirt on, but my dwindling hormones mean that as the evening progresses I get hotter and hotter and am typing this in a cami top and my undies – if I wear anything else I’d internally combust.  So I have to wear my brace over bare skin which means this happens:

Dermographism Flippin’ itchy dermographism.  I actually had no idea there was a pattern on the inside of the brace which has caused the little white bumps, and the line up the middle is the join in the fabric.  FFS!  So the brace has had to come off and the Sudocrem has had to be slathered on.

I’ve had a few more photos accepted at iStock – you can see my portfolio here.  I’m now waiting for a new batch of photos to be accepted, which takes an entire week.  Employ more staff for heavens sake, it’s not like Getty can’t afford it!  I have had another sale on Redubble too, so that was fab – it’s weird to think that someone in America is walking around with a picture of my little Bertie as the skin on their iphone 🙂 .  You can see my stuff for sale here – all the images can be bought as cards, stickers, posters, laptop skins, phone skins, and even leggins, scarves and duvets!  I have a similar UK based site here.

I was watching TV this morning and the BBC were doing some cookery thing with celebrity chefs, one of whom made a yeast free pizza base with flour and yoghurt.  Obviously yoghurt is out, but Quark cheese is very similar both in taste and consistency, so I’m going to give it a bash and see what happens.  Watch this space.

I shall leave you with the following quote Louise from over at Divorced, Diseased and Dangerous, shared on her Facebook wall today.  Priceless 😉

Scratchy Skin

My itchy skin stopped as soon as my period finished – make of that what you will.  I’m just thankful not to be scratching myself raw – it must’ve looked like I’d got lice ;-).  I’m still having all sorts of niggly skin issues though.  I put on a pair of jeans recently that I don’t wear much andPhoto of dermographism the photo shows some kind of welt across my stomach, though it didn’t go all the way round my body so I’m not convinced it was due to the waistband. The jeans weren’t particularly tight (I’ve got much tighter pairs put it that way) and I had a long sleeved t-shirt tucked between the waistband and my skin.  It didn’t look like my usual dermographism welts and didn’t itch – “galloping dog rot” is what I’ve put it down to, it’s a common affliction in my household 😉 .

I’ve also been plagued by ‘bug bites’ that I’m still not convinced are bug bites.  How can you get bitten when you’re covered up and how do bugs find their way into your bra, pants and even belly button?!  The blisters itch like a son-of-a-bitch (despite using prescription strength steroid cream on them) and last for up to a fortnight.  Here are a couple of examples from last week: the first appeared under my boob and the second in my navel.

Photo of bug bite?Photo of bug bite?

 

This next photo is definitely a bug bite.  I saw some fabulous fungi in the woods while walking my dog, so decided to go back and photograph them.  Stupid here forgot there would be all sorts of nippy little critters in amongst the bracken and because it was a glorious-for-September 22C wasn’t wearing long trousers.  7 insect bites later and I really wished I’d used a bit more common sense.  The fungus photo turned out great but!

Photo of bug bitePhoto of fungi

Mast Cell Appointment

19th June 2013 was D-Day for my mast cell appointment with an Immunologist from Preston.  I was given his name by Mastocytosis UK, a support group for people with Mastocytosis though they have requested that I remove his name from this blog post which is decidedly unhelpful – blame them not me.  He was listed as dealing with Mastocytosis and complex drug allergies and appeared ideal.  I’m learning, however, that appearances can be deceptive.

The appointment was extremely rushed, with the doctor talking at a hundred miles an hour in a heavy accent.  I’d hardly slept and had travelled 70 miles south to another county on my own for the appointment.  As I have ME, this is massive undertaking and by the time I reached the hospital my head was so full with stimulation and fatigue and dizziness my ability to concentrate was almost zero.  I’d done an extensive history and list of symptoms for my GP, who then hadn’t sent them to the Consultant, so I had to start from scratch on a 19 year illness history from memory, most of which he hurridly dismissed as irrelevant.

Almost straight-away he diagnosed Chronic Idiopathic Urticaria, despite occasional hives being the least of my worries.  He seemed to accept that I reacted to everything I ate, but explained that I wasn’t reacting to food per se but that I had an autoimmune condition whereby my body was attacking my own mast cells.  And despite no mention of Mast Cell Activation Disorder, he then went on to describe it beautifully!  He explained that my mast cells were hyper-excitable and were de-granulating inappropriately, releasing over 25 chemicals into my blood stream, one of which was histamine which was causing many of my allergic-type symptoms.  He said that mast cell disease seemed to be more common in people with Ehlers-Danlos Syndrome and I wasn’t the first EDS patient he’d seen in his allergy clinic.  So far so good (ish).

I explained that I’d tried a low histamine diet, which had helped the food reactions substantially.  He completely dismissed the whole idea, saying no placebo controlled trials had been done on such a diet and he was fairly sure the decrease in symptoms were due to either the Placebo Effect or the fact that my diet is just more bland than usual, which often helps with Urticaria.  This was my first indication that the consultation was going to be less than helpful.

Skin Prick Testing

I was then told I was going to have skin prick testing for allergens, though he didn’t expect anything to show up as my condition wasn’t a true allergy.  He asked me what I’d like to be tested for, but as I absolutely wasn’t expecting this I couldn’t think of anything from the hundreds of bottles I was presented with :-(.  If I’d had my wits about me I would have requested testing for high histamine foods, like tomatoes and fish – what a wasted opportunity.  So I was tested for wheat, milk protein, casein (ie cheese), candida albicans, yeast, cat, dog, weed/grass/tree/birch pollens, dust mites and moulds.  And shock of the century, had a strong reaction to birch pollen and a milder reaction to dog!!!  The doctor was amazed too as he expected zero reaction, particularly as I’ve had pets all my life with no problems and have never had hay fever.  I was told that birch pollen allergy begins in child-hood and asked if I’d been born near woodland – er, nope, born near Wolverhampton where there is barely a tree to be seen.  So that’s all a bit of a mystery.  And, thankfully, I own a Miniature Schnauzer which are classed as anti-allergy dogs as they don’t shed fur and therefore dander.  My brother, though, has been allergic to dogs since child-hood so my theory that mast cell disease is hereditary has gained more weight.  The good thing to come out of the skin prick test is that I’m not allergic in the true sense to dairy, which was something I had long queried as, being vegetarian, I eat massive amounts.  I already knew I wasn’t allergic to wheat or gluten as I’ve previously had a stomach biopsy for Coeliac Disease.

Mastocytosis

He then went on to say that he was 50/50 on whether or not I could have full-blown Mastocytosis based on my symptoms, so he ordered a Tryptase blood test which I fully expect to be negative.  He does also want me to have a 24 hour urine test for N-methyl histamine, but that has to be done locally as obviously I can’t travel back to Preston to hand it in.  He did not, however, even look at my skin for signs of Urticaria Pigmentosa which I thought was extremely poor practice.  I showed him a photo I’d taken of the ‘bug-like’ blisters which I keep getting and he said he had no clue what they were, sorry!  No mention of testing for Darier’s sign, despite my life-long dermographism.  You absolutely cannot rely on the Tryptase test to rule out MCAD, as it usually only shows up in the 24 hours after you’ve had an allergic reaction and I’ve been avoiding anything which sets off my allergic reactions like the plague.  The skin is a vital indicator of cutaneous mastocytosis, and the fact my skin wasn’t examined, despite having various skin issues, was very bad practice.

I also showed him a photo of the reaction I’d had to a mosquito bite last year, and he said that I was obviously allergic to the saliva in mosquitos, sand flies, midgies, gnats and other biting insects.  Which could be true, but on the other hand an exaggerated response to insect bites is also an important indicator of Mast Cell Activation Disorder, which really he should know :-/

Drug Reactions

So, on to my multiple and almost total drug reactions which is the main reason for my appointment.  He said they were Multiple Chemical Sensitivity, and that a small proportion of people with M.E. have MCS.  Which again is true, but in my case is absolute bollocks.  If I had MCS I’d react to inhaled chemicals too, like hairspray, paints, fumes, household cleaning products, washing powders and a host of other things – but I do not.  I have zero problems with anything like this.  My only issue is with oral drugs – I can even cope OK with local anaesthesia and skin gels like Ibuprofen.  If I had MCS this would not be the case.  So, yet again, my drug reactions were completely dismissed and totally mis-understood.  I know they are part of Mast Cell Activation Disorder, but as he obviously had no knowledge of MCAD he was clueless on this aspect of the disease.  At this stage in the proceedings I tried very hard not to burst into tears and I am back to square one in trying to find someone to diagnose my drug reactions.

The next part of the consult was also mind bogglingly ridiculous.  He said that palpitations, anxiety and flushing following drugs weren’t part of a mast cell reaction, so he had no idea what those symptoms were all about.  O-M-bloody-G.  Palpitations and flushing are some of the main symptoms of Mastocytosis for God’s sake (you just have to Google it to know that), let alone MCAD.  If he’s a Masto expert how can he not know this?!!!  So he wants to refer me to an endocrinologist to check I don’t have any endocrine tumours.  For heavens sake, if I’d had a tumour for the past 15 years I’m fairly sure I’d be dead by now.  Then the consultation got even more bizarre, because he saw the flushing I get on my chest when I’m stressed/tired/hot (and by then I was all 3 and my stomach, chest and face were beetroot red and blotchy) and said that anti-histamines would clear that up, so he clearly thought they were a mast cell reaction.  WTF?!  I’m sure you can understand that, by now, my brain was fried and I was totally Confused.com 😦

Treatment

He wants me to try an H2-antagonist, but I can’t remember which one he said.  I asked him what would happen if I reacted to it and he said “oh, you won’t”, which shows how dismissive and uninformed he really is about drug reactions.  In the past I’ve been told it’s impossible to react to steroids and valium but guess what – my body violently disagreed.  I was not given an epi-pen in case I do react, so yet again I’m facing trying a drug at home, alone, with totally unknown consequences, some of which could be fatal or at the very least make me so ill I’m hospitalized (as happened on my last reaction) or make me bedridden for months.

There was some passing mention of the mast cell stabilizer Gastrocrom, but only if the anti-histamines don’t work, or if my Tryptase test comes back positive for Mastocytosis.

Conclusion

The upshot of the appointment is that I came away with a diagnosis of Autoimmune Idiopathic Urticaria, which was explained to me as an autoimmune mast cell disease.  I’ve Googled this and can find virtually nothing about it!  In my mind it’s just another name for MCAD as, from how it was explained to me, it fits MCAD perfectly.   A diagnosis of chronic urticaria, however, focuses totally on hives which rarely bother me at all, and dismisses totally my food and drug reactions which are anaphylaxis in nature (and potentially life threatening).  It cannot end there.

In advance, I’d made an appointment with my GP to discuss the consultation.  I explained that I wasn’t happy with the outcome and that we need to find someone else to see about MCAD.  I just don’t know who, and my GP is clueless as she’s never even heard of MCAD.  Where do I go from here?  Who do I turn to for advice?  I feel quite tearful at being left alone, yet again, in the mast cell wilderness.  We are going to wait to see the results of the tryptase test, and my GP will arrange the 24 hour 1-methylhistamine urine test (both of which I expect to be negative), then I have to start all over again to try and find someone to diagnose me properly.  But for now I’m exhausted beyond belief and will need some time to recover from yesterdays ordeal.

Splints & Braces

Joint supports and braces are an important tool for managing Ehlers-Danlos Syndrome, particularly for me as I can do very little physiotherapy to strengthen the tendons and ligaments which support my joints naturally due to also having M.E.  The joints in HEDS are hypermobile, meaning the surrounding tendons and ligaments, which stretch to let the joint move, are over-elastic and the joint is allowed to move in an extended way it’s not designed for.  Supporting a joint with a splint or brace still allows the joint to move freely, but in a normal range of movement.  This reduces the chance of ligament and tendon sprains, strains and tears and stops the joint from wobbling about in, or out, of its socket.  If your medical team tell you that splints and braces are a bad idea as they weaken the muscle and therefore shouldn’t be used, find another person to treat you – they are vital to stop some joints from sub-luxing (partially dislocating) or in some cases fully dislocating, and are also needed when the joint is injured to help it heal.

HANDS & ARMS

My joint supports were originally provided by two separate departments, Occupational Therapy and Orthotics at my local hospital and it’s important to be properly assessed and measured by a trained professional, but as I’ll explain at the end of this post now I know what I need I tend to just buy my own.

My Occupational Therapist, Fiona Caven at the Cumberland Infirmary Carlisle, has been a treasure and incredibly helpful in trying to find ways to support  my bendy hands and fingers.  It took about 8 months to find a thumb splint which worked for me without setting off my Dermographism or rubbing my skin raw, but she thankfully persevered.  I now have 3 thumb splints, depending on what I’m doing:

Photo of a thumb splint

Full thumb cast

This is a custom-made full thumb cast and is the most supportive of all my thumb splints.  I wear it when I need heavy duty support, such as gardening or lifting heavy objects.  It’s not the prettiest splint in the world, but it really does do its job.

Photo of Murphy ring splint

Murphy ring splint

This is a Murphy silver ring splint, much coveted by people with HEDS.  It looks like a fabulous piece of jewellery and is my splint of choice if I’m going out somewhere posh.  However, it is also the most uncomfortable of my thumb splints, rubbing my skin raw and setting off my Dermographism.  If you think about it, every time my thumb tries to over-extend it’s stopped by pressing against a rock hard piece of metal which, after a while, really does start to hurt.  I can only wear this splint for a few hours before I’m itching like mad, have red wheals under the bars and am desperate to take it off!

Photo of Oval8 thumb splint

Oval8 plastic thumb splint

This is an Oval8 plastic thumb splint, and is the splint I wear nearly all of the time.  Not as pretty as the Murphy, but because of its colour most people don’t even notice I’m wearing it.  It’s comfortable, doesn’t rub, and holds my joint in place really well.  Saying all that, I’m still ready to take it off by about 4pm each day as by then it’s starting to itch.

I have Oval8 splints for virtually all of my fingers as well as my thumbs.  After suffering constant pain for years, wearing finger and thumb splints for several months allowed my joints to heal and these days I only need them if I’m having a flare up.

My hands in general can often feel tired, sore and over-worked and, when I was first diagnosed at Manchester Infirmary, the hypermobility OT there gave me some Isotoner compression gloves that gently support my hand ligaments.  Ideally, I could do with a size smaller, as I have child-sized hands and even the Small size is too big for me, but I do like the support they offer my whole hand, even if they’re pretty goddamn ugly!

Every few weeks my wrists decide to hurt, usually if I’ve spent too long typing on my laptop or doing something which involves twisting my wrist joint, eg. crocheting (I crochet small garments for AIDS orphans in Africa).  So for a few days I’ll wear a wrist support just to give my tendons and ligaments a break.

Photo of wrist brace

Wrist brace

This particular brace, provided by the Orthotics department at my local hospital, has a removable metal bar which can be inserted into the brace for added support and stabilzation but I find it then makes daily tasks impossible because it doesn’t allow for any bending movement in the wrist so I never use it.  Because this splint is worn next to my skin it itches me like mad, so I bought a thick pair of footless tights, cut the ends off, and wear these under the brace.  It doesn’t stop the itching entirely but it at least makes it wearable.  You can buy these supports on Amazon here.

My elbows are severely hypermobile and I’m desperate to find some supports that I can tolerate but unfortunately every one I’ve tried sets off my Dermographism.  The thing about elbows is that they need to bend inwards, and none of the supports made seem to take this into account.  Consequently, within an hour of wearing one I feel like the circulation to my hands has been cut off, and I have huge itchy wheals where I’ve bent my elbow and the support has dug into my flesh.

Photo of Dermographism

Dermographism caused by a neoprene elbow support

FEET & LEGS

I have very high foot arches but these collapse and cause flat feet when I stand or walk, which causes my ankles to roll in, which causes me to have ‘knock knees’ and which causes havoc in my pelvis and lower spine.  My first referral was to Podiatry, who gave me some basic insoles and while these were OK I knew I could do better.  I was next referred to Orthotics, who did a foam cast of my foot and made me some custom insoles which you would think would be brilliant but caused me foot pain so bad I couldn’t walk 😦  So I started on a three year quest for the right insoles for me, eventually settling on Solford insoles developed by Salford University (you can also buy these on Amazon).  I have the firm blue insoles for my floppy wellies (gumboots) and the flex orange insoles for my ankle boots and shoes.  I also have the heel wedges which stick on the underside of the insoles.  They really suit my feet and are so comfortable I never know they are in my shoes.  They also last really well which is important as they’re not exactly cheap.  Initially, wearing insoles made my knees and hips ache as they were forced into normal positions they’d never been in my whole life but it didn’t take long to get used to them and they’ve helped my ankle and knee pain enormously.

Being as though my ankles don’t roll as much now I use good insoles I only occasionally need extra ankle support and have opted for Wellgate slimfit elasticated supports because they still enable me to wear my regular boots and shoes and are specifically designed to fit women.  They wouldn’t do if I had a serious ankle injury but for light support I like them, and they fit me well even though I only have tiny size 3 feet.

My knees still give me a good deal of gyp so I do regularly need some sturdy knee braces, particularly when I’m walking the dog.  I’m not going to lie, firm knee braces aren’t the most comfortable things in the world but of ones I’ve tried I like Boots own brand advanced adjustable supports the best.  Despite only being tiny I can adjust them as tight as I like and they do stop up even when exercising.  I wear them over the top of my jeans or pyjs and find that because they’re not next to my skin they don’t itch too badly.  If you don’t get the placement exactly right, though, they can dig in behind your knees so I have to make sure I have them well up above my knee joint.

SPINE

Like many people with HEDS, the worst of my hypermobile joints are in my spine.  I also have an exaggerated mid-back curve, called Lumbar hyperlordosis, which further strains the ligaments, muscles and tendons which support my spine.  Consequently I have had serious back pain for 40 years.

Having torn the ligaments around my SI joint (the triangle shaped bone at the base of the spine) I now wear a Serola SI belt whenever I walk anywhere.  It’s really comfortable and I don’t even know I’m wearing it.  It doesn’t limit movement in any way, just helps support the SI joint.  If I don’t tighten the side supports I can wear it all day long, and do if I’m having a bad pain flare.  The only downside is the faff of having to take it off and on when I need the loo!

Photo of Serola SI belt

Serola S.I. belt

To support my mid back I bought an Oppo lumbar support myself online, though Orthotics do provide them on the NHS.  It provides good support and stabilization, but anyone who says wearing a back support is fun is lying!  It’s uncomfortable when you’re sitting, feels like it’s cutting off the circulation to my stomach and I defy anyone to eat wearing this torture device.  Consequently I only ever wear it when I’m desperate.

Photo of back support

Oppo back support

In summary, while splints and braces are necessary to support joints and prevent injury they are not an easy option and are best provided, and fitted, by a professional who can offer alternatives for supports that are unsuitable, and adjust splints and braces so that they are as comfortable as possible given their limitations.  Having said all that, you only get one of anything on the NHS and for things like insoles, where I have wellies, ankle boots, trainers, slippers and shoes, you realistically need several pairs or you’ll spend half your life swapping them around.  Braces worn next to your skin, like wrist supports, get sweaty and need to be washed often or they genuinely pong, so again you need at least 2 pairs for wash and wear.  Consequently, I gave up with the NHS once I’d been measured and fitted and now buy my braces myself online, mostly from Amazon.  If you have mast cell issues you may find braces make your skin itch or set off pressure induced dermographism, which can be problem bearing in mind they have to be tight or they’re no use!  Wearing them over the top of clothing can help.