Blog, Chronic illness, Fibromyalgia, Invisible illness

What is an invisible illness?….fibromyalgia

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When I created my blog, one important aspect of this was to raise awareness of Fibromyalgia.  Since being diagnosed 16 years ago, I’ve found, others don’t understand how I could have an ‘invisible illness’. 

 ‘You don’t look ill’….

Is something I often hear. Because it’s is not a visible disability, I look normal and people are sceptical about the validity of it. 

People judge others in a critical way sometimes. If they have no knowledge of friends or family with a chronic illness, like fibromyalgia their understanding is limited.

I may not look in pain. Not all illnesses are visible all the time. If you have suffered from back problems or migraines you would be aware of this.

Fibromyalgia is a real medical condition, which can be referred to as a disability for some.  It causes chronic pain and fatigue throughout the whole body. The pain can be debilitating and constant. Some days it can get better or worse. It is not visible for most sufferers.

You may ask, if you know someone or meet someone with fibromyalgia. What should I do?  Showing them compassion and learning about their symptoms can help a lot. Just taking the time to talk about it with them will make a big difference.

For more information about fibromyalgia look at my other web pages and on the NHS Choices website.

If you’re a Fibromyalgia sufferer like me and are looking for a way to let others know about your invisible illness the following website may be of interest to you.  🌻 

https://hiddendisabilitiesstore.com

Chronic illness, Fibromyalgia, Invisible illness, Sleep, Uncategorised, Yoga Nidra

How are you #sleeping?…

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A few simple changes can make a difference to your quality of sleep. I know this from first hand experience, having suffered from poor unrefreshing sleep for years, due to fibromyalgia.

After weeks of not sleeping the body’s functions become impaired making it extremely difficult to function in a normal way. (Whatever normal is for a fibromyalgia sufferer). 

“If you’re thinking, I don’t have fibromyalgia, it’s still worth giving these suggestions a try.”

“Insomnia, fatigue and pain are all part of life if you live with fibromyalgia.” The symptoms of fibromyalgia, such as fatigue and pain are all made worse with poor quality sleep.

Over time I’ve found some solutions that have helped me get a better nights sleep. Obviously, there’s no one size fits all with these suggestions. That said, it’s still worth giving them a go. Just being aware what might work is useful.

On occasions I still find I have some problems sleeping but I can solve these more effectively than previously.

Common problems experienced range from:

  • getting to sleep
  • staying asleep until morning
  • waking during the night
  • getting back to sleep after waking up

Have a look at the following suggestions for improving your sleep

  • Go for regular exercise every morning, lunchtime or evening, for example by walking 

  • Check your bedroom temperature and lighting are beneficial for sleep 

  • Adjust your bed and pillows to make it as comfy as possible 

  • Invest in a electric blanket to warm the bed before you get in and help relax muscles 

  • Avoid smoking, over eating or drinking caffeine directly before bedtime 

My top tips for getting to sleep

  • Help your mind wind down for the day
  • Get into a regular sleep routine for adjusting your Circadian rhythm, try to get up at the same time every day
  • Turn off all devices that emit blue light an hour before bedtime
  • Read a relaxing book or listen to gentle music
  • Try a meditation, for example yoga nidra to help you to get to sleep 
  • Use ear plugs and a eye mask to block unwanted noise and light
  • Get into a comfortable sleep position and then try a relaxation routine 

Whilst you are asleep make sure your room doesn’t have a device left switched on, that will wake you like a mobile phone.

A pet that sleeps in your bedroom and disturbs you in the night, should be encouraged to sleep elsewhere.

If you wake in the night and cannot get back to sleep get up and find something that makes you drowsy like reading or a yoga nidra sleep meditation then return to bed.

If you find by morning you have not had enough sleep go back to bed and sleep for a while longer. If you catch up with a couple of hours sleep every night you will see the difference after a few months.

I recently read several articles which mentioned vitamin D (sunlight) exposure daily in the morning shortly after rising can help and mindfulness meditation both improved the quality of sleep for fibromyalgia sufferers. 

I believe this to be true because I usually get up and do a daily walk every morning and this regulates my circadian rhythm over the next 24 hours. It’s more important to get up at the same time every day than the time I go to sleep. 

I’ve found improvements in my concentration and ability to switch off at night after practicing regular Meditation on a daily basis. Explore meditation apps for sessions covering mindfulness and sleep. Have a look at my Fibromyalgia Self Help pages on  Meditation and  Exercise

If you have insomnia and it’s not necessarily fibromyalgia related, get it checked out by your doctor or health professional. If they prescribe sleeping pills it would be advisable to be referred to see a specialist sleep consultant.

Have a look at the  NHS sleep self assessment  to determine how good your sleep is.  From this link you will find some helpful information about sleep.

Blog, Chronic illness, Fibromyalgia, Invisible illness

September is #Pain Awareness Month…

I have an illness that’s not visible.

Although you cannot see it

For me #fibromyalgia is real.

It causes me #chronic pain and #fatigue.

The pain can be debilitating and constant.

Some days it can get better or worse.

It’s altered my life choices

I’m not asking for sympathy

Just empathy

If you’ve never heard of fibromyalgia or know very little about it. Please take a few minutes to read this.

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.

Have a look at the NHS description of fibromyalgia for more in depth information about the condition.

Invisible Illness and Fibromyalgia 

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

In my personal struggle with fibromyalgia this single fact has caused me the most stress over the 14 years I have had it.

You may ask, if you know someone or meet someone with fibromyalgia. What should I do?  Showing them compassion and learn about their symptoms can make a difference. Just taking the time to talk about it with them will help.

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.

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

I have #fibromyalgia…

adorable animal breed canine
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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.