Blog, Chronic illness, Diet, Exercise, Fibromyalgia, Invisible illness, Meditation

It’s #Fibromyalgia Awareness Day

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Fibromyalgia affects around 1 in 20 people. Although most people have no idea what fibromyalgia is; let alone what it’s like to live with.

So, here’s a brief guide for anyone who doesn’t know anything about fibromyalgia.

What is fibromyalgia?

Its a long term chronic health condition characterised by pain. The pain ranges in severity on a daily basis from mild symptoms to severe pain in changing areas of the body.

The main symptoms are:

Pain throughout the whole body 

Joints and muscles feel stiff

Quality of sleep can be poor

Feeling tired and fatigued 

Irritable bowel syndrome (IBS)

Extreme Sensitivity 

Cognitive problems, feeling confused, or dazed, sometimes called Fibro fog

Headaches

Depression 

Anxiety 

Painful periods in women 

The symptoms can vary from person to person.

Symptoms can get better or worse from time to time.

Factors that influence this are:

  • the amount of stress you are experiencing 
  • how much daily exercise you have
  • and changes in climate and temperature 

Further information is available on the NHS website.              

If you think you may be suffering from fibromyalgia, consult your doctor or health professional. They will run a variety of tests to get an accurate diagnosis of your condition.

There’s no cure….Yes you did read that correctly; there’s no cure, but…

I’ve lived with fibromyalgia for 15 years and found some times are really tough.

The single most upsetting factor for me has been other people’s perception of ‘living with fibromyalgia’. They almost always get it wrong. So, if you meet someone who has fibromyalgia, tread carefully. Don’t jump to conclusions about how they feel. Listen to them. After all they are living with it on a daily basis.

The positives are my symptoms are still there, but have improved greatly since I was first diagnosed.

I have been able to boost my general health through diet, exercise  and meditation .

This is a short post about symptoms, living with fibromyalgia is another story…

If you would like to read more about what helped me, follow my blog and have a look at my Fibromyalgia Self Help Pages.

Blog, Chronic illness, Fibromyalgia, Invisible illness

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.

Blog, Chronic illness, Exercise, Fibromyalgia, Hydrotherapy, Invisible illness, Pilates, Sitting Exercises, Uncategorised, Walking

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.