Adenomyosis · Endometriosis · Interstitial Cystitis · M.E./CFS · Tips

Pinpointing Pain – It Can Be Tricky to Manage

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I can’t think of a time where I wasn’t in pain.  There are quite a few times during the day, or when I wake up in the morning, that I find myself trying to distinguish where my pain is and what is causing it.

If you are like me and you suffer with multiple chronic health conditions that all have one symptom in common – pain – then you may feel the same why.  Despite the fact it really shouldn’t matter, that pain is pain and should be treated, I can find myself getting frustrated because if it was that bit easier to identify, then I could maybe be in control if it more.

Unfortunately, pain plays a big part in my life, and as it has been such a long and major problem it has turned into chronic pain.

A bit about pain…

As the name suggests, chronic pain is pain that persists for longer than 12 weeks despite medication or treatment.  Sometimes when pain persists, the nerves still send signals to our brain even though there is no acute injury or because these nerves have become more sensitive.  In a normal situation, pain is helpful (think about when you cut your finger – it throbs and stings to let you know its injured and you need to be careful to avoid further injury), but because chronic pain can intensify for no specific reason, it is no longer useful.  This is the same as when pain results from an incurable illness, such as Endometriosis and Fibromyalgia.

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This is why it is important to manage pain when you first experience it.  If pain is left to get out of controlled, it will intensify to a level that becomes harder and harder to manage.  If the cause of the pain can be identified, it also becomes easier manage.

Pain can be different for each individual

For me, my four conditions each bring pain, and all subtly different.  My Endometriosis and Adenomyosis pain are the main culprits, and they often overlap.  The pain I experience is intense cramps, a feeling of extreme tenderness and being inflammed, and sharp pains when I sneeze or stretch in a certain way.  The pain is pretty much all day everyday, although when I’m on my period it is 100 times worse.  The pain can make me feel faint and stop me in my tracks.  My Endometriosis and Adenomyosis pain is alway from the belly button down.

The pain I experience from my Interstitial Cystitis is only in one area – my bladder.  It feels like my bladder is on fire, and sometimes radiates up to my kidneys.  This pain is not constant and is aggravated by certain foods, drinks an if I get an infection.  It lays in the centre of my pubic region.

And finally, I experience pain when my M.E./CFS is flaring, although this is predominantly in my limbs, back and head.  It feels like pressure combined with burning, and when I touch my muscles they are extremely sensitive and tender.

The pain you experience could be different to mine even though we might suffer from the same condition – and that is fine.  We all interpret pain different and we all have a different perception of pain.

Why it’s important to me to know what’s what…

As briefly mentioned above, I personally like to know which condition is causing what as it enables me to manage it better.  For example, my Endometriosis and Adenomyosis pain can be soothed with heat or a TENs machine, whereas my bladder pain requires specific neuropathic pain (pain that has resulted in damage to sensory nerves medications.  It also gives me an idea of how my disease is behaving.

So what tips have you got to manage pain from different conditions?

Well, first of all, make sure you are getting the optimum pain management.  What I mean by this is making sure that the pain relief you have been prescribed is actually working.  If you are finding that its effectiveness has reduced, comes with intolerable side effects, or is no longer working at all, it is super important to speak to your GP or pharmacist for advice.

The next important thing is to take your pain relief as soon as you start experiencing pain – don’t just wait for it to get “that little bit worse”.  And then stay topped up on it.  Most people with chronic pain will have a variety of pain relief to stop breakthrough pain (pain experienced when a form of pain relief is wearing off).  For example, you may have been advised to take paracetamol inbetween a dose of a stronger medication.  Even though paracetamol is not a strong form of pain relief, it does work well for breakthrough pain.

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Finally, make sure you are taking the right type of pain relief.  Paracetamol is good for mild and non-nerve pain, Ibuprofen and other anti-inflammatorys are good for acute injuries or illnesses associated with inflammation, and codeine-type medication is better for more moderate pain.  Other medications such as neuropathic drugs (e.g. amitriptyline) can be useful for nerve pain or when chronic pain is not managed well with other medication.

More information regarding types of pain relief can be found on the NHS website.

NOTE: I am in no way a pharmacist or GP – my knowledge comes from my Physiotherapy career.  Please seek advice from a pharmacist or GP before changing any medication. 

Other tips include;

  • keep a diary of your symptoms to see if you can identify a common pattern – this might enable you to know when it is best to take your pain relief or if it is related to a condition (e.g. cyclical pain may be related to Endometriosis)
  • know where your pain is coming from – practicing  biofeedback (a process where an individual uses techniques to gain a greater awareness of physiological functions to improve symptoms) or mindfulness may enable you to have a greater idea of where the pain is coming from
  • don’t focus on validating the pain – I am guilty of feeling like this, but pain is a REAL symptom that comes from REAL injury, illness or disease.  Don’t let anyone ever tell you it is in your head.  If you experience a healthcare professional treating you this way, then I would recommend getting a second opinion to someone who understands the nature of chronic pain better
  • the distraction method is useful – whilst waiting for pain relief to kick in, you may find reading a book or watching a film a good way to take your mind off the pain signals that are currently firing to your brain.
  • Have a read about the Pain Gate Theory.  This is a model I learnt at University and use it frequently with my patients today.  It’s a theory that looks at house certain factors can “open” and “close” a gate in the spinal cord, making pain worse or better respectively.  It can bring a good understanding of the multiple factors that may make a persons pain better or worse
  • Look at holistic or alternative methods – non-medical forms of pain relief, such as acupuncture or aromatherapy, can have beneficial effects to pain
  • Exercise – this may seem like the last thing you want to do when you’re in agony, but moving around a little bit (be it a short walk, basic chair exercises) can ease pain.  Exercise releases endorphins, a hormone that not only has a happy effect on the brain, but has a pain relieving effect too.  Movement and exercise also ensures your blood is moving and gets to the right areas to aid healing
  • ask for a referral to a pain management clinic – these are clinics (which are available on the NHS) who are incredibly specialist at advising and managing chronic pain, through offering alternative medications and treatments that GPs and consultants can’t always offer.  I have my first appointment in September and will definitely be letting my readers know how it goes

The bottom line is this:

Pain is very real and very problematic.  The best management can help make pain more bearable and and individual live a normal life.  I hope these tips have helped.

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