Justine’s Fibromyalgia Diagnosis

Where does your story begin and what were the symptoms that concerned you prompting you to see your GP?

November 2018 – I started suffering with painful shoulders and upper arms which coincided with my right thumb becoming severely arthritic (unable to bend and extremely painful).  I remember mentioning my arms and shoulder issue to my doctor, but he didn’t seem too concerned.  Several blood tests were taken but no problems were identified.

I was still managing my 4-mile run and then in March 2019 I became markedly tired and it suddenly became impossible.  By this time my doctor had retired and I had been seen by a few others.  During April I was attending a First Aid Course and found I was really struggling with the whole process and resulted in taking a few days off work as I was wiped out.

By this time I was prescribed Naproxen for pain, but it was ineffective and I attended physiotherapy, but no actual problems were found.  Polymyalgia was considered and I was prescribed steroids but again they were ineffective.  My doctor and physiotherapist agreed that it was possibly fibromyalgia and in June I was prescribed Gabapentin and was referred to the rheumatology clinic for an appointment in August.

Initially the medication seemed to be helping but I soon found I had to increase the dose quite quickly.  The rheumatology appointment was a case of being told I ticked all the boxes of primary fibromyalgia and there was no need for further appointments.

By mid-September I was completely “spaced-out”, so tired and in pain and was signed off work for two weeks in which time I weaned myself off the Gabapentin.  On my return to work my hours were reduced and my duties altered, and I managed to get through the term and remained quite well.   

Out of 10 being the highest what level of stress and anxiety did this cause you?

I’d give it a score of 8.  It’s only in hindsight that I realise how frightening the process was.  I knew that I wasn’t myself but couldn’t understand what was happening to me.  For a long time I was solely going to work, coming home and resting so that I could get up the next day.

How did your diagnosis impact on family / friends / work / social ?

My whole life seemed to stop!  I went from running three times weekly and playing tennis twice a week, being very active to nothing!  Enjoying coastal walks and gardening suddenly became impossible tasks.  I rely heavily on physical activity to keep me mentally well, so fibromyalgia has had a huge impact on all aspects of my life. My social life was very much tied up with my physical activities and I can at times feel quite isolated / left out from those circles.

What are your main symptoms?

My worst symptom is the acute pain, but fibromyalgia is a condition that changes and it’s unpredictable.  I have difficulty with memory and concentration which has noticeably declined and I have developed sleep problems.  I used to be able to fall asleep with no problem but now I find it difficult to fall asleep and wake every two hours or so and I am learning to accept this rather than let it worry me.

What medication were you prescribed?  Any side effects?

Naproxen, Gabapentin (very woozy and spaced out) and Pregabalin (weight gain). Fluoxetine.  Codeine which I could only take at weekends as it knocked me out too much,  Not very effective for pain relief.

Were you given any information explaining Fibromyalgia Syndrome and / or referred to the NHS Persistent Pain Clinic?

No, I wasn’t given any information.  Fortunately, I’m proactive at managing my own health and despite feeling so awful I was able to do my own research.  I was referred to the Persistent Pain team in September’19 for an appointment in February’20.  I was hanging a lot on this appointment but due to the time spent waiting so long I had to put my own plan into place.  Now I feel that possibly there maybe nothing constructive to be offered from the Pain Clinic.

To this present day, has your fibromyalgia diagnosis caused you to make significant changes in your life and how has this affected you and those close to you?

I’ve had to slow down markedly and as I live alone and have no dependents I’ve always been able to suit myself.  Now I have to consider carefully how I choose my activities and can no longer enjoy my runs or playing tennis.  I’ve also had to reduce my working hours and duties.

What steps have you taken to cope with these changes in your life?

I’ve recently undergone Talk Therapy, referred by my doctor.  I am much more kind to myself these days which is a work in progress and learning to link my behaviours and moods.

What changes have you had to make to your diet and lifestyle?

I try to eat plant-based foods as much as possible and I’ve been following the “How not to Die” and the Daily Dozen recipes.  I really don’t want to eat meat, fish or even eggs these days but this wasn’t a deliberate decision.  I don’t drink caffeine at work any longer and take a flask of ginger and turmeric tea.  I’m certain this has made a difference to my general health.

How do you do to manage your symptoms and flare-ups?

I now practice restorative yoga morning and night and schedule in regular rest breaks into my day.  I try to walk a couple of miles every day which helps me move through the pain.  I’ve tried Tai Chi and I use a shakti mat for relaxation and make use of apps like Headspace and Calm and meditation is very helpful.

Do you take supplements or use natural remedies?

I use CBD oil three times daily.

What type of support do you have?

Some friends are supportive whilst others are unable to understand what I am going through.  A colleague and friend of mine has been a long-term sufferer of fibromyalgia and we support each other, meet up socially and always say that we’re allowed to have a moan to each other.  I have great confidence in my doctor and I’m a member of the Fibro Clinic South West and attend their workshops.  Support is available to me on the Fibro Tool Kit online group.

Have you noticed changes in your sensitivity to environmental or emotional triggers such as noise, light, smell, stress, or certain foods and chemicals?

Yes, I avoid very loud, noisy and crowded environments.  Some clothing is very uncomfortable, such as straps on bras.  I have to use insoles in my shoes as my feet are very sensitive and I find that sitting on hard stools or chairs at work is becoming problematic for me.

Do you feel that in general people understand the daily challenges you have to face living with fibromyalgia or judge you?

No.  I don’t feel people understand and some don’t even try to. I’ve always walked away from situations where I feel I’m being judged but more recently I think I would speak out for myself.

What is the worst aspect of living with fibromyalgia?

I think the worst thing for me is trying to accept that this condition isn’t going away and the feeling of having lost myself and the person I used to be.

Has having fibromyalgia made you more mind – body aware, giving you a deeper connection with your body and emotional state?  Would you describe this as a good or a bad thing?

Definitely.  I know that my behaviours link to my moods and feelings, so I practice checking in with myself regularly so that I don’t start deteriorating without realising.

Do you have any Top Tips you would like to share?

Yoga and Tai Chi with breathing exercise and meditation have all helped me to manage the pain.  If you are recently diagnosed it’s important to find support from others who share similar challenges and where you can talk freely, share ideas and information without feeling dismissed or judged.

Thank you to Justine for sharing her fibromyalgia journey and how she has managed to cope.

If you would like to leave a comment or to share your story, we would love to hear from you.  

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