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Yvonne Scott: My struggle with fibromyalgia

I was diagnosed in my mid-twenties but had suffered increasing symptoms for over several years before.  I used to do long distance running and cross country races for School and once I left school and started working I went to the gym 4 times a week and swam a mile 3 times a week but gradually I found I could do less and less until I could barely walk some days.  I managed to continue to work full time until I was 45 but by then I had spent about 10 years on crutches, I have 'smart' crutches that distribute the weight and pressure along the forearm and take the pressure of the hands and wrists as I also have osteoarthritis and psoriatic arthritis.  As my condition has deteriorated as the years have gone on, I have lost friends and then family who didn’t or wouldn’t understand what was happening me.  If it wasn’t for my new husband (married 2 years) and his family I wouldn't have anyone.  2 years ago, I joined the local Fibro support group and have made some new friends who understand and accept my limitations and unreliability as they are dealing with the same.

It took several years and many, many tests before I got my diagnosis (35 years ago) and once everything else was eliminated I was told it had to be Fibro and that there was nothing that could be done about it so to go away and get on with it

Fibro is a robber - it has systematically robbed me of my fitness, looks, friends, family, ability to work and my independence.  I am still relatively young, 52, but feel much older and I am dependent on my husband for a lot of things, I now have to use a wheelchair a lot of the time, I have difficulty washing and dressing at times and a lot of the housework is beyond me these days.  I am fortunate that he is so loving and understanding, I was already severely affected by the time we met so he knew what he was getting into.  1 year ago, he changed jobs to a part time role much near to home so as to be able to help me more and take care of me.

Danny Williams becomes an FMA UK ambassador

We’re delighted to announce that Danny Williams is now an official ambassador for FMA UK.

Danny is a fashion model and fitness enthusiast who most recently appeared on 2019’s Love Island. A firm favourite in the media, Danny wishes to use his platform to build awareness of Fibromyalgia for reasons that are very close to home. Danny has witnessed the effects of Fibromyalgia first hand, with his mum suffering with this condition for over 15 years.

We look forward to working with Danny in our shared goal of raising awareness and promoting support of research for those experiencing this debilitating illness. #BecomeFibroAware

 

 

Positive mindset against fibromyalgia

Following a recent post, FMA UK would like to highlight some thoughts which we feel will be of benefit to the community. Fibromyalgia impacts everyone in different ways – the severity can range from people who are bed bound to people who are able to live an active life, with some adaptations. People with fibromyalgia are young, old, underweight and overweight fit and unfit, male and female, newly diagnosed and had it for years, and some have relatively less severe pain and others have severe pain. 
 
Just as it can impact people differently, sufferers may also find that different things work for them i.e. exercising, certain medications etc. 
 
It is an extremely frustrating condition to live with, but because some people may share advice which works for them which doesn’t necessarily work for you, it doesn’t mean they are wrong. Many people pointed out a previous post that dismissing other’s struggles with the condition wasn’t helping support them and we would agree with this. 
 
Awareness levels are not anywhere near where we would like them to be, but they are increasing and we are trying new ways of making people aware. As a charity which focuses on supporting all of those with the condition, we believe in trying to keep morale high and aim to be positive in what we post – many of those with the condition seek positivity to try and brighten their day so we try and proactively keep a positive look on our social media. We also strive to be accurate and evidence based and our literature is based on the Information Standard process.
 
People have contacted us previously telling us that a support group or online forum was not for them as it was too negative. We need different support channels for different people as people need different things. But, it is never right to dismiss someones diagnosis because they can do more than you. We have newly diagnosed people contacting us doubting their own diagnosis because they do not fit with what others are saying about fibromyalgia online. These people need support and information that relates to them so they can help themselves.
 
It is tough. There is no denying that. Living with a chronic illness is a massive challenge – from having people doubting it to medical professionals who are dismissive – there are a lot of things which can frustrate and annoy those who are suffering from pain. But as a community, sticking together and supporting and encouraging each other is the right way to increase awareness of fibromyalgia. We hope that we can be a positive movement for those living with fibromyalgia and want to emphasise that we are all here to support one another in their fight against the condition. 
 
#TogetherAgainstFibro #WeAreNotAllTheSameButWeAllHaveFibro

Christmas with fibromyalgia

The Christmas period is now upon us and everywhere you look, you'll be reminded of it! It can be an extremely hectic time of year and we want to share some advice and information to make sure you don't get caught up in it too much.  

FYI - Our head office and national helplines will be closed over the festive period. However, our online forums on Health Unlocked and our website will be active, and emails can still be sent to the office. https://healthunlocked.com/fibromyalgia-action-uk, www.fmauk.org/forums and This email address is being protected from spambots. You need JavaScript enabled to view it..  

 

Plan ahead 

Make sure to try and pace yourself and don't leave tasks until the last minute. Rushing about and stress can make fibromyalgia symptoms feel worse and can lead to flare-ups, so it is important to try and make sure you are prepared. Whether it be ordering in Christmas dinner just now or buying presents, try to avoid leaving it until the last minute.  The same could be said for New Years and planning for any potential parties/gatherings etc.  

 

Be aware of GP closures  

Ensure you check with your GP or surgery to find out about when they will be closing. Make sure you stock-up on prescriptions for over the holidays so you do not run out. It is important to be aware of this - different surgeries may close on different days so it is best to check. Many will be closed on days such as Boxing Day, New Year's Day etc.  

 

Time for yourself 

At Christmas, things can seem very busy and fast paced with dinners, family parties etc. and it can all seem too much at times. It is important to relax and try and unwind if you can. Taking baths, watching films, reading or even just listening to music - whatever way you enjoy relaxing, try and take some time to do it.  

 

Important organisations 

Our national and benefits helpline will be closed over the Christmas period. If you need urgent advice on health, we recommend you use the NHS 24 Service by phoning on 111.  

Not everyone enjoys themselves at Christmas and many people may feel down. If things are getting on top of you and you wish to speak to someone, the Samaritans are available 24/7 all year round to provide emotional support. They can be contacted on 116 123 or if you don't wish to speak via the phone, you can email them at This email address is being protected from spambots. You need JavaScript enabled to view it. and there should be a response within 24 hours.  

 

Christmas reflection  

Living with fibromyalgia is challenging all year round, and at Christmas it is no exception. Christmas, however, can bring joy and happiness. Many people will be struggling with pain etc. but small things such as seeing children's excited faces when opening their presents or sharing Christmas dinner with friends and family can boost morale. It is important to try and think of the positives which the festive season can bring. 

NICE guideline publication – Cannabis-based medicinal products

Just to inform you that NICE have published their guideline on cannabis-based medicinal products. These can be found here: https://www.nice.org.uk/guidance/ng144.

We are very pleased to see that fibromyalgia has been explicitly mentioned as the first key recommendation for research, quoted as follows:

1 Fibromyalgia or persistent treatment-resistant neuropathic pain in adults

For adults with fibromyalgia or persistent treatment-resistant neuropathic pain, what is the clinical and cost effectiveness of cannabidiol (CBD), containing no, or traces of, delta-9-tetrahydrocannabinol (THC), as an add-on to standard treatment?

To find out why the committee made the research recommendation on fibromyalgia or persistent treatment-resistant neuropathic pain in adults see rationale and impact.

Rationale and impact
People who have fibromyalgia or persistent treatment-resistant neuropathic pain are often taking high doses of medicines for pain relief over long periods. These can cause nausea, drowsiness, mood disturbance and fatigue. The committee noted that this is a significant population of people with chronic pain (around 15%). They therefore made a research recommendation for CBD in adults with fibromyalgia or treatment-resistant neuropathic pain.

No doubt that Fibromyalgia Actions contributions during the scoping stage contributed to this. We believe it is a positive step for us to see that they’ve acknowledged the importance of work in this area. Our expectations are still realistic, and evidence will take time. We will be supporting future initiatives for this research and projects like ProjectTwenty21.

Gudrun Berry: My experience with fibromyalgia

I was always a very active and busy member of the community, having no problems multi-tasking and juggling various things.

I was less and less able to function and fulfil my work requirements.  The process took over one year and ended with a disciplinary hearing, where I was told in no uncertain terms that there are only two ways:  either I'm ill and then need to be signed off work or I'm not ill and have to do my work as required.  My GP was very helpful and also the Occupational doctor from the HR department.

It has taken me several years to come to terms with the slow pace of life and the narrowing of activities.  After several operations because of my arthritis I am now content with my life, trying to manage my pain without medication.  I live for the moment and have accepted the changes in my life.  Having more time and doing things slowly and more aware has changed me profoundly.  I had to re-evaluate the priorities in my life and despite the restrictions and the pain, I have never been more content and fulfilled.

Although it has been a cruel and draining journey it has enabled me to turn my life around and lead it in a more meaningful and happier way. 

More Articles...

  1. New office and charity update
  2. Office Move
  3. A look back at awareness week 2019
  4. Stephen Bailey: Why I want to raise awareness
  5. Chris Rankin: How fibromyalgia impacts my partner
  6. Chloe Jade: My struggle with fibromyalgia

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