Chronic Pain - My journey

I experienced chronic pain for over 25 years and after so many years, although I always kept hope, I never really dared to believe that I would ever be pain free again.

When I was 25 years old I developed pains in my hand whilst using the computer mouse. Over the course of a few weeks, it spread into both hands, arms, upper back and neck, leaving me completely unable to use a computer without pain. I was diagnosed with RSI - Repetitive Strain Injury and could only return to work using dictation software. The pains had a profound affect upon my life – my ability to cook, drive, clean, carry bags, wash and even blow dry my hair. Anything mildly repetitive would set off pains that could quickly spread and left me even sore to the lightest of touches. I remember wearing tubigrip on my arms and wrists to give me some support. I was prescribed pain killers (Naproxen) which I gave up taking as they had bad side effects and did little to alleviate the pain. I would rub ice cubes on my muscles and joints, smother myself in Tiger Balm and try to avoid anything that might cause me pain. Unfortunately any movement at all could cause pain and it was very difficult for those around me to understand the pain I was in. After all there was no actual injury, despite it being called Repetitive Strain Injury or Work Related Upper Limb Disorder.

No clinician could really tell me what was actually injured or causing the pain. My diagnosis didn’t help me understand what was actually wrong with me nor to help me learn how to overcome it. At one point I was told that the pain was due to nerves down my neck being pinched and nerve damage was mentioned. Later, an MRI added severe stenosis as an explanation. After I had given up on the initial NHS physiotherapy that just provided 6 weeks of weekly hour sessions in neck traction (which made no difference) I tried everything to alleviate the pain. I tried reflexology, acupuncture, physiotherapy (at least 3 or 4 different physiotherapists), osteopathy, chiropractic, Low Level Light Therapy, healing, kinesiology, the Alexander Technique. I tried exercises, stretches, rest, herbs, meditation. After many years trying various forms of therapy I had only made a little progress. My symptoms did gradually get better than they were yet I was still limited to having to use dictation software and limit activities like driving and cooking to a half hour or so. I still experienced some kind of pain in my hands or arms during most days and had given up on ever being free of the pain. Instead I just learned to live with it and accept it.

When I became a parent for the first time in my early 30's it was an extra challenge. Luckily my daughter was small and I gradually got stronger as she grew and found I was gradually able to do more yet still in pain most days. I would have to plan my day around my pain, as pushing a push chair, feeding, breast feeding, cooking etc all affected my pain. I would frequently worry about the pain, whether I would be able to do normal activities and whether I was damaging myself further by pushing through my pain. I also felt frustrated and guilty as I felt like my pain was impacting my family and often the pain would leave me feeling down and disheartened. I therefore felt I was battling with my own mental health aswell as the pain.

As if that wasn't enough, at age 39 I developed what seemed like an even more debilitating and distressing chronic pain. During a Zumba class, a pain started under one of my kneecaps. Within days it worsened and spread to both knees even though there appeared to be no injury. I was told by my GP that I had tendonitis and that it would go in 6 to 8 weeks. I had a sinking feeling that it indeed wouldn't, especially after my experience with the RSI.

A couple of months later, I started to feel desperately fearful as I found myself in constant pain with yet again no treatments helping. I remember thinking to myself “this is exactly what happened to my arms and this pain is not going”. Although I slowly improved a little over 6 or so months and was sometimes able to walk a little pain free, the pain was variable and it severely limited my walking and standing. I had tight thigh muscles and the pain seemed to move and spread around my knees and upper legs. I avoided many activities, and was so limited in how long I could walk or stand, that ordinary activities that I took for granted became quite difficult, which was quite depressing. I had 2 young children and wanted to be active with them and yet again felt guilty that I couldn't do what I wanted to do with them. Sometimes my husband would take them out for a walk and I would stay home as I couldn't participate. I felt desperately low at times as I was missing out on so much and yet didn't want to also throw in depresssion aswell, so did my best to try to look at what I did have. I was then diagnosed by an Orthopaedic surgeon (using MRI) as having chondromalacia patella. However, (and this should have made me question the diagnosis) they also told me that my knees were “as you would expect for my age”. I had an arthroscopy on both knees (to flush them out), but this just caused more pain and put me back 3 months.

Then began the many years of trying different physiotherapists, (including one that specialised in knee pain). I was advised to strengthen my quads and hip flexors and told 50% of people get better and felt like a failure when I didn’t. I tried chiropractic, osteopathy, ultrasound, prolotherapy knee injections, rest, MBST treatment. I took different supplements, I meditated and built up my mental health, which was challenging at times. Physiotherapy and pilates helped a little but after many years and so much effort, at best I could walk a mile pain free and stand for about 40 minutes. I still couldn’t do any form of exercise except Pilates and I bought an electric bike to help me get mildly active.

Despite all this, I never gave up on thinking that I could overcome the pain. When my husband would say “we can’t do x because of your knees”, I would respond “not at the moment but maybe in time”. I don’t know if I was optimistic or just couldn’t bear to think that I would be permanently disabled.

Breakthrough

The breakthrough came after I listened to a podcast about chronic pain in the summer of 2020. This was the catalyst that started everything. I came across the Podcast "The Cure for Chronic Pain", by Nicole Sachs. I was very sceptical as I thought that if there really was a CURE for chronic pain, surely we would all know about it, right? However, I was curious and so I listened to the podcast and she talked of how many people she had cured of chronic pain and mentioned Curable. I wanted to know the science and proof of how it was possible to really cure pain. The curable podcast "Like Mind Like Body" explained the scientific proof behind Mind Body Syndrome (MBS) and also had the proof of many stories of people that had overcome years of chronic pain. I was SO excited and hopeful, though was also not wanting to get my hopes up. After all, I had had my hopes dashed many a time after trying yet another therapy, but something in me was urging me to believe.

Once I understood MBS, and looked into the evidence that I had a MBS and not a physical cause for my pain, I gradually helped by brain to rewire and switch off the pain.

I read a number of books, listened to a huge number of podcasts and finally, and most crucially, found a Pain Reprocessing Therapist (PRT) I felt I could work with. PRT is an evidence-based approach for treating chronic pain. Rooted in neuroscience, PRT aims to rewire neural pathways in the brain in order to deactivate pain.

In February 2023 I underwent 12 weeks of Pain Reprocessing Therapy in order to cure my pain. These scientifically based methods teach the brain to feel safe again so that the pain signals stop. This is done by various method such as: accepting that there is nothing wrong with your body, expressive writing/journaling and restarting activities as if you were healthy, rather than avoiding activities. It is a gradual process for most people, though highly effective.

Life Today

Today I am pleased to say that I feel unrestricted in my walking and standing. I am 53, and even though I've not been able to do much exercise at all for the last 13 years, I am now able to walk for over 8 miles (up and down hills) and doing aerobics again. I have done many activities I was previously unable to do or unable do for very long been: kayaking, weight lifting, carrying heavy bags, plus taken up knitting and crochet - repetitive crafts that would have left me with crippling pain before.

I still occasionally get sensations but I now don't panic or stop what I'm doing. I know what to do to help my brain feel safe and turn the pain off.

After feeling so restricted for so many years, and so full of fear; I feel so appreciative of my health. I want to help as many people as I can to find the way back to their own freedom from chronic pain.

If you'd like to read more about chronic pain or pain reprocessing therapy, see my other website breakfreeofpain.com