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Invisible Warrior

Living with Fibromyalgia

What is Fibromyalgia?

Fibromyalgia is a condition which causes constant pain in those diagnosed, lethargy, loss of memory, and many other symptoms (some say 50 varying symptoms other say there are more) are included as Fibromyalgia.

What is known about FM (as it is commonly abbreviated to) is there are at least 2% of the United States population who have been diagnosed and at least 3-6% of the world’s population are FM Warriors.

The term FM Warrior is often used to describe a person who has been diagnosed with this condition as that is what we are. We fight daily against the constant aches and pains, itchiness, tiredness and lack of sleep, memory loss, and disorientation are also found to be part of this illness.

Although FM is more commonly found in women between 10-25% of those diagnosed are men, the symptoms usually start at any point from being 20yrs to 55yrs old and it is thought it could be triggered by trauma in the patient’s earlier life.

Those who are cursed with this illness often look healthy in appearance however, lying beneath the forced exterior a number of issues are causing them severe pain, they tend to hide how they are feeling due to misunderstanding and disbelief of others.

FM is not always the only cause of pain as there are sometimes other conditions and illnesses which come hand in hand such as irritable bowel syndrome, arthritis, hypothyroidism, sleep apnoea, ankylosing spondylitis, and lupus.

As an FM Warrior myself, I can only really discuss how this illness affects me as it affects each person in different ways, although I am certain many others, especially the male population of Warriors will find comfort or perhaps a way of dealing with what we go through daily from this information.

The Pain

Much of the aches and pains I feel are focused around my neck, shoulders, hips, legs and hands, you may think “but that’s more or less all of you” and you would be correct. The pain is not always in one place. Sometimes it will shift from my right shoulder to my left knee or it may cause stiffness in my hips and cause my hands to lock up.

What I will say about the pain I feel from FM is that it is always there in one place or another the only respite is when I can sleep or I also find the warmth of the sun works wonders but, living in the UK those days are few and far between.

Cold and rain make the pains worse, as does any kind of stress. I try to live a stress free life (not always easy with other people around) and tend not to worry about things I cannot change. Of course tackling problems and dealing with them is also required but this too can be done stress free.

My Symptoms

The following is a list of the symptoms and areas which I feel the pain, this will include the other health problems which may or may not be related to FM.

  1. Neck pain
  2. Itching all over
  3. Hand cramps
  4. Shoulder pains
  5. Knee
  6. Chest
  7. Tiredness
  8. Unable to sleep
  9. Memory and concentration issues (also known as Fibro Fog)
  10. Feet
  11. Hips
  12. Osteoarthritis
  13. Scoliosis of the spine
  14. I.B.S (Irritable Bowel Syndrome)
  15. Anxiety
  16. Depression
  17. Suicidal thoughts
  18. Balance
  19. Loss of friends and support
  20. Housebound
  21. R.L.S. (Restless Leg Syndrome)
  22. Eyesight
  23. Headaches
  24. Aversion to noise
  25. Cramps
  26. Feeling too cold/warm when others don’t

These are the main issues I personally have, other sufferers may have similar or completely different symptoms and issues to contend with, and I deal with each of these in my own way.

Fighting the Symptoms

The body aches and pains can sometimes be kept under control using the right combination of pharmaceutical drugs, although the side effects of some of these can outweigh the good they do. In the USA, marijuana is used as an effective treatment to aid in controlling the pain symptoms and it is known that certain strains of this drug do help, this is still illegal to use in the United Kingdom.

Some of the drugs you may be prescribed if and when you can find a Doctor who will help (as this can also be an issue) are as follows; please take into consideration these may vary depending on where you live in the world.

  • Antidepressants and muscle relaxants
  • Tricyclic medications such as Amitriptyline, Cyclobenzaprine and Nortriptyline
  • Duloxetine and Milnacipran
  • A few anti-seizure medications such as Gabapentin and Pregabalin

Some exercise can help also such as swimming (if you can swim). I personally enjoy metal detecting which consists of slow walking short distances and minimal shallow digging (usually the latter is done by a friend with me) which I try to do when I am able, although that isn’t anywhere near as often as I would love to be able to do it.

I find on my worst days I have to use a walking stick to get around my small home, my balance becomes unstable and it has been known for my legs to give way or for me to stumble and fall over.

On these days I am unable to do anything at all and spend them resting, most days cleaning is almost impossible as is preparing a proper meal I struggle with being able to take out my rubbish, do simple tasks like washing up, bathing, and washing my clothes at times it becomes unbearable.

These are days the worst thoughts come to mind. I know I am not the only person to ever think the kind of blackness which runs through my mind yet, I will always find a light to bring me back from this unimaginable demise.

Family, friends, those who are left with me now are one of the main lights in my life and the thought of what it would do to them always brings me back, we all have a light somewhere and this is what will keep your mind strong.

Being Diagnosed

I was 38 years old when I first really realized I had changed. I say changed because before this, I was a very active person. Many years of my life were spent riding (falling off) motorcycles, hitch hiking around the United Kingdom, camping under the stars, and busking in the cities.

Although I always had a home base, flat, or bedsit to come home to (most of the time) I spent more time outdoors than most could imagine; then came the lethargy, I began to feel tired more each day, going out felt more like a chore. I found myself making excuses not to go to friend’s parties and BBQs.

For four years, I could not understand what was happening to me. Throughout my life I had suffered aches and pains but, when I was young this was brushed off as growing pains. The Scoliosis was discovered when I was around 23 and, by then, not much could be done about the curvature of my spine as it was deemed to be not too severe at the time. This and my active lifestyle may have contributed to the FM but, I cannot say for sure.

I eventually found a doctor who was a specialist in the subject and he diagnosed me with FM in 2013. I was devastated by what I read about it online. People are known to lose their memory enough not to recognise their own spouse or child. Constant never ending pain and, the sleepless nights, the latter I was used to from the travelling but, the whole thing was frightening.

I felt like my life was over.

For the first year after being diagnosed I sank into depression, I constantly bombarded people with how I was feeling whenever they asked if I was okay or how I was doing, I left Facebook statuses about my life being terrible and I felt so sorry for myself and loathing for what was becoming of me.

This proved to be too much for a lot of people and I can understand now why, no one wants to know the people they care about are in pain, and no one wants to hear about it all the time, I was lost in a haze of hatred for FM and pity for myself.

My flat which was once a bustle with my friends and music jams began to quiet. I found I was being invited less and less to events and parties. Much of this was my own fault as I had being pushing people away without realizing I was doing it.

This isn’t to say that some people didn’t deserve to be pushed away. There are those, who no matter what you say. How much you show them proof will not believe a word you say. These are usually the kind of people who think life is all about hard manual labour and, if you’re not doing that then you’re a lazy scrounger. That isn’t to tar every hard worker with the same brush but, in my experience it is these types who find it difficult to understand FM.

We have all come across this character. They could be male or female. A friend or family member but, because they do not understand FM, they dismiss it as it cannot be seen. They see those with it as trying to “cop out” of the rat race.

It is always better to cut these people out of your life (if that is possible). I understand sometimes this person may be a parent, spouse, or child and in these circumstances educating them is the only way to get them to understand.

It took me a year to come to terms with having Fibro. I seemed to lose many friends in this time but, I have since realized that the ones who matter are still here even if I don’t see them often. Some I see regularly and, they are a great help to me.

Acceptance

Accepting FM is one of the most difficult things you will have to endure in your life. Coming to terms with not being able to do all the things you used to and other people take for granted.

It is about discovering what you CAN do not what you are unable to. This isn’t to say try skydiving or snowboarding as obviously anything too strenuous is out of the question. Even a short walk is impossible to many with FM.

For me I began by tapping into my creative side. I have to admit this was quite easy for me, as I have always been a creative and artistic person and I dabble in many mediums from painting with watercolours to writing/producing my own songs and playing guitar as well as writing novels and poetry.

Painting was a good way to lose myself and distract myself from the pain. This was until my hands began to lock up in cramps and holding a paint brush became more difficult. I still attempt to paint but my artwork is not what it used to be.

It is the same with music. I began playing guitar at 22 and I played daily for several hours whereas now, I am only able to play my guitar for a short while before I am either too tired or in too much pain to continue but still I try and I am still learning new things 23 years later.

Writing is my main love and I can spend a lot of my time researching for my stories. This fits in well with FM as I am able to do this when I cannot sleep or, on the days I am unable to get out anywhere (which are more often than not).

Not everyone is creative but there are other ways to help keep your mind occupied when Fibro Fog isn’t an issue, many warriors (being female) take up knitting or crochet. Photography is also another hobby which is both therapeutic and creatively gratifying.

In 2010 I ran a photography business based primarily around music, this involved me travelling to gigs to photograph them playing, taking portfolio shots of the bands for their press packs, and even providing one or two EP/DVD cover art photographs.

In 2013 just before I was diagnosed with FM the business folded, I was devastated as I had put my heart and soul into trying to make the business work but between my health, the competition and the lack of musicians wanting to pay it was no longer feasible to run as a business.

I do still take photographs when I can with the use of a camera, a light tripod and just two lenses this makes the equipment light to carry and you can get some amazing shots with just the minimal amount of effort.

We are not helpless as FM Warriors; we can fight against this illness for a life even if it isn’t the life we once knew.

House Bound

Many days are spent either, in bed or, in a place we find most comfortable. I like to sit in an office chair with lumbar support. I find I cannot lie in bed, sit on a sofa or armchair for long without feeling uncomfortable. Even sitting in the chair I have, I sometimes find I have to pull myself up and lean against it for a while before I can sit comfortable again.

I do not own a television as I believe it rots the brain (personal opinion), however, I do enjoy watching movies and reading books. Both of these activities can sometimes be a struggle, keeping comfortable throughout a film, holding a book or turning the pages, focusing on the words and keeping track of what is going on.

My main mode of transport is an electric bike. Unlike many warriors, I am still able to walk short distances and pedal the bike which is driven by an electric power motor. It can be used as power assist or throttle only which helps a great deal. Others may have an electric mobility scooter or car and walking sticks.

These aids are brilliant for getting out of the house but, there are some of us who do not have these luxuries. Recently my electric bike broke and I have been unable to afford to fix it. For the last 3 or 4 months I have been stuck indoors, having to force and push myself beyond the pain just to get to the shop for essentials.

Being house bound can drive a person beyond crazy but, to deal with this I use the above methods along with other forms of entertainment, I am also lucky I have a few very good friends who visit regularly and save me struggling to the shop myself.

I know that many with this illness have lost most, if not all their friends through being ill and, to you I say, there are people out there who will believe you, there are those who care enough to see the pain you are in and will extend a hand.

I cannot pretend to understand completely what each person with FM goes through on a daily basis but we are all Warriors fighting for the same cause.

If you find yourself house bound through this, do not despair, there are support groups on Facebook which I have found to be fantastic for helping to understand FM. If you can relate to others and learn to understand how they feel and what they are going through, it makes it easier to understand what is going on with yourself.

Fibro Fog

Fibro Fog is the term used to describe the feeling we get when we forget something, get confused, use the wrong words or find ourselves not recognising an area we know well.

This can be quite dangerous in the wrong circumstances. I have had many instances of Fibro Fog; some funny, others quite scary, from putting sugar into the coffee jar or milk in the cupboard, forgetting to turn the kettle on or fill it, melting the cat dish on the cooker, forgetting the chip pan was on the cooker, forgetting sausages on the George Foreman grill overnight.

Leaving my door unlocked at night or going out and forgetting to lock it, being disorientated when out on my E-bike and, finding myself lost despite having been brought up in the area. It causes anxiety which is only quelled if I have someone else with me.

It is not a pleasant thing to deal with and it is one of the things I find the most frustrating especially as a writer; there is nothing worse than knowing what you want to say and being unable to find the correct words or saying one thing and meaning the opposite. It can be embarrassing and cause arguments with people misunderstanding what is being said.

Imagine you close your eyes and when you open them you are surrounded by people and, a place you do not recognise even though you are sat at home surrounded by people you know. It is as simple as this although, this is a more severe case I refer to.

There is no cure for FM or Fibro Fog and it may or may not become worse as you age. Whether this is down to the FM or other entities I cannot say, as I am no medical professional and can only go by my own symptoms and what I see with others in the groups online.

The worst I get this at the moment is as described above and, luckily it has not caused me or my property any serious damage. It can also mean being forgetful of important things like paying bills on time, ordering enough food (if you shop online), keeping appointments with the doctor, hospital, or worse, the Social Security office.

Keeping a calendar nearby with these things marked on it helps as does using reminders on a mobile phone. Stick-it notepads are also a good way of reminding yourself of the important things or getting a friend or family member to remind you also.

This may work if, like me, you live alone and have a small or no support network to rely on.

Anxiety and Depression

Anxiety and depression usually go together. The depression brought on by the feelings of worthlessness and being useless, the loss of friends or loved ones, the constant pain and being unable to sleep.

This can lead to thoughts of suicide, questioning if the world would be a better place without you in it. The answer to this is always NO! The world would not be a better place without you.

Humanity will always have those with evil intent and the world will turn whoever is in it, taking your own life is not an option. I know it feels as though this illness has taken it already.

Medical professionals will prescribe anti-depressants to help combat the terrible thoughts, being among woodland or by a river helps too (yes I know quite a hippy thing to say) it is thought that nature is a natural healer and I will confess that I feel more at peace with myself in this kind of environment, don’t knock it until you have tried it.

I am one of these FM Warriors who combats anxiety, I feel panicky, my palms become sweaty, and I begin to panic when I am forced into a situation where there are many people around, where this anxiety stems from I do not know as I was always a people person up until becoming ill.

Even using public transport is a battle which I cannot win without having someone with me to keep my mind off the fact I’m surrounded by people, it's feeling that they are all silently judging me, judging how I dress, look, the way I limp or sometimes shuffle when I walk.

It's wondering if I will be judged for going out on my bike or metal detecting, people have said to me, “if you can do that you can work,” and I agree I could work and I do work hard with my writing, I couldn’t do physical labour or work fixed hours due to never knowing how I am going to feel from one minute to the next, such is the life of an FM Warrior.

Many who have this illness cannot do any kind of work and I am thankful I am able to do what I can until the time comes that it is no longer possible for me to do it, I try and live a life of some kind but like many others I am judged constantly which causes anxiety.

I find it difficult to maintain eye contact with others, I stumble over words I want to say and feel the frustrations of not being able to convey my thoughts and feelings across in speech, this can lead to me feeling agitated and sometimes dizzy.

These feelings cause me to avoid public places if I can and when I can get out I am more likely to be found with a single friend in a field or by a river than I am in town shopping or at the pub.

Socializing has become a thing of the past unless I get visitors, as mentioned before FM is a reason many of us have few or no friends left, it is why we don’t get invited out anymore, people get fed up of asking only for us to reply with “I’m not feeling up to it” or “Maybe.” They see it as excuses and us being antisocial.

The Spoon Theory

The spoon theory is a personal story written by Christine Miserandino who suffers from Lupus an illness which sometimes is associated with FM and has very similar symptoms.

I will not type out her story as this would be a breach of copyright (the original can be found online at https://butyoudontlooksick.com) but I will attempt to give a brief outline of what it means.

Imagine a handful of spoons, say 12 teaspoons, each one of the spoons represents a task you undertake throughout a day include the fun things you do as well as the menial ones such as getting out of bed = 1 spoon, getting dressed = 1 spoon and so on.

This goes on with every task any able bodied person would take for granted including bathing, washing, preparing a meal, cooking the meal, washing up, meeting friends for a drink etc. Each task you remove one of the spoons from your hand until they are all gone.

An able bodied person starts out the day with unlimited possibilities and the energy to do what they wish, whereas someone with FM has only so many spoons to use and we must be careful what we choose to do with each spoon.

The tasks undertaken throughout the day I refer to are often things we take for granted in life like, being able to walk to the shop without stopping for a rest or suffering for days after, choosing between going out and tidying up, taking a bath or just getting a wash or into a shower.

If you really wish to understand the life of a Fibro Warrior I really do recommend reading the original version as it explains it much better than I can in this chapter of my book.

Tender Points

Fibromyalgia is often referred to as an invisible illness because much of what goes on is underneath our skin and even baffles a lot of medical professionals. It cannot be seen by X-ray or other scans and the only real tests available involve discovering points on the body where the pains react.

There are 18 main tender body points which determine the outcome and these are usually in pairs.

The neck is one of the most common and although neck pain can be caused by other contributing factors such as arthritis, sleeping uncomfortably and straining the neck the base and sides of this area are often very sensitive to pain and stiffness from FM.

Medical professionals will also look at the front of the neck for pain either side of the Larynx which is usually found in conjunction with the rear neck problems.

Yes, Fibromyalgia is literally a pain in the neck.

The crease of the elbows and forearms can be sensitive to the touch however this too could be confused with tendonitis or RSI (repetitive strain injury). For me the pain is in the base of my elbows where I suffer from hard skin also.

Feeling aches and pains around your behind and hips is common in those with osteoarthritis like myself. The pain differs from that of fibro as Arthritis attacks the joints whereas FM causes tender points near where your backside muscles curve and meet up with your thighs.

The base of the spine just above the behind is also a tender point; this tends to be either side of your spine at the lowest points of your back.

Knees are one of the lower tender points. Usually the back of them feels very painful to the touch.

At the point where tendons and muscles meet in your upper back, there is a pair of tender points close to the shoulder blades.

This is also one of the major points of pain for myself and should not be confused with similar pains such as a frozen shoulder or Arthritis.

As is to be expected with the upper body pain, the shoulders are also a target between the base of the neck and the edge of the shoulder blade.

Chest pains can also be related and some people with FM will have tender points either side of the Sternum which is just below the collarbone. Any kind of chest pains should be seen to by a medical professional immediately as it may not be related to the FM and, may be something much more serious.

Invisible Warriors

In conclusion, living with Fibromyalgia is not an easy thing to contend with and dealing with this fact is often the biggest struggle next to dealing with the pain.

It is difficult to keep a positive mindset when your whole world seems to be falling apart along with your body but, it can be done.

I often have days when I feel so low and worthless to this world, whether this is because of the FM or not I cannot say as I have endured quite a full yet difficult life so far, full of many heartaches and losses.

Trying to educate those around us about how FM affects our lives is also a continuous uphill battle. Our cries are ignored by doctors and the government. There are many people with FM who are told by these organisations that they are fit to work purely on the basis of how their external is presented.

Even those we thought were closest to us seem to find it hard to comprehend and grasp what is happening and how FM changes a person. They take offence when you refuse to do something you were once able to but, can no longer do and do not take into consideration what the illness is doing to your body because they cannot see it.

Fibromyalgia has many voices pushing to be heard. Some famous people are said to be FM warriors and advocates for the promotion of awareness about this horrible condition. I am hoping this book will also serve as a voice for those who cannot speak up for themselves or find the correct words to explain how they feel and how they are affected by FM.

People may look through you as though you are as invisible as your illness and they do not see the fight you put up daily just to live some kind of normal, or as close to, life.

There is so much more I could write about FM and how it affects a person’s life but it would make more sense to describe a typical day in my life as a warrior.

Waking up, I feel drained and it always takes me a while to focus my eyes and brain before I can do much of anything. I force myself out of bed and struggle with my clothes. It takes me a while as I stumble with buttons on a shirt or the zip on my jeans.

As I do a lot of work on my computer I will turn this on and then visit the bathroom for a wash and to do the usual morning business. I make a cup of coffee on my return to the living room.

By this time I feel more drained and the pains have begun. Depending on where the FM is attacking I will rest until I feel that the pain is bearable.

On most days this does not happen and I will spend the day doing nothing more than resting. It is good to take time out for you and to rest when needed.

It is usually mid-afternoon to early evening when my mind is fully functioning. The fibro fog can strike at any given time still, by this time I am feeling hungry and will find something simple to eat. I tend to eat one meal a day as I cannot afford more than this on the amount I get from the government and as cooking and preparing fresh food is not something I am able to do safely the microwave or slow cooker are usually my main tools for cooking.

Sometimes I will use a chip pan (wok filled with oil) but tend to only use this now when I have someone with me since I almost burned down the flat a few times by leaving it on the ring and forgetting to turn off the cooker.

Once I have made and eaten my food the tiredness will kick in. I find myself dropping to sleep for a short while, between half an hour and 2 hrs usually and when I awake I feel worse than I did before.

Now it is getting on toward 8-9pm the pain is still lingering, nagging at me like some old fish wife. I try to ignore it or use medication to keep it at bay (I have not found a combination of drugs which work for me yet) and then I will begin my work.

I will spend the next hours into the early morning researching and/or writing in between many breaks. I have to stop every 20 mins or less to give my fingers time to relax, and I forget to eat at times or cannot remember if I have eaten or drank anything that particular day.

Eventually I become so tired I can barely keep my eyes open and so I will stumble off to bed in the hope sleep will come quickly but, this is not always the case and I lay staring at the ceiling begging for sleep to come and take the pain away.

This all sounds very bleak and I won’t sugar coat things it is bleak in every sense of the word but, this is not every day. These are my worst days. Sometimes I get a rare day where I have no pain at all. These I call my good days and despite them being few and far between when I do have these I will push myself to do as much as I can and then pay the price over the next few days with more pain.

Understanding and accepting FM is one of the biggest challenges to overcome but, once you understand what you are able to do and when you are able to do it, once you begin to take care of yourself and learn not to rely on others unless you have no other choice, only then can you begin to live life as a Fibro warrior. Life can be enjoyed to an extent we live for the good days and keep those days for ourselves in a selfish kind of way from an outsider point of view.

To be able to go out and do the things I used to do is nothing but a memory. I am lucky in the fact I have led a fulfilling life. I know that others aren’t so lucky to have experienced the things that I have throughout the years and I am thankful every day for those years of travel and educating myself.

I will keep fighting this illness until I can fight no more this is my way; this is the invisible warrior's way.

Phill Ross
Phill Ross

I have been writing for 35 years starting out with poetry then moved on to song lyrics and music/band reviews,I now write mostly historical fiction and I am  currently in the process of writing my 4th novel. 

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