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Pain Management

“If you injure your toe, the nerve endings in your foot fire off electrical impulses to your brain: Something bad happened down here. Your brain works with specialized nerve cells in your cord to figure out a response. Was that a burn? Better get that leg out of the fire pit. Did we just break our ankle? Let’s turn the pain dial up and make it ache for a couple weeks so we’ll stay off it. Once the injury heals, the brain turns the dial down and stops sending these amplified pain messages to your body. The hurt, blissfully, dissipates. But with chronic pain, the neural circuits stay amplified—your brain has actually rewired itself—keeping the pain dialed up to 11, even if the damage has been repaired.”

Great article on pain management – click here to read. This makes so much sense to me having taken control of my pain management and gone through a multidisciplinary approach. What is in this article is what gave me the strength to get up everyday, to go out to work, and follow my dreams. It’s also why I have been described by many in the medical profession involved in my care as a successful pain patient, along with being able to reduce meds and finally get my brain back from the medication induced brain fog. All I would say to anyone in pain reading this is to go into any pain management programme with an open mind, follow what is being taught, practice, practice and more practice, and you too can start living again. It’s not easy, there’ll be tears and tantrums, bad days and good, however you’ll wake one morning, read an article just like this, and think to yourself wow this actually works!

I’m not pain free, probably never will be, but I have accepted it into my life, and have learned to live with it and when you can get to that point that’s when life gets better for chronic pain patients. For the most I control the pain it doesn’t control me, yes it makes life extremely difficult but humans were made to overcome adversity and adapt to ever changing situations. It’s learning to adapt that gives you your life back albeit a different one to that you once knew.

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Dread and Acceptance

This year has been particularly difficult in the run up to the 10th anniversary of my accident, going into double figures of living with CRPS really ate away at me, I can’t pinpoint why, maybe one day it will come to me. However the date came and went without even a thought, it helped with having a lot of distraction that day. Well I was busy concocting stories and trying to keep my son’s fantastic birthday surprise a secret so that helped. I didn’t have time to dwell on those 10 years, ten years, a decade – it’s a long time no matter how you say it or write it down.

I only really thought about hitting the 10 year anniversary today when I was back in familiar surroundings that I hadn’t visited in a good three years. Three years, time so flies! I was such a regular for 6 years the nurse even remembered me and we had a lovely chat and catch up.

Today was my first pain clinic appointment since I was discharged 3 years ago with the words “there’s nothing more we can do for you, you are a successful pain patient!”

At the time I thought it was a lame old excuse to clear me off the lists, after all my pain consultant had just retired, he hadn’t yet been replaced, and I was being seen by the nurse led team. Throw a few nice words at a patient and hope they don’t argue back. I genuinely felt fobbed off. Who wouldn’t when living in constant pain with no real treatment plan except to keep taking the medication with care to be maintained by a GP who had no clue what CRPS is.

I was dreading today.

  • I was dreading having to tell my whole 10 year medical history of CRPS and Fibromyalgia to yet another complete stranger.
  • Dreading having to explain all the treatments, physio, procedures.
  • Dreading being told try this new drug, or that new procedure, being told go back to physio just to go round the same circle only to find I’m doing everything already.
  • With that said though I was dreading being told there was nothing more that could be done, being left in pain for the next ten, twenty, thirty years, or however long I have left to live with no hope of a cure, no hope of being able to live my life the way I used to.

Even though I was dreading this last response, I also knew deep inside that this was the likely scenario. Also with that element of dread I also had an element of acceptance. So although my gut was doing somersaults my mind was calm. A hard feeling to describe, to be filled with dread and acceptance at the same time.

I am also a person who finds it difficult in the presence of new people to open up about the effects my disability has on my life and what CRPS and fibromyalgia means to me and my life.

We sat for a while waiting to go in to see the consultant, several times I wondered why I was there, what if there was nothing that could be done, what if the consultant was annoyed at me wasting his time when NHS lists are so long.

I’m glad to say I was pleasantly surprised and had an instant rapport with the consultant.

Out of my four dreads only one came true and it was one that I already had an element of acceptance with.

I did not have to go through ten years of history, he’d already read my file, and was able to succinctly tell me my history, which gave me an instant faith and trust in the man. This was the first time in all my appointments with various departments except for my very special physiotherapist that I felt this trust instantly.

I didn’t have to tell him all my treatments I’ve tried or continue to try because he told me.

We did discuss various treatment options and their success or failure, however this was more out of conversational interest rather than let’s try this or that and see if it helps. This consultant was totally open and honest with me and told me that the more research is done, the more it is being realised that there isn’t any magic cure all drug, in fact a lot of the tried and tested (or should I say experimented in the hope they work) drugs do not actually work, or only have a limited effect. I know this to be true after taking Lyrica (Pregablin) for nine years thinking it was giving me some relief. Yet when I came off it a couple of months ago I actually found I had been pumping myself with this awful drug for absolutely no reason whatsoever because my pain is the same today as it was in April when I was on full dose. Being armed with this valuable knowledge and first hand experience I could wholeheartedly agree with him. He said he could replace it with another drug and I may get an initial good reaction but in the long term the same would happen. We had a general discussion around opiates and that these were unsuitable for long term pain and again I have to agree with him.

By this point, talking to this obviously well educated and knowledgeable man within his field, the appointment was like a breath of fresh air. I knew where the conversation was leading, and that dread/acceptance feeling I had prior to the appointment was totally becoming a feeling of true acceptance.

We then reached my fourth dread, that there is nothing out there in the medical field that would be the go to standard treatment for CRPS and fibromyalgia, everything is just trial and error depending on the person and circumstances. Most never truly find the right combination to bring their lives back to some sort of similar pre CRPS and fibromyalgia state. That in my case, by the way I manage my pain, there was nothing more the pain team could offer.

One appointment and he discharged me! This time round I was ready to accept that I have been discharged for the right reasons not just to reduce waiting lists.

I felt I’d had the opportunity to discuss my concerns and fears. Yes my fears are still there however I can accept them as being part and parcel of my complicated health issues. I felt able to advocate for my care and that I had choices with regards to medication. I now know in my heart and mind, after discussions around the only long-term medication I am currently on and its affect on sleep, that medication is not for me because I control my pain using other methods such as desensitization, mindfulness, distraction. I now have the information I need to make an informed decision to make that final leap and become medication free, except for the occasional painkiller for days when the pain is too unbearable and all other pain management techniques that I use fail to work.

I am proud of myself to hear a consultant with years of experience in the pain field tell me I am a successful pain patient and an expert patient in managing the pain of CRPS and fibromyalgia. That he felt it was an honour and pleasure to meet me. That if he could capture the essence of the way I manage my pain there would be no reason for drugs, and the essence would make a fortune!

I have now accepted that I don’t need to be under the care of the pain team because I am successful in managing my pain, and I now have the confidence to continue to self monitor, adjust, and ask for help from the medical profession when needed.

I came out of that appointment lighter than I went in. The dread turned into acceptance. A slight tinge of sadness overridden by the happiness I have for my achievements the last ten years.

Please note I am not a medical professional just a patient with complex medical needs, and anything I have written here is my own experience and my own pint of view of what occurred at my appointment. This in no way constitutes advice, or belittles what treatment you or others are on as what works for one may not work for another, you have to do what is right for you in discussion with your healthcare provider. I just wanted to share my experience.

BBC Broadcast on CRPS 

 

 

Click this link to listen to the broadcast – BBC – Inside Health
Listen from 14:33

Great to see the BBC raising awareness of the rare condition I have. I am totally shocked at the figure stated for those who heal in the first 6 to 12 months, only because that leaves me in the 15 percent that suffer lifelong with this condition. I often wonder if a quicker diagnosis and specialist physiotherapy would have put me in the 85 percent who heal completely in the first year. We will never know.   Continue reading

Sobbing and realising why – grief for the life I once had

I wanted to share this interesting blog post http://www.crps247.com/grief–identity.html which I found when researching grief and CRPS after feeling extremely overwhelmed about the loss of a life once lived before disability.  

This evening I sat sobbing my heart out into the dogs fur over how I loved jumping in the car and heading to the beach at Brown’s Bay, paddling in the water, and throwing the ball for the dog.  Remembering the day I was in the water well over my backside down at Port Road beach trying to recover the dog’s ball because she wouldn’t!  The laughs and fun times I had with my pooch when I could still live my life like most other people; a life where I could go to work and still have energy to take the dog out even after twelve hours stood on my feet!
Most of the time I can manage the feelings that come from thinking of a life that I should be having, however every once in a while grief takes over and I mourn for the loss of the life I had before CRPS struck.  Tonight was one of those times. 

There are five stages of grief (denial, anger, bargaining, depression and acceptance) and these stages apply to the death of a loved one, the loss of a relationship, and in my case the loss of the life I once had, and the loss of the life I perceived I would have.  A loss caused by an unfortunate accident that should have healed with no problems.  Who would have guessed a dislocation and fracture would lead to a life with unending pain caused by Complex Regional Pain Syndrome.  

I mainly live in the stage of acceptance, however like most other people that grieve there are times of the year when the other stages of grief come into play such as when I am unable to do something because of my disability then the anger stage comes out until I start resolving the issue in an alternate way then I am in the bargaining stage of “what if I try it this way”.  This doesn’t always work and I end up back at the anger stage or I find peace and go straight to the acceptance stage. Then there are the times of the year that bring about the depression stage.  One particular time of the year for me is September – this is the month in which the anniversary of my accident falls.  It was inevitable that I would eventually end up sobbing at some point during this month and tonight was that night, exactly a week away from the eighth anniversary of the accident that changed my life forever.

It’s okay to cry though.  It is an outlet for all the emotions that build up when you grieve.  It’s a natural process that will ease as time passes, and a process that will also creep up on you unexpectedly causing you to cry into the dog’s fur, like what happened to me this evening.  The point to remember though is that it is just another stage of the perpetual cycle of grief and it will pass.  Tomorrow I may be in denial, or I could end up being angry, or bargaining again, however I do know that I will settle back into the acceptance stage like I do every year and move on with my life, to strive to achieve great things even if they look very minor to other people. 

I accept that it is perfectly normal, and perfectly fine, to pass through these stages and it is perfectly okay to allow them to be a part of my life. 

Reflection on a whole year of blogging

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It has now been a whole year since I began blogging.  In fact just over a year. Where has that year gone?  Time certainly flies as you get older! Continue reading

Do not disturb I am floating today – I wish!

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Have you ever tried flotation therapy?  I did for the first time about five or six weeks ago.  I was very apprehensive about going, I am not good at trying things new especially when I have little knowledge of what to expect. Continue reading