Fibro Conference Next Week!

I haven’t blogged for a while, I’ve focused on getting my health back on track ready for a busy end of month. I can;t believe it;s come around so quickly but next weekend is the Fibro Conference in Chichester. Being the stationery addict I am I have a new lap top case and a selection of pretty pens and note books ready to go so I can report back on everything that’s discussed.

Here’s a brief overview from the Folly Pogs Fibro Group (the group who run the conference) of what will be happening:

With a wide and varied programme around the main FM symptoms, we are aiming to please with interesting speakers from the USA, Canada, Australia and the UK, giving you their views on living with FM.


Iris Weverman, a registered physiotherapist from Canada who specialises in FM, will talk  about chronic fatigue, stiffness and exercise for fibromyalgia. In a second talk  she will discuss trigger points versus tender points. This is not to be missed.


Dr. Nick Read, a leading speaker from Sheffield, a gastroenterologist psychoanalytical psychotherapist, human nutritionist, interested in FM, will talk about his active interest in the IBS Network, and integrated medicine.  As a nutritionist we are hoping he will give us a recommended diet for those with IBS.


Andrew Pothecary, a Specialist Pharmacist in  Rheumatology & Biologics at the Royal Cornwall Hospitals NHS Trust, will be lecturing at The Clinical Pharmacy Congress on the Future of Clinical Pharmacy in London on the Friday.  But he has agreed to stop over and talk to us on Saturday. We hope to learn more about the medications for our pains that our GPs describe for fibromites. 


Afifah Hamilton, MNIMH Cert Phyt ITEC, GAP practitioner and nutritionist, is an alternative medical practitioner who uses herbal remedies for wellbeing. Afifah is medically trained and a specialist in physical, psychological and conventional treatments with herbal options. She will be discussing sleeplessness among other symptoms.


An American lady with fibromyalgia and a great reputation,  will be with us to talk about her commitment for FM. We hope she will include news of research, life with FM in the States  and living with fibromyalgia. Jan Chambers is President of the USA National Fibromyalgia  & Chronic Pain Association, founder of the Centre of Understanding, Research and Education  of Fibromyalgia (CURE FM) and co-founder of the NFA Leaders Coalition, Executive Committee.  Married for 35 years and the mother of 5 children, Jan has had a roller coaster ride with fibromyalgia since 2005. Her background really makes interesting reading and will save a lot of questions if you are coming to conference. This really is a lady who commands my highest respect and I am honoured she has agreed to visit us. Try http://www.fmcpaware.org/jan-chambers


“I’ve got my life back, and I love every minute of it” she said.


Another interesting speaker with big claims is Philip Rafferty. Born in  the UK  he lives in  Australia and travels the world. A specialist in fibromyalgia, chronic pain and CFS he is a kinesiology ‘wizard’. He claims the corrections he teaches fibromites keeps them out of  fight/flight/ freeze/survival.  What he does he says is different to anything else. He achieves instant dramatic pain reduction. A must see!


We are again pleased to welcome Wes and John with the Benefits & Debt Clinic which will be operating Friday afternoon from 3.15pm. Look at their website –  for debt and benefits http://frontlinedebtadvice.org.uk/ – you might find it interesting.


As usual there will also be other attractions. On Friday we have the film premier of the documentary film made at FM Conference 2014. It is called ‘Focus on Fibromyalgia’ and includes consultants’ comments as well as those who live with this condition. Be sure to see the film as it is a movie you must see.  Lasting 65 mins. it is full of information and you will need to go back and back again to the film to see what you missed. Copies of the film will be available to purchase after the premier.


Jen Lee is back with us again for some light relief and with more Belly Dancing steps to learn. We hoping to have all doctors on stage Sunday afternoon. Do not forget the auction of wine and other gifts donated by delegates on Monday morning.


Simon Stuart, a leading member of the FibCon team, who works in the medical profession with the elderly, will be giving a talk about Alzheimers.

As you can see, there are lots of speakers from around the world as well as alternative therapies. I must say I’m looking forward to the belly dancing session. And a dip in the jacuzzi afterwards!

If anyone has any questions or queries they would like me to ask at the conference, do let me know and I’ll add them to my list.

Most importantly I must remember to take enough time to rest during the long weekend, I have therefore already accepted I will have to sacrifice evening entertainment to ensure my wellness and that I can last the weekend. And maybe have another dip in the pool!

Karen xx


My Pain Story

My pain story began when I was about 14 or 15. My wrists and thumbs were causing me agony, my joints would click out of place and lock and I had pressure points on my forearm that we incredibly painful to the touch. I was sent for physiotherapy and ultrasound treatment. It didn’t work and made it worse. They gave up. I struggled through hours of GSCEs with horrendous writing and somehow still did quite well.

My memory fades a little after that until I was 16 and an office junior. My shoulders became so painful I felt sick. They too would lock and click, I could barely lift my arms up and working at a desk made it worse. The GPs said it was psychological and sent me on my way with big pink painkillers.

A few years later I was in more agony than before, and it hurt to put pressure on my hips. The GPs decided because I was so underweight (not through choice, I ate anything in sight, including my families leftovers from dinner!) my joints weren’t supported and they were blistering. I was sent on my merry way again, this time without painkillers.

By the time I was 25 I was living in Brighton and working in the most depressing job possible. I often went into my own world on my walk home from work as an escape from the draining experience that was every day. It was North Road, I looked twice, the traffic had stopped, nothing was coming, I stepped out into the road, next thing I know I was lying on my front looking at my glasses that had been thrown down the street, and my shopping underneath a big white van. I had been hit by a high speed bicycle who had no intention of stopping at the red lights 10 meters away. The bike and it’s rider landed on top of me. The bike was bent and ruined and I was lying in the middle of the road with traffic moving around me and a huddle of wonderful strangers – off duty nurses, The British Transport Police and lots of lovely passers by. They got my glasses for me and called an ambulance. I could hear the sirens for what felt like half an hour while the ambulance was stuck in traffic.

I was the third person that day to be hit by a bicycle in Brighton and attended to by that crew. They told me it was a miracle nothing had been broken. They checked me out, told me I’d feel like I’d lost in a rugby match the next day and sent me home in a police car. There was nothing a hospital could do. The injuries came out of the next couple of days and I still have scars from the massive bruises around my pelvis. I had tyre marks down my entire leg, my elbows and knees were cut and swollen, I was in shock and I felt incredibly awful.

I assumed within a few days I’d be better. But the pain never went away. That was three and a half years ago. Now,  my pelvis cannot take any pressure at all, my shoulders are constantly in agony and as the years have passed my knees have started popping out of place, my back has given up and I am exhausted, weak and very unwell.

It took 6 months to diagnose fibromyalgia, and I realise this is quite quick in the fibro world, but that 6 months of testing and ruling out a large number of awful degenerative conditions was a scary time. In the end my rheumatologist told me as I did not have a degenerative condition, he had more important people in his waiting room to attend to and discharged me back to my GP. I’ve seen about 12 GPs since then, few of them know what to do, or really seem to care.

I finally saw an on call GP a few weeks ago who prescribed me pregabalin. While my sleep has dramatically improved, the pain has not. Another on call GP this week referred me to pain management. I’m sad it’s taken over three years for this referral, but overjoyed someone listened to me after all this time.

I have dabbled with mindfulness and meditation and recently starting practicing about 5 times a week to help me relax and cope with the pain and exhaustion. I’ve also taken up yoga which helps ease the tension in my muscles and is slowly building up my fitness again.

I used to run 5k and 10k races for Cancer Research, I was accepted into the Territorial Army, I spent hours on the running track at the gym and I walked everywhere at high speed. Now I have a bus pass and take the bus for just one or two stops.

I now volunteer for FibroAction as an admin assistant. I also work 30 hours per week and I am half way through a degree in politics with the Open University. I;ve written some of my best assignments from my bed! I can’t garden any more so I bring home fresh flowers from the market every week. I couldn’t mix cake mixture so I bought a pink mixer. I can’t always cook so I ordered in some meals. I’m slowly but surely finding ways around my illness despite it worsening.

My latest project is an online stationery shop http://www.trinnys.co.uk, and this will also feature at Brighton Open market during warmer months. This may be the key to working from home, in my fluffy pjs, cats by my side and laptop in hand. So even if it’s a bad day, I can still get to work.

So there you have it. My pain journey has probably only just begun, it’s ever changing, and I remain ever hopeful.

Karen xx


Susannah Conway’s April Love

Through the lovely Grace Quantock’s Trailblazing Facebook page I saw a link to Susannah Conway’s April Love challenge. By signing up you receive a daily message and story of inspiration, each one from a different author.

For my challenge I’ll be taking a photo each day based on the prompts given by Susannah. It’ll help me capture what is wonderful and fabulous in my life, and help me appreciate that little things sometimes mean the most.

At the end of the month I’ll add them all to a blog so I can look back and remember my month of love and all things fabulous.

I’ll also be downloading the free books and audio visualizations to read and listen to in a quiet moment (hopefully in the spring sunshine in my local park).

Now I just need to find my camera (I put it in a safe place that fibro fog can’t remember).

Will you be joining in with April Love?

Karen xx