M.E. MYALGIC ENCEPHALOMYELITIS AWARENESS WEEK 6th-12th MAY. 2019…

ME Awareness Week will run from 6th to 12th May 2019 with many activities focused on ME Awareness Day itself (Sunday 12th May). The focus of the ME Association’s awareness campaign for 2019 will be the Real M.E.

Promoting REAL stories and photos from REAL people, telling the world about the REAL disease that is M.E!  We’ll be sharing many of the hundreds of photographs and stories that you have sent to us, showing how this cruel disease can vary so much in intensity and severity both from person to person and even from one minute to the next for each person affected.

ME Association fundraisers are busy working up their madcap ideas for how they will Go BLUE in 2019.

Why BLUE?  Because blue is the internationally accepted and recognised colour of M.E. Awareness. How you GO BLUE is entirely up to you… How far you go BLUE is also entirely up to you. Just do all you can to colour in this cruel invisible illness….

Here are some ideas from ME Association -BLUE faces, BLUE hair, BLUE nails, BLUE themed raffle, BLUE profile photographs on social media, BLUE tongues, BLUE balloons tied to garden gates, Bake sales, plant sales, tea parties, supermarket and shopping centre collections, walks, concerts, orienteering, fun days… of perhaps a virtual BLUE Sunday.

People with M.E. disappear from society and can easily be forgotten and overlooked. Our mission for ME Awareness Week is to rectify that with our Real M.E. campaign. With your help.

Please share REAL stories and images far and wide between 6th and 12th May.

Myalgic Encephalomyelitis (M.E.) is a long-term (chronic) fluctuating illness that affects many parts of the body, more commonly the nervous and immune systems. It may be diagnosed as Chronic Fatigue Syndrome (CFS).

What is M.E.?

Symptoms vary from person to person but can include:
Physical and mental exhaustion (fatigue), which feels very different from ordinary tiredness
Post-exertional malaise: this means that any physical or mental activity can bring on an increase in symptoms, but not straight away
Intense muscle or joint pain
Inability to speak or concentrate
Extreme flu-like symptoms
Sleep disturbance
Dizziness and/or nausea
Hyper-sensitivity to light and sound.

Many people still believe that M.E. is all in the mind. This is simply untrue. Research has found potential biomarkers (physical evidence) for M.E. but much more research needs to be done to confirm the cause (or causes) and a cure.

Why should you care?

M.E. can affect anyone. It doesn’t care how old or young you are, or where you come from. People of any age, including children, can get M.E. It currently affects 1 in 250 people in the UK alone.

Some manage to struggle on with their lives. Others spend most of their time bedbound or housebound, unable to perform basic functions unaided.

One of the biggest frustrations expressed by people with M.E. is that family, friends, the media and even doctors often don’t believe their illness is real, or fail to understand just how debilitating it is. With your help, they can change this.

 

 

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‘KRIOTHERAPY’, THE LATEST FEEL-GOOD THERAPY FOR FIBROMYALGIA AND MUSCULAR PAINS…

Kriotherapy (sometimes spelled Cryotherapy) is the latest feel-good therapy which has apparently been known to heal muscular injuries, chronic aches and pains, help alleviate arthritis, and boost circulation, the immune system, and help fatigue, insomnia and the central nervous system !!

It involves spending two to three minutes at a temperature between -60C and -135C depending on your size and fitness level. It is stated that it is not suitable for people who suffer from claustrophobia and no-one should undertake it until a full medical history has been taken.

You are put in front of a fan to dry out your body thoroughly then put into a cabinet where the dry ice begins to seep in while you acclimatise to the -60C, then another door opens and where you are in a -135C atmosphere. After three minutes you are put through paces to help the released blood (which is sent out to protect vital organs in freezing temperatures) surge through your body, with ten minutes on the treadmill, an exercise bike and exercises.

The fact that you are cold, then warm apparently makes the blood swirl into action to help heal.

 

According to an article in Treatwell, writer Charlotte wrote about the treatment at Champneys Health Spa in Tring.

“Instead of trying out the usual Massage or Facial, we decided to test something different in the name of health & wellness – Kriotherapy. Becoming human ice-cubes doesn’t sound too appealing but in the end we had the most fun we’ve had in ages, and left with the softest skin we’ve ever had.

The Venue

The fountain outside made us immediately unwind (and so did the complimentary fruit juice), and the smell of Elemis products got us in the mood for some pampering right away. Walking through the corridors, Champneys Tring is full of things to do and offers a homely feel even though you’re wearing your robes in front of complete strangers. You’re welcomed the very second you step through the door and everyone offers a polite ‘Hello’, even the guests!

The Treatment

Kriotherapy isn’t a treatment for the faint-hearted or the fashion-conscious. We didn’t walk around in our designer bikini, rather some very attractive shorts, a crop top and some clogs (don’t say we didn’t warn you…), but it’s supposed to be a brilliant therapy for those with sports injuries or who suffer from depression, fatigue, psoriasis and insomnia.

The qualified cryotherapist, Renata, gave us a brief examination, taking our pulse and blood pressure to make sure we were fit enough to handle the freezing chambers. If you have high or low blood pressure, diabetes, epilepsy, heart conditions, or are claustrophobic – it’s best you steer clear from the thrilling treatment. Renata then handed us our outfit – if you’re a fashionista who would never be seen dead in a white woolly crop-top, Kriotherapy might not be your favourite treatment! We wore two pairs of white shorts, two crop-tops, two sets of white hockey socks, and a headband to protect our ears from frostbite (eek). Then Renata told us to make fists with our hands whilst she covered them with gloves and tugged on some bandages over our elbows and knees.

We started to get a little nervous once we were dressed up, but Renata ensured us it was all for our safety. We also stood in front of a fan for a few seconds to dry any perspiration or water lingering on our skin, to ensure any water didn’t freeze and burn our skin inside the chambers.

Once we’d fixed a mask over our nose and mouth and all our extremities were covered up we were led into the first chamber, which is at a chilly -60c. After 30 seconds of acclimatising we jumped straight into the second chamber, which sits at a very frosty -135c. Squealing and laughing, we spent the next 3 minutes marching in circles, jumping up and down, laughing, giggling, anything we could do to keep warm in the freezing temperatures. Renata stood in the warmth holding a timer so we knew how long we had left, and held her thumbs up as we counted down the last 10 seconds between giggles.

After tumbling out of the chamber, we cycled on an exercise bike for a couple of minutes, then spent 15 minutes on a Powerplate to get the circulation going and our rosy body back to its usual colour. Whoever said feeling great didn’t require a bit of hard work?

The Result

Whilst we felt a little embarrassed in our outfit, the treatment itself made our skin feel the softest it’s ever felt and those big gulps of freezing air did wonders for our breathing. Any aches and pains we had previously had gone and we were left excited for a good night’s sleep later. We had been nervous about the freezing chambers, but Renata put our mind at ease and we ended up giggling throughout the whole thing.”

I’m not sure if I’d fancy this and wonder if ice packs, followed by warm packs, would hit the spot just the same? I think I would rather have another type of treatment at this amazing Spa in Tring.

 

SCHOOLS OUT – MY TOP 4 ESSENTIALS FOR A PAIN FREE HOLIDAY…

Schools out and the holidays are well and truly active with day trips, weekend breaks and holidays in the UK and all over the world planned to fill the long summer break.

All the planning for your holiday fun are ready but I bet the last person you have thought about was yourself.  We are busy planning fun for the children and visit’s to different places instead of thinking about ourselves.

The easy way to avoid a flare up is to plan ahead. Walk the event through your head. How long will you be in the car? if it’s going to be a long haul journey make sure you have your sciatica pain relief cushion with you. This one is not just for sciatica pain but is great for low back and fibromyalgia pain.  It’s easily portable so think about what you will be sitting on when you arrive at your destination.

Think about what the temperature is going to be like where you are going to. Pack your pain relief cushions which are great hot or cold for neck pain or any other body pain and can come in handy if someone else in the family has some pain. This company do a number of different shapes and sizes.

Buy yourself a 14 day pill organiser as it’s easy to forget when you last had your medication while away from your usual environment.

Finally, don’t forget to pack your walking stick as you will without doubt be walking on completely different terrine to what you are used to at home and that can soon trigger off low back pain. Folding walking sticks are cheap enough to buy nowadays and there are also some pretty and floral ones around.  I learnt very quickly to make sure I had a spare in the boot of the car or in my suitcase after leaving mine behind a couple of times while on holiday.

WHY IS SLEEP SO IMPORTANT FOR FIBROMYALGIA SUFFERERS?…FREE E.BOOK DOWNLOAD…

This post is a guest post from Kathryn O’Hara at N:Rem Sleep System...

When we’re sleeping, our brains are actively working to process the information from the day in to our long-term and short-term memory. Good sleep not only helps our bodies and minds to rest and repair, it allows us to perform better too.

What happens when you sleep with Fibromyalgia?

Many Fibromyalgia sufferers say they feel lucky if they reach 5 hours’ sleep a night. Do you ever find yourself stuck in a vicious cycle? Pain makes it difficult to sleep, but sleep deprivation means the body can not repair itself – making the pain worse.

Lack of sleep also causes stress, lack of coordination and agility, weight gain and poor judgement. The last thing that a Fibromyalgia sufferer needs.

How to drift in to a restful slumber:

Resist the afternoon caffeine rush:

It will take your body up to 7 hours to process only half of the caffeine in your cup of coffee. We know it keeps us awake, so try to make your last caffeinated drink before 2pm to give your body chance to process it before you hit the hay.

Set a bedtime:

Train your body to feel tired and awake at the desired times by going to bed at the same time every night, even at the weekend. It will help you to fall asleep faster, sleep for longer, and wake feeling more refreshed.

Keep your cool:

When you sleep, your body temperature naturally drops. Keeping your bedroom cool (not cold) should help to ease you in to a deep sleep. The ideal temperature is between 18-21C.

Ditch the screens:

Your body will not produce enough melatonin (sleep hormone) to help you sleep if your brain is stimulated by the blue light emitted from your phones, laptops and TV screens. Stop using electronics at least an hour before bed. A good book and some soothing music is a far better option.

THE GOOD SLEEP MANUAL

A Guide to a better night’s sleep for Chronic Pain Suffers

We are proud to launch our very first E-book, which will be a collection of useful tips to help Chronic Pain sufferers sleep better, as pain and sleep unfortunately often constitute a vicious cycle.

This is an issue we are hoping to solve, through some easy steps to follow around health, lifestyle and diet, to ease you into a better night’s sleep.

We have been fortunate enough to get some valuable help from 2 contributors who suffer themselves from Chronic Pain and have been keen to share their tips and personal journey towards a comfortable and refreshing night’s sleep.

Head over to the N:Rem Sleep System website to download your free ebook here.

Kathryn O’Hara 

DOCTOR IN THE HOUSE EPISODE 4 ON FIBROMYALGIA…

I wrote a few weeks ago about the ‘Doctor in the House’ episode which was about chronic pain and fibromyalgia which I finally managed to catch up with on BBC Iplayer last night.

For anybody who doesn’t know what this program is all about, it’s a documentary and in each episode a family invites a GP (Dr Chatterjee) into their home to investigate every aspect of their lives. They’re worried about their health, and they’re hoping he can solve their problems.

In Episode four Nicola has been diagnosed with ten different conditions, including fibromyalgia, ME, sciatica and depression. Her pain and exhaustion have led her to become reliant on painkillers and she struggles to get through the day. Can Dr Chatterjee help Nicola find the cause of her problems and improve her health so that she can enjoy life again with her three young sons?

In each episode there are two families involved and the second family is a lady suffering from stress and severe exhaustion and is at risk of developing life-threatening type 2 diabetes. As a single mother, she works two jobs as a car saleswoman and a nightclub bouncer whilst juggling the demands of her two young sons. Rangan must find a way to completely overhaul her lifestyle, including her diet, sleeping habits and work-life balance.

Although they are two completely different problems some of the symptoms overlap, in particular the problems with sleep. One of the first things Rangan suggested to the single mother was to buy some clip on blue light filter glasses which she was told to wear in bed at night when using her phone or watching tv. The blue light blockers are in a clip on flip up style stay on glasses and covers sight areas without blurring or changing hues with deeper Amber color. These glasses filter out the blue light from the tv, computer and phone that disrupts natural sleep cycles. As a chronic sleep sufferer myself, I was keen to give this a try but I didn’t need to buy them as my Kindle Fire had an option to change my screen colour at night to filter out the blue light. I applied the filter and I definitely had a better nights sleep.

Nicola wanted to sleep all the time and instead of feeling great after a walk she just wanted to lie down. This, in particular resonated with me as I am exactly the same. The Doctor felt that some of her sleep problems were due to her diet and they had to remove all junk or processed foods to see if that would help. Nicola went from bad to worse and at one stage told the Doctor she needed a break from him following her progress.

The Doctor was really upset about this but then went back a few weeks later with an idea of taking Nicola to a ‘Mindfulness Class’. According to the NHS Professor Mark Williams, former director of the Oxford Mindfulness Centre, says that mindfulness means knowing directly what is going on inside and outside ourselves, moment by moment.

“Most of us have issues that we find hard to let go and mindfulness can help us deal with them more productively.” “Awareness of this kind also helps us notice signs of stress or anxiety earlier and helps us deal with them better.” Nicola wasn’t sure at first but then found it quite amazing and started using it regularly at home. Nicola was also told that they had found out from some of her blood tests that she definitely had a gut problem which was contributing to her overall health.

At the end of the program I could see the incredible results he had made with the single mum but I felt that Nicola although in a lot less pain, still had a number of health conditions to sort out.

Fibromyalgia sufferers are well to aware that we have a multitude of symptoms and problems so it can be difficult to know what to take, medication wise,  but one thing that is clear is our main problem is pain and fatigue and there are not many treatments be it medication or otherwise that can sort this out for us. It is more a case of learning to cope with flare-ups and bad days.