Pain, is it all in your head?

Pain is it all in your head

Kathy James DALL·E 2023-01-01 17.23.49

As I read back through the posts that I have written over the years following my stroke, I recognize that was not a passive recipient of treatment.

In my initial posts I weaved the tapestry of my recovery, postulating and problem solving, often getting the answers wrong.

What I needed right from the very beginning was someone to sit me down and tell me what to expect. This simply didn’t happen, and stroke turned my life upside down. Through all of this I have become my own clinical reasoner and problem solver.

I have written previously that as a consequence of suffering a thalamic stroke, I now have central post stroke pain (CPSP), this condition affects about 12% of those affected by stroke. It is also known as thalamic syndrome or thalamic pain syndrome, it is a neurological disorder and is extremely difficult to treat. CPSP occurs when there is damage to an area of the brain that carries lots of sensory pathways, no particular type of stroke causes CPSP, rather strokes in particular areas of the brain do. Continue Reading

There is no magic bullet cure for stroke.

“Grant me the serenity to accept the things I cannot change, courage to change the things, I can and wisdom to know the difference”

~ Serenity Prayer, Rheinhold Neiber

Following my stroke just over a year ago, at first I was very much in denial about how this disability was going to affect me– I was, going to be 100% recovered, and yes, I was still going on the trip to Europe that was already scheduled for October 2016 with my husband Owen, and friends. During the months post stroke all the hard work of rehab physio saw me making steady gains, then around 6 -7 months things slowly started to plateau. Owen and I had many a discussion around my ability to walk (without canes) a distance, amongst hoards of tourists … even as late as two weeks prior to leaving he was still questioning how we could possibly go? This just made me even more determined, and sure enough we took the trip… (I also took my walking poles). Many a day we racked up over 10,000 steps sightseeing the wonders of ancient Greece and Turkey. Despite hoards of selfie taking tourists at the Acropolis, I survived to tell the tale. The sunshine worked magic, and all the extra walking was good therapy. Good weather, good food, great company…. it really it was the best therapy.

Ephesus,Turkey, October 2016

Ephesus,Turkey, October 2016

How has my life changed in this past year? Well would you believe I’m no longer skipping to the gym at 6am….ha ha. I am super slow getting up in the morning. Getting dressed takes much longer, putting on socks and pants present quite the challenge, I’ve learned to be creative with how I fasten my bra clasp!

I struggle to use a knife to cut up my food. Owen has become a great chef de cuisine, cooking for me is quite the adventure…. chopping things with a sharp knife frankly dangerous when you have a left hand that doesn’t cooperate. Woe betide random dogs that may be lurking in the kitchen! I’ve been known to virtually concuss said pooch by virtue of spastically launching a stray can of tomatoes!

Everything just takes so much longer and requires so much more effort. If I was a grand procrastinator previously you can only imagine how much worse I am now. Medications mask my ability to be my old self.

I feel like stroke really has aged me. There are times when I feel quite frail and feeble. I get upset from time to time. There is such a sense of loss.

I recently watched the documentary: My Brain and Me, that Andrew Marr the veteran BBC journalist has made about his recovery from stroke. In it Marr talks about how it’s the small things that accumulate and make life a bit crappier than it otherwise would be. It describes in a nutshell how I feel.

I am a different person than I was a year ago, stroke has changed me, and as a changed person living with the consequences of stroke share and reinterpret stroke in the context of my life experiences, personality and character.

As this year has progressed Ive learned that whilst others can support you, you have to become your own expert on stroke.

Despite the consequences of stroke I have not given in, nor given up control of my life. Rather I have started to find a balance between acceptance and change.

We all want to believe when we have a problem in our lives , there is someone or something out there that can fix it. As I read back on my posts this past year… this is very much the recurring theme in my story.


There is no magic bullet cure for stroke.

I recently read an article by Katie Gibbons in the Times on the role that optimism plays in women’s health, and I just love this particular quote she cites from Eric Kim, research fellow at Harvard department of social and behavioural sciences.

“ It takes a toolbox of different things to be healthy and being optimistic is one of these tools”

Life goes I am  taking a selfie in Tarifa, Spain (with  my  good hand)! October 2016

Life goes on…here I am taking a selfie in Tarifa, Spain (with my good hand)! October 2016

Its almost 11 months since an artery in my brain burst, flooding the surrounding tissue with blood, destroying neurons … wreaking havoc.

I remain invested in how I experience the future, and I understand the importance of being proactive in finding support, reading and rooting out inspiration to fuel my recovery, but above of all remaining optimistic about the possibilities of neuroplasticity.

We don’t control what happens to us; we control how we respond.

Just writing this journal, describing my health struggles since my stroke, has helped me to understand possible outcomes and to remain stoic in light of the difficult situation I have found myself facing. Having an end in sight is no guarantee that I will make it, but not having an end in sight is a guarantee that I will not.

I have come to understand now, in a way that I never did prior to having a stroke, that if I am to see my grandchildren become young men, live to a ripe old age and enjoy an active retirement with my wonderful husband, I need to pay heed more than ever to what sustains and grows my brain health. I am learning how to live again but in a different way.

Anat Baniel teaches us in her program The Anat Baniel Method to celebrate every small step of progress, because small steps lead to big achievements. It’s very easy to slip into not making an effort, and there are lots of times when I don’t have the drive! Recovery from stroke takes a lot of hard work.

Since my last post (yes, yes, I am so sorry that its taken me so long to write this one), my gains in recovery seem much smaller, and then I realize that I am opening jars, turning bottle caps, chopping onions using 2 hands – in fact my left hand is becoming much more functional. Eating with a knife and fork is still an adventure though! Every so often, I catch myself, and think, hey look at that….. I just did it!

By engaging mental training more and more, improvements with my hand and arm, although minute and very slow, are occurring. I don’t find this (imagining) easy, but in doing so I am developing a greater awareness of my body and the quality of movement.

Thinking and doing are the same in the brain. In other words the same brain regions that are activated when completing a motor skill are activated when mentally rehearsing the same task.

When you mentally rehearse a movement, all but one of the brain regions that control your movements become active in the absence of movement.

After much research on the potential after effects of stroke in the thalamus, I feared that I was developing central pain. My physiatrist has now confirmed this diagnosis.

Post-stroke thalamic pain or central pain. is described well in the book The Body Has a Mind of its Own ~ Sandra Blakeslee and Matthew Blakeslee

“The pain can be moderate to excruciating, and its severity can wax and wane, but the most constant factor is an icy burning sensation like frostbite.

Half of those who suffer central pain after a stroke have damage to their thalamus, If they have damage to the right thalamus, they experience a loss of temperature sensation on the left side of their body along with intense burning pain, and vice versa. The cold sensory pathway is wiped out, and the right frontal insula is on fire.’

My haemorrhage was in the right side of the thalamus.

Pain has a very real purpose it protects you it alerts you to danger. In the case of central pain, no harmful stimulus causes the pain. Instead, injury to the sensory pathways within the brain stimulates central nerve fibres, thereby creating a response to what the brain judges to be a threatening situation. The nerves are just doing the wrong things, and responding to signals from the brain telling them that increased sensitivity is required.

Pain makes you move differently, think differently and behave differently. My pain is very real, but it is a product of my brain which is playing a very significant part. My hope is that with time and brain plasticity I will be in a better place in the future.

I am not an expert , I am just sharing  my recovery from stroke, and some of my coping strategies, in the hope that they might help others who are also struggling.

Uncertainty is where things happen. It is where the opportunities — for success, for happiness, for really living — are waiting’. ~ Martha Nussbaum

Still learning , still hanging in there

Its been a little while since my last post, I thought this would be a good time to remind you of my disclaimer. I have no qualifications – other than I had a stroke on December 26th, 2015. Everything I write is related to something I am trying in my rehabilitation, or some research or interesting thing I’ve read or heard about. I am not a professional, so if you don’t agree with something I write that’s ok folks, I encourage you to do your own research. If you have something interesting you’d like to share please do so in the comments below.

Ok so now that’s out of the way….
This neat animated gif shows the location of the thalmus where I had my brain bleed


By Images are generated by Life Science Databases(LSDB). [CC BY-SA 2.1 jp (], via Wikimedia Commons

Our brains are designed to see patterns and make connections in order to navigate through the world.Following my stroke my body awareness was completely disrupted, my brain could not simply follow the map and make the right connections.

During the early stages of rehabilitation I followed the hospital protocols and worked to regain the movement that I had lost.

I simply didn’t have a plan, much less much of an understanding of the enormity of what lay ahead for me. Now I’ve reached 7 months post- stroke I can safely say that this path is not quite as easy and straightforward as I conceived it would be. Along the way I have also incorporated treatments that are maybe a bit less predictable.

The gains I initially experienced daily have slowed down, nevertheless its still important to celebrate those gains.

Since my last post I am working hard on correcting a lifetime of slouching, it was bound to catch up with me eventually!

I am learning to love just hanging out on my yoga bolster,( its a great chest opener ), and when doing so, concentrating on my breathing. This activity is really helping my shoulder, and my range of movement.

As I sit typing this, I am drawing my shoulder blades down, (not forward) tucking my chin, Hah!. It sure is difficult but slowly it is beginning to become a little more instinctive.

Today I learned about Lumo Lift Lumo Lift is a small lightweight wearable digital posture tracker that helps you train and maintain great posture . I have just ordered one, so I will be sure to let y’all know how useful this little gadget is once I receive it.

I have a growing frustration with my sense of touch, or lack thereof, (in my left hand). When reaching into a pocket I am unable to distinguish or even sense objects.

Our brains seamlessly integrate the tactile, sensory cues from our fingers with hand movements to perceive the different objects. The neural coding that underlies touch is very challenging. I had hoped that in gaining more movement in my hand and arm, that touch would follow, but it’s very very slow.

I have started using Electrical stimulation ( e stim). E-stim can be used for everything from providing a stretch to spastic muscles to regaining sensation on the “bad” side. It is an easy “do-it yourself tool” for recovery.

Drum roll…..

Today I picked up a dime with my left hand ( first time)!

Drugs can help or hurt recovery, but no drug can replace the hard work needed to rewire the brain, rather it can provide a temporary respite necessary to do the hard work necessary to rewire the brain. The nerve sensation in my hand , arm and face have become so much more intense, and much as I didn’t want to, I have started taking a pain relief drug. Its a trade off, so far the overall effect has been pretty good at reducing the nerve pain, but today I am experiencing a side effect of dizziness and finding it hard to focus.

There are no rules that guide you through the process of deciding when a set course of recovery action works. I have found that adding new things keeps it interesting, but also when something doesn’t work or provide a benefit then I have no problem dropping it… so that was my logic in trying the drugs!