By Janette Ward and Sophia
Hello folks, this month I will be writing about fibromyalgia… what it is and Sophia’s story of how she lives with it.
Fibromyalgia Action UK describe it as a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often from head to toe and it may be worse at some times than others.
The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and suddenly people feel drained of all energy – as if someone just “pulled the plug”.
Fibromyalgia is a common illness. It is as common as rheumatoid arthritis and can be even more painful. People with mild to moderate cases of fibromyalgia are usually able to a near live a normal life, given the appropriate treatment.
If symptoms are severe, however, people may not be able to hold down a job or enjoy much of a social life. The name fibromyalgia is made up from “fibro” for fibrous tissues such as tendons and ligaments, “my” indicating muscles and “algia” meaning pain.
The actual cause of fibromyalgia has not yet been found but it often develops after some sort of trauma that acts as a trigger, such as a fall or car accident, a viral infection, childbirth, an operation or an emotional or stressful event.
The treatment aims to reduce pain and improve sleep. It is the symptoms that are being treated rather than the condition itself. Fibromyalgia Action UK say that the condition needs to be managed with lots of self-care which includes, exercise, hot baths, a healthy balanced diet that includes protein, vitamins and minerals and lots of rest.
Sophia was diagnosed with fibromyalgia in 2015 after she had been experiencing the symptoms for 2 years. It coincided with two years of relentless and intolerable stress Sophia had experienced as a result of being bullied at work. The stress from the bullying affected every area of Sophia’s life, she slept badly with recurrent nightmares, she either didn’t eat or ate too much of the wrong foods. It affected her relationships with family, friends and colleagues, she went from being a confident, friendly, competent, energetic, bubbly and popular woman to being anxious, fearful, feeling stupid and incompetent, not able to speak up for herself.
Sophia describes staying in the job despite Occupational Health advise that she leave the bullying environment because she loved the work and she didn’t see why she should be the one to leave and she kept hoping things would get better. She raised her concerns with Human Resources, in the hope that they would be able to stop the bullying, however she found herself having to go through a long grievances process which left her with further debilitating symptoms. The whole process had a devastating impact on her mental and physical health, resulting in her going off sick. It took 6 months before she was able to return to work.
Sophia believes it was the two years of intolerable stress caused by the bullying that triggered the fibromyalgia. She continues to work with reasonable adjustments and the bullies are no longer there. Working is essential for Sophia’s mental health, making a positive difference is so important to her, it gives her purpose, provides a structure for her day and bolsters her confidence and self-esteem. Working does mean that Sophia is unable to do other physical tasks, such as cooking or any household tasks. Her husband whom she describes as supportive, patient, caring, loving and understanding does the cooking and all the household tasks. He helps her with all the activities of daily living including managing her medication. She has needed to educate her husband and children about the condition and how it affects her because like most other people experiencing it, it is not always possible to tell by looking at the person that they have the condition.
Sophia finds being with her extended family very difficult. She feels harshly judged by them. Some say that she is making it up, that she is lazy and others create a drama around it. Most of them have distanced themselves from her, some treat like she has a disease they might catch, whilst others pity her and appear to be waiting for her to die. This has added to the social anxiety Sophia experiences. She has isolated herself from social gatherings due to the pain she is in but also because of other people’s lack of understanding and consideration.
Aside from the daily continuous pain and fatigue, Sophia finds fibro-fog distressing, the common symptoms are finding it difficult to concentrate, find words, hold conversations, feel alert or remember things. This means that she needs to risk assess activities never being able to go ahead and say yes which is frustrating and life limiting.
Sophia talks with sadness about how she misses the life she used to lead, she would dearly love to be more involved with her grandchildren she describes them as the light in her darkness, that they give her hope.
Being a sensitive and caring woman, a very challenging symptom is when she gets emotional or tearful as it increases her pain and the effects can last up to a week, so Sophia is always trying to prepare for situations in the hope that she can deal with them without getting emotional and this is exhausting.
Sophia’s GP referred her for CBT which was helpful and prescribed anti-depressants and painkillers but she is resistant to taking the very powerful painkillers because of the side effects and the fear of addiction. She has had counselling and been a part of a pain managements group and recently been referred for hydro-therapy.
Things that help Sophia and take a bit of the edge off the pain are a very gentle massage with essential oils, using lavender oil on her pillow, a warm bath or shower, listening to a relaxation CD for 30 minutes and trying to pace herself.
There is no medication Sophia has found that completely takes the pain away. Some medications ease the pain very slightly but have other not so nice side effects. This leaves Sophia struggling with daily debilitating pain. She lives in hope for a cure or a magic pill to take this pain away.
Sophia hopes that by sharing her story she can help other people recognise the signs and symptoms of bullying and any external stresses they may have so that they can reach out for support a lot sooner and reduce the stress in their life. Sophia wants to help prevent more people ending up with Fibromyalgia. Her advice to everyone is to live a healthy, balanced life and reduce any harmful stress in their life.
She describes talking to other fibromyalgia sufferers as hugely helpful either online or in a support group.
Champions Show The Way in Bradford offer a Fibromyalgia Peer Support Group 10.30am to 12.30pm every Friday 10.30am to 12.30pm at the Deaf Centre BD1 3RP for further details ring 01274 321911 or email email@example.com
For further information please contact www.fmauk.org or ukfibromyalgia.com or www.nhs.uk>Health>Fibromyalgia
I would like to sincerely thank Sophia for having the courage, integrity and compassion to share her experiences with self-deprecating honesty in order to help other people understand what it is like to live with fibromyalgia.