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Louise Trewern's journey fibro

Louise after walking up Devon's highest hillI would like to start with the positive, this picture is me very recently on top of Devon’s highest hill which is called High Willhays. I did this with a local Dartmoor photographer, Glavind Strachan, and, as you can see, I was ecstatic to have been able to do that as five years or so ago, I would have said that it would never happen.
But of course, it hasn’t always been positive. I was always a very sickly child, I feel like I’ve had Fibromyalgia or something like it for all of my life, they couldn’t find out what was the matter with me. My mother would take me to the Dr with a chest infection or some other kind of infection and I end up on antibiotics. This made me quite isolated even as a small child. I couldn’t do PE with my friends, I just couldn’t do it and I was off school a lot with different infections so it started the cycle way back. I wasn’t ill constantly but as I grew up it would play a part every so often.
When I started work, I would end up having to take a lot of time off for these various things that would still crop up and you can’t see Fibromyalgia so there is a lot of disbelief. I know certain people thought I was “swinging the lead” and taking a lot of time off needlessly! That wasn’t the case and I would then find that on my return, I would work doubly hard to prove that I was not a shirker. This sort of thing stays with you and you find you are always trying to overcompensate but you know that people don’t believe that you have this illness. At the time, I hadn’t been diagnosed, I just knew that I had all of these weird symptoms and I was worried that I had Multiple Sclerosis or Cancer or some of the more awful things because of how awful I was feeling. I didn't get a diagnosis of Fibromyalgia until my thirties.
I spent a lot of time looking for a magic cure, trying to find a way to get better and back to how I was. Eventually, I gave up work altogether as I couldn’t manage it anymore, I couldn’t cope. which increased my isolation. Even though I had my family, I didn’t see as much of them as I wanted to as I wasn’t able to take part in things or book things as I didn’t know how I was going to be on any given day. It was really debilitating for me, the pain was increasing the whole time until eventually, the strong medications were introduced. They were trying to find something that would last me through the night as I would go to bed and my back would lock up and I couldn’t move but I needed to be able to move and deal with life, I had young children to look after. My weight was rocketing because I was moving less even though I was dieting and controlling what I ate and my weight increased to about 25 stone.
At that time, I pretty much lived in the armchair getting worse and worse.Eventually, I got to the stage where they couldn’t give me any stronger medication but I felt I needed more so I went back to the Dr in tears, in absolute agony, what could I do? Luckily, he had reached the ceiling of what he could prescribe. At that time I was taking Oxycontin, two different anti-depressants – both for pain, codeine when I needed it, and Diazepam when I needed it, and still I was in a world of pain.
The Dr referred me to the pain clinic in Torbay Hospital where I was lucky enough to meet a wonderful Clinical Nurse Specialist called Dee who suggested that it wasn’t my conditions, Fibromyalgia and Osteoarthritis that were the problem, it was the side effects of long-term opioid usage. They just weren’t working anymore. She asked me – “Are you in a lot of pain?” “Yes” I replied in tears, “Well then, they are not working, it’s that simple. Maybe you need to think about cutting down” I hated her at first, I was in all this pain and she was suggesting that I stop taking the one thing that I believed was working, silly woman! Dee showed me the page on the Faculty of Pain Medicine – Opioids Aware where all my side effects, all of the things I was experiencing were listed as long-term use side effects so I couldn’t really argue with her.
Over the coming months, I’d keep looking at this stuff and wondering if I could have a better life if I tried to lower these drugs or even get off them. During this time, I had two emergency admissions to hospital for opioid-induced impaction in spite of taking other medication to counteract this particular side-effect of opioids but it didn’t work. Both times I was in agony all weekend, had to be taken to hospital by ambulance, and ended up in theatre. For me, this was the limit and I decided that Dee was right and I needed to get off this stuff. I fitted the criteria to be admitted to Newton Abbot Community Hospital for rapid reduction. I was terrified, I didn’t know what to expect but I was also really excited at the chance of my pain getting better and me feeling better. Once I was in hospital, the dose was cut twice and at the end of the week, I came home on a drastically reduced dose which I then managed to stop over the next few weeks. Don’t get me wrong, it wasn’t pretty! It was difficult although they did give me another drug to counteract the worst of the withdrawal.
One of the key moments for me was while I was in hospital and my Pain Consultant Dr. Gunatilleke suggested that in order to manage the withdrawal, I should pace the ward because that triggers the endorphins which are the body’s natural pain killer. I had never heard this before so I put my earphones in and would walk up and down the ward morning, noon and night. The day I went into hospital, my pedometer had recorded 20 steps which would have been my bed to the toilet to my armchair and back again a couple of times. The day after they slashed the dose and told me about the endorphins, I clocked up 2000 steps by pacing the ward and they had to tell me to slow down a bit as my body wasn’t used to all this movement! When I came home, I kept this up, I didn’t have the distance of the ward to pace so I put my earphones in and danced around the living room like a lunatic. My wife would take me out in the car with my wheely walker and we would walk along Teignmouth seafront which was flat so I could manage that. We started to get into a pattern and we did it every single day because we both realised that being out in nature, whatever the weather, we were feeling a lot better.
Louise with her cat
We did it every day for over a year and eventually, I started to lose weight, I started to get fitter, I was able to ditch the wheely walker and go to walking poles, 
and then eventually to no aids at all. I was beginning to be able to do things I hadn’t done for years like paddling in the sea and walking in the woods. We used to take everything with us, snacks, lunch, waterproofs, something to sit on if it was wet because I was slow, really slow, but it didn’t matter what the weather was, we would still go out and walk every day. Eventually, I was able to get into the sea to swim which I do all year round. I can’t explain the amazing feeling this gives me, you’re in nature, with the weightlessness and the cold water tingle is like the buzz you get when you are doing something you really enjoy. I call it “swimbling” as I don’t get in and swim across the bay, it’s more of a slow back and forth. It’s more about getting in than swimming a distance although some people like to do that. I get in have a little swim and get out and that cold water tingle seems to give me pain relief throughout the majority of the day.
Yes, I am totally addicted, I can’t get enough and a swimming pool doesn’t cut it for me anymore. I know it isn’t for everyone but we all have to find an activity that we enjoy. I remember seeing a physiotherapist in Newton Abbot after I came off the opioids and he said that he doesn’t use the word exercise because it intimidates people, he prefers to use the word movement so we discussed the movement that I enjoyed which, at the time was dancing. He helped me to fit in some goals around that, this was before I got into the walking. It is about finding something we enjoy doing. Since that time I have been working as an advocate.
I work a lot for Live Well with Pain and my film is on the new website which I would urge you to have a look at. Live Well with Pain is a not for profit organisation and all of the resources, which are excellent, are developed with people like me who have lived experience alongside clinicians. It is really worth a look, especially the Ten Footsteps to Living Well with Pain which you can follow in 10 manageable sections or dip into because, for me, it was learning the basics about pain that gave me the tools to manage my pain. I still have pain, I’m not cured but I manage my pain through keeping as active as possible. We are all different and just because the drugs didn’t work for me doesn’t mean they won’t work for other people. I advocate for safer prescribing and regular reviews for all.



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