My chronic pain recovery story

The Start - RSI

I experienced chronic pain for over 25 years. Even as a teenager I remember getting knee pain that was explained as "growing pains" and writers cramp during my GCSE's. Then IBS in my early 20's. All these symptoms had no real physical cause and dissappeared. However, when I was 25 years old I developed pains in my wrist whilst using the computer mouse. Over the course of a few weeks, it spread into both wrists. It then spread up both arms, upper back and neck, leaving me completely unable to use a computer without pain after a few months. I was diagnosed with RSI - Repetitive Strain Injury and could only return to work using dictation software. I was devastated and was told it was permanent nerve damage.

The pains had a profound affect upon my life – my ability to cook, drive, clean, shop, carry bags, wash and even blow dry my hair. I felt depressed and angry at times and most people found it difficult to understand the pain I was in. Anything mildly repetitive would set off pains that could quickly spread and leave me even sore to the lightest of touches. I was prescribed pain killers (Naproxen) which I gave up taking as they had bad side effects and had no effect on the pain. The only relief I could find was numbing my muscles by rubbing ice cubes on my muscles and joints, smothering myself in Tiger Balm and avoiding anything that might cause me pain. Unfortunately any movement at all could cause pain.

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. One consultant told me the cause was a long neck?! I mean, do all giraffes have RSI!? Later, an MRI added severe stenosis as an explanation. All NHS physiotherapy could do was provide 6 weeks of sessions in neck traction (which made no difference). I then a multitude of expensive and mostly pointless treatments: reflexology, acupuncture, more 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. Meditation and acupuncture was the only thing to offer some short term respite from the pain. After many years trying various forms of therapy I had only made a little and very gradual progress.

My symptoms gradually got better over a number of years yet I was still limited to having to use dictation software and limit activities like driving and cooking to a half hour or so.

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. I would have to plan everything around my pain, as lifting my baby, pushing a push chair, feeding her, breast feeding, cooking etc all affected my pain. I even had to take on paid help to assist me a couple of days a week and we hired a cleaner. When my son was born (a much bigger baby!) luckily I had improved a little and could look after him without paid care. I continued very, very slowly to improve over the years but still had times that I would have sudden flare ups out of seemingly nowhere. I was limited in my career as I had to find work where I was able to use dictation software and find understanding employers. 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.

Me after finishing the Alzheimers Memory Walk, in memory of my dear mum - I had waited 9 years to be able to do this walk.

Knee Pain Kicks In!

I may have learnt to live with that pain, however at age 39 things got way worse. 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. After my experience with the RSI, I had a sinking feeling that it wouldn't.

A couple of months later, I started to feel desperately fearful as I found myself in constant pain with yet again no real diagnosis or effective treatment. I remember thinking to myself “this is exactly what happened to my arms and this pain is not going”. It was then diagnosed (using MRI) as chondromalacia patella. However, (and this should have made me question the diagnosis) the consultant also told me that my knees were “as you would expect for my age”?! I pushed to have a physical treatment to make it go away, as I believed it to have a physical cause. Unfortunately I had an arthroscopy on both knees (to "flush" them out), but this just caused even more pain and recovery from the surgery took 3 months. Although I slowly improved a little over a further 12 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 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. I had 2 young children and wanted to be active with them and I felt depressed, angry, and guilty at the impact it had on my family and friends. At my lowest point I remember thinking that if I got a cancer diagnosis it would be a relief as I wouldn't have the burden and suffering of an entire life in chronic pain.

Yet again I spent thousands of pounds and many years trying different treatments. I tried different physiotherapists, (including one that specialised in knee pain). He advised me to strengthen my quads and hip flexors and told me 50% of people get better. I had initial improvement which excited me, yet later the pain spread to my shins and then worsened. I felt like an utter failure and I blamed myself. I tried chiropractic, acupuncture, osteopathy, ultrasound, prolotherapy knee injections, rest, MBST treatment. Sometimes I improved a little and then worsened again and so I became fearful of actually becoming hopeful as I couldn't bear the come down from that each time.

Physiotherapy and pilates helped a little and acupuncture gave a little short term pain relief, 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, or perhaps because the thought of the pain being permanent was unbearable, I would not allow myself to think that I could never 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”.

Anxiety

When you have chronic pain there is so much more to worry about. I also started to experience more anxiety, insomnia and some panic attacks over the years alongside the pain. It is worth pointing out that this is another common symptom of mind body syndrome.