M.E Pain - Describing the Indescribable

Hi,

One subject that I am unable to talk about is that of M.E pain. It isn't something I have any experience of....well, apart from a new development in the form of constant sharp pain in my little and fourth toes on my left foot ( POSSIBLY M.E related). This new pain does not make me an expert in M.E pain or how to manage it though! Anyway, earlier this week I was speaking to Ryn, a friend who I originally met through Foggy (she wrote a blog for Foggy during the first World Tour and Foggy rode her husband's motorbike...bucket list!!) but who has gone on to become a true friend and confidante. I have discovered that Ryn is the perfect person to go to for love-life advice...she is determined to help me 'see the light' and to convince me that my 'ideal man' is out there somewhere. Yeah yeah. Anyway, back to pain.... I asked Ryn if she could write about her own personal experience of M.E pain. As I have said before, there isn't a one type fits all description for any M.E symptom/experience, but this is hers. 

Me and my M.E / C.F.S  pain.

My pain is like varying levels of flu-like aches and pains which have been constant since I was G.P diagnosed with P.V.F.S February 2014 and later, a consultant confirmed a diagnosis of M.E/C.F.S./P.V.F.S  September 2014.

It is mainly joint and muscular pain and includes inflamed glands in my throat, armpits and groin. My pains are from my head to the tips of my fingers and toes. Sometimes it feels so

overwhelming and never-ending, I can’t help but give in to self-pity, tears and frustration.  But so what? A good cry does me good! Thankfully, ways of coping with my pain have come to me with the support and ideas of people close to me and from the twenty years I worked in the healthcare profession.    

When I can, I‘ll use ‘distraction’ as a way of dealing with the pain.  I’ll read my kindle (it’s back-lit so it's perfect for my being light sensitive as I can adjust its light), or watch t.v etc.  Short visits from family and friends help, as does using social media…. when my head is clear enough from brain fog lol.   Feeling isolated doesn’t help my pain management. I generally take four pain relief tablets at a time, 2 x 30/500 Co-Codamol and 2 x 200mg Meptazinol – although together they can take the edge off the pain, it isn’t always enough.   At its worse, the pain down my spine radiates outwards.  I take my pain relief tablets and my husband rubs ‘Deep Heat’ into my back for me. As gentle as he can be, his touch / the application of the cream hurts me even more until it’s done, then I can rest and hopefully sleep the worst of the pain away.

Hot water bottles can be a true comfort to my joint and muscle pains.  I can’t make them up myself but if no one is there to help, I have a longer than average wheat bag (from Boots Chemist) which I can now often manage to heat in the microwave.  When I lay in bed (often on my side as easier breathing being Asthmatic), I use a pillow between my legs which takes the pressure and discomfort off my knees and ankles when they touch, skin to skin.   A ‘hot as I can handle it’ bubble bath is helpful too - I use a bath chair so can’t fully lay down and relax under the water but just to get the heat to my legs and hips seems to work wonders for them.   I use ‘Infa-care’ or ‘Sanex’ bubbles as are gentle to my skin.   A lightweight blanket/shawl wrapped around my shoulders or one covering my hips to my toes helps ease my pain too. I believe it’s the warmth they generate that alleviates pain.  In bed, when my legs and feet are cold and painful, I use an incontinence sheet under the bed sheet, under my lower body.  They are plastic one side and quilted absorbent paper on the other.  The heat builds up quickly and is a more gentle heat than a hot water bottle (B&M sell ‘puppy pads’ which work the same as incontinence sheets and a fraction of the cost).

My pain levels dictate what I can do and when. I can't manage personal care as and when I use to or get out of bed when I'd like to. Today, it's been a couple hours at least since I've been awake but my pain reduced enough that I've only just managed my shower - still using a shower chair as the act of showering is still exhausting and my balance not great! Pain levels do control what I do and when, 24/7.

I’ve always said ‘I don’t do pain’, maybe I have a ridiculously low pain threshold, I don’t know.  But it’s amazing the levels of pain you learn to live with because you have no choice and I will do/take what I need to help my quality of life. In the past, pain has knocked me mentally and emotionally sideways so I try not to suffer in silence anymore…..it really isn’t healthy. Sharing my pain (yes really!) has allowed others to offer me their support and own ideas on how to get through it, some of those ideas have worked for me so I’m very happy to be able to share them with you too J    Please don’t suffer alone.

Ryn xx