I started clutching at straws

Photo of a woman on a bicycle (Jupiterimages / Stockbyte / Thinkstock)

Lauren, 25 years old:

"It got to the point where I started wondering whether the pain was even real, or whether I was imagining it all. That was really difficult to cope with mentally."

In 2008 I started getting a pain that shot down my legs from my back now and then, after particularly stressful days at work. But it usually soon went away again. When it started happening more often, though, I went to the doctor.

The doctor said it was probably nothing, but he gave me a referral for an MRI scan (ed. note: magnetic resonance imaging) just to be on the safe side. I had to wait five weeks to have the scan. The pain got worse and worse during that time.

After the MRI scan the radiologist told me that I had a slipped disk. I wasn’t given a chance to ask any questions or have anything explained to me. I was in shock. The neurosurgeon I saw after that gave me a sick note for two weeks and prescribed painkillers.

I then went to various doctors to have the diagnosis confirmed. But the more doctors I saw, the more diagnoses I had. Some doctors said it wasn’t a problem with my spinal disk at all, but rather osteoarthritis or spondylolisthesis. I was diagnosed with more and more things. That confused me so much that I didn’t want to see any other doctors. And my problem wasn’t getting any better.

After a while the pain started coming when I was resting too. It spread into both of my legs – almost down to my knee in my left leg, and down to my thigh in my right leg. It then got so bad that I could hardly walk or stand up straight anymore. My two weeks of sick leave were extended to four weeks, then six weeks, and then I started receiving sickness benefit.

None of the treatments helped for long

Things got worse and worse, and I grew more and more desperate. I tried to do anything I could that might somehow help, or that friends advised me to do. I went to see a healer and an osteopath, for instance, which cost a lot of money but didn’t work.

I was so desperate I started clutching at straws. If someone told me that this or that had helped them, then I gave it a go. I felt like I had to try everything out.

One doctor then advised me to have microsurgery on my spinal disk. After the operation I felt better for two weeks, but then it was even worse than before. So I was granted permission to participate in a rehabilitation program.

During the rehabilitation program they suggested that I think about maybe changing my profession as a nurse. That came as a real blow, and I fell into a depression. I desperately wanted to work as a nurse again – that was my goal, it was what had kept me going while I was off sick. I was given appointments to discuss training for a different profession. But I didn’t go to any of them. I couldn’t accept that I was so ill that I’d have to change my job.

None of the treatments helped for long. I had a lot of MRI scans done too, to check whether something was maybe damaged after all. It always looked fine, though: no pinched nerves or anything. But I was constantly in pain. It got to the point where I started wondering whether the pain was even real, or whether I was imagining it all. That was really difficult to cope with mentally. Having such bad pain and not knowing what was causing it really got me down.

Eventually I decided to see only one doctor: the doctor I trusted the most, both personally and professionally. He took me seriously, and also admitted that he really didn’t know what he could do to help me. On the one hand that’s not something you want to hear as a patient, but on the other hand I was relieved that he was being so honest with me. It made me feel like I was in good hands there.

My whole life revolved around the pain

My everyday life had totally changed. I could no longer do my hobbies. Going to the movies wasn’t an option because I couldn’t sit for that long. The simplest activities with friends were no longer possible. I stopped going out at night because I was too scared that someone would push me or that I might trip and fall. I didn’t want to go swimming anymore either, because moving my legs like that just made the pain worse. I usually hung around in my apartment or went on short walks. I had become really limited in what I could do. I couldn’t sit for long, I couldn’t lie for long. I had to keep switching from a standing position to a lying position, to a sitting position, and so on.

In that year my whole life revolved around the pain: Am I in pain? Where is it? How far down does it go? As well as the pain and worries about my job, my long-term relationship broke up too. My partner at the time couldn’t cope with my suffering and couldn’t give me any support. It all got too much for me and so I started therapy, which helped me slowly climb back out of the hole I’d fallen into.

No more negative thinking

One thing we did, for instance, was come up with a plan for what I should do when I get the pain. I always used to start fearing the worst as soon as the pain started, and had thoughts like, "I won’t be able to work anymore", "I’ll have to go to hospital"… I was very tense and too focused on my back. I always thought it was really bad, when in actual fact the pain always went away again pretty quickly. That’s something we worked on. Nowadays when the pain starts I tell myself that rest and warmth will help, and that the pain has always gone away again every time I’ve had it. That helps me to feel calmer and stop thinking about the worst case scenario.

Starting therapy isn’t always an easy step to take because you think it's only pain, not a psychological problem. But the pain had changed the way I was as a person – it had changed my everyday life and my relationships with those around me. After all, it was difficult for my friends and family to cope with when I told them that my problem wasn’t getting better and that I couldn’t go on. It was good for me to have someone who listened to me and was neutral. That really helped me a lot.

Another thing that really helped was physiotherapy. I learned how to sit up straight, how to stand properly and walk properly. I used to be tense all the time which meant I walked with a really bad posture. I did a lot of strengthening exercises, some of which I could do at home too. At first it hurt when I did the exercises, but I did them anyway because the physiotherapist had explained that I really need to build up the muscles to help stabilize everything.

Going back to work was good for me

One year after my problems began I started going back to work bit by bit. Just for a few hours at a time at first, and then my working hours were gradually increased. I spoke to my boss and was given a different kind of work, which involved more sitting and wasn’t as physical. I was back at work full time within two and a half months.

My therapist and doctor had both thought it might be good for me to get back to a regular daily routine. And they were right. I felt needed by others at work again, and had a totally normal everyday life. The pain got better over time too.

I still get back pain at work every now and then. I often notice the pain when cleaning, too. Cleaning sometimes involves movements that aren’t always good for your back. Or when I go shopping and have to carry bags I feel it in my back, even if I spread the weight.

I’m more active again now

Whenever I have any other kind of pain I’m pretty relaxed about it. But I still find back pain harder to cope with. I still worry that it might be something more serious. If I bumped my knee and hurt it, for instance, then it used to be more of a relief for me because it was different to the back pain, which was constantly there.

Back then, my friends were under strict instructions not to ask me how I was. People ask all the time but, because I never felt any better, that just made me feel worse. A lot of friends have now admitted that I was difficult to be around at the time. I often used to be quite down too, so I wasn’t much fun. That makes me all the more grateful that we’re still friends now, despite everything. And that we can talk about what happened. I now know that it was also a difficult time for those around me. I bought a new bike last spring so I can finally go cycling again. That was an important step for me. I’m more active now and I get out more, which is good for me. And I can sleep on my back with my legs stretched out again. I know that might sound trivial, but if you can’t do stuff like that for a while, and then suddenly you can again, it’s a big relief.

I wouldn’t get a third, fourth or fifth medical opinion again

One thing I would like to say: A lot of people who have back problems feel the need to go to all sorts of doctors, healers and osteopaths and try out any treatment anyone recommends. But in my opinion you shouldn’t go somewhere just because someone said you should. You’ll try anything if you’re desperate, but then you’re likely to come across people who are only after your money. At the end of the day most things just didn’t help.

I now think that it’s a good idea to go to a different doctor to get a second opinion. But I would no longer go to a third, fourth and fifth doctor. Not only did it confuse me, but all of the appointments took up a lot of time too.

Acknowledgment

Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.

The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.

Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.