Symptoms:
Pain
Sensory changes (cramping, burning)
Fatigue
Start of symptoms
In December 2015, my symptoms started. What followed was my annus horribilis. I was 43 years old, working full time, and married with two young children.
The symptoms started with a low back pain. I had had back pain before. Usually the pain would last for about 2 weeks. I would take some anti-inflammatories medication and soon the pain would pass and I would get back to normal life.
This time I did not recover after 2 weeks, in fact it was the opposite, the symptoms kept evolving, it felt like it was getting worse and worse.
It wasn’t just the pains in my hips, legs and lower back. My whole body felt in shock, like I had been in a car accident. I felt like I had had every bone in my body broken. The pain developed into cramping and burning sensations, alternating with a feeling of being very cold in the legs. I was feeling really, really, really tired, not resting at all during the nights. I would wake up feeling like I had been running a marathon.
I was really worried about what was wrong with me, and I felt like that nobody was understanding the situation and helping me.
Interactions with healthcare
In that time, as I say, one year and half, I went from one doctor to another doctor and different physiotherapists. They were giving me some painkillers and anti-inflammatories but all the things that had worked when I had back pain in the past didn’t work at all.
I got all the tests done. And I remember, going to different Doctors and they all said ‘Well, this scan is normal. You have a normal spine. It doesn’t match with what you’re saying about your symptoms’.
They said to me ‘Don’t think about it, do normal life’.
It was really hard for me to hear this. I felt like, ‘no, no, no, you don’t understand. Like, I want to die! I need something, some type of drugs to live my normal life and you are telling me that I have nothing.’
I was really getting annoyed. My thinking was ‘OK I have a problem, and this MRI or whatever test that I do will show the problem and then I get the solution.’ I had these expectations and this very logical way of thinking. But it was the opposite. According to the logic I had, my symptoms made no sense.
So I was really feeling mad with the doctors, and with the system, because I didn’t get any answer.
What helped: Feeling understood
Later on, I began seeing a physiotherapist. She didn’t put a finger around my body, but when I was seeing her I started feeling better. She didn’t care so much about MRI scans, she cared more about my symptoms, my story.
She gave me a simple explanation that my symptoms could be related with the with the type of lifestyle that we had, with stress and poor diet and so on. She explained that I needed a normal life with less stress and good healthy habits and my body will recover normally.
Of course, I didn’t do many of the things that she suggested. She was finding scientific articles, papers from the US advising things like cold baths and intermittent fasting. Now these things are very trendy. But it was the first time I heard about treatment approaches like that. So I didn’t experiment with everything, but I did change to a low sugar diet and took some supplements.
Maybe these steps helped, but I don’t think I got better because of the diet changes. I think it was because that was the first time that I was like finding someone that was really interested in solving my problem. I was feeling like I was finally being listened to by someone who was considering my situation, with dedication. She was very good. I trusted her.
What helped: a flexible return to work
At first when I got symptoms, I stopped working. But after four months I started working again because I couldn’t extend my leave.
When I had to go back to work, I was scared. I was feeling so bad, but I had to start working again because I didn’t have any other option.
I remember asking my boss for a shorter work day. My boss said to me ‘I think it’s better than you have a normal working day. But if you feel bad, you can work from home if you need.’ He was very flexible with that. And I felt a bit relieved, because I knew I had his support if I needed to rest, if I needed to go the swimming pool. This made it manageable, to know that my boss understood and was flexible about allowing me time to take rest or to move my body if needed.
Looking back, it was good to go back to work, because it was a way to start doing other things. It took my mind off my repetitive thoughts, about how bad I was feeling, and worrying what was wrong. Thinking that way was a vicious cycle.
What helped: overcoming fear and avoidance
In the first months or even years I had symptoms, I was seeing everything like black. I thought I couldn’t do anything, because I was feeling so bad. Everything seemed impossible, everything was like a barrier for me.
Going back to work began the process of overcoming those fears.
For example, at the beginning the thought of driving was like climbing Mount Everest. Sitting still made me feel claustrophobic and panic, and made my symptoms worse. I thought it was impossible for me. That I just couldn’t drive. It was the same with sport or work.
Now I know that I can do it. I’m able to do it. Of course I don’t like it. I prefer to travel another way, but if I need to do it, I can do it.
So every time I could overcome this avoidance, this was positive. It gave me a boost when I was able to do things that at the beginning felt impossible for me.
What helped: medication
After my low back pain crisis in December 2015 I started taking pain killers. They didn’t do much, I kept feeling very tired and stiff. 6 months later I was feeling worse, I was so desperate and scared that the doctor prescribed Duloxetine and also Diazepam and Amitriptyline, so I could rest better and feel less depressed. The combination of these drugs seemed to help me. I felt better. And I have had Duloxetine until December 2021 (low dose) and I still have Diazepam and Amitriptyline (very low dose).
My experience is that drugs can rescue certain situations. Don’t be too afraid of drugs. There are side effects of course, and I do think a lot about quitting … but also I think that it’s not a big deal if I need to take some drugs during my whole life. I am still living with that dilemma, but I don’t pay much attention to it.
What helped: getting a neuroscience based explanation
In 2019 I started a group course which was run by some doctors locally. The group met for one session a week for 12 weeks. It followed a curriculum to help us understand pain, how it works from the point of view of the neuroscience. For me, understanding that pain is not the same as damage was a sort of cognitive therapy.
Now I understand better how my pain is working. I know the logic of why, when I am out with friends and when I’m in certain situations I don’t feel pain at all because. In relaxed situations, I don’t need to get alarm signals from my brain. So I understand how the pain is working, and this allows me to feel confident to know when to go against what my brain is suggesting.
I still have symptoms. Even though I don’t know yet if I will be able to get rid of the pain completely, I know that I will have good moments, some bad moments. I see recovery now as a process, involving things I can work on, to practise or to understand better.