Emotional Lability

I shy away from talking about the emotional symptoms of my illnesses simply because there’s still a perception amongst some people that M.E. is a psychological disease and I don’t want to re-enforce that myth.  The slightest hint that being chronically ill affects my mood and I can hear the “I told you she was depressed” whispers from my bed.

Of course being chronically ill affects your emotions.  You’d be inhuman if it didn’t.  The boredom, the isolation, the frustration, the hopelessness, the wearing never-ending struggle with pain, nausea, dizziness, exhaustion, weakness and 50 other symptoms sucks.  But I am not depressed.  I had clinical depression throughout most of my teens, I know what that feels like and know for sure I don’t have it now.  Being fed up, overwhelmed, at my wit’s end and downright sodding miserable some of the time is not depression – it’s a normal reaction to a shitty situation.

However, my illnesses can and do cause physically-induced “emotional” responses.  When mast cells degranulate they affect neurotransmitters like dopamine and seratonin, both of which affect mood.  The subsequent increase in heart rate, widening of blood vessels, drops and surges in blood pressure and production of adrenaline cause feelings of intense anxiety.  These symptoms mimic a panic attack, which was the diagnosis I was given for years every time I reacted to a drug even though I didn’t have anxiety at any other time.  If only I’d had my tryptase levels measured during one of these events we would have known it was an allergy response driven by my immune system, but the second you’re given a psychological label the medical profession stop looking for a physical cause.

My M.E. causes what’s termed “emotional lability”, a spectrum of emotional symptoms which vary from patient to patient and which are found in many other neurological diseases eg. Multiple Sclerosis, Motor Neurone and Parkinson’s.  I find my own personal emotional lability really hard to describe.  When I’m over-tired I initially feel flat and un-emotional.  I often go pale and become monosyllabic.  I then start to feel weepy, like I could suddenly just burst into tears for no good reason.  I find it difficult to cope with decisions or the slightest stress.  I can become intensely irritable and snappy.  It’s a bit like having sudden onset PMT over which I have absolutely no control.  The only thing which makes me feel better is complete rest, lying down in bed in the quiet, often for several hours.

Emotional lability has a physical cause.  Treating it with anti-anxiety meds or anti-depressants isn’t the best solution – you have to look at the physical reason and treat that.  I know if I do too much I risk being an emotional wreck for a few hours, which is why pacing when you have M.E. and not doing the whole “boom and bust” thing is so important.  I know if I have a mast cell reaction I’m going to feel like I’ve popped a couple of speed pills.  When I could tolerate H1 anti-histamines they really helped but sadly now I react to them I just have to ride the reaction-induced-anxiety out, although I find having a nice warm bath does help along with distraction techniques like doing some crocheting (after I’ve stopped puking, shaking and fainting obviously 😉 ).

After all these years I still find the symptoms of emotional lability hard to handle and difficult to admit to for fear of being thought nuts.  For me they come on really quickly – one minute I’m feeling fine, the next I feel like I’m going to collapse in a heap on the floor sobbing my heart out like someone’s died.   Or in the case of a mast cell reaction, one minute I’m fine the next I’m pacing the floor like a raving loony tunes and feeling like I want to rip my skin off.

The good thing for me about emotional lability is that it passes.  Unlike depression which follows you around every second of every day like a huge dark cloud, the symptoms of EL are transient and will go when I’ve rested enough or when my mast cells have stopped having a hissy fit.  I just have to remind myself of this fact when I’m in the middle of a melt down which is oftentimes easier said than done!

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9 thoughts on “Emotional Lability

  1. TC

    I never get depressed, but I do have anxiety caused by the autonomic dysfunction.
    I don’t think that I had or have ME, as I think the EBV triggered the autonomic dysfunction in my body and the symptoms are identical. I had ‘ME’ for 8 years before diagnosis by a professor of neurology. I stuck with that label for years and then 9 years ago I developed POTS and neuropathic pain. Then in the past three years I have been diagnosed with EDS and now possibly MCAD.
    This is just my theory and I have discussed it with other people with ME/CFS and they dismiss the POTS, Auto Dys, EDS and MCAD possibilities. The thing is that I would have done the same a few years ago.

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    1. Jak Post author

      Hi TC

      As there is yet no diagnostic test for M.E. there will always be people diagnosed that don’t have it. That said, it is possible to have M.E., Ehlers-Danlos, POTS and MCAD all at the same time – I’m walking testament.

      For me, post-exertional *malaise* is the hallmark feature of M.E. Post-exertional *fatigue* is a symptom of lots of diseases.

      POTS is seen in MCAD, M.E. and EDS so in the UK is usually classed as a secondary symptom, not a primary disease in its own right as it often is in the States.

      1 in 10 people with EDS are also thought to have MCAD as the two are linked. As outlined in my Canary post, I think M.E. is a type of mast cell disease so it comes as no surprise that many people with both EDS and MCAD also have M.E.

      I wrote a blog post on this issue here https://mastcellblog.wordpress.com/2013/05/18/eds-me-pots/

      Jak

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      1. TC

        Hi. Yes, I can see what you’re saying, but in my case after the EBV, the symptoms I eventually put down to ME, I think are features of the other mix of conditions. This is my own personal view. A lot of the people I know with POTS and/or EDS say they get post exertional malaise. Having had ME since 1984, I was always sure that I had it, but in recent years I have read so much about POTS and dysautonomia being triggered by EBV. I also know that roughly 27% of people with ME have POTS and 70% of people with EDS go on to develop POTS.
        Although I had a few dislocations in my earlier years pre-EBV, I was relatively healthy until then and afterwards I was never well again. I believe that, like Dr Diana Driscoll, that MCAD is behind POTS, EDS, MS and many other conditions.

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  2. Glo

    So right. When you try to explain to people that you’re having this mental reaction because of something you’ve eaten you get the “I’m dealing with a nut case ” look. No matter what you show them or how much you explain they never really believe you. They just think you’re having mention health issues in general. Went through this for years with my family, friends and primary care doctor. To this day my sister doesn’t believe there’s really anything physically wrong with me. Frustrating

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  3. artfulblasphemer

    Anxiety is such a female “disorder” that just saying, “I have anxiety” to a practitioner is such that they listen to nothing else. I currently have a “very unusual” and “interesting” arrhythmia, yet, the fact that my heart working incorrectly might be the cause of my anxiety (you know, as opposed the notion that I have ovaries therefore I am anxious) is a much harder sell than it should be–of course I’m having terrible anxiety, my heart goes from 113 to 45 and my blood pressure goes from 106/68 to 96/48 in minutes…seems clear to me, but no, they want to take the anxiety separately.

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    1. Jak Post author

      Absolutely! Every ailment women have has to be psychological. I started having back pain after falling through the first floor of an outbuilding onto my Mum’s car parked below when I was 11. After lots of x-rays the hospital could find nothing wrong. My pain got worse and worse. After 4 years the hospital decided that, being a teenage girl, I was obviously attention seeking and told me to get a grip.

      I knew they were wrong and sat in my GPs office and refused to budge when I was 16 until she referred me elsewhere. I was only in Newcastle hospital 2 days when I was told I’d been born with spinal stenosis and needed decompression surgery!!!

      If I’d been a teenage boy I would have been referred to the orthopoedic specialist years before.

      Jak x

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  4. Lis a

    TC- If you are in the US, could you tell me the professor of nuerology who dx your ME. And also who dx your ED. I have mast cell activation syndrome and many much more. Thank you

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  5. Zoefoodandme

    Thanks for opening up about this issue. I’ve been reading your blog for a while now and this post definitely hit home. I often suffer from emotional lability when I hve flare ups and if I have ever tried to explain it to someone they never understand and just tell me I should go see a theapist, which I know will not help. I know that it always passes, but it is hard to remember when you are in the midst of it.

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