The A to Z of Fibromyalgia

The A to Z of Fibromyalgia

A is for Awareness

Over 2 million people live with Fibromyalgia in the UK but despite this awareness is low.

International Awareness Day - 12th May

UK Awareness Week - September (dates announced each year)

We appreciate your help to spread awareness, so please keep an eye out for campaigns and support them if you can, like for instance;

2017 International FMS/ME Awareness Day Campaign -

thunderclap.it/projects/565...

B is for Benefits

We understand the problems you face when you can no longer work & need to claim benefits. Many of us have been through the same struggles so really do understand.

If you become a member of Benefits & Work they will provide you with step by step guides about ESA PIP and Universal Credit. There are others resources that you can access for free online too via Turn2Us and Disability Rights UK plus you can visit your local Citizen Advice Bureau too.

Turn2Us (more information to follow)

Disability Rights UK (more information to follow)

Benefits & Work (more information to follow)

C is for Complementary Therapies

Complementary Therapies may be beneficial to some of you alongside conventional medication & other coping mechanisms. To find out more please visit;

arthritisresearchuk.org/art...

D is for Depression

Depression often occurs alongside Fibro and it is discussed at length by researchers & healthcare professionals whether it is a precursor to Fibro or occurs due to living with Fibro.

Depression often needs medication, counselling, cognitive behavioural therapy and a good support network. If you feel depressed you need to speak to your GP to get medical assistance, if you need to talk the Samaritans are available 24/7

samaritans.org

Free telephone number

116 123 (UK)

116 123 (ROI)

E is for Exercise

Gentle exercise like swimming, walking, Yoga, Pilates etc can be helpful in the combined approach to try to alleviate the symptom experience on a daily basis. Find out more here;

arthritisresearchuk.org/art...

F is for Flares

Whilst living with Fibromyalgia people may experience times when you notice an increase in the symptoms and this can prove to be very debilitating or can cause periods of disability. You may notice a trigger like stress, illness or after a bout of exercise that is not linked to your normal daily activity or exercise tolerance.

Lindsey Middlemiss, founder of the former charity FibroAction (now merged with Fibromyalgia Association UK as Fibromyalgia Action UK) wrote this post on her experience of flares and many have found it useful so I've shared the link below;

healthunlocked.com/fibromya...

G is for Genes

Is it hereditary or due to a genetic disposition? Many people have relatives who have Fibromyalgia in the family and also have been diagnosed themselves - some closely and other distantly related. So it's not surprising that many people believe it to be hereditary however research is leaning towards it to be more likely to genetic disposition therefore in the genes but usually a trigger is needed (stress, viral illness, trauma etc) to start the onset of symptoms.

ncbi.nlm.nih.gov/pmc/articl...

H is for Healthcare Professionals

Education, awareness and understanding between Healthcare Professionals can vary and during diagnosis it seems that many patients see many Consultants from Neurological, Rheumatology - meaning it often takes an proactive person to join the pieces of the puzzle together to then diagnose Fibromyalgia. To be fair to the medical profession, it is possibly a harder condition to diagnose due to lack of exact clinical indication ie showing in a blood test for instance - in some cases too the clinician orders the relevant tests to exclude other illnesses with similiar symptoms however timing to get referrals within NHS trusts vary and prolong diagnosis time.

To summarise a multitude of delays can sometimes be due to a delayed diagnosis including referrals, education, awareness etc however it should not be taking many years and we should be lloking at ways to ensure a more effective and timely diagnose it (including improving tests for Lymes, ME/CFS etc)

I is for Information

There are a few helpful resources where you can find great information about Fibromyalgia from many websites including registered charities.

afmcg.jimdo.com/useful-webs...

J is for Job/Employment

Working with a chronic illness (pain, fatigue & other symptoms) can be challenging especially with other commitments at home (family etc). Speaking to your Manager, explaining the condition, providing information and keeping them informed is key plus being aware of your rights.

Equality Rights Act 2010;

gov.uk/rights-disabled-pers...

Plus more information at Disability Rights UK

disabilityrightsuk.org/care...

K is for Know it takes time

It can be difficult being diagnosed with Fibro & it can take time for you to take it all in. Kubler Ross mentions the pathway to acceptance follows a certain pattern & this can be related to a diagnosis with a loss of former health, independence & capabilities.

On this road both the newly diagnosed & family can go through stages of denial, anger, depression & acceptance. This road is longer for some than others, however we've all been through it so do speak to others with Fibro as you learn to adjust to living with Fibro.

Try not to beat yourself up and give yourself the time you need.

L is for Living in Chronic Pain

Many people will understand what it it like living with long term pain ranging from Fibromyalgia to Arthritic conditions and many more ailments. To help advise you about how to cope with chronic pain, please see link below

;

arthritisresearchuk.org/art...

M is for Medication

A combined approach of medications, gentle exercise, complementary therapies are reported to be the best way to manage Fibromyalgia. As we know, getting the correct pain relief to combine these other therapies into your coping mechinisms and regimes is vital.

If your pain relief is not adequately controlled, please speak to your Healthcare Professional or you can request a referral to a Pain Clinic (see P for Pain Clinic below)

nhs.uk/Conditions/Fibromyal...

N is for Neurotransmitters

Most research is pointing to Fibromyalgia being a Central Nervous System and that pain is likely to be a problem with certain Neurotransmitters below;

Serotonin, Melatonin

, Dopamine, Norepinephrine

, GABA & Glutamate

Often research discusses a Central Sensatisation - a condition of the nervous system that is associated with the development and maintenance of chronic pain. See link for more information;

myalgia.com/Pain_amplificat...

O is for Opioids

There is much discussion around the use of about Opioid treatment, as many find initial relief from a prescribed Opiate medication only to find a certain tolerance & a need for more to have same pain relieving effects. This could be down to recent key findings that people with Fibro have reduced Opioid receptor availability, which may explain why some find Opioid medication ineffective in treating their pain experience.

Therefore the risk associated with Opioids & dependency with a medication likely to be ineffective usually means stronger opioid medications are les frequently prescribed. If you take high dose Opioid medication with little effect it may be worth discussing this with your Doctor & if agreed start a weaning off period with medical advice about lowering doses appropriately. Do not stop any medication without consulting your Doctor.

There can sometimes be an exception to every rule as they say! Tramadol an Opioid medication is used for the treatment of Fibro and it is discussed whether this is effective may be due to it's pharmacological effects with a serotonin pathway, research continues. Therefore, Tramadol is recommended in the treatment of Fibro, find out more about this and other medications here;

P is for Pain Clinic

If your GP has recently done a medication review and your medications are not providing adequate pain relief, you may find asking to be referred to a Pain Clinic may help. Please see link with information about pain clinics here;

nhs.uk/Livewell/Pain/Pages/...

Q is for Questionnaire FIQ

Many living with Fibromyalgia like to keep a diary of their symptoms, a Fibromyalgia Impact Questionnaire (FIQ) can be used as a helpful tool to do this, link below;

fiqrinfo.ipage.com/FIQR%20F...

These are sometimes used by Rheumatologists in the hospital environment in some areas to evaluate the patients pain, fatigue & impact on activity of daily living.

R is for Referrals

Don't forget you can asked to be referred to a Rheumatologist, Neurologist, Pain Clinic, FMS Clinic London etc. If you think it will benefit your healthcare experience & long term care of your condition. If your GP is reluctant or doesn't think it necessary and you would prefer to be seen by a specialist you can write to your Practice Manager.

Advice on how to do this can be found via the links below;

citizensadvice.org.uk/healt...

which.co.uk/consumer-rights...

You can find a template letter to help you here;

which.co.uk/consumer-rights...

S is for Support Networks

Visit, read & participate in our discussions, polls & posts in our AFMCG Community. We are pleased to say we get great feedback from people using our community about the content & the lovely members who show friendliness & support to others. There is information for newly diagnosed ranging to people who have lived with Fibro for many years, knowledge is passed between each other as we try to battle with Fibro

The more you participate the more you will gain from it, so please use the community as a support for advice as you learn to live with Fibro & help others in the process! Please do read & abide by the guideline there for the benefit of you all, as it helps to make the community a good place to be!

Finding a support network and others with Fibro to talk to can be a real lifeline, you can find out about local support groups here;

ukfibromyalgia.com/pages/su...

Don't forget the Fibromyalgia Action UK (FMA UK) HealthUnlocked Forum is a great resource too!

healthunlocked.com/fibromya...

T is for Trial & Error

If anything we seem to have learnt from talking to others living with Fibromyalgia is that certain medications & therapies may work for one individual & then not for another person. I'm afraid it appears to be trial & error to what works for you personally to take control of the symptoms you experience everyday.

A combined approach using medications, complementary therapies, relaxation, pacing, counselling/CBT and other coping mechanisms seems to work best as we live with Fibro.

U is for Understanding certain triggers

We all seem to experience increased symptoms in times of stress to the body whether physical (ie illness, virus, common cold) or whether it's other stressors like worries we all experience in life from time to time. Find out more via link below;

arthritisresearchuk.org/art...

Don't forget to try to do things you enjoy & relax when you need to!

V is for Vitamins & Deficiencies

Some people with Fibro are treated for many different deficiencies, the most discussed on the community being Vitamin D, Magnesium, B12 among others. If you haven't had a recent blood test and have noticed a deterioration in your Fibro symptoms despite being on the same treatment , you may need to consider asking for a blood test to check for deficiencies as some can make your Fibro symptoms worse!

If you want to take supplements of any kind as a boost of vitamins & minerals don't forget to speak with your GP. Also if you are on a elimination diet of any kind, you may want to check the ingredients of the supplements or go maybe take organic vitamins.

W is for Warm Water Therapies

Hydrotherapy has been widely reported to have some benefits and may be helpful alongside a combined approach towards alleviating symptoms. Please see link below for further information;

nhs.uk/Conditions/Fibromyal...

X is for Xrays, Tests & Medical notes

In your quest for a diagnosis you've had many tests and unfortunately many of us have been here too, often waiting years to be told they have Fibromyalgia. Don't forget you can access your medical notes if you wish to & also ask for a second opinion if necessary. Links to helpful information below;

Access to medical notes;

nhs.uk/chq/pages/1309.aspx?...

Second Opinion;

nhs.uk/chq/Pages/910.aspx?C...

Y is for Yo yo-ing!

Do you have good periods only then to yo - yo back down with a bump? Do you think you do too much when feeling up to it?

This certainly seems to be cycle most people living with Fibro have experienced at some time, also known as Push & Crash or Boom & Bust. Here's a post about this that may be useful;

Z is for Zzzzzzzzzzz Yes you've guessed it Sleep, in particular the Non refreshing sleep.

Disrupted sleep that has been one key finding in studies relating to Fibro

Trying to have a good sleep ritual can be helpful, like bathing before bed (maybe using Epsom salts), hot drink, good environment, being comfortable, going to bed at the same time each night, relaxation, massage etc. It may be that you require medication to sleep, find our more here;

nhs.uk/Conditions/Fibromyal...

Hope this helps - Please share

Written by myself, founder of AFMCG

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