Keeping Active with Fibromyalgia

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Now that Spring is here and we are beginning to have lighter evenings. It’s a good time to consider reviewing your fitness and exercise regime if you have one.

After I was was diagnosed with Fibromyalgia in 2004, I found that exercise helped me a lot as I struggled to find things I could do. When you have Fibromyalgia it is a daunting prospect, keeping fit. Particularly starting out for the first time, with a new exercise.

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

I have made a list of everything that has helped me that you could try.

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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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.

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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.

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

I hope this short post has given you some new ideas on exercise for Fibromyalgia. My goal is as always to help others with Fibromyalgia and similar invisible illness.

I’m interested in hearing from any fellow sufferers of Fibromyalgia, particularly if you would like to share your experiences on my blog.

A lifetime free from pain

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I wish……..

Living with a invisible illness like fibromyalgia I can never forget about it. 

I’m naturally a positive person and find every day my body feels different in some way. 

I can wake up with my head full of things I want to do and a body unable to carry them out. Normal everyday tasks are restricted by fibromyalgia. Over time I have adapted tasks to enable me to carry out as much as I can.

The single biggest obstacle I face on a daily basis is based purely on other people’s perceptions of me with fibromyalgia. Just putting it into words is difficult. 

I’m constantly frustrated how difficult it is to give an accurate explanation of what fibromyalgia is and what it’s like to live with.

Saying that, it’s difficult to be accurate because everyone that gets fibromyalgia has different symptoms and severity which can complicate a good definition.

This difficulty is illustrated well by my carer who recently said….

‘Every time I explain what it is, it takes half an hour,’

‘People go quiet,’

People seem to second guess what it is, and not listen to a explanation…

‘I know, Fibro cystic……. yes, I’ve heard of that, that’s not good,’

Oh,……I had something similar when I was young, it made me really ill for months,…..but now I’m fine.

Just to be clear,     IT’S    NONE    OF    THE    ABOVE

I am going to try now, with the following definitive list of symptoms.

My definition will be accurate in my individual case only.  Some of these symptoms may be shared by others with fibromyalgia.

The fibromyalgia I live with varies from day to day in severity. It can include all of these symptoms at sometime, not always together but occasionally I can have several at once.

Aches and pain throughout the body 

Anxiety 

Balance problems 

Bladder problems 

Bloating 

Cognitive problems 

Depression 

Dizziness

Dry mouth and eyes

Fatigue 

Fibro fog

Frequent Headaches 

IBS

Jaw pain

Light sensitivity 

Lower back pain

Muscle spasms 

Noise can impact on my symptoms 

Numbness

Painful periods

Pain in joints and muscles 

Physical activity increases can exacerbate my condition 

Poor quality sleep 

Rashes

Restless leg syndrome

Sensitivity to smell

Stress can affect my symptoms on a daily basis 

Stiffness 

Sinus’s problems

Temperature changes effect pain in the body

Tingling 

Tinnitus 

Types of pain experienced a ache, burning pain and sharp stabbing pain 

Varying degrees of pain 

There’s no cure, but with exercise and diet symptoms can be improved to some degree.

As you can see Fibromyalgia is a difficult illness to describe and live with, because it encompasses so many variables. 

If you are worried about having similar symptoms and have not received a diagnosis for them, you should contact your doctor or health professional for advice.

Have a look at the NHS description of fibromyalgia,  and links to support groups and the online community if your a sufferer.

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.

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How to unlock the secrets to better sleep with fibromyalgia

pexels-photo-374898A few simple changes can make a difference to your quality of sleep. 

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). 

I know this very well from first hand experience, having suffered from poor unrefreshing sleep for years.

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 meditation, particularly one for helping you 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 tired 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.

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How can I keep working with fibromyalgia

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I’ve had fibromyalgia for fourteen years now and have kept working. How have I been able to do this?  Thinking back, I wonder myself.

Every day is a struggle. I wake up tired, my body is aching. Just getting up out of bed and moving about can be difficult with fibromyalgia.

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 to them what it’s like and how it’s affecting 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, will help.

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.

I would welcome any fibromyalgia sufferers to get in contact with me about your experiences.

 

 

 

Keeping Positive and Motivated with Fibromyalgia

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Or trying to…….. When you have a long term condition like fibromyalgia and you often suffer from constant pain on a daily basis, it’s difficult to keep positive and motivated.

In January it’s probably more likely that you will feel more fed up. Feeling flat and deflated after Christmas is common for some.

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. 

Putting a positive slant on it. It’s a new year, and it could be time to try out a new hobby or something you have always wanted to but have never taken the time. I like creating things as you all know in decoupage! 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 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?…….

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New Year resolutions…have you tried walking yet?

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Walking is one you should really consider; it can help you loose weight and get exercise.  It’s possible for most people to take up walking and it’s easy to start…..

Now that Winter is here I’ve got my warmer items ready for the colder months. Being a fibromyalgia sufferer I notice any temperature drop as the weather changes, straight away. 

My joints feel stiff, I get more pain and all my symptoms get progressively worse. I still try to keep active if I can everyday by walking. I wear layers and thermals to keep warm.  

I started walking regularly before I was diagnosed with fibromyalgia.  I’d been suffering with lower back pain and sciatica, which got progressively worse.  I was unable to work. My doctor said I need to go to physio first; to get the muscles and joints moving and when I’m mobile to start walking regularly.

At the time I thought it was really unhelpful advice as I could barely move, let alone walk anywhere!  But after a few painful physio sessions. I started with short bursts at first of 5 to 10 minutes, progressing to longer walks.  Now I do a regular walk every day and have not suffered from back pain so much; I also have more energy to do things.

I look forward to my walk everyday, sometimes twice a day if I’m not too tired later on. I like walking especially on a fine sunny day; it can really lift your mood.  I live near a park and I can vary my daily walks through wooded areas and quiet residential streets. I usually spend about 25-45 minutes on each walk and vary the terrain. On really cold or wet days when my symptoms are worse, I go for a walk at a local covered shopping centre, which means I still get exercise but I’m not exposed to the elements as much as outside. 

I bought a new pair of waterproof walking boots recently; which are great to wear in rain and snow. I bought mine from a outdoor clothing and footwear shop in the sale. I’ve also invested in a waterproof jacket,  woolly hat, thermal gloves and socks. I find it difficult keeping my hands and feet warm, when it is really cold. Research shows we loose most heat from our hands and feet; so it makes sense to keep these areas as warm as possible.

If you plan to begin walking and have not exercised recently it would be advisable to consult your doctor or health professional beforehand.

If your joints are very stiff it might help to try gentle exercise at your local heated swimming pool first. Exercising in water supports the body and would free up joints. If you are a wheelchair user some pools have special equipment to access the water easily.

When you feel ready to start put on some comfortable shoes and suitable waterproof clothing for the weather.  Start off with short bursts of 5 to 10 minutes and gradually build up from this.  You will find you get more confidence and can do longer distances.

Throughout the UK free regular guided walks are provided by  Walking for health  which is funded by the UK People’s Postcode Lottery and Macmillan.  They offer different short walks for beginners which are for 20-30 minutes long. The route you walk over is easy terrain as they are specifically designed for people who are not very active. Some walks are suitable for wheelchair users and people with buggies. 

If you are a wheelchair user the UK website Walks with wheelchairs is dedicated to routes for wheelchair users.  All walks have been tested by wheelchair users.

The NHS Walking for health  site gives helpful advice for anyone wanting to start walking. 

If you suffer from fibromyalgia and have started exercise recently, it would be really helpful to hear about your experience.

How’s the diet going? Losing weight with fibromyalgia

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You may remember my post ‘You are what you eat’. My carer was diagnosed with high cholesterol a few weeks ago and is trying to reduce the cholesterol and lose weight.

I decided to get my cholesterol checked by my doctor; as I do far less exercise and probably eat a lot more than my carer. 

I was surprised to find it was ‘OK’; although my BMI was high and I am categorised as overweight.  My question is, How can this be? We both eat the same meals?

Our bodies burn up calories differently.  Some people are more likely than others to have high cholesterol. This can be for a number of reasons, which do not necessarily relate directly to the food they eat. 

Between us we have learnt a lot about reducing cholesterol. It isn’t as straightforward as I had first thought. 

Learning about the different types of fat, such as saturated and unsaturated fats has been tricky, when trying to select food. Also good (HDL) and bad (LDL) cholesterol.

Butter or its equivalents was very confusing.  Fat spreads are high in saturated fat but some contain plant sterols which help to reduce the ‘bad’ cholesterol in the body. They work by blocking some cholesterol being absorbed into the blood stream from the gut.

The British Heart Foundation has produced some guidance about food labelling which is really useful when choosing healthy food.

In a nutshell it really means eating a healthy balanced diet which is low in saturated fats.

Losing weight and lowering cholesterol are two different things, but combined you can do both by cutting out food high in fat and saturated fat.

So far I have good and bad news; the good news is…..

My carer has managed to lose almost all the weight required in roughly two weeks. I asked ‘What’s your secret to this amazing weight loss?’ Apparently not eating unhealthy snacks throughout the day. If you feel hungry substitute the unhealthy food with different types of fruit. Most drinks are OK, as they contain no fat/calories and having a drink rather than food can help to make the stomach feel full. Also cutting out cake and biscuits which pile on the pounds. 

My results so far are less encouraging, I have only lost 2 lbs in about two weeks. Having fibromyalgia I think it’s harder to stick to a diet. I have cut back drastically on snacks now and we longer eat cake for tea. Both of which were piling on the pounds and are full of saturated fats. I’ve stopped eating cheese, only cottage cheese. But chocolate, my favourite snack I’m still eating. Dark chocolate is better; so I have a small piece at a time. 

The good news for me is, I have noticed I’m not wanting to eat as much or eat as many snacks. My clothes are also a lot looser around the waist! I’m taking it slower losing the weight and hopefully I will be able to stick with it.

If you want to find out about high cholesterol the NHS website has more information.

Another site that has a lot of facts about reducing cholesterol is Heart UK .

I also came across an interesting article by Dr Axe an American clinical nutritionist about reducing cholesterol naturally without using statins.

If you have any thoughts or suggestions about this please let me know. It would be great to share others experiences.

So, you think you know all about fibromyalgia?

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There’s always one clever friend 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,

‘Noooooooo,  You cannot be serious’,

in my best impression of John McEnroe!  

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.