Anna's Story

Anna Letts – chronic pain story (synopsis)

 

I have been living and dealing with chronic back pain for 21 years now. My lower back pain started at age 17, I was very active and played hockey regularly. I had bouts of severe muscle pain which would come and go, I always put it down to muscle strain. My posture has always been an issue, I am pretty tall and have a tendency to slouch or be very round shouldered. This has led to a sway-back posture over the years which I have to be very vigilant to correct when standing or sitting. During my time at university gradually the pain became more frequent, longer-lasting and occasionally severe. I never believed it was anything serious and carried on living life to the full, backpacking abroad, working full time temp jobs and continuing to play hockey. After the pain drove me to seek professional help, I unfortunately received several mis-diagnoses from various doctors and specialists. I was even told, aged 20, that the pain was ‘all in my head’. I had to push and push to get to the right health care professionals. I was to find that this ‘pushing’ for answers and help would continue for years to come. It wasn’t until I was 22 when I saw a lead spinal consultant, who after an MRI told me I had adolescent disc failure. My lowest disc was completely dried out and dead. The only option was surgery and due to my age, I was advised to try to put this off for as long as I could. Obviously, I was devastated, I could not believe it was that serious. I was able to carry on fairly ok at this time with bouts of pain and I was determined not to let it stop me. I continued travelling and teaching abroad until I was forced to return home when I was 24 to have the surgery. The consultant removed the lowest disc and used a stalif metal cage and screws to fuse the lowest two discs together (L4 and L5).

The recovery was a long, traumatic experience; physically and emotionally draining. It took a long time to build stamina again. After months of different drugs I stopped taking them as I could only deal with the pain rather than side effects on top. I remember hitting rock bottom during this time and a conversation with my dad showed me that ultimately the only person who was going to get me out of this was me. All the doctors’ advice, support of family and friends was one thing, but only I had power over my own recovery. I look at my life in two parts: pre-surgery and post-surgery. 

From then on, I literally and doggedly pulled myself forwards and out of that horrendous time somehow. Sheer bloody-mindedness I think and the support of my family and friends. I always describe how I deal with chronic pain as a toolkit of strategies. Over the years I have worked out what works for me and what doesn’t. I have tried every therapy possible, various drugs, mental health support and so on. One of the best things that helped me recover was joining a pain support group to attend a self-help course. The NHS used to run ‘Expert Patient Programmes’ led by volunteers; people with their own chronic pain conditions. The courses were practical and useful, I met some inspirational people. I became a volunteer tutor myself and taught expert patient courses for a few years around Northamptonshire. I felt that I could use my own experiences of pain to help others, which in turn helped me. I was able to use my negative situation for positive reasons.

Between the ages of 26 and 32 I was back in full time work, travelling abroad and managing my pain fairly well most of the time. I went through periods of worse pain, ‘dips’ as I try to call them (rather than holes to climb out of). Not always brought on by anything particularly, they tended to floor me. I ended up off work for short periods, or lapsing back into inactiveness. (It’s not always the right thing to do to ‘rest’ too much). These dips could last a few weeks or months, gradually they got further and further apart and became less debilitating. I found these very challenging as in my mind I was so much better, although I never felt I got back to being 100% fit. I never returned to playing hockey which left a huge hole. I had worked so hard to get back to being fairly ok again and living a normal life. Except it is totally true what they say ‘You are fit for what you do’. I found anything extra put me in more pain and muscle exhaustion. I know that my mental state is so linked into my physical health, if I’m unhappy or stressed my pain levels increase. Then I worry and get upset which makes the pain worse. I know I’m in this negative pain cycle but it’s hard to break. Even now I find it very frustrating that I have no answers as to what makes my pain better or worse. I know some things aggravate my back pain but can’t be avoided; such as too much driving, sitting, standing or lying. Too much of anything really! There is no rhyme or reason to increased pain for me sometimes. During these years I tried more treatments, I was a patient at the hospital pain clinic and tried nerve blocker then facet joint injections, later on an epidural. Nothing worked and each time I had a procedure like this, it set me back for weeks in order to recover from the pain of the needle going through muscles. The problem was (and still is) that the messages travelling from my lower back to my brain were continuing even though the damaged disc had been removed. These messages were being exaggerated by my brain, making the pain seem worse than it actually was.    

Aged 32 I changed jobs, my workload and hours are far more than my previous job. The impact on my back can be negative. If I’m coping well with my back and all my tools and strategies are working, I can deal with more demands. If I am struggling pain wise, it’s a slippery downward slope. Every single day I have to work on my back, I see this as essential maintenance. It is so much a part of my routine I don’t find it a chore or resent it, I just do it. I also continue these strategies when on holiday or travelling – whether that be on beaches, in hostel rooms or any floor I can find! I walk every morning, do my physio strengthening exercises. I usually attend weekly pilates sessions. I try to swim or bike when able, although I have to build up slowly.  Sometimes I have to lie down and rest during the day. I take muscle relaxants and nerve blocker drugs. I go to physio, massage, acupuncture when I need to. I use heat daily, heat pads during work and hot water bottles at home. I am currently working with a pain psychologist to deal with the mental side of chronic pain. Using mindfulness, meditation and ‘mind aikido’, I’m trying to train my brain to separate pain from emotion. I’m trying to learn not to panic when my pain increases and find different coping strategies. I usually find my sheer determination or stubbornness gets me through most pain dips but I understand this is not always the best strategy to use. I am determined not to let my back pain control me, this is battle I sometimes do not win.

I have a hate-hate relationship with my back and pain. I’ve always thought ‘I’m in pain anyway so I may as well do things.” When I’m in a positive frame of mind, I focus on what I can do and how much better I am from years ago. I know no matter how bad it gets, I will never go back to the worst time after the surgery: mentally or physically. I don’t usually allow much time or thought for the back, I don’t let my pain get in my way or stop me from doing much. I tend to ‘get away with’ a lot, my passion being travel. This can sometimes make it worse, I am my own worst enemy. I consider myself lucky, I can live a fairly normal life most of the time. I know there are so many people worse off. I wonder to myself ‘Who else can take a bad back around the world with her and have all these adventures?’ But I know when I’m happy, not stressed and positive, I can do so much more. I try to focus on this phrase “Where there’s pain there’s feeling and where there’s feeling there’s hope.” So when I feel my pain is a little worse I say to myself ‘Well what do you expect, you have thrown yourself into this drive/trip/job/project with no thought for you back and wonder why it’s bad?’ My emotions are usually anger, resentment and frustration. The pain often makes me cry and feel the situation is hopeless, I panic and worry constantly about how I will cope or get through the day. The pain is always at the back of my mind. I can rant and rave quite easily about my back pain but sometimes it makes me very sad when I think about all the years I’ve been dealing with it and it still isn’t better. I try not to think about the fact that I will be dealing with this for my whole life as that depresses me. When it’s all going well and the pain is less and I’m managing it better and I’m happier generally, I don’t consider myself to have a long-term pain condition. But when it’s bad, all these negative draining thoughts and feelings come rushing back and the realisation that I still haven’t fully accepted I have a long-term pain condition hits me yet again. I have to fight very hard to stop them engulfing me. I’m hoping working with a pain psychologist will help with this. I feel my pain as stiff or painful muscles, often affecting my upper back. It’s always at the back of my mind nagging constantly, the energy it takes to ignore it is exhausting. I am sort of used to feeling it every day, always there, it’s my normal. It’s when this pain increases that I struggle.

It can be hard for others to understand long term chronic pain. Friends and colleagues don’t know what to say or do and as for the most part they see me ‘getting on’ and coping so my pain isn’t visible to them. I do hide it too, I project an image of being in control of my pain when I’m not. I try to explain to people the problem with my back and the usual response is ‘What can be done? What are the doctors/specialists doing to improve it?’ There are no answers and it upsets me explaining this. My family have been amazing through this whole pain journey. They have been with me every step of the way and I could not have got through it without them. Practical advice, pep talks, searching for treatment options, paying for my surgery and other appointments, sympathy, quoting back to me my self-management techniques! Sometimes during the dark pain times, you just need people to understand. My family know exactly the ups and downs of my back pain and can see through me when I’m pretending it’s all fine.

In 2016 during a gap year travelling and teaching abroad I had to come home as the pain was so awful. I put it down to the fact I was throwing everything at it, being out of routine and away from my home comforts and treatments. I was forced to head back to my spine consultant, who after a MRI, found that the next disc up from the fusion was losing shock absorbency. Working at 80% efficiency, the disc has been losing the cushioning liquid that acts as suspension between vertebrae. The consultant was not worried, he assured me that 80% was good and that I didn’t need to take this as a big setback. I just needed to continue working on my core stability to protect the muscles around the damaged disc. So back to the physio and yet more hard work. But at least I have control over it, I would not wish to go through any invasive treatment again. I continued my year out travelling, dealing with the pain as best I could.

This year I went through a horrendous pain period of several months. The downward spiral started and got worse before I could recognise it fully and try to do something about it. But it was so dramatic and serious that I couldn’t have done much anyway. Very much tied in to extra stress and a difficult situation at work, I became very unhappy generally which always affects my pain. I usually feel my back pain as a constant nagging, pulling on my lower back, sometimes extreme. I experienced a series of 9, 10 out of 10 pain days and the pain overwhelmed me. It was a struggle just to get through the day. I became very passive, not able to do much at all. I stopped seeing friends or going out, I sought a second opinion from a new physio. I keep being told it is not the disc causing the extra pain, as I am fairly flexible and mobile. I was mentally exhausted trying to keep going; I carry on, ignoring my pain as it gets worse and worse. Until suddenly it’s so bad I can’t think straight. I was off work for the first time in years, I was so close to sinking into depression again, all the old familiar thoughts and feelings came back and took over, I cried all the time. I felt I had gone backwards 10 years. It wasn’t the thought of worrying about missing work, it was the thought that I would be admitting my pain had taken over my life again. This is the worse thing for me as I work so hard to maintain a normal life, and most of the time I achieve this. 

So onwards and upwards…..I will keep fighting and managing my pain as best I can. It might slow me down sometimes, or make me want to give up, but I think my determination not to let the pain control me is the main thing that helps keep me going.

 

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