Research around pain….

In the world of the internet it can be dangerous reading around and trying to research Chronic Pain, everywhere you look there is varying information surrounding how it should or shouldn’t be treated, whether opioids are an effective treatment and the do’s and don’ts. Advertised on the TV through those twilight waking hours that we all have but wish we were able to be asleep or as pop ups on the internet devices you are using promising wonder pills, gels, cures and everything else in between. This is incredibly difficult, complicated and confusing when the primary aim of the Pain Management Clinics that we attend are to help us manage our own pain as best we can. They acknowledge that the pain is not going to go away and in fact in some cases will worsen and that surgery isn’t an option at the current time so what they want to do is to educate you to deal with your own pain. The primary goal I guess is to control your own pain 70% of the time and to have the tools available and action plans in place to deal with the flare ups for 20% of the time. The mathematicians amongst you will notice that only adds up to 90% the other 10% is when nothing you can do helps and you spend all day in bed, unshowered and unable to move. If you get stuck in this 10% it can quickly become the norm and it soon becomes incredibly difficult to break out. It is not a prison as such and having never been any direct comparison would be churlish of me but in some respects a prison is the best word to describe it!

One thing I’ve heard many times over the years now is “I don’t know how you live like it/with it/cope with the pain” The reality is over the years I seem to be able to tolerate pain more, so when you stub your toe or burn yourself it isn’t as painful as it should be and I have found that I have cut myself and not known about it until I notice the blood, at which point I then have to try and locate the injury. Reading around pain as I do I stumbled across some research conducted by the university of Manchester it was only a small study group and an excerpt from a write up on the Pain News Network 23rd October. They asked the question Does chronic pain change brain chemistry and make pain more tolerable?

The answer is yes, according to a small study at the University of Manchester. Researchers there used Positron Emission Tomography imaging (PET scans) to measure the spread of opioid receptors in the brains of 17 arthritis sufferers and nine healthy control subjects

When they applied heat to the skin of study participants to induce pain, researchers found that the more opioid receptors they had, the higher their ability was to withstand pain. The number of opioid receptors was highest in arthritis sufferers, suggesting their brain chemistry had changed in response to chronic pain.

“As far as we are aware, this is the first time that these changes have been associated with increased resilience to pain and shown to be adaptive,” said Dr. Christopher Brown. “Although the mechanisms of these adaptive changes are unknown, if we can understand how we can enhance them, we may find ways of naturally increasing resilience to pain without the side effects associated with many pain killing drugs.”

Once again I live in hope that this small study may lead to breakthroughs in the future. I read around the subject not to put myself through the mill but to see if there are any studies that I can volunteer for. Anything that may help others in the future has to be worth trying as I wouldn’t wish this pain on anyone! Importantly I do not get carried away when I read pieces like this and what it could mean – truth is in the 13 years I’ve suffered chronic pain I’ve tried  new things, techniques, lazer treatments, injections and all to no avail.

One of the better pieces I have read was about mourning the loss of the life I once had. I am guilty of not completing the mourning process, but it is so difficult for me because it seems that each week I find something that the old me used to be able to do or took for granted but that I no longer can do. I feel as if I am in a perpetual mourning process which is why you will see me refer to old Seachy and new Seachy on here. It isn’t that I haven’t let go, just that there are always new things to let go of. The piece I am referring to was written by pain psychologist and it read along the lines of;

Being diagnosed with a chronic condition is a loss.  In fact, it is comprised of many losses. It may be a loss of the person we used to be. It may mean a loss of independence. It may mean a loss of dreams and goals. It may mean a loss of some of the people in our lives who we thought were close. It is the loss of the life we once had.

For many of us with chronic conditions, living with pain or illness means daily medications, injections, surgery, physical therapy, and weekly or monthly doctor appointments.  Not to mention living with constant pain. These are things we could never have dreamed of before our diagnosis. We are forced into a life-long journey that is strange, painful and full of new challenges.

We now need to try to figure out how to help our family and friends understand what we are going through, while we ourselves try to decipher what it means for our future.  We need to figure out how to balance work, family, kids, taking care of a home, and hobbies – all now with pain, fatigue and frustration. Often times, depression and anxiety step in when we realise that the life we once had is now gone and that our future is filled with the unknown.  The mourning process begins. It is important at this point to allow ourselves to experience the mourning process.  There is no one-size-fits-all when it comes to grief and mourning.  Cry, scream, and yell if you have to.  Talk to a friend or therapist if it would help.  Start blogging.  Write a letter to your pain and rip it up or burn it.  It doesn’t matter what you do, just do something!  And then, at some point, it is important to try and live a new degree or level of normal. Finding a new normal means weaving our way, however slowly, through the new challenges we face daily.  Do some research and find a great doctor who you trust.  Research the medications you are being prescribed.  Find what works for you, whether it’s hot/cold packs, a heating pad, medications, rest, a support group, yoga, acupuncture, meditation, or light exercise, tens machines, try it all. 

Plan for the future as best you can:  Set new goals and make a plan to reach them.  Do what you can each day.  Talk with your family and friends about what you need from them and work on being comfortable accepting help.Having a chronic condition, however painful, uncomfortable, horrible, scary and unfair, doesn’t mean you can’t be happy again.  But in order to be happy it is important to mourn the loss of who you were and slowly put the pieces of your puzzle back together

As dangerous as reading around an illness on the internet can be, there can also be some that really strike a chord, so I guess with anything in life you have to wade through your fair amount of cr@p to find somethings to write about! With this in mind it is important to remember, YOU are not your illness, YOU are not your past, YOU ARE YOU, and the possibilities are endless!

9 thoughts on “Research around pain….

  1. That’s lovely Jezza and really encapsulates what we are figthing against the sea analogy is an excellent one as it can be calm one minute, then like hell and then calm, and you do constantly grieve. I hope you find time to read my latest post it is all about the pre and post accident Seachy and my mourning process! Best of British to you mate and keep swimming above sea level :-)mx

    Liked by 1 person

  2. I think the grieving process just goes on and on. The person we mourn for is still there in varying degrees. Just as we crest a wave of grief a new one rises up to meet us again. The old me appears in some way and I grasp hold in a subconscious way only to slip through my fingers again.
    Some days the pain seems to evaporate for a moment and I hope against hope once more. Then I move and the pain rushes back in like the tide. It seeps into me like the night creeps into a room. Slowly it worms it,s way in to my body, taking over my life and shutting the door firmly.
    I try to turn away from the grief and hold onto what is good in my life. My wife, my son, my family and friends. It sometimes seems like I am pushing everybody away. I am so scared sometimes that it Will be too much to ask of them all. I know it puts a massive strain on those around me. It sometimes feels like I will end up alone and the darkness will win. Then my wife rises up like a Angel and takes my hand . She leads me back to my safe place. She then kicks me up the backside in a proverbial way and off we go again.
    Sorry that needed to come out. I will try again later to say something constructive…

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  3. My personal experience has been somewhat different. 30 years ago I could tolerate the pain easily, never letting it stop me from doing whatever struck my fancy at the time. Now, that same pain has the power to stop me in my tracks, scream “I will NOT be ignored!”, and completely incapacitate me. There is no ignoring it now. At the age of 60 my ability to work through the pain is almost nonexistent. Meds allow me to do the minimum I should be doing, pain takes away my sleep even with meds, oftentimes makes me cranky as hell, which is contrary to my nature, as those who know me will attest. I avoid interacting with people because it sucks the life out of me instead of feeding any kind of vitality I may have once had. It just plain sucks and renders me powerless to control life. And that is just plain scary!

    Liked by 1 person

    1. Oh I’m at that same point too, that’s why I said I feel like I’m constantly mourning. This last year has been really tough with my body just giving up and crashing and saying no more. It has been a real battle trying all sorts of things medications and different things to even get up each day. I have been forced to retire through ill health and I haven’t even turned 40! That has been the biggest loss and mourning this year. I started blogging as an outlet to my pain especially on the days I have been forced to miss out or go on my wheelchair/scooter so have been on the outskirts of playing usually as cameraman. Previously like you I had fought through anything and done whatever I wanted within reason but that was a decade ago, now my pain is controlling me as opposed to the other way around. I have been fortunate enough this year to have met an excellent support group with wonderful members who have quickly become friends and I hope with their help I can get back to controlling my pain some days.
      I find the reading and sharing of such pieces therapeutic as I know some from my support group will benefit as we’re all at different stages of our pain lives and how our journeys are. Really pleased this helped you Carole and I’ll look to share this to our support group FB page!

      Liked by 2 people

  4. I really enjoyed reading this blog particularly this one because it reminds me that I can’t just sit and feel sorry about my chronic pain. I would encourage my fellow sufferers to read it too as it is very true in what it says about mourning for the person I was and trying to accept that I have to accept my life as it is and not what I thought it would be. I always try to look on the bright side when I can and think that does help Ina small way.


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