Uncategorized

Social media and fibromyalgia 

A brilliant account of the ups and downs of social media…

Dancing through Rainbows

If you follow my spoonie Twitter account @fibropixieyou’ll know I often say how grateful I am to have my spoonie family there. It’s a great place to find people who are going through the same things as you. There’s no judgement and there’s no pressure. The 140character limit actually works really well even when you’re struggling with brain fog and have limited concentration. It also makes you get to the point, and the support is endless. I can honestly say that those people I follow and talk with on Twitter have had a huge influence on how I cope with fibro since I was diagnosed last June. I can’t believe it’s been almost a year since then! Facebook too has loads of good groups and pages offering support and friendship to fellow sufferers. All the major platforms offer their own brand of support and friendship so whichever works for…

View original post 499 more words

Uncategorized

Introducing FibroFlutters – one year on and finally got a blog!

FibroFlutters - Support Group Website

Okay, how did we come about………

18 months ago, my counsellor from MIND asked how I felt about setting up a support group for people with Fibromyalgia as there were many clients there who were finding it difficult to find the support that they needed.

Living only a 25 minute chair distance from the MIND centre, which is at 19 Norfolk Street Sunderland, and with having no luck at finding a group close enough for me to get to I decided ‘well, yeah! okay, go on then’ 🙂

‘I will meet new people and hopefully make some fibro friends too.’

Prior to that I stumbled across a community forum for people with fibromyalgia to go and find support and advice about anything Fibro. I was terrified of jumping into posts not knowing the forum/community etiquette and for being in unfamiliar territory especially not being a Facebook user. The forum is…

View original post 242 more words

Uncategorized

Fibromyalgia and CFS/ME awareness day

Dancing through Rainbows

The 12th May is Fibromyalgia and ME/CFS awareness day. These conditions are not well understood, and yet neither are uncommon and both have the potential to leave people housebound, bedbound and very much disabled.

I’m fortunate that at the moment I remain relatively physically able. I can walk, shower and dress myself. I know many people who are not so fortunate. That I can do these things doesn’t mean they don’t hurt, but as of now that pain remains tolerable for which I’m very grateful.

It’s so hard to see your life change in front of your eyes as your body falls apart and becomes unable to do the most basic things. When I was officially diagnosed with ME/CFS I was hardly able to go out, I was off work on long term sick and was back living with my parents because I couldn’t look after myself. I couldn’t cope…

View original post 439 more words

Uncategorized

Fibromyalgia Conference Part 2 – Andrew Pothercary, the Pharmacist

I was excited to hear a pharmacist was speaking at the conference. Andrew worked for many years in Worthing Hospital Pharmacy and now works in a Cornwall Hospital Pharmacy in the Rheumatology department. He has also spent time working in hospitals in Jersey. https://uk.linkedin.com/pub/andrew-pothecary/43/811/273 His one hour slot proved to be quite informative, here’s some of the main points he spoke about:

(A quick disclaimer: This is notes and information I took from the presentation. Please speak with your doctor before taking or changing your medication, or driving/operating machinery whilst taking medication.)

Opiate Medication

  • New regulations of opiate medication have been brought in with regards to driving (think Tramadol, Morphine etc). whilst there is a level the police measure, it is possible to be about the level and not be impaired or below the level and not fit to drive. If you do get stopped and tested, it’s down to the discretion of the police force.
  • If you do take opiate medication, it may be worth keeping a repeat prescription or letter from your doctor in your bag if you do drive.
  • Tramadol was moved in to Class C and regulated drug controls because of illegal misuse, not because of prescription medication.
  • If you are prescribed a controlled drug, the prescription is valid for only 28 days, and you should not be prescribed more than one months worth of tablets.
  • When collecting the medication you will now be asked to sign a blue box on the back of the prescription, you may also be asked for ID.
  • With Morphine, it is highly addictive and in time can lead to increased pain, and then more Morphine leaving you in a viscous circle of pain and reliance.
  • Tramadol gives improved functions, but is known for dependency and withdrawal symptoms.

Pregabalin and Gabapentin

  • The patent has now expired for the medication meaning it can now be made by other drug companies and will not come in a box marked Lyrica, it will only state Pregabalin.
  • Lyrica is usually prescribed as pain relief, although it is not licensed for fibromyaligia, pain is a symptom of the condition.
  • In studies, 28% of people stopped taking Gabapentin due to side effects.
  • Another study suggests 1 in 11 people get significant improvement of symptoms when taking Pregabilin.
  • Pregabilin is adsorbed quicker than Gabapentin and therefore is more effective.
  • Gabapentin gives higher levels of pain relief but 1 in 3 found side effects for pain treatment intolerable.
  • 300mg per day of Pregabalin is the minimum requirement to provide pain relief.
  • A drug called Microgabalin is in trials. It is similar to Pregabalin but has more specific targets (pain).

Amitriptyline

  • 4 out of 5 trials showed a positive pain outcome but;
  • Long term use was shown to work in 4 out of 5 people.
  • Leaves people with a ‘hangover feeling the next day’

Prozac (fluoxetine)

  • This drug showed positive outcomes in both pain and function.

General points

  • With antidepressants, side effects will diminish over time.
  • New antidepressants are being trialled for fibro symptoms but so far they have had serious side effects.
  • Visit clinical trials.gov and search for fibro. There are currently no open studies in the UK. This is a US site but worldwide studies are listed there.
  • There are a number of ongoing trials in South America, Europe, New Zealand and the US into many types of deficiencies and benefits of medications.
Uncategorized

Articles

Here’s a list of articles and features I’ve published:

Pick Me Up Autumn Special 2015 – Phobias (with Anxiety UK)

Take A Break Holiday Issue 2015 – Phobias (with Anxiety UK)

http://www.anxietyuk.org.uk/2015/05/meet-karen-she-has-a-phobia-of-toilets/

http://www.nopanic.org.uk/karens-story/

http://defypain.co.uk/2015/04/07/karen_l/

http://www.awaywithpain.co.uk/karens-story

Uncategorized

Mental Health Awareness Week – My phobia

Here is a piece I wrote for Anxiety UK about one of my phobias.

They are posting a new story each day this week so keep checking back to their site.

http://www.anxietyuk.org.uk/2015/05/meet-karen-she-has-a-phobia-of-toilets/

Phobias are not something to be ashamed of, however ridiculous you may feel it seems. That’s why I shared my story, hopefully it can help others talk about their phobias too.

Karen xx

Uncategorized

My Story for A Way With Pain

Hi everyone

I wrote a piece for the lovely charity A Way With Pain, have a read and let me know your thoughts and how you stay positive. Check out the other stories too, lots of inspiring words from lots of wonderful people.

http://awaywithpain.co.uk/karens-story

Karen xx

Uncategorized

Fibromyalgia Conference Part One – Jan Chambers of FMCPA

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 info@fmcpaware.org 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.

Karen xx