September is Pain Awareness Month

There are going to be many campaigns during September and October for Pain and Chronic Illness Awareness from a whole variety of organisations, and charities, for many differing illness / diseases / disorders that cause chronic constant pain.

In honour of International Fibromyalgia Awareness Week and Pain Awareness Month this post will focus on Fibromyalgia and one of our, ‘Mother Hosts’, the charity FMAUK (Fibromyalgia Action UK). 

Okay, so we’re a little late!…

… Better late than never!!

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It is an interactive post meaning if you click the BLUE links within the text it will open up a new page to a description, explantion, place for information, or, a charity organisation such as this first one a Fibromyalgia Patient Booklet by FMAUK   😀

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Fibromyalgia is a chronic pain disorder, which leaves the patients feeling varying kinds of pain all the time, and, they cannot rid themselves of the pain completely.  This means they battle every day not knowing how bad their pain levels will be, or why, or, which part of their bodies will be causing the pain, and/or, other health problems,such as Chronic Fatigue Syndrome (CFS), or, Irritable Bowel Syndrome (IBS), for instance.

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If you are newly diagnosed, or, think you may have Fibromyalgia it may be worth your while checking out the following link to A Fibromyalgia Charity ~ Fibromyalgia Action UK (FMAUK). 

FMAUK Home Page

It is a small self funding charity run predominently by volunteers who also have fibromyalgia, or, other connections to it.

On the FMAUK website you will find a lot of things all related to the charity, and, also Fibromyalgia, explanations regarding what the illness is, symptoms, diagnosis, treatments, medications through to how to live and manage the condition around your daily life.

They gather, and, help to fund fibromyalgia research, spread awareness through awareness packs and help to educate people about fibromyalgia too.

There are downloadable leaflets, and, information packs that you can request, there’s even one designed for your GP   🙂

FMAUK- Order your medical packs here

Yes, we do have to make a few lifestyle changes some of which some are very difficult and stressful!  Keeping stress low is hard but an essential tool when trying to keep pain levels down.  Having a support network can help you find fellow sufferers and make new friends but also give you an avenue of support when you need it during those very difficult times..

You can even find out who your Local Support Group Regional Co-ordinator is who could help you find a group to join.

FMAUK – Where to find your Support Group Regional Co-ordinator

Find out more about who the charity are and what they are all about via this link

FMAUK – Who are we?

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Which of these do you recognise?

 

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Patients can only ‘learn how to manage their pain’ through the use of treatment plans that include ‘varying medications, therapies, treatments and consultant appointments by seeking help and advice from their doctors. 

The combination of trying to find out what is causing all the problems, and, not knowing how to treat those problems because there isn’t a proper diagnosis means that some treatments and therapies frequently aren’t available…..

…… CATCH 22

This situation that we end up in as patients, usually, involves years of different medications and therapies for all kinds of health problems, which in ‘my personal experience’ some did get worse whilst I was waiting for diagnosis because I couldn’t get physiotherapy, or, hydrotherapy.

Another problem with Fibromyalgia is that it is often seen/viewed as being an invisible illness  (as well as a chronic illness) because it is frequently rejected by medical professionals as a diagnosis because they do not believe it exists as a physical condition, but, rather a psychological one instead.  

Fibromyalgia is also a chronic illness as it lasts longer than 3 months and also because it doesn’t go away like a cold or a stomach bug.

When you take all those things into consideration alongside the fact that fibromyalgia patients often don’t look sick, their test results frequently show good health alongside x-rays and scans that show nothing, it is easy to ‘see’ the ‘invisibility’. 

Patients can often wait years before being diagnosed because the signs and symptoms  of Fibromyalgia mirror those of many, many, more invisible illnesses, including MS, Lupus, EDS, JHS, HMS, and Lyme Disease, just to name a few.  Many tests and assessments are had by Fibromyalgia patients just in order to rule out other illnessess, there isn’t a simple test, YET, that helps to diagnose it.  However, there a few tests being researched / trialled such as a blood test but it currently isn’t seen as viable enough yet.

You can read about the test via this link  –  The Fibromyalgia Test HomePage

Another knife in the side is that we must be making it all up and it’s all in our heads… because we don’t look sick!


Support site for those who don’t look sick with invisible illness as well as those who support and care for them.

Because you don’t look sick – Support for people with invisible illness


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It can also be easy to develop Depression, and/or, Anxiety  from the constant criticisms, disapointments after tests / assessments, self-doubt, hurtful accusations, and, of course the ‘fatigue – pain cycle’ too.   Lifestyles change and relationships end because friends and family don’t believe they’re sick whilst life with chronic pain just persists.  The constant pain is known to help cause Chronic Fatigue Syndromes in many Fibromyalgia Patients and some even have ME (Myalgic Encephalopathy). a well known crippling illness which is also fighting for legitmacy like fibromyalgia.

Yes, it all sounds pretty awful doesn’t it when you read about it? 

A fantastic reason to think positive, and, be positive, you can start by remembering that you are not alone, or, invisible.  🙂  Helping to raise awareness of this chronic illness will help to lift the stigmas.

 

ME CFS DIAGRAM

CLOSING NOTES

Fibromyalgia is an exhausting and challenging health condition for any person unfortunate enough to develop it, no matter how they have developed it.  The cause of this illness is still not verified, though research is happening and Patient -Doctor Pathways are being developed and  improved, all be it very slowly!

We as warriors can help research to progress by raising awareness, and, helping charities such as FMAUK to raise the much needed funding for such research to happen, educational literature for us and the medical professionals.  

You can help FMAUK in many ways if you wish to join in and this following link provides you with how you can help them

How to help FMAUK – Get Involved

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Many thanks for reading

Wishing you wellness & less pain

Carole Sian | Co-Founder FibroFlutters Registered support group with

FMAUK


INTERESTING READS

www.newsinhealth.nih.gov issue (feb2016) Focusing on Fibromyalgia A Puzzling and Painful Condition

www.webmd.com ~ Fibromyalgia Health Centre -fibromyalgia diagnosis and misdiagnosis

www.nationalpainreport.com _ Research based article claim breakthrough in fibromyalgia-study


USEFUL LINKS

ACR Fibromyalgia Diagnostic Criteria -Family Practice Notebook

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September is Pain Awareness Month

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