I have been asked by a friend, who is admin of a central pain syndrome support group, to share my experience to be kept as a file within the group as access to new members as a reference of sorts. So that someone else who has been diagnosed may read another’s experience with this bizarre, brutal and exhausting condition. And more importantly how I deal with it on a daily basis.
So this in short is my story so far…..
In june 2018 I was hit in my car on my way home from work, by a guy in a van who didn’t see that I was sat stationary at a junction. His van and my car were both written off. I was in shock but felt physically okay with all the adrenaline running through my body. My air bag didn’t set off and my head and neck took a big jolt with the impact. A few hours later I began to feel burning in the back of my head. Within a couple of days I had stiffness and pain through my neck, shoulders and back.
The gp put it all down to whiplash. I was told it would take a while to recover but it would all be okay.
A few weeks later the burning in the back of my head began to flare up, it felt like a hot pressure, accompanied by electric shocks on my scalp and numbness and burning on the left side of my face. I had experienced these symptoms before. Randomly and with months between episodes that lasted only a few seconds. Only now the pain returned to be permanent.
I also began experiencing electrical pain through my spine and burning in my lower back and hips. I was also getting intense electrical currents in my feet. Also now a permanent feature.
My gp diagnosed trigeminal neuralgia, and with a 7 month wait to see a neurologist, in absolute agony and at the end of my rope, in the December I saw a private neurologist who discussed the possibility of Multiple sclerosis. He ordered Mri scans of my head and lumber reigion. The blood tests all came back clear. And after a worrying wait over Christmas, so did the MRI results. The neurologist then discussed, and explained central pain syndrome to me.
I was told it was a rare disorder in which the pain signals being sent through my spinal column, brain stem and brain are not functioning properly. That faulty pain signals are being sent. In short my brain is getting warning signs, it is creating pain for no reason other than my central nervous system is dysfunctional.
So began learning to understand my bizarre disorder. Physically I am in healthy condition. I don’t look like I have a disability that affects everything from my vision, to my cognitive functions to my muscles. This made it incredibly difficult for others to understand in the beginning. Especially my wife who was now having to deal with a husband who was struggling to physically and mentally cope with normal daily routines.
It also prompted a long period of experimenting with finding a nerve medication that worked. Regular pain killers such as opioids don’t touch the pain. Instead I take anticonvulsants. Medications that slow down the signals in the nervous system. Heavy drugs with heavy side effects.
There were days I sat in tears at the doctors during flare ups. Desperate for relief. I have been to A&E on more than one occasion begging them to inject my head with steroids – or give me anything that would give me an hour of freedom from the relentless voltage shocks in my head.
I was finally diagnosed with diffuse central pain syndrome in June 2019 after months of testing to rule out other diseases.
I’ve experienced bouts of depression, anxiety and insane frustration at the lack of help for what is a permanent condition. It’s almost broken me mentally. I experience hallucinations (which began prior to taking medication), most likely down to the stress of round the clock pain.
My saving grace has been the support of the pain management clinic who i see regularly, and have been attending since the beginning of 2019. They have given me a better understanding of what I am dealing with. And on the pain management course they organise, I met others suffering from similar conditions. It was relief just to know I wasn’t alone.
I can’t stress how important it’s been to connect with others. I found a central pain group on Facebook after my wife pushed me to start finding out ways to manage it. And when living with central pain syndrome it all comes down to one thing – management.
Once the realisation set in that pain was going no-where, and found a shred of acceptance I was left with one sole job. Manage the pain and still be able to function as a worker, a husband and a father to a demanding home routine.
Not always easy. I soon discovered that my central nervous system is in a constant state of threat, or wind up. With a life of it’s own which is exaggerating pain around my body. I figured out that I need to stop it from winding up to the point of flare up. Pushing through is off the table. If I overdo it physically and mentally, I pay badly for it.
I have settled on 600mg of pregabalin and 10mg Amitriptyline which helps to lower the pain levels so I can physically function, carefully I might add, I feel very step I take. My back feeling like it’s on the verge of shocking me and snapping. I’m constantly vigilant about movement. I’ve also had to work with what my cns is doing. If I feel levels rising I have to stop, get still and lie down, until it settles enough for me to continue with the day. Which I rarely get through without a nap.
I keep a journal of my pain. For the reason of the length between neurologist appointments. In a short meeting the more information you have the better you can be helped.
I am currently waiting to see a neuropsychologist for a brain injury assessment. The likelihood is that I have an existing injury. Probably caused from a lifestyle of alcoholism. Minor felt problems that I rarely experienced such as the shock pain in my face and head. It would seem that the accident has exasperated this damage and created more permanent injury.
As far as management goes, 90% is dealing with the mental strain. Not just of the major pain. But the secondary problems it has caused. Like the forced changes in lifestyle and in work. Which I now only work three mornings a week. I have had to adjust to the fatigue I now suffer from. Financial issues, relationship pressures all add stress, and as the main problem is centred in the brain, and as stress causes physical symptoms I need to stay as relatively stress free as possible. Low stress = lower pain.
This I personally do by practicing non contemplative meditation. The link is on my menu page if you are interested. When I am in a conscious headspace, the waves of electricity are easier to handle.
And in a flare up. – I have no advice other than buckle up and do what you can to get through it. If you feel your mind snapping get to A&E. Just know that it will pass, it may drag you burning through the gates of hell as it does, but it won’t last forever.
So now after 19 months of relentless pain, and all the other problems I have had to deal with, my advise to anyone would be to investigate all you can. Connect with others who can understand what you are going through and offer advice and support. Push your gp for the referrals you need and don’t give up, no matter how dark your head gets.
If you have family members, be patient with them. They will find their own way of understanding and helping you. Remember that your condition is affecting them also. Don’t be afraid to ask for the help you need. Show them how they can do this.
I hope this has been useful in some way. As for me, I need a nap. Writing this has exhausted my brain. And I’m starting to hurt.