What do you say to someone with #Fibromyalgia?…..

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One huge difficulty of living with #fibromyalgia is it’s an #invisible illness; others assume you are well because there’s no physical evidence of being ill.

In my personal struggle with fibromyalgia this single fact has caused me the most stress over the last 15 years.

You may ask, if you know someone or meet someone with fibromyalgia. What should you say?

Show them compassion and listen to them. Just taking the time to talk about it in a non judgmental way will help.

Let them know you want to help them if they need it.

It’s difficult to ask for help when you are struggling.

Give an open invitation to join in or not if it’s a bad day.

Not feeling under pressure to attend, as symptoms come and go without any warning. Being included is important and can help to distract the mind from pain.

Try to avoid this….

I have Fibromyalgia.

When I meet people, l explain this

They think it’s a fake illness,

Or I’m lying,

because:

I appear normal

They say,

You don’t look ill’

I’ll reply,

You wouldn’t be able to see anything…

It’s an invisible illness,

It doesn’t make me grow two heads 👥

It’s not a disease that turns my head bright purple 👿

Or make my eyeballs enlarge to the size of plates 🔘

As ridiculous as these examples are….

I ask

Would you believe me then?…

And

What don’t you believe?…

Why do I have to constantly prove the validity of my illness

with cross questioning?

Such as…

Perhaps it’s because you are stressed?….

It’s all in your head….

You’re imagining it….

It can’t be as bad as you describe….

All of the above questions are not helpful;

I thought you had more intelligence than that.

So, What is fibromyalgia?

Briefly, it affects the skeletal muscles throughout the body, causing varying degrees of pain.

The pain ranges in severity from day to day and it is affected by temperature,

stress

and the amount of physical activity carried out.

Fibromyalgia sufferers commonly experience a range of different types of pain.

The pain can range from a sharp stabbing pain,

an ache

and a burning pain.

Other symptoms that can be experienced are

fatigue,

poor sleep quality,

stiffness,

IBS,

headaches,

cognitive problems

“Fibro fog”,

depression,

dizziness,

anxiety

and painful periods.

The NHS description of fibromyalgia gives more information about the condition.

If you have just been diagnosed and are trying to find links to support groups and the online community. Have a look at the organisations below and also Facebook groups.

UK Fibromyalgia is a brilliant site that covers a wide range of information about fibromyalgia.

Also

Fibromyalgia Association  is a registered charity that provides information and help to sufferers.

Mobility Secrets with Fibromyalgia

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It’s really important to keep as healthy as possible, as your level of stamina fluctuates so much.

When you have Fibromyalgia it is a daunting prospect, keeping fit. Particularly starting out for the first time, with a new exercise.

On a visit to my Physiotherapist recently I mentioned I go walking regularly. She said doing moderate exercise can build up strength and help with mobility.

After I was was diagnosed with Fibromyalgia in 2004, I found that exercise helped me a lot to keep a reasonable level of mobility. But I struggled to find things I could do. 

I have made a list of everything that has helped me that you could try. If you’re starting out try hydrotherapy first and then some gentle flexibility exercises.

Hydrotherapy

I found gentle exercise in a warm water pool can help. The water supports your body and has less impact on muscles and joints.

Research has shown that lying in warm water helps the body to relax and lowers pain perception.

A therapist that specialises in hydrotherapy or a qualified physiotherapist that has a good understanding of fibromyalgia, can help you to work out some exercises.

Your local sports centre or gym may have these facilities and let you have a couple of trial sessions.

Sitting Exercises

If you have limited mobility, sitting exercises could be a better option than other ways of exercise.

The NHS website has sitting exercises along with flexibility exercises that might be worth trying.

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Pilates

Pilates strengthens the body as a whole, the main aim is to improve core strength. Regular sessions can help to reduce the risk of injury by increasing flexibility.

I  developed my own tailored exercise routine, by trying out different exercises, from visits to a physiotherapy practitioner.

If you go for physio ask the practitioner for advice and help about what exercises are best for you.

I practice these regularly once a day, for about ten minutes in total. Although, I had to work up to doing this amount gradually at first.

Walking

I found walking to be the most accessible and best for my circumstances.  Walking can help to boost your energy levels and enjoy nature.

If you suffer from low mood, walking on a regular basis is a good non medical therapy, to help feel more positive.

If you are on a low-income, it’s no problem to try out as there is no sign up charges.

If you are new to walking it is best to start with 5 to 10 minutes at first and gradually increase this as your body gets used to the exercise

You will need to try out a pattern that suits you.

When you first start you may need to get some comfortable shoes and wrap up well with thermal layers on cold days.

Have a look at my post on walking  for more tips.

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The NHS live well  website has a lot of really useful tips to get you active.

I hope this post has helped to give you ideas to improve mobility for Fibromyalgia. My goal is as always to help others with Fibromyalgia and similar invisible illness.

 

Your working, with fibromyalgia?

Yes

I’ve had fibromyalgia since 2004 and have kept working.

How?

Fibromyalgia is not a degenerative disease; studies have shown, for most sufferers it will stay the same or improve. Knowing this fact can help to give you a positive outlook on your future. Perhaps working towards small achievable goals to improve your health.

My story 

When I was first diagnosed and before this.  I felt tired, fatigued and had pain in my body for months that just got worse. Nothing I did seemed to help. To some extent it was a relief to find out what was wrong.  I had managed to keep working and had odd days off.  These days stretched into longer periods of time off. 

After the fibromyalgia diagnosis, I slowly started to learn, how to manage my symptoms on a daily basis. Finding out my limitations and how much I could do without making my symptoms worse or triggering a flare up took time to find out. I found stress played a big part in making symptoms worse. Making sure I took adequate rest breaks during the day was essential. 

At some point during these initial first weeks you will want to consider what changes you need to make in your life to help manage fibromyalgia symptoms. One of them may be to re-evaluate your work choices. Perhaps looking at alternative jobs after doing thorough research.

Thinking about what would help you do your existing job and talking to your employer is worth considering. Beforehand gather together evidence to support your diagnosis such as doctors letters. Get the support of your superior and other more senior staff.  Explain what your symptoms are and how they affect you. Perhaps taking along a diary of symptoms, would be easier to illustrate how to adapt your job. Approach this in a positive way showing you can be flexible.

If you are newly diagnosed, your first step could be to educate others working with you, what fibromyalgia is. Your relationship with colleagues is important when your working, if they have a understanding of your condition it will help you feel more confident about work.

Things that could help you……

If you live in the UK have a look at the following information.

If your looking for a job, finding work with an employer in the UK who is disability confident can make a difference. Depending on what they have signed up to they are encouraged to recruit new staff and retain existing employees who would be defined under the equality act 2010 as having a disability.

The equality act 2010 states that all employers in the UK must make reasonable adjustments  for people with disabilities, or a long term health condition, so they aren’t disadvantaged when carrying out their jobs. 

Your employer can look at ways you can adapt your role, within the reasonable adjustments criteria. This could include switching your working hours to more suitable times or looking at special equipment to help you carry out your role. 

A UK access to work  assessment may be able to highlight things you have overlooked that could help you carry out your work. The assessor contacts you to find out more about your circumstances and makes recommendations to suit you.

So, what else can I do?

I personally think that having a long term health condition has made me more aware of my health and well-being. I look after myself better than some of my peers.

Because I need to exercise regularly to keep my body moving I have a very good awareness of what I need to do to keep as fit and healthy as possible.

Take a look at my pages on

Exercise

Diet and Irritable Bowel Syndrome and

Fibromyalgia Self Help.

Telling your family and friends and explaining how it affects you. With their support you will be able to achieve more.

Having a positive mental attitude and setting yourself realistic goals. I use meditation to help me find focus and a positive direction in my daily life. Follow my link to meditation  for information about this.

Lastly…post me your experiences of working with fibromyalgia and other related illnesses.

Mindfulness and fibromyalgia

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In a previous post I mentioned that mindful meditation has been proven to help the symptoms of fibromyalgia. I was intrigued to explore this in more detail. 

How can mindfulness be described?

In a nutshell, it’s focusing our attention purely on the present moment. Doing this without letting the mind drift back to past memories or thinking about future events. Mindfulness is embracing the present with acceptance, without judgment.

The monkey mind

There are so many distractions for us to focus our mind on. To illustrate the monkey mind, try this exercise for a couple of minutes.

Focus your mind on your breathing.  Think about where you can feel movement in your chest from your breathing.  Concentrate on this area, for a few minutes. You will notice your thoughts stray, thinking about numerous things other than the breath.

These thoughts are from past or future experiences. The mind is rarely focused on the present. It jumps from one subject to another, like a monkey playing. This practice is called the monkey mind.

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Why should I try mindfulness?

Clinical researchers have carried out a number of tests which have shown that mindfulness can improve your overall health and wellbeing. For fibromyalgia sufferers the benefits can be:

  • lower stress levels 
  • lower depression
  • improve the quality of sleep 
  • reduce anxiety 
  • encourage positive thinking
  • alter the way the mind reacts to difficult situations 
  • improve decision making 

How do I start to practice mindfulness?

Start by focusing on your senses when you carry out your everyday routine. By thinking about the feel, touch, smell and the sound of everything you are experiencing. 

If you carry out a task such as washing the dishes, think about the heat of the water, the texture and feel of the plates, the scent of washing up liquid and the sound of water filling up the bowl. 

“If you have a regular daily routine build some time into it every day to practice mindfulness.”

You could try changing your daily activities. For example if you regularly go for a walk and always walk the same way; try changing the route to one your not as familiar with. Or try a completely new walk. 

By changing your routine to something different or new it will get your mind to focus on a familiar task in a different or new way.

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Thought watching 

If you find while you are concentrating on tasks thoughts interrupt you. Just observe them, try not to be side tracked by them.

Introduce a label for each thought that arises; ‘I’m nervous about a exam result’, label it ‘thought’, or a feeling ‘I feel worried’ label it ‘emotion’; and go back to the task you are carrying out.

This practice will help train the mind to not follow a thought and get sidetracked by it. Just observe thoughts without judgment, acknowledging them, and labelling them. Going back to the task.

Mindfulness meditation

Taking mindfulness a step further incorporating it into daily meditation practice can encourage the mind to work in a regular pattern.

Mindfulness meditation works by silently spending a few minutes every day thinking about one aspect of the body, such as breathing awareness and acknowledging thoughts, when they arise and bringing back attention to the breathing.

Have a look at my page on Meditation for more information about suggestions for meditation practice.

 

Revisiting Mindfulness

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I’ve neglected my meditation practice recently; getting back into it proved straight away how helpful it is.

If you have never tried mindfulness or meditation join me now and find out how it can help you and perhaps try it out.

In a previous post I mentioned that mindful meditation has been proven to help the symptoms of fibromyalgia and also help to calm a active mind. I was intrigued to explore this in more detail. 

How can mindfulness be described?

In a nutshell, it’s focusing our attention purely on the present moment. Doing this without letting the mind drift back to past memories or thinking about future events. Mindfulness is embracing the present with acceptance, without judgment.

The monkey mind 🐒

There are so many distractions for us to focus our mind on. To illustrate the monkey mind, try this exercise for a couple of minutes.

Focus your mind on your breathing.  Think about where you can feel movement in your chest from your breathing.  Concentrate on this area, for a few minutes. You will notice your thoughts stray, thinking about numerous things other than the breath.

These thoughts are from past or future experiences. The mind is rarely focused on the present. It jumps from one subject to another, like a monkey playing. This practice is called the monkey mind.

Why should I try mindfulness?

Clinical researchers have carried out a number of tests which have shown that mindfulness can improve your overall health and wellbeing. For fibromyalgia sufferers the benefits can be:

  • lower stress levels 
  • lower depression
  • improve the quality of sleep 
  • reduce anxiety 
  • encourage positive thinking
  • alter the way the mind reacts to difficult situations 
  • improve decision making 

How do I start to practice mindfulness?

Start by focusing on your senses when you carry out your everyday routine. By thinking about the feel, touch, smell and the sound of everything you are experiencing. 

If you carry out a task such as washing the dishes, think about the heat of the water, the texture and feel of the plates, the scent of washing up liquid and the sound of water filling up the bowl. 

If you have a regular daily routine build some time into it every day to practice mindfulness.

You could try changing your daily activities. For example if you regularly go for a walk and always walk the same way; try changing the route to one your not as familiar with. Or try a completely new walk. 

By changing your routine to something different or new it will get your mind to focus on a familiar task in a different or new way.

analysis blackboard board bubble
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Thought watching 

If you find while you are concentrating on tasks thoughts interrupt you. Just observe them, try not to be side tracked by them.

Introduce a label for each thought that arises; ‘I’m nervous about a exam result’, label it ‘thought’, or a feeling ‘I feel worried’ label it ‘emotion’; and go back to the task you are carrying out.

This practice will help train the mind to not follow a thought and get sidetracked by it. Just observe thoughts without judgment, acknowledging them, and labelling them. Going back to the task.

Mindfulness meditation

Taking mindfulness a step further incorporating it into daily meditation practice can encourage the mind to work in a regular pattern.

Mindfulness meditation works by silently spending a few minutes every day thinking about one aspect of the body, such as breathing awareness and acknowledging thoughts, when they arise and bringing back attention to the breathing.

Have a look at my page on Meditation for more information about suggestions for meditation practice.

 

A different view of the world, having empathy

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For most of us, our lives are basically pretty boring and mundane.

But what if one day you woke up and everything had totally changed?

Sometimes for a brief split second we have a thought and visualise it becoming reality.

How strange and unusual it feels.

Just for a moment now,

stop 

and take yourself to that thought.

                                 💭  💭  💭  💭  💭  💭

What did I think of?

I imagined I was free of fibromyalgia

and visiting the Great Barrier Reef in Australia.

I’m looking out onto a perfectly blue sea; staying in a floating hotel 🏨overlooking the reef. I’m going snorkelling around the reef; an I was getting an underwater camera 📸ready to take pictures of the coral reef and the fish.🐠🐟

How did I feel ?

Totally free and like I was visiting a giant tropical fish tank. Swimming around the coral reef, the water was warm. The coral looked like a fantasy underwater garden; the different colours changing as I swam past. 🏊‍♀️

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I hope I have been able to illustrate how it feels to be totally free and able to do anything you want.

The opposite is true living with an invisible illness like fibromyalgia. Plans are broken all the time;

constantly letting others down because your illness is so unpredictable.

Just meeting a friend for a meal is fraught with problems.

Planning what type of food you can eat;

Could it trigger my IBS?

Does the restaurant have chairs with padded seats that are comfortable to sit on for about an hour or more?

Could it start my lower back pains if I am forced to sit on a wooden chair?

On the day I planned to go out, I woke up with pain in my head and feeling disoriented, I’m unable to drive. The meal is cancelled.

Now you are thinking;

and perhaps you’re feeling sorry for anyone with an invisible illness.

Having empathy for someone is a better response; rather than sympathy.

Or to explain this in a better way a quote from the novel,

To Kill a Mockingbird by Harper Lee

“You never really understand a person until you consider things from his point of view…until you climb in his skin and walk around in it.”

Just putting yourself in that persons shoes can give some insight into our version of living; our different view of the world we face on a daily basis.

Perhaps now you could repeat the above exercise, but this time, imagining you have fibromyalgia.

I’ll start you off with how my day can start….

You wake up and you’re legs are aching, as you move to get out of bed a muscle in your back twinges in a spasm. Your in intense pain for a moment, luckily the pain softens. You manage to get out without any other area going into spasms. As you start to get dressed your head feels achey. Your chest feels painful as well…

A great way to start the day and I’ve not got to work yet!