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Useful Information

These articles contain information that you may find useful. It could be travelling with your fibro or preparing for a Dr's appointment.

Coping with the Symptoms of Fibromyalgia Whilst Working

Many people with fibromyalgia continue to work full or part time. But the chronic pain and fatigue associated with fibromyalgia often make working very difficult. If you are employed, it's important to learn about managing fibromyalgia symptoms and coping with pain and fatigue. It is important to also work out a daily regime that suits both you and your symptoms. It is important for example to rest when you can and not to overwork yourself. Not only does this lead to stress but stress can then trigger what is known as a ‘flare up’.

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Fibromyalgia Facts


Fibromyalgia Facts

General Introduction

Fibromyalgia (FM for short) is not a life threatening illness but is often life changing.

It does not necessarily affect everyone in the same way

It is a condition that is often invisible to others, however, research supports that FM is a distinct clinical condition.

FM is recognised by the Department of Health and is listed on the NHS Direct website.  The more you know about the illness, the easier it is to cope with.

Possible feelings after Diagnosis:

Relieved that you have been given a positive diagnosis that something “real” is wrong with you.

In “no man’s land” because you do not really know what your next step should be, or indeed where to go to get information and help.

What does the Word Fibromyalgia Mean?

Fibromyalgia is possibly a word that you have never heard of before.   What does it mean?

Fibro = Fibrous Tissues (tendons & ligaments)

My = Muscle

Algia = Pain 

What is Fibromyalgia?

Fibromyalgia is a condition of:

  • Chronic widespread pain/chronic pain amplification
  • fatigue

The pain involves mainly:

  • · muscles 
  • · tendons tendons hold muscles to bones
  • · ligaments ligaments hold bones together
  • · bursa a bursa is a fluid filled sac that decreases the friction over joints 

The muscle pain fluctuates and is often aggravated by:

  • various physical factors
  • environmental factors
  • emotional factors.

In addition to widespread pain and fatigue, fibromyalgia can be associated with:

  • irritable bowel syndrome
  • fluctuating stiffness
  • numbness
  • a feeling of weakness
  • cold intolerance
  • poor sleep
  • headaches
  • chest pain
  • cognitive difficulties
  • sensitivity to light, smells, temperature and sound
  • dizziness (balance problems)
    • anxiety/panic attacks

It can be called a “Head to Toe” condition.


 

Fibromyalgia is NOT: 

  • Fibromyalgia can cause symptoms that resemble arthritis or neurological disorders, but it is different from these disorders.
  • Unlike arthritis, it does not cause the joints to swell or become deformed, even though it may cause pain in the tissues or a feeling of swelling around a joint.
  • It does not cause paralysis or progressive neurological  problems
  • It is not crippling
  • It is not a ruptured disc
  • It is not a pinched nerve, even though the symptoms may resemble those caused by a pinched nerve
  • It is not a tumour
  • It is not life threatening—despite what the pain may be telling you
  • It is not all in your head
  • It is not a mental health problem
  • It is not a “new” disease or some recent “medical” fad

It does not turn into one of the above mentioned conditions

However:

People with fibromyalgia may look okay on the outside, but are definitely hurting on the inside. 

What are the Characteristics of Fibromyalgia?

  • Seen in about 2% of the population, affects men, women, and children of all ages, races and economic levels, according to Government statistics 14,000 people are diagnosed annually.
  • Onset of symptoms can be at any age, but mainly from 20-60 years of age.
  • Mild to incapacitating,  no two people are the same
  • Variable chronic symptoms
  • Pain changes location
  • Affects women more than men in the ratio: 9 to 1

How common is Fibromyalgia?

Fibromyalgia is a common illness. In fact, it is as common as rheumatoid arthritis and can be more painful.  People with mild to moderate cases of fibromyalgia are usually able to live a near normal life, given the appropriate treatment.

If a person’s symptoms are more severe they may find that they

  • have to greatly modify their typical day,
  • or find themselves not being able to hold on to a job
  • or enjoy much of a social life

What Causes Fibromyalgia?

Some possible triggers of FM are:

  • some sort of trauma such as a fall or car accident
  • a viral infection
  • hormonal problems
  • an operation
  • muscle physiology problems—decreased oxygen supply to muscles may account for some of the pain mechanism
  • or it begins without any obvious trigger

It is a complicated condition:

  • which often has more than one factor involved
  • may even stem from a genetic predisposition
  • triggers may be recognised, but the exact mechanism of how fibromyalgia develops from any trigger is not fully known
  • it is an “end point” condition with multiple paths leading to it

Latest research has identified:

  • a deficiency in Serotonin in the central nervous system and
  • a resulting imbalance of Substance P (a transmitter substance that sends pain messages to the brain)

The effect of this is:

  • disordered Sensory Processing (the brain registers pain, which is amplified, when others might experience a slight ache or stiffness)
  • Research now strongly indicates that a central nervous system dysfunction is primarily responsible for the increased pain sensitivity of FM

With these advances come the hope that a cause may be found and hence a cure, or at least more effective treatment.

 


Will the Pain Worsen?

People with fibromyalgia have physical abnormalities that result in pain amplification, causing pain to be perceived even when they are exposed to sensations that would not normally cause pain i.e. wearing certain items of clothing, a touch on the arm or even a bright light can cause extreme pain & fatigue.

  • The pain usually consists of generalised aching, it can be described as stabbing, burning or even cramping – a sense of “I hurt all over”
  • certain parts of the body may be particularly painful
  • the pain may move around and be accompanied by muscle spasm
  • the pain can fluctuate from day to day, even hour to hour
  • everyone with fibromyalgia will experience worsening of their pain from time to time; that is part of the illness
  • usually the worsening is temporary, and is known as a flare-up, we can’t stop this from happening, some people have frequent flare-ups others don’t
  • usually we can identify the cause of the increased pain, if not, we call the flare-up spontaneous
  • sometimes flare-ups happen even when we have taken care to handle everything we do correctly.  We simply have to deal with them as they occur and try to accept that these intrusions are part of the condition

When you don’t feel well how do you know if it is because of  Fibromyalgia or something else?

The impact of fibromyalgia differs in type and severity from person to person. FM does not preclude the possibilities of you suffering from other medical conditions. You should never assume that everything that you are experiencing or feeling is because of fibromyalgia.

Because FM is associated with:

  • widespread pain in all parts of the body including the chest and abdomen
  • as well as severe fatigue

it is often difficult to know whether symptoms are related to FM or caused by another medical condition.

Acute pains, shortness of breath, and high fevers are your body’s warning signs which you should not ignore.

If you are experiencing any new symptoms:

The GOLDEN RULE” must be to check them out with your own MEDICAL PROFESSIONALS.

Similarly if you feel that:

  • the treatments
  • medications

that you are receiving are not helping you manage your condition you will need to discuss this with your own medical professionals

Relaxation Technique for Fibromyalgia.

Finding a relaxation technique that you can use is a very useful tool for people with FM. Relaxing your body can help with pain levels as the more tense you are the worse the pain will get. Relaxing your mind can help with stress, anxiety and depression, you can learn to ‘push’ your worries to one side and a calm mind can help you think more clearly, rationalise your thoughts or just chill out for a while.

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Survey of Five European Countries: prevalence of fibromyalgia.

A recent survey was carried out across five European countries, France, Germany, Italy, Portugal, and Spain, to estimate the prevalence of fibromyalgia in the general population. The London Epidemiological Study Screening Questionnaire was administered by telephone to a sample of the community over 15 years of age.

It was also submitted to all outpatients at 8 participating hospitals. Those who met one of 2 criteria either:

  • having a 4 pain criteria or
  • 4 pain and 2 fatigue

were then examined by a rheumatologist to check for fibromyalgia. The questionnaire was also submitted to all outpatients referred to the eight participating rheumatology clinics for one month. These patients were examined by a rheumatologist to confirm or exclude the FM diagnosis according to the 1990 American College of Rheumatology classification criteria. The prevalence of FM in the general population was estimated by applying the positive-predictive values to eligible community subjects (ie, positive screens).

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Rough Guide To Accessible Britain 2009 Launched

Free guidebook to Britain’s best venues for disabled people available now  The new Rough Guide to Accessible Britain has launched, containing details of over 175 of the UK’s best attractions catering for disabled people.

Available FREE to Blue Badge holders from www.accessibleguide.co.uk, the guide features everything from the Scottish Gliding Centre for ‘walking on air’ experiences, to shopping in London’s Spitalfields market. The guide, updated and enlarged for its second year, was compiled by an army of disabled writers across the country, as well as readers of the first edition of the guide who answered a call from the publishers to give details of their favourite days out.

Developed by Rough Guides in association with Motability Operations - the company that manages the car scheme for disabled people in the UK - the new book is crammed with fun ideas for holidaymakers taking into account their mobility or accessibility considerations.

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Do You Struggle to Find Travel Insurance?

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Having a pre-existing medical condition like fibromyalgia can make it difficult to secure comprehensive travel insurance at a reasonable premium. You can be penalised for taking medications, being on a hospital waiting list or having more than one illness, leading to astronomical premiums, huge excesses or even a refusal to cover you at all.

Due to these problems some travellers, understandably, often avoid sharing their medical history and end up travelling uninsured, leaving the gate open to some frightening situations. Did you know that in the USA, for example, it can cost up to £5,000 per day just for your bed, before you have even seen a doctor? You simply can't afford to travel uninsured, but how do you find a reasonable deal with a reputable firm?

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