First Blog – My Journey with Persistent Pain

Here it is, my first blog!  Some years ago I decided to start writing blogs and set up a blogs page on my website and that’s as far as it went.  Like me you may be interested in persistent pain and hearing stories from those who experience it or have done.  I ended up specialising in pain professionally because of my own experiences and seeing there was far more to pain and helping others make changes than we were taught at university.   I have had persistent pain for around 22 years, well except for counting the severe period pain that started about 3 years before anything else as a teenager and continued for some of my adult life.  I believe my experiences and learning have helped be become the compassionate integrative therapist I now am.  The pain is nowhere near as bad as it was and it does not stop me doing what I want to anymore. 

I always said my first blog would be sharing my story so here goes.   Settle back with a cuppa, it’s a longer than intended blog.  If you don’t make it quite to the end remember to read the summary before you go.  I can’t guarantee all of you will find this interesting and useful, I hope that you do.

 

With persistent pain there is always a story, so where did it all begin?

 

There is evidence that adverse childhood events affects health in later life, this is where my story begins.  I was bullied for all of my teenage years, throughout secondary school and a little before this too.  This was psychological bullying by large numbers of people on most if not every day.  My Grandma always used to say ‘sticks and stones may break my bones but names will never hurt me’, sadly this is not the case.   I left school with no confidence, self-belief or self-esteem, and would not go out on my own. 

I didn’t appreciate how much of an affect this was likely to have had on my health and wellbeing until I reflected on it in the last few years, the more I have learnt my understanding has deepened.  I think it is likely that this is where the issues started, there is also likely a genetic component to things based on some family health issues. 

 

How did I interact with the world on leaving school?

 

Not much if I could help it, I often wanted to stay hidden away like that clam shell buried in the sand for safety yet this is not what I did as long as some of the sand came along too.  Gradually I needed less of the sand to come along with me.  For many years if people were laughing they were of course laughing at me, no matter how many times I was told by those close to me they wouldn’t be I didn’t believe them.

I had a flexed posture and looked down most of the time, this was a posture of protection and disengagement.  The evidence doesn’t generally support correlation between posture and tissue damage yet it is important for things like self-awareness and our interaction with the world.

 

The journey with pain, health and wellbeing

 

The first thing that happened in terms of health changes was developing gut issues, this was after a holiday and was around the time of either GCSE’s.  It is most likely the stress from being bullied contributed and the exams, who knows if there was something consumed on the holiday that did too.  This was eventually diagnosed as IBS, at this time it was thought to be caused by stress and although this is a factor it is not the only factor.  I feel we over medicalise things and there are too many labels within healthcare today, for example why do we still feel the need to distinguish between psychosomatic and mechanical pain.  All pain is really both seeing as all systems that make us one work together, maybe (and that is a maybe) you could argue acute injury is solely mechanical yet it has psychosocial factors involved too (I would argue it isn’t solely mechanical and believe nothing is).  Why do we label in this way and allow the stigma attached to psychological aspects of pain to still be prevalent.

When I was about 18 years old I started to have problems swimming due to shoulder instability, one of my shoulders was persistently subluxing.  I was told I had multi-directional instability in both shoulders, my non-dominant shoulder was the one that was subluxing.  I saw a lovely and very honest shoulder consultant about 11 years ago who said the surgical option was capsular shift surgery, which he advised could possibly solve the problem for a while but could be more of a problem in the future.  Another consultant may have presented this surgery differently (I had only just qualified at the time and had limited knowledge about this surgery).  It was interesting listening to a video by Jo Gibson, Shoulder Specialist Physiotherapist recently, she could have described me when she discussed how a group of instability patients have been identified by The Stanmore Group to have their shoulder pulled out of joint by pecs, deltoid and lats, which is what my pecs and anterior deltoid used to do.

I first hurt my back at work, around 20 years ago, at this point in my life I was working in a bank.  I had Chiropractic treatment for both which helped to an extent.  I later had physio, which helped a lot, and inspired me to become a physio.

 

What happened next?

 

About 5 years later I started my physiotherapy degree, 11 years down the line it is still a job I love and am passionate about.  During this my shoulder became more of a problem, I would often finish a day on placement struggling to get changed as my shoulder range had significantly reduced, often my shoulder was subluxed.  When not on placement I would drive home from university (an hours drive) and often had to lay on the floor once getting home to try and get the tone in pecs to drop and get my shoulder back in alignment.  When I treat patients with shoulder subluxations now I understand the amount of pain this can cause.  I made it through my degree and acute work as a physiotherapist, it was challenging as my shoulder really didn’t tolerate load. I kept on going and pushing through the pain and ended up with an even more sensitised nervous system and at some point with neuropathic pain, this may have been whilst studying or later my memory of that is not clear.  

About 7 years ago I took a senior role in a specialist community team, during the time I was struggling with my shoulder and arm pain, I could sometimes be found lying on the floor which I only resorted to when my shoulder was subluxed and I had neuropathic pain.  At the start of working in this team I had a car accident which resulted in a whiplash injury, dizziness/imbalance and headaches, so that added something else into the mix.  After about three years of working with this team I hurt my back at work, I had severe lower back pain and distal neural symptoms (pins and needles).  Did I stop? No, I hadn’t learnt, I kept on going and pushing through the pain, there was a bigger threat to me in going off sick and so I just told myself I would be ok.  A month or so passed by and I finally went to my GP as I wasn’t sleeping because the nerve pain and pins & needles were worse and keeping me awake.  Catch 22, lack of sleep increases perception of pain and pain inhibits quality sleep.  The medication helped to an extent and on I went until I reached a point where something snapped (not literally!), I spoke to my manager and told her I couldn’t do it anymore I needed to go off sick.  You may be wondering why I kept going, I knew that I needed to calm things down and pushing through things wasn’t helping.  The bigger threat was that I had previously had a few months off with shoulder and arm pain, when the pain was so unbearable that changing gear was very painful and I could take hardly any load in my arm and sometimes none, this unfortunately later caused issues with a colleague.  It is not something I will go into partly for professional reasons, it was in essence bullying in the workplace.  This threw me spinning back into lots of self-doubt, my confidence plummeted, I noticed some old patterns resurfacing, and I hated going to work (something that is very rare in my life as a physio).  Before my back injury things with this work situation had improved to an extent though were not fully settled so I was worried what would happen if I took time off.

Somewhere along the line I developed fatigue, not the ‘I’m tired it’s been a long week’ sort of fatigue but the sort of fatigue that is all encompassing.  I often found concentration hard and wasn’t great at remembering things.  Sometimes I got home and had to lay on the floor until my energy levels improved, that’s if I wasn’t needing to lay on the floor to settle my shoulder back into joint anyway!  This is hardly surprising with the daily stress throughout secondary school and the affect this will have had on the HPA axis amongst other things.  I was functioning in flight and freeze responses a lot of the time at school and for some time afterwards, my nervous system was on high alert.  Thankfully I don’t have this all encompassing sort of fatigue anymore.

I stripped my life back to not doing anything I loved, I knew better than this and yet still did it as could see no other way at the time, I wasn’t interacting fully with my world again.  I lost a lot of exercise tolerance and there was sensitivity to a lot of movements and activities.   I couldn’t walk down the road for 5 minutes without a significant flare in symptoms.  I used my own knowledge and skills, those of colleagues, and lots of love and support from family to gradually make changes.  I gradually started to do things like this again, there were times when I couldn’t do it all and I noticed it annoyed me until I came to a place where I realised if the house wasn’t tidy it didn’t matter.  I chose what to focus on instead of being annoyed at what I couldn’t do I focused on being grateful for what I could do and I learnt to ask for help.  When things like doing the housework felt like climbing a mountain I did what any good mountaineer does and I made a start, I learnt to navigate more effectively with experience, including resting along the way.

Having built things up and calmed things down a lot I fell down the stairs and fractured my wrist and had surgery more on this in the what happens when your dominant hand out is out of action later.   The headaches turned into migraines during the recovery from the wrist injury and surgery, about 7 months after, hardly surprising with everything that happened during this time.  These were diagnosed as chronic migraines by a Neurologist who said the only way forward was medication.  On discussion he agreed to let me try and change things without medication first, with a look of that’s unlikely to happen.  Two months later they were downgraded from chronic to episodic, more labels, and now they are mainly headaches not migraines although I do get a few. 

I understand what it is to not be listened to by medical professionals to be made to believe pain is in your head, and to feel like it’s your fault.  Professionally and personally I know that this is not the case but that didn’t always help, and in the early stages of the journey I wasn’t a physiotherapist and didn’t have this knowledge.

 

Are decisions easy?

 

Some are and some aren’t! I didn’t want to go back to work in the NHS team following my back injury, this created anxiety or you could say I was choosing to feel anxious.  Lots of things went through my head: what will my colleagues behaviour be like, how will I cope with the load demands, and other thoughts.  I decided to resign and build my private work up and my strength and fitness at the same time.  This decision felt right, all my family were behind me which helped, even if they were a little worried if things would work out.  It wasn’t easy, yet I had more control and was able to adapt things without any workplace issues to contend with.  I could finally calm things down and modulate the load demands. I returned to what I loved doing outside of work, gradually the back and shoulder pain changed and my shoulder no longer subluxed, I got fitter, and then I fractured my wrist!

 

What happens when you can’t use your dominant hand?

 

In my experience dependence and frustration initially, learning to do things another way, adapting, and asking for help to name some significant things.  I had just got to the stage of maintaining my shoulder range with some load and ready to start loading the arm more including overhead prior to this.  The fracture was both radius and ulna with the radius fracture being a little displaced, it resulted in radial plate and carpal tunnel decompression a week later and later down the line working to reverse CRPS!  I also had coccyx pain for some time after this possibly a year or more.   I was having issues with the other shoulder and neck, the side I fractured my wrist on, and before the fracture I was going to get a colleague to help with this.  As you can imagine by the time I got treatment for this the wrist injury and disuse of my arm had impacted it too. 

The time between injury and surgery was rather stressful.  The A&E staff were fantastic and caring, although the overnight stay on the ward was not a great experience and my pain was poorly controlled by medication.  I had been told it was definite surgery, however the next morning the Consultant said there was a 30% chance of this and was sent home for review in fracture clinic 2 days later.  My knowledge had me questioning, I reached out to an Orthopaedic Consultant at another hospital who was concerned they were doing nothing, he advised the minimum needed was manipulation under anaesthetic.  The care felt disjointed and compassion was somewhat lacking at this point.  When I went for my review two days later the notes were still on the ward, we had to wait nearly two hours whilst they were located, following another x-ray I was told the fracture had further displaced and needed surgery.  I ended up with surgery at another hospital, this was my choice.  This team arranged surgery the day after they saw me due to the worsening neural symptoms, this team’s communication was effective and reassuring, I had complete trust in them which can never be underestimated.  Whilst awaiting surgery I was trying to notify patients and find someone to cover for me whilst off and do a handover of patients.  Being self-employed I had no sick pay, so applied for Employment Support Allowance, this later turned out to be very stressful and gave me an insight into what patients have to deal with.  Lots of factors were ramping up the threat of this injury to me, which I was counteracting to an extent with yoga and meditation.

Two days post op my thumb swelled significantly and was so sensitive I couldn’t touch it, it was the sort of sickening pain where you don’t know where to put yourself (if you have ever experienced this you will know what I mean and may even have a visceral reaction to this right now!).  I sought the help of a private physiotherapist colleague at this point who was able to help calm things down by targeting the neuro-immune system.

Long story short, myself and the Consultant thought it likely the plate was irritating, this was about 6 months post op, but as there was no way of knowing we agreed I would sit it out longer.  Around 14 months after injury the plate was taken out, I no longer had any signs of CRPS by this point, and things were evidently different within a few days of surgery despite the acute post op pain.  With patience and persistence, I have got back to a fairly high functional level with my hand even though I still have pain.

I developed a depth of understanding with patients that have their arm function taken from them overnight, although every experience is individual.  Overnight I went from being independent and working to being dependent and not working.  Everything was hard and things were frustrating as I couldn’t use my dominant hand.  I learnt to write left handed, and even filled in the Employment Support Allowance form left handed as I was determined to not keep asking for help as what I could do myself was pretty limited.  To feel like you have no purpose and be completely reliant on others for many things once taken for granted is a place of deep learning or it was for me.

I practiced yoga every day and used visualisations for movements I couldn’t do, went for walks, and I read.  I integrated my Neuro Linguistic Programming (NLP) and coaching knowledge and skills and became aware of what I was saying to myself.  Also, when I noticed my accuracy of recognition on my right side had shot down to 60% I started using NOI’s left/right recognition app, I tried mirror therapy prior to this but it was irritating at this stage but was useful later.  This was around the time of realising I was developing CRPS.

 

What changed?

 

Did the pain fully go away?   The pain has significantly changed, it used to be a at the forefront, it was in the driving seat.  It is no longer the pilot and it’s not even co-pilot it’s a passenger, it is quieter and I do not resent it or the experiences that have contributed to the persistent pain state.  Sometimes it starts to shout and now I do listen and can quieten it again.  One day it may fully go away or it may not, either way I plan on keeping doing everything I choose to.

How did things change?

Things are dynamic and always changing so in some ways not doing anything was needed to make changes.  However, to make lasting specific changes it took: the unconditional love and support of close family and friends; daily practice of gratitude, self-compassion, patience and perseverance; daily meditation and yoga; returning to exercise (the gym, yoga, swimming, walking); and doing the things I loved including photography, walking and writing.  I didn’t used to be a gym kind of person, partly because I never felt confident there and they tend to be quite noisy which is something I can be sensitive to, I now enjoy it (another example of how things can change in life).

When I went back to swimming and joined the gym I could swim 4 lengths and that was enough, I could do a up to 5 minutes on the cross trainer and bike and not a lot else.  I gradually built things up and went to yoga and practiced at home.  When I rocked up for my first yoga class, in rather a lot of pain including neural leg/foot pain, it turned out to be the teacher whose class I went to for a little while 10 years prior to this.  She had also known my Grandma and tried to help when she was ill with cancer.  The classes were immensely helpful to me and played a big part in my healing, I have practiced yoga on and off the mat daily ever since.  I now integrate yoga into my physio practice from my own practice and short courses done with two physiotherapists who are also yoga teachers.

I was told at one point by a colleague that I was not stable enough to use the cross trainer.  This is when I was getting more neural symptoms during and after using it.  I chose to ignore this advice, mainly because by this point I understood pain differently and in greater depth and knew that it was sensitivity not stability that was the issue.  I kept on using the cross trainer to the point of the pain alarm going off, being aware of my body tension, breathing and thoughts, and kept gently nudging the barrier.  I also knew if I stopped using it I couldn’t replace the cross trainer with something like the static bike as I didn’t particularly enjoy it and felt the rhythmical movement on the cross trainer was helpful, now using it is not a problem.  We have to be careful not to keep taking things away from people, especially when they are often already restricting things themselves.  A patient once said to me they really wanted to walk one of their dogs and said bet you will tell me not to, I said you absolutely can.  Instead of saying no I advised them to take the dog they most trusted for a short walk, maybe a few minutes down the road and back and then build gradually from there, the smile and reaction have stayed with me.

Along my journey I realised fluidity and ease of movement had put themselves in a locked suitcase somewhere and I didn’t know how to access the lock.  Through breath and body awareness practices, yoga, pilates and swimming I found this key.  I now swim a mile a few times a week and get to the gym a few times as well when time allows.  Swimming is something for me that is calming, it’s a great mindful activity and it reminds me of my Grandma who was a swimming teacher.  Swimming is something I grew up with and all of my close family love it and are great swimmers.  I often smile as I can hear my Grandma saying ‘hands!’ when I’m swimming backstroke.  A fitness professional said how amazing my backstroke was last year and not many can swim it that way, this was lovely to hear especially as I was near the end of my swim at the time and fatigue was setting in and because it meant the fluidity I felt was also observable.

I trained as a NLP practitioner about 6 years ago, this was an amazing personal journey and one that became a new way of life.  I then trained as a life coach which built on the NLP training, both have helped me change my life and those of others.  We need knowledge and skills from things like coaching as physiotherapists.

The good news is the shoulder that used to sublux is about 90% better, it didn’t get better until I left the NHS likely because a lot of the work was heavy and my body was not coping with load which it now does.  I still have a sensitive gut, get some sciatic pain and back pain, pain in carpals and wrist from the fracture and have yet to fully settle my shoulder and neck on that same side although I am confident that I will.  I had physiotherapy for the wrist fracture and surgery and integrated my own knowledge and skills to get to the level things are now. 

After the wrist fracture a physiotherapist I had connected with on social medial reached out to me to offer support, thank you Shelly.  I have never met Shelly even though in some ways I feel I have.  This gesture of support was important, it was an extension of compassion, and understanding as Shelly knew what it was like to have a significant injury and be a physiotherapist.  Connections and social support are an important part of healing and our ongoing wellbeing.

Previously being a physiotherapist has defined me, or so I felt and I didn’t know who I was if I wasn’t a physiotherapist. There have been two injuries, back and wrist, where I have wondered if I would have to change career.  This was especially the case with the back injury, I was catastrophizing a bit at this point in time! It worried me at the time, yet when I wondered again about my career some time after the wrist fracture and the first surgery I was no longer worried, I had realised being a physio did not define me.

At the end of last year I came to a realisation that my body hadn’t let me down and I knew I trusted it again.  I could see it had never let me down it was simply my perception at the time and for some time to follow that it had.  I am fitter now than I was 10 years ago, this quote springs to mind ‘it’s not the years in your life that count it’s the life in your years.’

Do I hold regret about how I have chosen to handle things, not in the slightest as I know I made what I perceived to be the best decisions at the time.  Do I wish it hadn’t happened to me? Yes, on one hand as there has been rather a lot of pain yet on the other I wouldn’t be where I am or the person I am.  I now see things differently, I see many more choices and I don’t see things as mistakes or blame myself, the best intention is always even if it does not result in what I envisaged.  Am I bitter towards those who bullied me? No and I have forgiven them and myself (as you may have gathered I was beating myself up for a while).

The person that was once a clam shell wanting to stay buried in the sand for safety is now a dolphin gliding and swimming, playing and connecting.  To reach the confident (mostly) and resilient person I am now it has taken around 20 years!  I do sometimes still beat myself up yet recognise it quickly and chose a better and more helpful way to be!

 

In summary

 

I hope you take something from reading this, whatever you take will be up to you, and well done if you made it this far!  Pain is multifactorial and needs a biopsychosocial approach, it seems the bio gets thrown out by some or others keep it as the focus and others have found an in-between and tailor the biopsychosocial to the individual.  The old structuralist view is outdated and a very small part of the picture (remember I didn’t stop using the cross trainer and got better).  If I knew 22 years ago what I now know I may not have pain now who knows, equally I would not be who I am today so for that I am grateful.  The reality is we are always building and rebuilding or extending, yet the foundations are always there.  The foundations are our core or essence, or what it is that makes you you, it’s a powerful thing to understand.  When pain persists it is important to integrate making changes into life, keep hope yet without doing things just to change the pain as that keeps pain as the focus, and not put life on hold until the pain changes (change usually takes some time and restricting things can help keep the pain more prevalent).  Ultimately please remember things can change with many things, some key things are time, patience, perseverance, compassion, connection and love (both love for yourself, from others and doing the things you love too).

Watch out for the next blog coming soon, it will be shorter!  I will leave you with a life philosophy which I wrote when invited to write a short statement on the filter we push things through on a pain coach course at the end of last year.  It evolved very quickly, which likely means it was unconscious and I was in flow when I wrote it.  It shows me how much has changed, I now choose love not fear.  This is stuck on my fridge door:

 

‘To create and experience life through connection and love, to learn and grow with presence.’