As you may or may not know, I spent last weekend at a fibromyalgia conference in Chichester. It was an action packed weekend, with lots of really interesting speakers. I learnt a lot, more than I have done since my diagnosis over three years ago. I wanted to bring the information back for both the FibroAction charity forum and any other readers I can reach too as the wealth of information available is quite unbelievable. I will try and keep things as brief as possible and ensure I add links to all relevant websites (where they are available). So, here we go:
Jan Chambers is possibly one of the most interesting women I have ever had the pleasure of meeting and listening to. She was hit with fibro and ME symptoms 10 years ago and made a slow recovery to a point where she runs and amazing organisation, lobbies the American government, and presents information to people all over the world.
Here’s the website: http://www.fmcpaware.org/
Do also make sure you have a read of the free magazine (you can read it for free online) http://www.fmcpaware.org/nfmcpa-quarterly-magazine.html and have a look through the back issues. You can also join them on Facebook and sign up for the newsletter.
Jan explained that we are the experts on our condition, and our healthcare providers can only help us manage it. She explained that a balance of hormones can be used to control symptoms and that fibro can cause neurological changes in how the body interprets and manages environmental stimuli. She explained that managing what happens to your body is what really matters.
In the free magazine there are extensive details of a survey carried out on fibro patients (link above). In brief, the average age of patients was 53 years old and it took more than 5 years to be diagnosed. Just some of the worst symptoms were given as insomnia, fibro fog, depression, weakness, effort intolerance and environmental sensitivity to name just a few. There are also details of what patients described as the worst non pain related symptoms in the report. Details of who manages to work and in what capacity is also explained. Bear in mind these reports are from American sources but I am sure we can all relate, and they are probably exactly the same as here.
Jan explained that we need to learn ho to control sensitization where things are overwhelming to us, for example, turn the TV/radio down, make you partner smoke outside the home, and avoid strong perfumes.
Here is an example of a fibro impact questionnaire: http://fiqr.info/fiqr_questions.htm
It has been observed that some form of prayer, relaxation or meditation can help ease and relieve symptoms. Remember to be gentle and kind to each other too.
When we are in pain our prefrontal cortex in the brain causes cognitive problems. It thins as we become more ill and less mobile. Exercise thickens it and therefore help ease the cognitive problems somewhat. Remember to go slow, take small steps and celebrate achievements, no matter how small they may seem.
In the US, marijana is being researched in a number of different strains for medical purposes. Jan strongly advised to never ever smoke it, as this will have little or no effect and will cause damage elsewhere in the body.
Jan also spoke one day two of the conference about self care.
She described self care as an attitude. Here is a great website recommended by her for helping yourself. It tailors its help to what you need at that time after you answer a short series of questions: http://fibroguide.med.umich.edu/ . Fibroguide also includes tips for family and friends.
Dually focused therapy seems to work best when used together, that is both drug and non-drug related therapy.
Jan has run an educational support group in Utah where she live and found a number of benefits:
- People meet to help themselves and each other
- Developing trust, respect and instill hop
- Advocate and educate
- Create awareness
- A safe environment
- Educate loved ones
- Practice self advocacy
- Active listening
- Mutual support
- Exchange ideas
- Social events
- Develop a community of people who understand.
You are an advocate for yourself every time you go to the doctors/hospital/medical appointment. Check out the advocacy page on her webiste: http://www.fmcpaware.org/advocacy.html
In June of this year a separate site will be launching called ‘Your Voice Matters’. Here you will be able to submit your own story of fibro and read others. At the conference we were all given wristbands in anticipation of the launch. I wear mine every day, as my voice matters, as does yours, and everyone who suffers with fibro. http://www.fmcpaware.org/community/awarenessday2015.html. If you run a support group or charity, you will be able to add it to the site (it’s for international groups, not just US) Email email@example.com to find out how (this project is around 5 months from launch).
Jan Chambers Advocacy 101
- Self advocacy refers to the ability to effectively communicate, convey, negotiate and asses your own desires and rights.
- Involves making informed decisions and taking responsibility for those decisions.
- It;s important for understanding strengths and needs, identifying personal goals, knowing legal rights and responsibilities and communicating these to family and friends.
- The first step to diagnosis and treatment is empowered with information, knowledge and self respect.
- Restoring dignity (which has been removed by the way we get treated an level of illness).
This is just a brief overview of Jan’s presentations. Check out the website for a wealth of brilliant information, along with Fibro Guide.
Finally remember, take a break, look away from the screen, get up if you can, stretch and wiggle before you go back to your screen/knitting/crafting or the TV.
Posts to follow include presentations from a pharmacist, physiotherapist, kinesiologist and herbalist.