WORLD FIBROMYLAGIA AWARENESS DAY – 12th MAY, 2019…

On May 12th and throughout the month of May of each year, people worldwide spread awareness of fibromyalgia and other chronic pain conditions through live events, online activities, and personal efforts. In the UK our awareness day is 2nd – 9th September but we can still raise awareness in the UK this May.

Join the millions of people who will be participating on this day by holding various events to raise awareness for fibromyalgia, an invisible and debilitating chronic condition.

Awareness and funding are the keys to battling the enigma that is Fibromyalgia, and this day was created for just that.

Symptoms of Fibromyalgia may include heightening skin sensitivity – especially to pain, muscle stiffness, some difficulties sleeping, problems with memory and concentration, extreme tiredness, and headaches.

These symptoms are not uncommon in other diseases – and some sufferers don’t even experience all these symptoms – so it’s easy to see what makes fibromyalgia so tricky to diagnose.

There is no cure for fibromyalgia, so at the moment the only option for sufferers is to have a number of treatments. For example, medication such as painkillers and antidepressants are often prescribed.

Fibromyalgia Association has been involved in producing an online fibromyalgia learning package for professionals and patients.  Fibromyalgia UK have it and It is free and after testing a certificate can be printed off.  While some of it may obviously fit the American system rather than the NHS, it is still a useful resource with much valuable information.

#FIBROMYALGIA AWARENESS DAY 12TH MAY 2018, EVENTS…

Help us to promote Fibromyalgia Awareness Day on 12th May 2018 in any way you can. Some Fibro groups have created unique ways to help promote awareness.

To mark Fibro Awareness Day the Flare Group meet at the Blackpool Tower for their annual Global Light up the Night where the Tower will once again light up in purple with a blue heart to represent both FM and Me.If you would like to get involved, visit or donate to any of their events or fundraisers please contact them by clicking here, you can also message them through their social network pages and groups.blackpool

 

Fibro and Chronic Pain Support Group promote the awareness day on a Facebook page which is an online event only so you can attend from the comfort of your home or work! Fibromyalgia (FMS) & ME/CFS Awareness Day for May 12th of each year, but will be recognized by us all year round. It isn’t just one day that we want awareness, it’s every day because every day we deal with chronic pain. We attend at the comfort of our home and work. We will be able to share together support, love, care and information. Fibro and Chronic Pain Support – Page Link: https://www.facebook.com/FibroandChronicPainSupport – International May 12th Light Up the Night Challenge
https://youtu.be/O4Bzevj6WGA

Fibrodaze also has the above and others on their list of Fibro Awareness online events

Fibromyalgia Action UK have an events page with a list of awareness events and have a Campaign Pack to help you organise your own event. It’s still not to late to sort one out. Their campaign pack is designed to help you share the message among your community about fibromyalgia and the significant impact that the condition has on their lives of those living with the condition, as well as family and friends of those affected. There is a range of materials available to download and print from the Fibromyalgia Action UK website, that you can use to promote your activity or to encourage people to talk about fibromyalgia.

May 12th International Awareness Day – Since 1992, they have been raising awareness for May 12th!  Each year landmarks and private homes around the world are lit with our colours on  May 12th. May 12th has been designated as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS).May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS. In 2010, a write-up was done to give a history of May 12th. Their Facebook page has events and lots of info on Fibro and other conditions.

National Fibromyalgia and Chronic Pain Association are based in America and also support May 12th’s awareness day and have a map with links to events happening in the US.

Together Walks is another US charity that has been set up to raise funds for research and help people connect for May 12th Fibromyalgia Awareness Day.*  More than 700 live champions and thousands of online champions have joined Together Walks. Click here to register for live and virtual 2018 Together Walks as well as to create and join walk teams.  The Hub is an all-new website designed to help people create a fundraising event for fibromyalgia research and then promote it.

A few other events in the UK include –

Fibro Warriors Fibromyalgia Awareness Day Meal on Saturday 12th May, in Tameside.

Fibromyalgia Awareness is having a May Ball at Friern Manor on Saturday 12th May, in Brentwood.

Fibro PaIN is hosting a production of Invisible – One Woman’s Fight with Fibromyalgia -a play by CLM Productions and starring Charlie Maxx & Angie Walker about one woman’s fibromyalgia journey, on Saturday 12th May, in Renfrewshire.

If you have an event that has not been mentioned in this post please feel free to add to the comment section.

FIBRO BLOGGER DIRECTORY…

The Fibro Blogger Directory is a directory of people who blog about Fibromyalgia. Set up by Fibro sufferer Lee Good who says ‘Blogging is a powerful tool and by connecting we can be a stronger voice’.

The aim of the directory is to –

  • Connect fibro bloggers
  • Help raise awareness of Fibromyalgia
  • Provide information to the world wide web and other media about fibro bloggers
  • Offer Directory members support

They promote your sites on Tumblr which has an image from your blog and a link back to your blog for Tumblr visitors to see.
They also promote on Twitter where you can instantly connect to what’s happening in fibro land, as well as follow friends, experts, and get breaking news on fibro and chronic pain.

They have a busy Facebook page which features different bloggers daily.

Fibro Friday is a chance for you to join and help spread Fibromyalgia Awareness. Fibro Friday is a weekly link up by and for people with Fibromyalgia — A place to share and help others understand more about fibromyalgia.

There is also a store where you can buy Fibro books on Amazon 

Head down and join the list of Fibro bloggers and make some great friends in the process. Lee Good works extremely hard to help raise awareness of Fibromyalgia and to connect other fibro sufferers to join the community.

 

 

 

 

 

 

 

 

 

 

 

 

 

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.

HOW TO TRAVEL WITH FIBROMYALGIA..

I found this very interesting pin on Pinterest from The Viking Abroad blog who has written down her tips on how to travel with Fibromyalgia.

The writer Vibeke who is a travel writer and photographer is also a Fibromyalgia sufferer and so has to plan carefully for her trips around the world.

She comments that good shoes are the key which of course is essential. The latest ones that I have seen which are ideal for travel are Joya shoes. The positive effect of a soft, springy surface on the locomotive system has been put to good use by physiotherapist for a long time now and is a highly topical subject in the fields of prevention/rehabilitation. The Joya brand has developed a shoe which makes use of this principle. The soft, supple material of the patented Joya sole means the load on the sole of your feet is ideally distributed as you walk and stand instead of being concentrated only on certain spots.

Walk more in readiness for your holiday, and that means pounding the streets a bit with the correct shoes on to see how far you can walk without pain. Try and increase it a little every day as you would be surprised at how much more walking you do when you are away on holiday.

Sleep and rest enough ready for the travel which can drain you if it’s long haul.

Plan your first 24 hours so that you give yourself time to get over the travel which will then help you to enjoy the rest of your holiday.

Research your destination IN FULL.  Look if there are any steps and how many there are to get from a to be. Find out how far away you are from any of the amenities that are available.

One of the most important things to remember before you go away is to make sure you have enough of your medication for the whole trip. I once forgot to pack my Tramadol and was on a cruise and the medic on board could only give me it to me in drops format which frightened me to death as it was so easy to overdose. I have NEVER forgotten them since.

Finally some things to remember for while you travel include your travel pillow, memory foam or whatever suits you best, your flight socks if you are flying to your holiday destination,  and of course your lumber cushion, the latest

 Sciatica Pain Relief Cushion was launched at the recent Back Pain Show in Birmingham with rave reviews.