What’s the delay?

The cardinal feature of M.E. and what separates it from any other disease, is “post-exertional malaise”, ie. the setting in of flu-like symptoms anywhere from 24-48 hours after activity which then last for several days (at the time of the activity you feel high as a kite and like you could conquer the world).

However, I seem to have delayed reactions of other kinds.  Stress, for example, can affect me several days or even weeks after the event.  I had a really rough time in May and June with lots of hospital appointments and yet, apart from being exhausted, I appeared to cope really well.  Then one morning in July, 3 weeks after my last hospital visit and when everything was back to normal, I woke up with hives (apologies for the poor picture quality, it’s quite difficult to photograph your own backside even when you’re hypermobile 😉 ):

HivesMy hives can take weeks to subside and need very vigorous treatment, although it doesn’t help that of course I’m allergic to oral anti-histamines and can only use topical steroid creams and other local treatments.  It’s now August and these hives still haven’t totally gone.

Injuries can also take several days to really manifest.  I usually know at the time I’ve done something I shouldn’t, ie go over on my ankle or bend my finger right back, but it doesn’t really hurt that much.  I wake up the next morning and it’s obviously tender and a bit stiff.  But the day after that is when the injury seems to really kick in and I’m in agony and can’t move the joint.  This has implications for treatment, which ideally should be done at the time of the injury not 48 hours later when the damage is already well entrenched.

The only immediate reactions I seem to have are to foods, drinks, supplements and oral drugs, ie things I swallow.  Reactions to foods and medications usually start about 15-20 minutes after I’ve taken them so I’m in no doubt as to what’s set my reaction off.

Inhaled allergens, on the other hand, such as pollen can take anywhere from 3 to 24 hours to affect me and it’s only then I start with the sneezing and god-awful itchy, gritty, hot, sore eyes, although I appreciate this is ‘normal’ for true air-borne allergies and happens to other people too.

I’m not sure what the delayed-reaction thing is all about.  Surely if your immune system swings into action you should know about it then and there not 3 days, or 3 weeks, after the event?  It’s just another baffling piece of a baffling puzzle.  I can’t wait for researchers to find out what’s really going on and for symptoms like this to be explained.

 

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4 thoughts on “What’s the delay?

  1. Livvy

    Hey Jak,
    I can’t wait for the research either. I don’t get delayed fatigue so I’m not sure that I have ME but I get extreme fatigue and pain reactions from everyday activities after just doing them which I assume is eds related??? However I do get delayed slowed motor functions that can be anything from slowed reaction to paralysis of all motor neuron mediated actions. I’ve tested negative to most tests and this is not Orthostatic or tachycardia in nature or related to syncope or any histamine flares. The delayed aspect that comes after activity then hangs around for days fits with ME type response but is defiantly distinct from fatigue. I really really wish that we could quantify our symptoms better to the medical profession and get more positive dialogs going that if not came up with a miracle understanding of disease mechanisism over night would at the very least could have GPs, carers and neurologists that took seriously the huge impact on our lives and the seriousness and dibilitation these symptoms force on us. The belittling of the symptoms is so cruel. As is our being forced to desperately find some kind of management plan on our own just to try and regain to function that is dignified as living. Sorry if my words are jumbled you know what I mean in sure. We are all bloody amazing that’s all!!!!!! Absolutely bloody amazing!!!

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  2. Lisa

    It looks like ACD, allergic contact dermatitis. It is a delayed skin allergy(type IV allergy), can be to anything and you develop these by contact which can be to anything, chemicals in clothing, metals, chemicals or even organic natural thing in hygiene products, etc.
    most doctors don’t tell you about these allergies, so you have yo see a dermatologist for week long skin patch testing for type IV delayed skin allergies.

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    1. Jak Post author

      The only thing in contact with the skin on my bum is my knickers, which I wear 24/7. If it were those, why would I only get bouts of hives, rather than having them all the time? If it’s my washing powder all my clothes are washed in that, so surely I’d be getting hives elsewhere too not just on my butt? I don’t use any chemicals on my bum as far as I’m aware, apart from simple soap which again I use elsewhere on my body. Contact dermatitis involves contact, so it doesn’t seem to fit to me Lisa.

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