I’ve had fibromyalgia since 2004 and have kept working.
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.
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.
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.
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 theNHS sleep self assessment to determine how good your sleep is.From this link you will find some helpful information about sleep.
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.
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
improve the quality of sleep
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.
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.
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.
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.
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 organisationDo-it offers lots of opportunities to volunteer, in areas nearby or from home.