Chronic pain and limbo

A CPS post.

It’s been two and a half years of living with chronic pain. There have been times I have had a handle on it and times it has got the better of me. But one thing is for sure, its going nowhere.

In that time I have learned that management is the key to surviving high levels of nerve pain. There has been little improvement in the pain levels. If anything it has evolved. Spreading to different areas of my body as new symptoms appear to test me.

I chased up a neurologist appointment this week and it seems my case was forgot about after my assessment in march. That’s 8 month’s wasted that I could have had my follow up appointment to discuss multiple sclerosis as a diagnosis. 8 month’s that I could have been getting the right help. My phone call has got the ball rolling and I’m back in the system. It’s a frustrating place of limbo to say the least.

I have been proactive this year in dealing with past trauma in the hope that lower stress levels get my pain levels down. It’s definitely been beneficial if not painful at times.

New symptoms concern me but I have no where to discuss them. With month’s between appointments I am left to deal with them the best I can. I have also recently been diagnosed with type 2 diabetes. Just another problem to understand and deal with.

Meditation is my first point of management. Pregabalin, baclofen and amatriptalyne are the meds I have settled on. They don’t take the pain away but they allow me to function and deal with every day life. Which is anything but normal with triplet toddlers.

I feel like I’m up against it, sometimes on a daily basis. With central pain syndrome it’s all about living along side the monster and not letting it take the wheel. Not always easy.

I apologise if this seems like a bit of a whinge. I have ups and downs on this journey and positivity comes and goes. Sometimes it’s just tough going and I’m tired of hurting.

An excerpt from my new book

Over the last year I have been working on a new book. In it I share my experience with central pain syndrome, from when it began to a diagnosis.

The purpose of this book is to raise awareness and give a sufferers perspective of a rare neurological disorder. It explains the connection between pain and stress and also offers a solution to dealing with the pressures involved with living with a chronic pain condition.

The following is taken from my new book, currently titled ‘On Fire – An early journey with CPS’. (Available early 2021)

‘It also felt like I had finally grown to manage my symptoms with less of a sense of negativity. It is easy to fall into a trap of resentment, which I had done over and over again.

The monster was a part of me I could not evict, he was well and truly here to stay, and whatever else may be happening with me health wise, I saw it as my job to live alongside him without holding anger towards him.

I had also stopped feeling so victimised in my situation. Having CPS is bizarre. It takes everything from you, from friends to your livelihood. It is like living with a vacuum that sucks everything worthwhile into it and leaves the sufferer with a draining sense of loss and fear.

It almost felt as if I had to start my life again. From scratch, and in a way I did. I had to learn to accept my limitations, which I eventually did, and a sense of peace came from giving up fighting it.’

My first publication ‘From triples to triplets’ is available now on Amazon.

Resentment & pain

Living with a chronic pain condition drags a hoard of negative emotions along with it. Fear and frustration go hand in hand with cps (central pain syndrome).

Before I developed this bizzare and rare nerve disorder my focus was on dealing with work and raising my family. Being a dad to triplets brought enough pressure and stress. Weight that I had adjusted to since the triplets came home. I felt as though I was managing well, considering I was a first time parent.

Then came the accident just in time for the triplets first birthday. I wasn’t even remotely prepared for such a huge physical upheaval. And I soon discovered that there was more to the pain than just the pain.

I immediately fell into frustration as I struggled to do my job. Being a welder and with much of the pain centred in my head and face, and having to work a physical job with random back spasms I started getting overwhelmed with fear that I could no longer do my duties at work. Then came the fear of how I would support my family if I couldn’t work. I ended up on the vicious cycle of stress flaring up the pain, and the pain causing me stress.

Having an invisible illness is tough going

I fought through it for a couple of months but it became too much of an aggravating trigger for my nerve pain. Fairly soon I was off work and unable to earn. Not a great position for a man with a young family to support.

I quickly sank into resentment. I resented the pain, I got lost in self pity in between the trips to A&E and neurology appointments. With no clear diagnosis of a cause of the cps I became overwhelmed with negativity. Life became a struggle, one I had to face. If you have followed my blog you will know I haven’t always posted from a place of positivity this last year.

Lately though, I finally feel I’ve made some progress in managing my pain. And it lies in not resenting it. That’s it! There is nothing more I need to do than observe the pain without reacting to it. After all it is stress that dials the pain levels. So the solution to flare ups is to remain free from resentment and fear. I do this by way of non contemplative meditation. The answer was with me all along. I had to stop struggling with a problem beyond my control.

I figured early on that there was no way of avoiding my condition. That I was going to have to live with it somehow without it overwhelming me to the point of insanity. And I’ve come pretty close over this last year to losing a grip on my mental wellbeing.

There is always a simple solution to be found, and for the secondary pain such as the emotional battering of constant nerve pain all I need to do is stay mentally well. Conscious awareness helps me achieve a state of mental neutrality. It needs to be experienced to be understood, and I know a few of you have already began using this meditation and are having life changing results from it.

Life is hard enough without chronic pain to contend with. So whatever you find useful grab on to it and know you’re not alone in your suffering.

Fighting fatigue

I often wonder how well I would deal with cps if I didn’t also have triplets to contend with. Not that I would wish for that situation, in fact the triplets are probably a blessing in that I’m forced to find balance and solutions to managing chronic pain. I need to constantly look to improve the way I approach my illness.

Although I’ve slipped with the diet since being away on holiday this last week, I had definitely felt an improvement from a simple change in diet. There seems to be an ongoing issue though when it comes to fatigue. No matter what I try to do to beat it I find myself continually exhausted.

I wake up tired and stay that way all day. If I sit down for more than 5 minutes i drop off. Until I get rudely awoken by a toddler or my wife who is tired herself from my complaining.

For the better part of the last two years I have been sleeping every afternoon when the triplets took their afternoon nap. But now they have dropped it, I am no longer able to sneak off to bed for a few hours.

I’ve tried vitamins, light exercise and early nights but I can’t shake the weight of the fatigue. It’s like wearing led boots all day and my brain can barely function at times. I’m the guy that makes old man noises when I move. The pain is constant and difficult to hide at times. My body feels too old.

CPS is a vicious illness that I am in a constant battle with to manage. As for the fatigue, if you have any tips or suggestions please leave a comment. I’d love to hear your experience.

Stress & chronic pain management

At my first pain clinic appointment I was told that they couldn’t fix my pain. I was a little surprised by this as I was expecting physical treatments like steroid injections or new medications. Anything that would give me a quick fix by people who would understand what I was going through.

Instead I soon realised that what was on offer was pain management. Ways to alleviate stress, and therefore be in a better mental condition to live with the pain I was experiencing.

In the pain management group I signed up for the talk was more about diet and mindfulness, not a steroid injection or a magic wand in sight! It was not what I was expecting at all. But the more I dug into my own experiences the more relevant a factor stress became.

I was on the back foot to begin with. After all I meditate daily, and my pain began as a physical result of a car accident rather than a stressful incident. Although the accident brought it’s own stresses, none more than the permanent nerve pain that began following the incident.

But I was open to listening and understanding, and soon realized that stress and chronic pain go hand in hand. Therefore managing stress became paramount if I was to be able to cope from day to day with CPS.

When the suggestion of seeing a clinical psychologist was brought up my immediate reaction was ‘nope, no need to go down that road’. But in looking at the whole picture of my situation I began to see how that bigger picture was now playing a part in the way I dealt with, experienced and managed my pain.

I had triplets to raise, a family to support. A long history of mental illness that had never been fully addressed or discussed. There was childhood sexual abuse that had been kept brushed under the rug. All problems that without pain I was dealing with quite well with on my own.

But now add in the factor of daily widespread electrical nerve pain, the stress of not being able to support my family workwise and a whole bag of worms now opened with it. My past it seemed was also now catching up with me.

I had to be willing to look at past suppressed resentment and fears in order to make my pain more manageable. Everything became relevant, no matter how insignificant or irrelevant it seemed.

In short I accepted help and in doing so have gradually improved my pain levels and lessened the hell-born flare ups.

I still have a long road ahead. But with understanding of the direct correlation between pain and stress. The road may become a little easier to navigate. Minus the steroid injections and magic wands.

Diet and pain

Learning to live with chronic pain has forced me to seek better ways of managing it. Medications help me function but beyond that they do little to lower the pain of flare ups.

Over the last few months i had sunk into a depression from the frustration of having to live with chronic nerve pain. And in disappearance up my own backside, I was causing problems with my relationships at home. Something had to give.

It has been Stacey that has nudged me to becoming aware of the darkness i found myself lost in. Deppresion caused me to get bogged down in self pity around my situation. The further I sank the more I was removing myself from my duties as a husband and parent. It’s my job to bring stability to my home, instead I only brought problems.

Lately some big changes have occurred that have dragged me back to a better mental place. Which in turn makes the pain easier to tolerate.

As well as stepping up my meditation practice my wife suggested a 7 day juice only detox from sugar and carbs. And to follow it up with a healthy diet. This would also help keep the weight off that I had put on from taking medications and comfort eating over the last few months.

The results have surprised me. As well as losing a few pounds my mind has been clearer. I have also come off some of my medication that were causing me drowsiness. I have now got my medications right down in dosage.

I feel mentally alert which is making dealing with the pain more manageable, rather than being overwhelmed so easily.

I have added turmeric to my diet which is a natural anti inflammatory. All in all I have made a big life change which it seems is paying off.

I am responsible for my pain management. No one can help me alleviate the symptoms, that job is solely down to me. And the more I can do to make changes in the way I treat my pain the better my life becomes.

It’s a good feeling to have got back some control over my cps. Because for a while the monster was getting the better of me.

Living with the monster

It’s 1am. The house is silent, and I find myself woken up with nerve pain in my head – again.

There’s no reason for the pain, I haven’t hurt myself today or had an accident, there’s nothing to visibly see. Only invisible waves of sharp electricity radiating along my scalp to my face that I feel with a heavy intensity.

I’ve got better at handling flare ups. For example I no longer go to A&E to seek relief, because the pain is neurological, it’s being created by my brain. And the hospital don’t have a single drug that can relieve it. Instead I ride it out, because I have no other choice.

I’ve made the mistake of adjusting my epilepsy meds today because they don’t help with my fatigue, they slow me down and I get drowsy and struggle to stay awake in the evening. Which in turn affects my personal relationships

It could be the tweak and lowering of the meds that has ramped up the pain. Or it could be a random assault. Just my brain receiving faulty signals from a damaged nervous system.

Distraction helps, writing is good, if only with one eye open, it removes me from the hot stabs and burning that could all stop in 5 minutes or drag on for hours. My hope is that it doesn’t get any worse. Because with more intense pain I get frightening thinking on ways to stop it.

Faith goes a long way

Tonight the monster is awake and I am at it’s mercy. It doesn’t care that I’m tired or have triplets to deal with. It couldn’t care less than that il be drained tomorrow. It’s simply vicious.

I have tried every way to manage it, like slowing down so as to not send my nervous system into wind up. No matter what I do I have to share my body with something so bizarre it cannot be seen or made real sense of. Doctors don’t understand it, only the few pain specialists that treat cps get the struggle.

It scares me at times, not so much the direct pain, but where it takes me emotionally when I am drained of all resources to fight it. Some days it just rears up and grabs me, or pulls me from my sleep. Like tonight.

And all I can do is see that it’s there, try not to resent what is happening and wait for it to dial back down. To enjoy the better days and buckle up for the worst and stay strong for my family.


There is so much going on in the world, it can be difficult to not get drawn into the drama and dragged into the emotional pulls of fear and resentment.

Living with chronic pain is no different. It is all too easy to get drawn into depressive thinking and self pity. I find myself constantly vigilant of the negative thinking that crops up unannounced and has the ability to pull me in and ruin my day.

If there is one thing I have learned over the last couple of years of living with cps, it is that acceptance is a saviour of my mental wellbeing in the times I struggle the most

Acceptance is not approval. It’s important to understand this. I don’t approve of the negativity that rises in me from time to time. But I can accept it’s there without getting dragged into a mental conflict. I am now able to just see what goes on within me with out judgement. Acceptance has the key to freedom in that sense. It makes it an incredibly powerful thing.

Most of my problems since chronic pain began have been caused by my reluctance to accept my situation. I resented the pain and began to resent my life as a result. When anger/resentment gets in it upsets the balance of wellbeing and blinds any purpose I have. All I feel is self pity and frustration. And when lost in those emotions my pain dials up. Stress is a massive factor of Central pain syndrome.

It has taken me a long time to find acceptance with my condition. I have resented it and had fear towards the future and how affected I will be in ten years time.

Depression occurs when resentment is turned inwards. It is a symptom of a lack of acceptance, when resentment has taken hold of my life and I succumb to its negative pull. Only meditation can return me to a place of consciousness. Where I can find acceptance and let go of my frustrations and fears.

I only ever need to live the present moment. Free from the resentments of the past and present and future fears.

I don’t approve of the pain I experience. Nor do I approve of the affects CPS has on my daily life. But i accept it is there, and that at times the monster is bigger than me. And in that acceptance I find peace from giving up the mental struggle.

Here is a link to a free meditation that has helped me more than anything.

Pain and management

I’m not the best at dealing with cps. But regardless of a cause, and what the outcome of my neuropsychological assessment may be. I have the responsibility to do what I can to self manage my condition

I did a seven week pain management program with my local pain clinic late last year. It was as informative as it was helpful in finding new ways to manage life with cps and chronic pain.

A good diet is beneficial to keep weight down and be kind to the body. It’s not new news, that eating healthy and doing whatever we can to keep a level of fitness is beneficial to managing stress levels.

The main thread of the group was reducing stress and external pressures in order to keep the pain dialed down. And to keep the central nervous system from going into wind up. For me music is a big help, and good as a temporary distraction.

Meditation is heavily suggested. With already having a practice, to which there is a link on the home page menu of thid blog, I can agree that it is forefront In dealing with the frustrations and fears of living with such a punishing illness.

The group was also beneficial in that I got to meet with other sufferers. It was good to have the opportunity to find out how others cope from day to day. Cps can be a very isolating condition, one that comes with misunderstanding, resentment and suspicion from others who themselves are struggling to adjust to our challenges and forced changes.

Community is everything in being able to manage cps. Online forums can bring comfort from simply having others to relate to. If you are given the opportunity to speak with a psychologist to unravel past traumas that may be affecting stress levels now I would highly recommend it. It can also lead to accessing other avenues of support.

Rest and relaxation are big defences in keeping the pain dialled down. Short breaks throughout the day can mean getting through the day with out flare-ups. The less our nervous system is being pushed the better. But also being careful not to do too little. Seizing up isn’t helpful. There needs to be a balance.

If you are struggling with chronic pain I’d love to hear what helps you. And I hope you can make a start accessing all the help and information you can find. Because at the end of the day, only we can find what works.

A Neuropsychological Assessment – update

Welcome all.

As you may be aware there is a new corner of my blog, dedicated to my journey with central pain syndrome. If it is home life with triplets you are interested in; or the link to the meditation you will find them both in the menu bar on my home page.

This post is an update at where I am in regard to getting a diagnosis for the cognitive, and memory problems i am experiencing. Thankfully it was just a one off test. Because it was a tough experience for me.

I was also told at the assessment that from the results, I wll be forwarded on to the right services. The results of my test would be matched against the results of typical males my age. They also took into consideration my past of alcoholism and lifestyle, previous mental health diagnosis and my educational history. It would all help to paint a picture for them to work with once the assessment was done.

The testing, as I was warned was draining. My concentration is not good at the best of times. So, to be asked continual questions, designed to be quite difficult that took all of my attention and focus was tough going. My brain almost went into melt down on more than one occasion.

On one of the tests i was told two short stories, then asked questions about each one. I struggled to remember most of what I was asked afterwards. And it got even worse when an hour later she asked me to again to relay parts the stories to her, to which my response was confusion, my mind went blank. I honestly couldn’t remember being told any stories at all.

It was frustrating and my mind was overloading, but I did my best to remain calm and conscious of my rising agitation and give the test my best. The whole process took around four hours, three of which were the cognitive and memory testing. I did get a five-minute break and used that time to meditate and remain as calm and switched on as possible.

Life has to go on regardless

The original Doctor that Stacey and I spoke with, told me that the results would be ready by the 26th March, which is only a two week wait from now, she also said if need be she would refer me to the neurologist at the same hospital and would give me the results over the phone to save me travelling.

It was an important test which had to be done. It will take me a step closer to an answer. Because being in limbo with brain function issues has not been easy for any of us. I am as prepared for a diagnosis of MS, as i am for something more simple as brain function problems created by the pain.

But however this all turns out, I will always continue to do all I can to be a conscious loving parent. Because above it all I am a father, and rasising my family in a spirit of love is all that really matters.