Hi! I’m Beth from Hereford, UK. I have lived with Fibro for many years, quite likely longer than myself or my doctors realized and was diagnosed in August 2012.
My diagnosis was explored and given to me at a routine check-up with my consultant who had given me a course of prolotherapy in my lower back caused by a sports injury and bad posture from my teens. Discussing the improvement in my back pain, I highlighted that my knees had started to ache (assuming that was due to changes in my back). He was quick to comment that I shouldn’t be getting issues elsewhere as a result of the procedure and went on to ask me about other parts of my body and mood.
The answers given were:
- Tingling and numbing in my hands and feet
- Pain in my elbows, neck and shoulders
- Irritable Bowel Syndrome (IBS), that I had been back to my GP about
- 4-5 hours’ sleep a night if I was lucky
- Low mood
- Low energy
This led to a discussion about Fibro. Baffled by the word and that all these symptoms were connected, he suggested we conduct the trigger point test. 16 out of the 18 trigger points caused a pain reaction and the diagnosis was confirmed. I was referred to my GP with a leaflet to discuss medication and pain management techniques.
At the time of diagnosis, I was working full-time as a manager of multiple static and floating support projects in mental health and homelessness. My main objective for managing the condition was to stay working. Initially, I tried amitriptyline but came off it quite quickly, it helped me sleep at night, but I felt like a zombie in the day. I took some time off from work to adjust to my new normal and was referred to pain management in which I opted for mindfulness meditation classes.
I took naproxen and a co condom for pain relief only when it was really bad and managed my stress, sleep, and anxiety (huge triggers for pain) through meditation. Alongside workplace changes like an ergonomic chair, keyboard, mouse, and condensing my working week into 4 days instead of 5, I managed effectively for a great number of years.
However, a couple of job changes later, having to work 5 days, not 4, relocating to a bigger city, and getting out of good practices, I rather neglected myself and my health. Late 2017 and rolling into late 2019, I was back on amitriptyline, naproxen, co codomain (daily), duloxetine, and smoking cannabis on top of it all. All in a desperate bid to go to a job which was causing me huge amounts of stress and I became more unwell than I had ever been previously.
Flare–ups were more regular and for longer periods, my liver function was alarmingly low, my mental health was in tatters and I experienced a major breakdown in February 2019 which lead to an additional diagnosis of PTSD.
I quit my job, moved back to my hometown, and was fortunate enough to be in touch with an acupuncturist who felt she could help me. We took away the label of Fibro and agreed to focus and treat the symptoms individually. We spoke about how I would like to manage my health going forward (medication-free and holistically) and set out on a complete factory reset.
I was put on a strict diet to help my liver and stomach recover and process. This involved no junk food, no caffeine, no sugar, and I was only allowed to eat green fruit and veg, brown rice, fish that wasn’t shellfish, apples, lemons, and honey. Gradually we reintroduced different food groups and noted changes in symptoms as they came back in. Through this process and a later blood test, we were able to identify allergies to dairy, gluten, pepper, and yeast. All things which mirror symptoms of Fibro!
A year into my lifestyle changes, acupuncture, and talking therapies, I am prescription and drug-free and have been since September 2019. I am not yet a work fit but am studying with the open uni, volunteering for a charity, and feeling more hopeful that I will and can work again. The strongest painkiller I take regularly now is paracetamol.
My advice to newly diagnosed and veterans of fibro is to stay curious. There is no cure. There is no ‘one size fits all answer. We are all unique and our bodies change over the years so it’s important to stay open-minded about trying new things along the way. That being said, I highly recommend looking at your diet, cutting out alcohol, caffeine, keeping sugar to a minimum, and seeking natural alternatives. Try gluten and dairy-free alternatives and get a food allergy test done where you can. Our bodies go through so much on a daily basis anyway, so if there is a diet change you can make to help it out, DO IT!
Find a way that works for you to manage stress, mindfulness, movement, talking therapies, etc. Accept and adapt to your condition, insist that others do too! If you’re unable to work right now, it is not the end of you and your passions, find new ones, join support groups, sign up for a distance learning course. I have been overwhelmed by the support and funding received for my OU course! Connect with people online who have the same or similar condition as you but make sure the content you are involved with is productive and constructive. If you have any amount of trauma in your past or present, speak out and seek professional help. It is out there, and you deserve to be heard and heal!
If you’d like to learn more about me you can listen to a podcast I featured on recently.
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