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.

The secrets to better #sleep…

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

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, for example a walk 

  • 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, like yoga nidra or one for helping 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 anything 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 in 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.

How do you stay positive and motivated with Fibromyalgia?

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It’s difficult when you have a long term condition like fibromyalgia. If you suffer from constant pain on a daily basis.

My most FAQ as a fibromyalgia sufferer is….

‘Why am I in pain again and what will make me feel better?’

In truth there’s no quick fix. It’s going to vary quite a bit from person to person what can help. 

“It could be time to try out a new hobby or something you have always wanted to but have never taken the time.”

I enjoy creating things as you all know in decoupage and crafts. Being absorbed by a hobby for me really lifts my spirits. Working on a project and seeing it through to completion is really exciting for me. 

Even writing my blog is a great way to help put things into perspective sometimes. 

“Personally I have found any form of distraction helps.” 

When my pain is very bad watching a film or tv program helps. Even though it is only for an hour or so; if I can be pain free just for an hour it’s really helpful. 

Listening to your favourite music, talking to friends or family, looking at photos and reading a gripping novel are all ways to distract the mind.

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I am lucky that I am able to work part time. I’ve found it helps me to some extent, as a distraction from pain. My job involves helping others and I find this is rewarding because it gives me a sense of purpose. I think if I did not work I would do some form of voluntary work, which involved helping others. 

Voluntary work is definitely worth considering if you are looking for a new challenge and it can be very rewarding.

It benefits both the worker and employer and lots of various roles exist. If you are disabled or housebound don’t rule it out because many roles exist for homeworkers.

A number of organisations can help you to find volunteer roles in the UK. 

The organisation Do-it offers lots of opportunities to volunteer, in areas nearby or from home.

What might you want to do?….

What’s your inspiration?……. 

Read me and #BecomeFibroAware

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Don’t you find, there’s always someone who starts a conversation with…

‘You know, I think I had fibromyalgia years ago.  I was sick for months with pain as a child……but now I’m fine’.  

I get exasperated when I hear someone say something like this; I want to say to them,

So, you think you know all about fibromyalgia?……

But I just remain calm and agree with them 

O, yes you are probably right’, 

thinking to myself, why did I agree when I know there completely wrong? I now realise they’re not as clever as they think they are!

Fibromyalgia is an illness with NO CURE, it’s not possible that you had it ‘years ago and are now cured’.  

The best doctors in the world have not found a cure for fibromyalgia yet. Look it up on google as, ‘fibromyalgia cure’, it will say there’s no cure.

For anyone who is confused and does not know anything about fibromyalgia,

I will run through the main symptoms.

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.

Going back to the fact there’s no cure.

I’ve lived with fibromyalgia for 14 years and found some times are really tough.

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

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

If you would like to read more about how I achieved this have a look at my Fibromyalgia Self Help or contact me via the link below.

I appear normal but…

 

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

This week it’s #fibromyalgia awareness week

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.