Faces of Pain - Mary's Story

My name is Mary (known as Spicey on the forum). I am 35 years old and I live in North West England, UK. I have suffered from chronic pain on and off since I was 21 years old, and here is my story to date.
In 1994 I was working in a research laboratory based at a London hospital. One day I was helping to move a gas cylinder that weighed about 70kg (154lbs). It was on a trolley, but I had to lift it over a ledge. As soon as I stood up I knew something was wrong - I had a really tight feeling down the left side of my lower back and around my hip. As the afternoon went on, this pain got worse. One of the doctors from my department came to look at me, and said that I had probably pulled something in my back and to go home, take some Co-Codamol and lay on a board for 6 weeks and not to move other than to visit the bathroom. At the time I was living with a lovely family who took care of me while I lived in my room for 6 weeks. At the end of that rest period, I didn't feel any better. I started to see a really good physiotherapist, and she recommended that I do some gentle mobilisation exercises daily. She said that I was better off not using any walking aids. I was walking with a very pronounced limp and often was literally dragging my left leg. Over the next few months I was in and out of work every few weeks. Each time I tried to go back the pain just got so bad again that I ended up taking more time off. I was studying my degree at University one day a week and I had to defer my course until the following year because I missed so many lectures. I had an MRI scan and it showed that I had a small bulging disc at L4-L5. The surgeon said that the only thing he could offer me at that time was laser surgery, but it was still a very new procedure that only had a 30% success rate so given my age, he didn't think it was viable option (and I agreed with him!). So, I persevered with physiotherapy and pain medication. It probably took about 2 years before I began to feel right again, during which time I literally had no energy to do anything other than get through work. Once I got home, I just had to rest all evening. I began to suffer from depression around this time as a result of the constant pain and the change in my lifestyle. However, I did manage to get back to Uni the following year, and eventually my life returned to normal again. I was once again able to go skiing, cycling, roller-blading, jogging and visiting theme parks to ride roller coaster. If I over-did things - like too much gardening or carrying things when moving house, I would feel a lot of pain but after a few days of rest things would settle down again.
Now fast forward to 2002. I had moved back to my home town in NW England and I had a good job working in sales for a scientific equipment company. I had raised concerns with my managers about the amount of lifting of equipment that I was expected to do especially because of my history of back problems. These concerns were ignored. In October that year I married the love of my life and we had a fantastic honeymoon on one of the Canary Islands. We got home and began to settle into life as a married couple with our pets. 2 weeks after we returned from our honeymoon I was lifting some equipment into the back of my car. When I stood up, I felt that all too familiar feeling in my back again and I knew that I had done something bad. Luckily I was only about 40 miles from home that day so I cancelled my afternoon appointments and drove straight home to rest. That night I went for a walk to watch a local fireworks display, and by the time I got home the pain was so bad I could hardly put one foot in front of the other. I was aged 29 years old, and that was the last day I would work for the next 2 years. I had severe pain in my lower back and sciatic pain radiating down through my left hip and down my left leg. On bad days I also had sciatic pain down the upper part of my right leg. I had another MRI scan and they showed once again that I had a small bulge on my L4-L5 disc. Due to the small size of the bulge, my surgeon couldn't understand why I was in the amount of pain I was in. I began physiotherapy and I had in excess of 30 sessions altogether. She gave me a walking stick to help support my left side, but within a couple of months I needed a second stick as my right side was also becoming weak. By Easter 2003, I was in so much pain that I could hardly move so my husband called the surgeons secretary to see if there was anything they could do. He brought me in for an epidural steroid injection (ESI) the following week, but that made things worse.
My surgeon didn't think it was worth repeating the ESI as it hadn't helped the first time. Instead, he referred me to a chiropractic clinic and I was under their care for almost a year. I had chiropractic treatment and also attended the specialist rehab gym where under their guidance I began to do specific exercises to strengthen my lower back. I was determined to work hard and I would religiously do my exercises at home even when they hurt so much it brought me to tears. None of this helped. Meanwhile, work had been getting regular progress reports from my surgeon. They decided that as I wasn't going to be able to return to work in the near future, and because the surgeon had recommended that I no longer work in a job that required a lot of driving, they terminated my employment. So with the job went my company car, my laptop computer and mobile phone. As I was the main income earner at home, it left us struggling financially. This was not the start to our marriage that we had planned, and both my husband and I found this situation really difficult to cope with. But he was very supportive and helped me as much as he possibly could. I was so pleased that I was now living back home because being near my family allowed my Mum to help us out too. I spent most days just stuck at home resting but trying to keep mobile. I could no longer manage to walk around the supermarket do my food shopping so I had to use their complementary wheelchairs. In the end I could only go out to places that provided these wheelchairs otherwise I just couldn't manage to get around. Despite all the help and support I was getting from my family, I was struggling to cope and I had to start taking antidepressants again.
By March 2004 things were worse than ever, and my left leg had begun to give out on me when I tried to walk. I went to see my surgeon again, and he offered me a new type of surgery that was devised to replace fusion surgery. It was a dynamic stabilisation device called Dynesys and the advantage of this system was that it allowed you retain a wider range of movement post surgery and also allowed a quicker recovery time than a traditional fusion. I was told that the waiting list for this would probably be longer than a year if I had it done on the NHS, but if we paid to have it done privately, I could have the surgery in 3 weeks time. So we decided to pay and I had the surgery in April 2004. I was very ill from the anaesthetic and pain medication after the operation, but when they got me out of bed on the 2nd day after the surgery my legs actually felt solid for the first time in 18 months. My surgeon told me that when he opened me up, there was much more going on inside than the scan had suggested. He said that when I was upright, my bones had been rubbing against each other and trapping the nerves. He implied that if I had waited to have this surgery on the NHS, there was a good chance that I may have incurred permanent nerve damage. I came home after 8 days in hospital and it was really hard managing at home to begin with. Mum would come and help me during the day as often as she could and my husband would help me after work and at the weekends. My husband was fantastic during this time, helping me to shower and to dress the lower half of my body for several weeks post-op. He helped with all the cooking, cleaning and laundry too. I started physiotherapy immediately after the surgery, and I did my exercises religiously each day. I also went out for lots of walks but I could only manage short ones.
I was making progress but it was very slow. I wasn't able to return to work until about 6 months post-op, when I began to work 2 days a week helping out in my Mum's shop. I found it really tiring at first, but after a while I was able to manage 3 days a week. On work days I was too sore to do anything else when I got home. A year after my surgery, my husband and I were a bit disappointed in my progress as we had hoped that I would be better than I was. We were both keen to try and start a family and that wasn't going to be possible with me still in the level of pain that I was in. But I did continue to make very slow progress. We started to go out on some gentle bike rides and even started dance classes together - which is something I have always loved to do. We had also joined a historical re-enactment group and spent weekends away with them which was a really good escape for us both. In October 2005, I was feeling ready to increase my working hours again but didn't feel able to cope with a full time job. I was fortunate enough to find a job working as a science technician in a local high school. As the hours were term time only, it seemed the perfect way to increase my working hours without going straight back into full time work. Things were finally looking up again, but a couple of weeks before I started my new job - completely out of the blue - my husband left me.
I was totally devastated and I just couldn't imagine my life without him. It was extremely difficult to cope not only physically, but also emotionally and financially without his help. I had to take on the mortgage by myself which meant that I had to get a 2nd job in addition to working at the school. This was really hard on my back, as was trying to cope with the housework, etc., alone. I had to cut right back on food shopping and tried not to use my heating during the winter in order to save money.
I had a dog before I started dating my husband, but during our time together he also brought 3 cats, a large fish tank and 2 hamsters into the home so I had all of those pets to feed and take care of too. My Mum helped me out so much during this time. It wasn't easy, but I was determined that I would continue to get better despite my circumstances so as well as working the two jobs I continued with my exercise program. By summer of 2006, I was feeling the best I'd felt since the surgery. I still had pain every single day, but it was a level of pain that was manageable and I just accepted it as part of my life. I knew my limitations and was very careful about things I would and wouldn't do, for example I wouldn't risk going on roller coasters, roller-blading, or skiing, but it didn't restrict me too much. I enjoyed going to aerobics classes and I had even been able to start jogging 3 times a week. Unfortunately I came down with a kidney infection that October and it took me a few months to recover and feel strong again. However, in spring 2007 I decided it was time to find a full time job. I was very quickly offered another job in scientific sales. At first I was concerned because of the driving, especially after what my surgeon had said previously, but my area was only small and the most I would be driving each day would only be about 40 miles each way. So I decided to give it a try and I started the new job in April 2007. With it came a new company car and a salary that meant I could actually manage to pay my mortgage, buy food and use my heating in winter! Within a couple of weeks of starting, I noticed that I was getting sciatic pain after driving for any longer than 20 minutes, but with the help of a lumbar support cushion in my car I increased this time to 40 minutes so it wasn't causing me too much trouble. By August 2007, I was enjoying the job and doing very well with the sales. I met and began to date a new boyfriend. It felt like my life was finally back on track again.
By the middle of September, I noticed that my sciatic pain was increasing again. I had replaced my briefcase for one with wheels to prevent me from having to carrying it, but whenever I drove I was noticing an increase in pain. I also started having pains in my left foot, although I didn't realise at the time that it was related to my back. During this period of time, I had to make a number of journeys that took me a lot further away from home than my usual area and this continued to make my pain worse. One particular journey in October took me over 5 hours to get home, and after that my back never recovered. I was only able to work for 2 days following that, and I then I had to take a week off work because my pain was so bad. I saw my GP and she gave me some strong pain killers. This was the first time I'd had to take off due to back pain since I returned to work after my surgery and I was really upset about that. I felt better after a week of rest, but when I went back to work again I had to make another long journey for a 2 day meeting. It was Halloween night and I while I managed to get to the location, as I went through the day my pain levels began to increase dramatically. By the end of the day I could hardly walk, even with my walking sticks. I had to spend that night in a hotel. I was in absolute agony - so much so that I was on the verge of calling an ambulance. The pain was in all of my lower back and shooting down both legs. It was excruciating just putting one foot in front of the other. I had very little sleep that night. I don't know how, but I managed to sit through the 2nd day of the meeting and then I had to try and get myself home again. Driving home that afternoon was the worst car journey I've ever taken. I had to drive for an hour and a half in tears because the pain was so bad. That was 1st November and it was my last day of work. As I hadn't been with the company very long, I only received company sick pay for 2 weeks, after which time I went onto statutory sick pay - which was my only source of income and no where near enough to manage to pay all my bills.
The pain was worse than before the surgery. The sciatic pains were erratic and affected every inch of both of my legs and feet. My back pain was a constant dull ache with intermittent severe stabbing pains in the area around the hardware and the whole area around the old incision site was extremely tender to touch. I also had a loss of sensation in my lower limbs which meant I couldn't detect hot and cold and this resulted in me burning myself on my hot water bottle on a number of occasions. My mobility was severely impaired, with me needing 2 crutches to walk any further than 10 metres (33 feet) and most days I struggled to walk further than 50 metres (164 feet) even with both crutches. Driving was also very painful, and usually I could only tolerate it for about 15 minutes before severe pain kicked in. Sitting was also extremely painful after only 10 -15 minutes in any chair.
Initially, the surgeon thought I may have herniated the disc at L5-S1 as the sciatic pain was affecting my feet and toes. I had an MRI scan in November but it showed no evidence of any disc bulges or herniations. In January '08 I had a bone scan to see if any of my hardware had come loose or if there was any infection present and that came back clear. I had a repeat MRI scan in February and that too came back clear. I had another ESI in March '08 which made my pain worse for a few days and then things returned to normal. In April, my surgeon told me that it wasn't worth repeating the ESI. He also said that I was unlikely to get better without further surgery, but due to my history and the fact that the L4-L5 disc has never healed, the only option available to me would be to have the hardware removed and replaced with a traditional fusion. He gave me a 50% chance of the surgery being successful. Before making a decision, both he and I agreed that a 2nd opinion would be in order, so he referred me to a colleague in the Spinal Unit down in Manchester. During the wait for this referral, I began to have some new symptoms, which included intermittent bladder incontinence and an increase in nerve pains down the backs of my legs. I was also suffering from intermittent numbness in some areas and my reflexes were brisk. The pain and the stress of not having any income was really taking it's toll, but I had the support of my boyfriend who visited me every weekend, and my Mum helped me with shopping and gardening whenever she could.
Meanwhile, my employers had been seeking medical reports, and following an examination by occupational health they concluded that I would not be able to return to work in the foreseeable future. So, they decided to hold a formal meeting to terminate my employment with them. My contract was terminated on 30th June 2008. A few days after that, my company car was taken away. Then, 2 days after my car was taken, my boyfriend ended our relationship - once again out of the blue. It was devastating enough having this happen to me once, but to go through it a 2nd time has been very difficult. Once more my back problems have caused me to lose my job, my car, my computer and my partner.
I have seen the new surgeon and he requested a new MRI scan which was done on 29th July. I will get the results from this when I see the surgeon in the middle of August. From what I can gather from my surgeons, they think that even though there is nothing obviously loose, the Dynesys hardware is no longer doing what it is supposed to be doing. As a result that section of my spine is unstable. The disc that is being supported is no longer bulging but it has failed to heal. My first surgeon doesn't think it will be strong enough to cope if they just take out my hardware and leave it unsupported. So that leaves me with limited options. I hope to finally get an opinion on what is the best way forward when I next see the 2nd surgeon.
I applied for Disability Living Allowance back in December and I was approved in April. In June, I began to receive Incapacity Benefit in place of my Statutory Sick pay, and also began to receive some Income Support. This is still not enough to pay my mortgage but I am currently awaiting the outcome of my application for help with my housing costs. I have gone through several medication changes over the past few months, and currently I am taking Lyrica (Pregabalin), dihyrocodeine and paracetamol. I also take Amitriptyline at night to help me sleep. Even with these medications I am still averaging a pain score of 7/10 most days. I am struggling to cope with things. I hate being in constant pain, with no surgery date or end in sight. I hate that I cannot work and I am relying on the state to pay my bills. I hate that once again I find myself having to spend night after night unable to sleep and feeling so alone. I hate that I feel I have probably missed my chance of ever having children. I hate that I now have to rely on people to take me shopping and to hospital appointments because I have no car. I hate that I need to use a wheelchair if I'm going to be walking for more than a few minutes at a time. I hate the way people look at me when you are struggling along using the crutches, or the way they stare when they see me in the wheelchair. I am in a position where I cannot care for my pets properly - I now only have 2 cats, my dog and the fish, but I still find it difficult financially managing to feed them all. If I have further surgery this will get worse for a while and there is no way that I am going to be able to look after my dog therefore I may have no option other than to re-home him. I am angry that my life has turned out this way - I have lost everything all because I tried to lift something that was too heavy for me. I have finally admitted that I need help to get through this and I recently began to take antidepressants again. I am also being referred for some counselling, because as my GP described it, I am grieving for everything that I've lost.
There is such a stigma attached to back pain sufferers. Also to people who are on long term disability or incapacity benefit. Because you can't see the pain people take advantage and abuse the system, leaving those of us with real issues un-believed or un-trusted. But the truth is, living with chronic pain severely affects people's lives. It can happen completely out of the blue and turn your entire life on its head. I am not lazy, I am not work-shy. In fact, I am a very strong and determined person and I am a fighter. But this level of pain literally has me on my back. I can't work, I can't play, I hardly ever go out other than to go food shopping or to doctors and hospital appointments. If I do go out I pay for it with additional pain for days afterwards. I have had to turn down so many invitations now that most people don't even bother asking me anymore. But I count my blessings every day that I have such a supportive Mum and a small group of close friends who help me to get through this. The help and support from my on-line friends has also been invaluable.
I hope that by reading my story, it helps people who are non-sufferers to have some kind of understanding of what it's like living with constant pain. For those who are also suffering, I hope it helps to give you some proof that there is life after surgery and that living with chronic pain is possible. Writing my story has reminded me of my own strength. Looking back at what I achieved after my previous surgery and subsequent change in personal circumstances has shown me that if I did it before, then I have the strength to do it again. I may need some help to get there, but I have learned that it is a sign of strength to ask for help when you need it. I have not given up on my dream to be able to dance again, to go skiing again, and one day even have children. With a positive attitude, motivation and determination, I know that I can get my life back again and I hope that I can help others to do the same