FibroAction Fibromyalgia A to Z

FibroAction Fibromyalgia A to Z

Hello All, it's good to be back! Check out this Fibro A to Z! :) 

A is for awareness 

Approximately 2 million people in the UK live with Fibro, despite this awareness is low. 

International Awareness Day - 12th May

UK Awareness Week - September (dates announced each year)

We, at FibroAction appreciate your help to spread awareness together through various avenues:

At home by using social media; like our Facebook page ( facebook.com/fibroaction ), follow our twitter ( @fibroaction ) and spread our information & articles. 

Buying & wearing our wristbands, link below;

fibroaction-public.sharepoi...

Emailing us ( info@fibroaction.org) for leaflets & flyers to be put up in your local area, hospitals, GP surgeries, Citizen Advice Bureau etc

B is for Benefits

We, at FibroAction know the problems you face when you can no longer work & need to claim benefits. Many volunteers for FibroAction have been through the same struggles so really do understand. 

FibroAction have helpful step by step guides about ESA & PIP, if you would like them they can be sent out to you via email. So, all you need do is email us & we'll send them to you asap.

info@fibroaction.org

Here's a link to our website about benefits (due to be updated);

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C is for Complementary therapies

Complementary Therapies may be beneficial to some of you alongside conventional medication & other coping mechanisms. You may find the find the following link to an information booklet helpful;

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D is for Depression

Depression often occurs alongside Fibro and it is discussed at length by researchers & healthcare professionals whether it is a pre cursor to Fibro or occurs due to living with Fibro. Depression often needs medication, counselling, cognitive behavioural therapy, support networks etc

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/

Telephone Number: 08457 90 90 90

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. You can find information on Exercise in our Expert Patient Series, here's the link;

fibroaction-public.sharepoi...

F is for Fibromyalgia

Fibromyalgia name explained;

Fibro is for Fibrous Tissue - the areas that are affected muscle, ligaments & tendons are made from Fibrous tissue

My is for muscle

Algia is for pain, ache & discomfort

G is for GP"s

Finding an understanding & knowledgable GP can be difficult, information about Doctors can be found via links below;

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If you know a really good Fibro Friendly GP, please let us know their details for our directory so others in your area can be informed of the best GP's in the area. Email us using info@fibroaction.org

Here's the Directory;

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H is for HU Community 

Visit, read & participate in our discussions, polls & posts in our FibroAction HU 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

Our volunteers who help run the community do a fantastic job and try to post information, lighthearted posts and fun activities to bring the community together. The more you participate the more you will gain from it & with over 14,000 members many different interesting subjects are covered. 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! 

I is for Information 

We, FibroAction have information leaflets on our website that are evidenced based and carry the Information Standard Certificate ( england.nhs.uk/tis/ ) Here's the link to our information 'All about Fibro' section on our website;

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The HU community also has a FAQ section where many of these links occur in posts in answer to a specific question which may be helpful

J is for Job / Employment 

We, at FibroAction know many living with Fibro sometimes struggle with employment issues. We have information on our website that may help & can send guides out to you via email about your rights & reasonable adjustments. Here's the link & our email address;

fibroaction-public.sharepoi...

info@fibroaction.org

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 Learning 

Learning to listen to our bodies in order to live with Fibro can be helpful, here's some information from our Expert Patient Series;

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M is for Medication

See evidenced based information about Medications here in this FAQ HU post as it contains all relevant links to our website;

healthunlocked.com/fibroact...

We also have this information from our Expert Patient Series on our website;

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N is for Nutrition

Many people whilst living with Fibro change their nutritional habits in the aim it will help decrease symptom experience. We discuss diet in our Expert Patient series, found here;

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O is for Opioids

There is much discussion here on the FibroAction community 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. See key findings here;

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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 - link here;

fibroaction-public.sharepoi...

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, link with information about pain clinics here;

healthunlocked.com/fibroact...

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 - Dr Jenner 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 do the following, see link;

healthunlocked.com/fibroact...

S is for Support Networks

Finding a support network and others with Fibro to talk to can be a real lifeline, we have a list of independent support groups that can be found around the UK, here's the link;

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Don't forget this FibroAction HU Community can a great support too! 

T is for Trial & Error 

If anything we seem to have learnt from our FibroAction community is that certain medications & therapies can work for one & then not for another person living with Fibro. 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. 

Here's a link to our website page discussing Fibro prognosis;

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U is for Understanding certain triggers like stress etc

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. Here's a link which may be of interest;

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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 & others, here is a link discussing this;

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W is for Warm Water Therapies

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 & 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.

X is for Xrays, tests & medical notes

In your quest for a diagnosis you've had many tests and 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 on our community;

healthunlocked.com/fibroact...

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

Disrupted sleep is a key finding, as discussed here;

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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 

You may find medication to help with sleep is needed, here is information about some commonly used medications;

fibroaction-public.sharepoi...

Hope you've found this useful - Please note this is intended to be shared on our FibroAction social media accounts - Facebook & Twitter

Hope you are all having a pain free day as possible & the fatigue is behaving too :)

Best Wishes

Emma :)

FibroAction Administrator

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19 Replies

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  • Truly Outstanding! :D

    Thanks, MDaisy!

    Crazy_horse

  • Thank You CrazyHorse for your comments :) Took me a good couple of hours to write if I'm honest! But had an A to Z idea and thought it might be helpful to all those with Fibro especially the newly diagnosed.

    I have put on FB & Twitter so hopefully people will share to get the information to those who need it most. :)

    Any other ideas for FAQ or information posts please do mention them

    Emma :)

    FibroAction Administrator

  • Hi Emma, so good to see you again ....... It's been ages 😳

    Sending you lots and lots of positive healing vibes, and thank you so much for the comprehensive list above, very very useful thank you 😊😊

    Foggy x

  • Hello Foggy,

    Glad you think it will be useful - Thank you for positive vibes too.

    I'm glad after several bouts of sinusitis & viruses I am feeling better altough maybe still a bit fragile. So nice to chat to you, I've missed the community & you all x

    Emma :)

  • {{{{{{{{{{{{Emma}}}}}}}}}}} 😃😃😃

  • Hi MDaisy,

    Only a couple of hours? Brilliant work!

    Is this something you might "pin" here for all to reference, as it otherwise eventually gets buried by new posts?

    Crazy_Horse

  • Will pin it for sure! :D Thank You again *Blushes :)

  • Great! :D

    Many will benefit!

  • Very useful tool M :)

    Thanks for taking the time to compose it.

    It would make a great foldy out leaflet to hand out at events I think :)

    xxx sian :)

  • Thank You Sian :)

    Hope people do find it helpful :)

  • Welcome back its great to see you, so to speak.

    I have already shared on fb . :P

    Hugs sue xx

  • Hello Sue,

    Thank You for the welcome back! :) Hope you are doing well

    Thanks for sharing on FB, much appreciated

    emma :)

  • Lovely to have you back :)

    Thank you for the A-Z it s very informative :)

  • Thank you for such a wonderful post.

    All my hopes and dreams for you

    Ken x

  • Hello Tiredalot,

    Thank You for the welcome back, you are feeling well I hope.

    Thanks for the comments re A to Z , hope it covers a wide range of issues & provides the links to the website to easily find the information they need :)

    Emma :)

  • Thanks Ken - Hope you are doing OK :)

  • Morning M ,

    A-Z is a great facillitating tool Thals for putting it together for us all! :)

    Keep smiling

    Ginsing

  • Thank You Gins - Sending smiles right back to you :)

  • That brill.xx

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