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Rebecca Barnard

2016-10-27 09:56

Becky's Story

I was diagnosed with fibromyalgia in my early twenties by a superb rheumatologist at The University of Manchester, Dr Ian Bruce. I had been experiencing a range of intense symptoms for a few years, including widespread constant pain, awful fatigue, muscle spasms and stiffness, balance problems, heavy periods and sleep issues. Doctors at my local hospital had suspected I was suffering from rheumatoid arthritis but tests ruled this out. It was a frustrating time as I was in a lot of pain every day and my doctors didn't know why. Eventually, I was referred to Dr Bruce and he discovered that I had multiple tender points and after a long, thorough consultation, he diagnosed me with fibromyalgia.

I am nearly 43 years old now and still struggle with fibromyalgia on a daily basis. My illness has got gradually worse over the years and is harder to cope with now as I also have cervical spondylitis in my neck and damage to the lower discs in my back. I get fibromyalgia 'flare ups', periods where my symptoms worsen either for a few days or several weeks or even months. These flare-ups can be brought on by stress, trauma or even a change in the weather. Being in pain 24/7 has a huge impact on my life. It affects my ability to do a lot of activities, for example: I can't walk very far as the pain becomes unbearable, I can't stand for long or sit on an unsuitable chair for too long, and I'm not able to sleep flat in bed, as my back locks and I end up stuck in one position and in excruciating pain. As a result, I sleep in a recliner downstairs, which isn't ideal; I'm hoping my husband and I can get a special bed that reclines on each side. I have problems with balance and my legs can be unpredictable or weak at times, so I use a stick outdoors to prevent falls. I miss out on a lot of family days out but I try to join in where I can. My husband does the active things with our children, from long dog walks to camping holidays - I get upset when I can't join in but they always take lots of photos.

Treatment wise, nothing has really worked long term. I've seen the full collection of experts, from physiotherapists and osteopaths to pain doctors and rheumatologists. I've even tried alternative therapies such as acupuncture, which helped for a short while and then stopped. I think the most helpful treatment for me was hydrotherapy, this was in a special warm pool and was very soothing; the only problem was that the effects didn't last for very long. I do find warmth helpful, especially when there is an area, like my shoulder, that is especially painful; I often use wheat packs and stick on heat pads. I have also tried a Tens Machine but it didn't help. I visited the Pain Clinic numerous times and tried a variety of medication but unfortunately, because I have IBS, many of these disagreed with me. I am, however, now on tapentadol, paracetamol and oral morphine.

I signed up to 'Cloudy with a Chance of Pain' after seeing Dr Will Dixon talking about the project on BBC Breakfast TV. It caught my attention as I often tell friends and family that the weather affects my symptoms. I have noticed for a long time that cold, damp weather makes my pain worse, and I have also noticed that humid, hot weather increases my pain, fatigue and other symptoms. I find humid weather is possibly the worst weather for me, although cold, damp weather is a close second. I think that it's probably the dampness that is key - for some reason, dampness makes me feel like I have daggers in my joints. Not good!

I live on the border between Cheshire and Stoke on Trent. I was a primary school teacher for ten years but had to give this up due to my health. I now try to stay as busy as I can to distract myself from the pain. I go to a friend's art studio three days a week, and I love to write and create artwork. I often have problems gripping things and my hands shake quite often, and so I do jigsaws to try to help maintain my motor skills. My children, aged ten and twelve, keep me very busy and keep me laughing! We also have a loopy and very lovely golden retriever called Fudge; she is an amazing support and seems to know when I'm not coping with the pain, putting her head on my lap so I can be soothed by stroking her.

I have joined the Health Unlocked Cloudy community and my username is Snowball_00.