Tag Archives: management

Self Care

EDS Support UK have caused a bit of a ruckus on their Facebook page this week by stating “You may feel like you’ve made a breakthrough when you finally get a diagnosis, only to find that you are discharged and there is no-one to oversee your care as would be the case with other illnesses that affect multiple systems of the body. While there is no doubt that this lack of support is unfair, it is perfectly possible – indeed necessary – to learn to effectively manage your condition yourself.”

I must admit when I first read it I thought to myself “are you kidding me?!” and can see where the anger from patients is coming from, but on reflection I think I can see where EDS UK intended to come from, even if the phrases used weren’t particularly well thought through.

There are just 2 specialist NHS hEDS centres in the entire country (Sheffield and London) and if, like me, you live hundreds of miles from either they might as well not exist at all.  To make matters worse, if you have other conditions such as M.E. they won’t take you on as a patient, which I’ll explain further below.   So it actually is necessary to learn to manage your condition yourself.  But, and it’s a big BUT, when first diagnosed you really, really need some help and advice on how to do this and it is non existent.  Nine years after diagnosis I still don’t know the difference between a sprain, a tear and a partial dislocation – the pain feels the same to me – and I have had no guidance on how to distinguish between them or how to manage any one of them.   When I woke barely able to breathe or move due to what I guessed was rib slippage I had no-one to turn to for confirmation or advice on how to manage what was a scary and intensely painful symptom.  So while self-care is a vital part of any chronic health condition it must be based on adequate information and advice, and it’s that which is lacking from the point of view of most hEDS patients.

I think most patients took issue with the phrase “it is perfectly possible……to learn to effectively manage your condition yourself” which, actually, isn’t the case for some people.  hEDS is a spectrum disorder and while for those mildly or moderately affected self-care, with the guidance of trained professionals, may be adequate, it may not be suitable for those on the more severe end of the spectrum.

The next part of the EDS post which caused anger was this: “The day-to-day management of EDS is based around the right kind of exercise, physiotherapy and pacing”, which is all well and good if you can do exercise or tolerate physio.  Because of my M.E., however, I can’t so I am just left to get on with it on my tod.  Even if you can tolerate physio the number trained in hEDS is minuscule and, as EDS UK point out, any physio has to be the right kind because the regular kind can make us bendies worse!  I’m lucky where I live in that some of the physios at my local hospital have received special training in hEDS, however they discharged me because the exercises they were giving me made my pain and fatigue so much worse due to my M.E. (prescribing exercise to an M.E. patient is a bit like giving sugar to a diabetic), which is why the inpatient hEDS unit in London doesn’t accept patients with an M.E. diagnosis!  So I have been forced into self management because no-one wants a complex patient like me on their books or has any idea how to help me.

Many people with hEDS also have other conditions.  M.E. is common, as is Mast Cell Disease, but also other stuff like arthritis, auto-immune disorders and POTS/dysautonomia and although the EDS UK post mentions you will need help with these the help simply isn’t there.  So not only are you left to manage hEDS on your own you’re also left with all these other conditions for which there is no help or advice.  And I think it’s for this reason so many people were complaining about the EDS UK post.  Yes self care is an important part of managing hEDS but it shouldn’t be the only part, yet for the majority of patients it is.

Many support organizations are based in the South East, where they tend to live in a lovely little bubble.  I have a friend who lives in London and there are no less than 5 hospitals within a three mile radius of his house, whereas my local hospital is 30 miles away and the nearest specialist hospital for complex issues is 90 miles away.  Specialist care in Wales, N.Ireland and Scotland is even worse and I do get immensely pissed off at the attitude of charities who think everyone in the country has the same access to care as those living in the South East.  To make matters worse, when they hold conferences they are almost always in London, or if not London Birmingham, which if you live in Abergavenny, Whitehaven or Aberdeen might as well be on another planet.  As you know, I am seeing a MCAD specialist in Sheffield next month and am having to make a 6 hour return train journey for the privilege of having a half hour appointment!  Much more needs to be done to hold events, particularly teaching seminars, around the country so that our local doctors, physios and health care providers have the opportunity to receive information on our conditions and are then better informed to help us, and also so that we patients can attend and glean vital information on self care.  Being London-centric is my biggest complaint of all the charities.

So, while I agree that self care is a necessary part of managing hEDS it needs to be based on information, advice and guidance given by professionals trained in hEDS, and it’s this which is lacking.  It also can’t be the only type of care available, and again for the majority of patients there is no other help, not only for their hEDS symptoms but for all the other complex conditions which arise as part of, and alongside, their connective tissue disorder.  It’s a situation which needs more urgently addressing.

Misbehaving Mast Cells

I woke up at the weekend with huge hives on my butt.  I’d been expecting them.  Stress is one of my biggest mast cell mediator triggers and I’ve been under a shed load of stress in recent weeks (the reason why stress causes mast cells to degranulate is briefly covered in my Canary Post).

I received my MCAD diagnosis four years ago now and I’ve come to recognize most of my mast cell triggers.  Some, like pollen release in Spring, I can do nothing about although I take precautions to minimize the effects like wearing sunglasses outdoors and not leaving all my windows wide open, while others like high histamine foods I can more successfully avoid.  Acute stress, like my Mother being suddenly unwell, is something we all have to deal with at some time or another and something we just have to manage as best we can.  While my Mum was hospital this included days where I stayed at home and rested instead of visiting her (the guilt was awful, especially as it meant my poor Dad, who was also exhausted and stressed, had to visit twice in one day), making sure I still ate well (tricky as I can’t just buy a sandwich or meal out, so had to be super organized to always take home-made food with me) and finding ways to chill out despite the chaos (I find listening to talking books relaxing and non-taxing and was something I could do on my long drives to and from the hospital).

There are two types of mast cell activation: acute and chronic.  Acute mediator release is severe and blatantly obvious and thankfully only happens for me when I take certain most drugs.  Chronic mediator release can be much more tricky to detect and it took me a while to know the signs that my mast cells were misbehaving.  Symptoms will be different for all of us, but my tell-tale signs of chronic mediator release are:

  • Insomnia.  I’m exhausted and go to sleep fine, then wake up several times in the night and struggle to get back to sleep.  This is usually accompanied by parasomnias, in my case nightmares, sleep walking and sleep writing.
  • Needing to pee more, particularly during the night.  When my mast cells are calm I never need to get up in the night for a wee, but when they are releasing I get up between 2 and 6 times.
  • Feeling either unnaturally exhausted like I’ve been drugged, or unnaturally hyper.  I prefer the hyper cos I get all sorts of jobs done with energy I don’t usually have 😉
  • Sluggish bowel.  I usually go for a poop every day after breakfast (I know, TMI 😉 ) but when my mast cells are playing up my bowel stops working.  This is the opposite to most people’s experience of diarrhea.
  • Having a bunged up nose.
  • Sneezing for no reason.  And I really mean sneezing, which can go on and on……and on.
  • Back pain, which feels muscular in nature.  One of the biggest surprises of starting a low histamine diet was a reduction in the back pain I’d had since childhood which, when my mast cells are releasing, comes back.
  • Increased joint pain, which again for me feels muscular.  When my mast cells release, the mediators definitely make my collagen more stretchy/weak which makes the ligaments which holds my joints in place painful.
  • Itchy skin and scalp, without a rash.
  • Nausea.
  • Muscle cramps, particularly stomach.
  • Retching/oesophageal spasms, but not vomiting.
  • Increased reflux.
  • Increased cough and chest tightness, which may be due to the increased stomach acid mentioned above, or may not (I don’t have asthma).
  • Itching on the outside of my ears, which sounds trivial but drives me bonkers.
  • And eventually hives on my butt, which are always the last symptom to appear.

The biggest tells for me are the insomnia, peeing during the night and sluggish bowel which are sure signs my mast cells are having a hissy fit.  I can usually identify a reason and do something to change the situation, though there are times they misbehave for no apparent reason which is scary as I then have no way of controlling them.

Triggers will again be different for all of us, but my obvious ones are:

  • Drugs, which as far as my mast cells are concerned are The Devil.
  • Stress.
  • Doing too much.
  • High histamine foods.
  • Menstrual and menopause hormones.
  • Seasons – Autumn being particularly bad (which isn’t mould related because we have mould all year round here) and a warm, sunny Spring usually being particularly good despite the fact I’m allergic to spring pollens (work that one out!).
  • The metal Nickel, which gives me eczema.

I’m sure I probably have other triggers that I haven’t identified, but they can’t be that vital if they’re not causing me easily recognizable issues.  I definitely have a problem with being too hot or cold, and having a hot bath or shower brings me out in an itchy rash but I love my baths and they help my joint and muscular pain, so much so that I’m willing to put up with some transient itching which usually only lasts twenty minutes or so.  Being too cold, on the other hand, makes me feel fluey and unwell and gives me horrendous brain fog which can last until the next day.

Due to my very severe drug allergies I, for the most part, don’t have the option of managing my mast cell disease with medication.  My management strategy therefore consists of:

  • Removing or reducing the trigger, which is sometimes do-able and sometimes not.
  • A wide, balanced, but low histamine, diet which is organic/chemical free whenever possible.  This has been my literal life saver.
  • Taking H2 antihistamines for stomach acid – I’m currently not reacting to Famotidine though this may change in the future.  I have actual panic attacks worrying about becoming allergic to my H2 meds because I have such severe GERD that without them the pain makes me suicidal.
  • Taking small amounts of H1 antihistamine in Spring for hayfever symptoms – I have issues with H1s, sometimes reacting to them and sometimes not, so I avoid unless absolutely necessary.
  • Trying to get enough rest and not over-do it.
  • Trying to do some gentle walking every day, which due to my EDS and M.E. isn’t always possible but is beneficial on many levels when I can manage it.

I look on with envy at people who can tolerate Sodium Chromoglycate, supplements, Benedryl and all the other popular mast cell treatments.  Trust my mast cells to have a particular dislike for the very things which would ultimately lead to their demise – they’re wiley buggers I’ll give them that.

Recognizing my mast cell triggers has given me a feeling that I’m more in control of the situation, though whether this is actually true or not is open for debate 😉  The one thing I’ve discovered about mast cell disease is that it’s an ever changing entity and the whole shebang can alter literally overnight.  So, like any other aspect of life, I just take it one day at a time and am just thankful when I wake up and today is a good day 🙂