What it is like to live with Fibromyalgia?

I am a retired Author and Producer of large creative events and most recently a Paper Maker, Sculptor and Workshop Leader. My husband always said that I metamorphosised at various times throughout life. We married very young and have three children and four grandchildren.

I was first diagnosed about six years ago. Gradually as my Fibromyalgia symptoms became worse I have had to learn to give myself permission to simply play with materials in the studio and not feel I have had to achieve anything which I have found extremely difficult and I have been very grateful for friends who have encouraged me through playing with me so that occasionally I can make again. Even if I don’t feel like it, I do recognise that creativity is one of the key healing elements in making one feel more uplifted and human.

I’ve been going to start this article many times but each time I was about to commence the dominant worst characteristics of my Fibromyalgia change, flawing me and causing me to stop and draw upon inner strength to refocus and start writing yet again!

I have not tried to use medical language but leave that for the experts! Also, I’m never very sure on some aspects whether the medication that is helping some of the more serious symptoms are helpful with others but again rely on expert advice.

Of course, all the other symptoms just keep perpetuating and even multiplying at times over the years and sometimes to me even seemingly replicating other diseases but I will come back to these.
Upon reflection over the years I consider the worse aspect living with Fibromyalgia is the aloneness. Nobody actually sits down with you and says “now tells me what is it like living with Fibromyalgia?” Nobody. People will say how are you today? But that is embarrassing. Do you really want to be known as someone who complains all the time? No! So, to inform a little you just mention localised pain and weakness sometimes.

When you have a medical appointment, you pick out the worst aspects at that moment of time and it is those that get treated but I am fortunate and have an excellent medical team who’ve heard them all before and so have an overall picture.

Each day is a challenge and current severe pain areas are in my arms, shoulders, neck and in mostly in the top and back of my head. I also have ongoing very bad pain in my back and hips which is brought on by standing mostly at the kitchen sink after a few seconds, walking or any movement in fact. Pain is extremely unpleasant and can cause a lack of functioning but it is not something I am frightened of and do not therefore retire to my bed. I do get up in the mornings as I believe in moving very strongly and rest between moving. This has been a problem in the past with other extreme health conditions so I try to gage the level sensibly!
At the moment I am not getting the pain in my legs and feet and toes only normal muscular after exercising. Neither in my hands and fingers. My toes have pins and needles. The shooting pains particularly in my breasts and stomach are also not occurring.

Starting at the top of my body sleep has been a very difficult issue and until recently due to medication I’ve only been able to sleep on average about 4 hours a night, now I sleep a little longer. I haven’t been able to cope with the computer for longer than 20 minutes at the most without feeling stressed or having a brain fog. Neither can I cope with flashing lights, bright light or loud noises and can feel dizzy easily. Memory loss is embarrassing to say the least.

I have awful indigestion although I eat little and very slowly and I frequently feel sick. This seems to be felt through heartburn or coughing. I am breathless very easily. I have gradually lost my enjoyment of food.
I feel as if I have a urine infection most of the time which again interrupts the night as I get up between 5 to 7 times a night and can’t go out without stopping frequently. My vagina is so sore and painful and sexual intercourse has been out of the question over the last few years.

My body temperature fluctuates excessively at times and for the first few years I felt hot all the time which was unusual, then this changed (which may have been due to medication I don’t know) to frequent hot flushes even if I want to go to the toilet and always at night time so feeling very menopausal. I have never been a sweaty person but during these very warm times I do sweat and it is quite sticky unlike usual sweat. It can feel as if sweat is trickling down my legs. I can go from very cold to very hot within seconds. Patches of my skin can sometimes feel as if they are burning.

I experience extreme itching all over my body at times and this can for me exceed the pain as it is so tormenting. Other times it just on my head, back areas and leg areas. Also. It can feel quite separately that there are insects crawling under my skin often in my legs. Another sensation is that I have experienced in the past is similar to shingles with similar stripes appearing that can be painful and itchy on my back and under my breasts for a few days.

I also woke up one day with a red rash on one eye which looked as if I’d been punched in the eye preceding a black eye and was told by a friend who is a medical officer to go straight to A&E where they had an Eye Hospital as my sight kept coming and going. They didn’t know what it was but said I should contact them day or night if necessary. It took nearly a week to completely disappear. My eyesight does occasionally waver and my eyes feel dry and itchy all the time.

I also bruise very easily sometimes as red dots which turn blue and other times as a bruise that spreads.

Normal tasks like cleaning one’s teeth proves very painful whatever I try to alleviate backpain and having a bath is no longer a pleasurable experience so I always shower. This again means inwardly priming oneself up because of the effort taken particularly if I wash my hair. Do I try to keep my arms up in the air or do balance them against my body and bend right over which is going to prove the easiest on that particular day? Of course, not all days are this bad.

The frustration of being so weak was where I started and it was some time before diagnoses when I complained about pain too. One still hopes to grow stronger through exercise and it is wonderful to no longer be in a wheelchair thanks to meeting Dr Jenner who promised to get me into a better place which indeed he has and through his advice, medication, physical programme within a year my wheelchair was stored in the attic! Together with my osteopath Victoria Latchem in Dartington, Devon where I live, they are rocks and I look forward to future times of accomplishing the peculiar things on my bucket list!

Each day no matter how I feel I always determine to be:

– up and dressed no later that 9am and try to be earlier than this
– make a list of tasks I want to accomplish even if some go over to the next day
– go for a walk no matter how much pain knowing that gently moving the muscles will help for the next day
– exercise if possible

Strategies are important too like doing the vegetables or similar jobs sitting down at a table or on one’s lap watching the TV to distract from discomfort.

However, with the added stresses of Covid-19 the fight to be positive is more difficult and depression is now an issue which affects me as an artist but also in the home. People are an antidote even if on zoom.

I could not cope without my wonderful husband who does know, asks questions and understand as much as anyone can what it is like to have Fibromyalgia living with me every day although he may dispute this. It is very difficult to see someone you love suffer and get frustrated even if they don’t say anything. I would almost say it is worse for him than me. He became like a carer when I deteriorated and therefore, I would say that if I was on my own further strategies would be necessary.

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