It is now count down time for Cass and Jess who are fighting for a winning place in the Instant Pop Star competition and need your vote.
The original request to vote for Cass and Jess singing ‘These Words’ on http://www.instantpopstar.co.uk came to me from a fibromite who describes herself as a “daft mum” – but aren’t we all dotty about our own children.
Cass, her daughter, hopes to have a professional career when she leaves school but meanwhile with her friend, Jess, she has aspirations to be a pop star. Cass is the carer for her mother who has fibromyalgia, in spite of being unwell herself, and it is for this reason I think she needs our vote and I was happy to support her claim to fame. Cass was originally diagnosed with juvenile arthritis but this has now been confirmed as Hypermobility Syndrome.
Thanks to those who voted last time and with your support you brought the girls up the chart from a place in the 130s all the way up to 71.
With the competition closing at midnight on Saturday (UK time – 29 October) Cass and Jess need all the help they can get.
Type in CASS and this will lead you to a page with Cass & Jess singing These Words.
You will be voting for Cass, the one with brown hair and big blue eyes,
Cass always sang as a child and joined the school choir at 7 winning the Singer of the Year school award when she was 9. Last year Cass and Jess formed a band called the 80’s Reject, but schoolwork and other pressure led to those in the band parting.
Not only does Cass write her own songs, but she has also written thought provoking articles about bullying and suicide. Her favourite singer is Lily Allen.
I think she deserves a break if only for what she does for her fibromyalgic mother. Why not log on and send her up to No.1 with Jess – less than 24 hours and counting.
Hello. It is me again, waffling on about fibromyalgia and this and that.
This morning I am feeling very up beat as I now have three new friends. I have received lovely emails from fibromites including an invitation from a lady called Kathy to visit Arizona and stay with her. Elle has written to me from Playa Blanca to say, “I remember these rains you suffered. Our electricity was blowing every half hour whilst it was all going on grrrr!”
So it really must have been the worst weather in 20 years. Apparently now the weather there is a “scorchio”. Elle said she enjoyed reading the holiday article but I wonder does she have fibromyalgia?
Pamela, a journalist, has written from the Canary Island of Tenerife to say it is cold where she lives in the north of the island. Houses are built for the heat, not the cold, and have no heating. She says around 35,000 people on the island suffer with fibromyalgia which is not recognised for disability or benefits. The island’s population is 852,945 (2006 census) according to Wikipedia, so if this is about 2.5% (I hope that is right) – it is more than the 2% in the UK. Sorry but maths never was my strong subject – too busy flicking ink pellets at the boys in maths lessons. It is all coming out now – warts and all – WYSIWYG!
Born in the UK, Pamela, who is a journalist, still believes she is better off living in Tenerife, even though she wears four layers of clothing in the winter. She believes she could not survive the UK cold winters. I must say I am beginning to think that way too.
Kathy who is another writer, said, “I blog but don’t write professionally anymore, because my fibro is too severe, but I read about you looking for a place without rain, etc., so I wanted to write to let you know about the state in which I live, Arizona. The winters are mild, and so there is no snow, although it has ‘snowed’ twice since I’ve lived here for the last 27 or 28 years, but it was only for a few minutes.
“So if ever you decide you want to ‘test’ my state, please do let me know, because you are free to stay with me, although I don’t know if I’d be a very good hostess since when I’m in a flare, as I am now, I can barely care for myself.”
My new friends wrote to sympathise with the 10 days rain and 4 days sun I ‘enjoyed’ when I last had a holiday in the Canary Islands…global colding I called it.
I will write to my newfound friends but I would like to say here that I believe friendship springs from fibromyalgia. Thanks to Pamela, Kathy and Elle – it was good to hear from you.
Contrary to public belief, we fibromites are no different to other folk, except maybe we hurt a lot more and perhaps grunt and groan a bit when we try to get up from a chair. Most of us have given up tennis, jogging and running marathons but some claim to be okay at cards, chess, in the casino and other less strenuous pursuits.
We still have families and kids with husbands who either stay the course and understand or others who just do not have the stomach for it and cowardly walk away. Perhaps I should explain that people who are diagnosed with fibromyalgia are usually women although children and men are diagnosed with FM. Fibromyalgia strikes high achievers, super mums, workaholics and those living with constant stress overload. I fall into most of those categories – I love my work. I was a high achiever and was always very ambitious, meeting deadlines and looking for the front-page scoop. But I like to think I was a super mum too – but you would have to ask my children about that. Suffice to say – our lovely kids are all employable, do not take drugs, are not violent, respect their elders, and are none the worse for the discipline we imposed on them. Sorry I am getting all sentimental now…. must move on and not be a family bore.
But many of us who have all the problems associated with fibromyalgia – and I will not bore you with the list – would give their eye teeth to be normal like other folk.
My mind is wandering off and I am visualising lots of people with gaunt drawn in faces, no back teeth, and others pointing and saying, “Look at their faces, they have got fibromyalgia.” Well there is one thing – fibromyalgia would not be invisible any more and we would NOT look so well.
(If only I could paint a picture!) But at least that would do something to raise awareness even though we would all have indigestion from not chewing our food properly. What do you think they would do with 35,000 pairs of eye teeth on the island of Tenerife? The mind boggles.
Sometime ago a sick young lady, fed up with her isolation, depression and fighting the battle, threatened to have the word ‘fibromyalgia’ tattooed on her forehead. I wonder if she did it? People have tattoos in the oddest places these days – not that it appeals to me. It doesn’t wash off.
Might be great to have the word ‘fibromyalgia’ on your butt. If it is one of those days when you have a headache (and we do get a lot of those) you could just roll over, reveal the word and your partner would get the message, without you having a crossed a word.
You could have this message on your butt – F is for fibromyalgia – but that would take a lot of space and might be a bit cheeky –ooh, excuse the pun!
In days gone by if you had something wrong with you and if you were a leper – you were an outcast and shook a bell to let everyone know you had something wrong and you were contagious.
Well fibromyalgia is not contagious – you cannot catch FM– so you are quite safe if you are not one of us. However you can get “catch” it (I should say trigger it) if you ignore the stress overload in your life.
I strongly believe my fibromyalgia was triggered by a very stressful job. After a major show down with my numerous bosses, oddly enough on 5th November (I refer to it Guy Fawkes plot) I became immediately ill with what the doc said was a “virus”. After a month that “virus” became a “post viral infection” and then “stress”. This was the name on my sick note when I reached rock bottom and had my melt down. I could not walk –I am sure my legs belonged to someone else – and boy did I feel sorry for myself.
I claimed my family were thinking, “What are we going to do with her?” No one mentioned wheelchair but I could feel that conversation coming.
This is ridiculous I thought. I have always been a fighter so why should I give in now. I was referred to a specialist, for which I paid consultant’s fees. But he got it in one. After lots of drawing on bits of paper illustrating the pain chain which goes around and around, he told me I had fibromyalgia.
What a relief – I am sure those of you who have been diagnosed know the feeling. I was going to live. Fibromyalgia does not kill you…I have since discovered that if some deadly virus or bacteria attacks your immune system, you can die “indirectly” from fibromyalgia. Last year a lady with CFS died “indirectly” from her disability when something nasty carried her away. But for now we will all live with the FM pain and chronic fatigue for the rest of our lives.
The specialist also suggested, when I asked for more information about this condition I had never heard of, that I go to libraries and the Internet. He recommended I should not join any support groups as these were all doom and gloom. I will always be grateful to that specialist for telling me I would not die from what ailed me, but his advice about the group was certainly not good advice.
So now what was I going to do with my life and the invisible disability – yes I looked very well – but felt so urck! By now I had lost interest in writing and was devoid of ideas (fibro fog). Call it coincidence or an act of good faith, but a former colleague rang me, said they were in trouble and needed someone to minute a meeting. Could I possibly help? I said yes without another thought.
I found something nice to wear, added a bit of paint and powder and tousled my hair ‘exclusively’ as they say, and I was away. It was the step forward I needed. I began writing again and I carried on doing work for my friend. I was back at the computer and the keys were on fire. I joined the Surrey & Sussex Fibromyalgia Support Group (www.fibromyalgia-south.com) and found help, advice, and relief. I was able to talk to people about my pains – people who understood – folk who had been there, done that and even got the tee shirt. Not only did I get tea and sympathy, but also help was always available.
This strong bond of friendship can become a way of life and groups all over the world reach out by telephone or email to those with FM who never leave home. They offer companionship and a new look at life for some who had almost given up. Going to the meetings can become something you look forward to – reading FM books from their library – hearing medical speaker – ringing the helpline to find out if the pain you have is something to do with fibromyalgia. You have nothing to lose except perhaps some pain.
My advice is go for it – even if you only get a magazine, access to a helpline, free advice and medical information – this is the way to gain knowledge about your condition and find out who are the good doctors in your area. You might even do some fund raising for your group or write to your MP or Senator about funding for research. If there is not a group where you live and you have friends who are disabled or have fibromyalgia, start a group. Why not meet once a month in someone’s house for coffee?
Unlike my doc (who obviously does not know everything) I highly recommend joining an FM group. Consider this – I have found new friends by just writing about my fibromyalgia. It would be even better if we were able to lunch together.
For me joining the group has been great – I write for their bi-monthly magazine and sometimes subscribe to their website… we all do. I have even been involved in organising a charity skydive by a fibromite and a very nervous flying teddy bear, and this raised over £1,000 for the group. But that is another story that I might tell you sometime. The teddy bear, now sitting on my desk in his flying gear, is called Groupie. A delightful little bear, a bit tatty, but with a heart of pure gold.
Reiter RJ, Acuna-Castroviejo D, Tan DX.
Department of Cellular and Structural Biology, University of Texas Health Science Center, 7703 Floyd Curl Drive, San Antonio, TX 78229, USA. reiter@uthscsa.edu.
Fibromyalgia (FM) is a painful syndrome that is more common in women than in men. Whether FM has an organic basis or whether it is psychosomatic is debated. Of the numerous treatments that have been tried, rarely have any been completely effective in relieving the pain of FM. Preliminary evidence indicates that melatonin, a molecule that is endogenously produced and is available as an over-the-counter supplement, may be effective in treating the pain associated with this syndrome. Although melatonin is commonly known as a sleep aid (sleep/wake problems are common in FM sufferers), it has a variety of other beneficial effects that may account for its potential benefits in the treatment of FM.
As I am not as young as I once was – well who is – and the spring has decidedly gone out of my step – thanks to fibromyalgia – so I spend much of my time surfing the net.
Now don’t get confused – I don’t get wet or use one of those fibre glass board type things – can you imagine me in one of those sticky rubber suits showing all my lumps and bumps – sexy for some but not me. No, I sit at my computer and play… well that is how my son describes it. The most amazing thing is my computer has brought the world to my little office.
I am now sold on the idea that anyone disabled with fibromyalgia should be given a computer and broadband connections by the government or some rich benevolent personage, to help them live with fibromyalgia. In fact everyone who is disabled and housebound should be afforded the same priviledge. Now who shall we write to about that?
But seriously, not only could they learn about what ails them and avoid visiting the doctors to be told they know not what we have got, but there is the opportunity to join forums, make friends and more to the point – have a smile or two.
How it began I do not remember, but for some unknown reason I seem to have become someone responsible for circulating silly emails, wonderful picture of cats and dogs doing silly things, outrageous pictures, brain puzzles and some really funny stories which make you laugh out loud and feel better. Some of my friends call me Lady Laugh-a-Lot, among other names too rude to mention.
But recently one email dropped onto my desktop which I really wanted to share with the world (after I had deleted what I thought were the libellous statements).
All I can say is no copyright infringement or offence is intended as I have no idea of the original of this information but I hope it will bring a smile to your face and lol (lot of laughs).
Watch out here comes the commercial….go make the tea or something…..
Something to make you smile! If it doesn’t you’re just a miserable person!!
My thanks to all those who have sent me emails this past year……..
I must send my thanks to whoever sent me the one about rat poo in the glue
on envelopes because I now have to use a wet towel with every envelope
that needs sealing.
Also, I now have to scrub the top of every can I open for the same reason.
I no longer have any savings because I gave it to a sick girl (Penny
Brown); who is about to die in the hospital for the 1,387,258th time.
I no longer have any money at all, but that will change once I receive the
$15,000 that Bill Gates/Microsoft and AOL are sending me for participating
in their special e-mail program …..or from the senior bank clerk in
Nigeria who wants me to split $7 million with me for pretending to be a
long lost relative of a customer who died intestate.
I no longer worry about my soul because I have 363,214 angels looking out
for me, and St. Theresa’s novena has granted my every wish.
I no longer use cancer-causing deodorants even though I smell like a water
buffalo on a hot day.
Thanks to you, I have learned that my prayers only get answered if I
forward an e-mail to seven of my friends and make a wish within five minutes.
Because of your concern I no longer drink a certain fizzy drink because it can remove toilet stains.
I no longer can buy petrol without taking a man along to watch the car so
a serial killer won’t crawl in my back seat when I’m filling up.
I no longer go to shopping malls because someone will drug me with a
perfume sample and rob me.
I no longer answer the phone because someone will ask me to dial a number
for which I will get a phone bill with calls to Jamaica, Uganda, Singapore
and Uzbekistan.
Thanks to you, I can’t use anyone’s toilet but mine because a big brown
African spider is lurking under the seat to cause me instant death when it
bites my posteria.
And thanks to your great advice, I can’t even pick up the £5.00 I found
dropped in the car park because it probably was placed there by a sex
molester waiting underneath my car to grab my leg.
If you don’t send this e-mail to at least 144,000 people in the next 70
minutes, a large dove with diarrhoea will land on your head at 5:00pm this
afternoon and the fleas from 12 camels will infest you causing you
to grow a hairy hump. I know this will occur because it actually happened to
a friend of my next door neighbour’s ex-mother-in-law’s second husband’s
cousin’s beautician.
Have a wonderful day!
By the way….a South American scientist after a lengthy study has discovered that people with low IQ always read their e-mails with their hand on the mouse.
Don’t bother taking it off now, it’s too late…….
Let me say this is just the beginning of a wonderful friendship. I have more goodies I would like to share with you. Keep watching.
Ismail K, Kent K, Sherwood R, Hull L, Seed P, David AS, Wessely S.
Department of Psychological Medicine, Institute of Psychiatry, King’s College London, London, UK.
BACKGROUND: The aim was to determine the prevalence of chronic fatigue syndrome (CFS), chronic fatigue and fibromyalgia in UK military personnel after the Gulf War 1990-1991.MethodA two-phase cohort study was used. Three randomly selected subsamples identified from a population-based cross-sectional postal survey of over 10 000 current and ex-service UK military personnel (Gulf veterans were those deployed to the Gulf War 1990-1991; non-Gulf veterans were Bosnia peacekeepers 1992-1997 and those on active duty during the Gulf War 1990-1991 but not deployed) were recruited. Their disability status was assessed using the Short Form 36 physical functioning scale; Gulf veterans who reported physical disability (n=111) were compared with non-Gulf (n=133) veterans who reported similar levels of physical disability. Screening for known medical and psychiatric conditions was conducted to exclude medical explanations for disability and symptomatic distress. Standardised criteria for CFS, chronic fatigue and fibromyalgia were used. RESULTS: Disabled Gulf veterans were more likely to be overweight, have elevated gamma-glutamyl transferase levels and screen positive for hypertension. There were no other clinically significant differences in clinical markers for medically explainable conditions. Disabled Gulf veterans were more likely than similarly disabled Bosnia and Era veterans (adjusted odds ratio 7.8, 95% confidence interval 2.5-24.5) to meet the criteria for CFS. Rates for other medically unexplained conditions were not significantly increased. CONCLUSIONS: Symptoms in keeping with CFS account for a significant part of the symptomatic distress in Gulf veterans.
PMID: 17892626 [PubMed - as supplied by publisher]
1: Psychol Med. 2007 Sep 25;:1-9 [Epub ahead of print]
Well, I do not know if things are different where you live, but the weather – mainly the cold and rain – are the main reasons we British think about getting away on holiday. Although many full-time workers now get 4 or 5 weeks paid holiday in the UK, most of them can only afford two weeks away – ideally somewhere warm and sunny.
We put up with heavy rain, hail stones like golf balls, floods, mud and then – would you believe – droughts, not to mention gales and thunderstorms. It is during the winter, November to February, that we think we must book a holiday to get away from this dreadful, depressing weather. If you complain about the government, you can lose friends and make enemies; talk about the weather (good or bad), and everyone is on your side.
Fed up with the cold, I felt the next step was to take myself off to the High Street with a strong bag to bring home travel brochures.
As I looked at rows and rows of colorful travel brochures I remembered my shortcomings. As an FM sufferer I cannot walk far, and my fibro legs hate hills. Even when it is warm, I like to be comfortable in the knowledge I can have a blanket in case I am in pain during the night. I must make sure I can get extra pillows to support my shoulders and my neck pain. If my IBS is a problem I will need to be able to get to the toilet in the night, and so must leave a light on.
I thought, ‘I must pull myself together.’ This was bordering on the ridiculous! I reflected on my state of health at home – if it is wet and cold I ache everywhere and do not want to go out. If it is warm and sunny, I feel so much better.
A young lady in a smart uniform asked me quietly, “Do you need any help?”
I think I am beyond help!
“Yes please. I am looking for somewhere warm and sunny, not hilly, near the beach, but not too expensive.”
She suggested the Canary Islands, off the coast of West Africa. We looked at pictures of blue, blue seas, sandy beaches stretching into the distance, and she read, “Lanzarote boasts 365 days of sunshine.”
Seventh heaven, I thought – can I go now, please!
Having been to the Canary Islands with my late Mother and young son, I remembered long lazy days, sand that was hot to the sole of your foot, and fish like you have never tasted. There were also one or two cockroaches that my Mother chased around the bedroom with the toilet brush, pulverizing them before anyone would go to bed.
The cockroaches would be gone by now, I thought. New insecticides would see to that. I agreed that the recommended holiday sounded wonderful but I would like to discuss it with my family. They were “taking” me on holiday as my “alleged carers.” The truth is, they know from experience I am usually the only one with money left at the end of the holiday. I suppose you could describe me as their meal ticket or more like ‘good for a few pints of beer’.
I hurried home with a handful of brochures (at a snail’s pace) to look at the holiday books in detail. To make a very long story shorter, my family agreed Lanzarote sounded wonderful and I booked the holiday for four months hence and guess who paid the deposit. Got it in one…..
Hey, wait a minute – have I got this wrong – are the family taking me on holiday or have I been foolish enough to say I would take them on holiday…. I must get a hold of this fibro fog business or it will cost me a fortune.
We were nearing the departure date and we were on count down – 23 days to go. We had paid for extra leg room so I could wiggle my toes, ankles, knees and anything else that would move in the 4 hour trip. I was under strict orders from the family not to over pack or include any scissors or nail files or sharp things in hand luggage or handbag – or I could carry my own luggage.
I have to admit it but the kids had already faced the humilation of mother and her smalls on show to everyone at the airport when someone decided I just MUST open the case to take out the metal bottle opener, nail file, kitchen devil and scissors. That is another long and tedious story. Enough said.
But, we were all looking forward to 14 of the 365 days of sun, so I packed sleeveless T-shirts and strappy tops, thin cargo trousers and shorts. With all that sun I would wash my smalls overnight and wear them the next day -I thought! With such lovely weather, I decided I would pack a couple of swimsuits – the water would be warm with all that sunshine. As we were travelling away from the cold UK weather late in the afternoon and arriving at 8.30 pm I would travel in jeans, a T-shirt, sweatshirt, waistcoat, a fleece jacket, and a warm scarf.
The departure day came. The flight was uneventful—no air pockets, usual uninteresting airline food which had been prepared hours before. There were no second cups of tea or coffee – all drinks had to be paid for – and don’t talk to me about airline toilets. How couples manage to join the Mile High Club in such a small space I will never know. There was hardly enough room for this one fibromite, How two amorous young things hell bent on well – you know what – could manage to achieve their goal under those conditions I will never understand. I guess I am not an old romantic after all. If you should happen to hit an air pocket at a crucial moment -well it does not bear thinking about.
On arrival in Lanzarote I felt chilly and put this down to the darkness and night air. To accommodate all of my concerns about sleeping, late breakfast and so on, my family had agreed to go self-catering in an apartment a short walk from the town, Playa Blanca, and the beach. South of the island was said to be the sunniest.
There were stars in the sky, the complex twinkled with lights in the trees, and everything looked lovely. But shock horror – one pillow, no blanket, and four of us sharing one toilet. Reception arranged a blanket and pillow, which was helpful, and we discovered another toilet close to the apartment. It was a bit of step or a fibromite in a nightie – well who packs dressing gowns to go on holiday? We were all tired after travelling and waiting around the airport, so we decided to go to bed and get any early start on sunbathing the next morning. I remember the sun cream so I was all prepared – or so I thought.
I tossed and turned all night. By 7 a.m. I could stand it no longer and decided to open the thick curtains designed to keep the heat out during the day. I was hoping to be blinded by sunlight. Instead I was distraught with the rain. What did they say about 365 days of sunshine – or was it 364?
Well what was one day I asked myself? It might brighten up after lunch. Meantime, it was cold. As I showered I decided it was not the best weather for shorts and chose to wear my jeans. By the time I dressed I was so cold I was back in the sweatshirt and waistcoat as well as the socks and trainers.
Over the next nine days the weather made no effort to live up to the Lanzarote dream weather. We used our warm clothes until we felt we had to change. Then we scoured the shops for new sweatshirts and warm clothes. I even bought a rain jacket for more warmth and protection against the cold wind.
I will not bore you with the places that ached and pained me. Let us just say they were just too numerous to mention and moved around the body so fast I could not remember what hurt the most. The cold got into my bones and the rain made me creak and ache. The damp weather made me move at the pace of a 94-year-old – I had certainly lost any skip I might have had in my step. My tender points were so tender, it became a laughing matter with my family, who made fun of me and my TPs, as they called them. I called it Global Freezing.
On the eleventh day we believed we would get more of the same weather and almost wished it were time to go home. We had spent 10 days wrapped in blankets in an apartment with no heat to warm the place up. But by 7 a.m. that day, the sun was peeping through the cracks where the curtains had not been properly closed overnight. The temperature had risen and we were able to put away the blankets we had been wrapped in. At last I could show off the new red shorts I had bought for the holiday.
We decided to devote ourselves to the sun and give up everything – drinking, eating, preparing lunch, shopping for presents, and anything else we could do without. Hope you too not of the priorities in that last sentence.
The plan was to get burnt till it hurt and tanned in all conceivable places during every available moment the sun shone. This lasted three days until it was time to leave.
We did arrive home with a tan. I even managed to wear my strappy tee shirts, swimsuits and shorts. In fact the last day of our holiday, when we were flying early evening, we spent the day sweltering in jeans, and our other winter clothes, which we wore, ready for cold weather on our arrival in the UK.
What can I say? Would I do it again? We had fun, we laughed a lot, got cold, wet and a bit merry a few times. It would have been a dream holiday if it had been as warm as the holiday brochure promised. But we had to believe what the locals told us when they said it was the worst weather for 20 years.
Do you think I could sue anybody for misrepresentation of the facts – 365 days of sun – or am I wrong – is it fibro fog – yes must be.
I must admit that the fun and laughter with the 10 days of rain and three days of sun, which we worshipped from dawn to dusk, served as a distraction from the FM pains and yes I would do it again – come rain or shine.
Sometime ago we had one holiday in Cornwall where it rained so much we had no dry clothes to put on. But we found a solution and spent most of the holiday in our swimsuits, sandals and plastic macs. All good fun.
Go for it – book that holiday. Get away from the telephone and forget the bills. A change is as good as a rest, even if it is not sun wall to wall.
Yes I know you have to face some airport restrictions and a bit of body searching if you are lucky – but who cares. Have a great holiday and one you will not forget in a hurry – but do remember to pack your floral wellies. It is no good tempting fate.
I am going again this year – if only for another experience and something to write about. Will let you know what the weather is like when I get back. Talk soon.
Eraso RM, Bradford NJ, Fontenot CN, Espinoza LR, Gedalia A.
Department of Pediatrics, LSU Health Sciences Center and Children’s Hospital, New Orleans, USA.
OBJECTIVE:To report our experience of fibromyalgia syndrome (FMS) in young children with onset at age 10 years and younger as compared to older children.
METHODS:Clinical and laboratory data were reviewed in all patients that had been diagnosed with FMS between November 1994 and March 2003. Patients with onset above the of age 18 years, and patients with FMS and concomitant rheumatic diseases were excluded from this study. The study population included two groups: group “A”, young children with onset at age 10 years and under and group “B”, children with onset above 10 years old. A questionnaire was used at follow-up visits or by telephone interview to evaluate the outcome.
RESULTS:There were 148 children with the diagnosis of FMS (based on ACR criteria), of these 46 children in group A and 102 children in group B. The mean age at onset and mean age at diagnosis were 7.5 years and 10 years in group A, and 13.2 years and 14.5 years in B, respectively. The mean interval between the age of onset and the age at diagnosis was 32 months in group A, and 18 months in group B (p= 0.007). There was a predominance of female gender and Caucasian ethnicity in both groups. Diffuse aching was reported in all patients in both groups. Stiffness, subjective joint swelling, abdominal pain and initial presentation on wheelchair were found more frequently in group A, compared with group B (p= 0.03, 0.001, 0.01, 0.03 respectively). The mean count of tender points at diagnosis was higher in group A, compared with group B (15.3 vs. 14.2, p = 0.004). The differences of other clinical features and laboratory tests in both groups were not statistically significant. Thirty-six patients in group A (78%) and 83 in group B (81%) were available for one or more follow-up visits and/or telephone interview. The mean follow-up period was 14 months in group A, and 19 months in group B (p value = 0.3). There was no difference in the type of treatment or outcome in both groups.
CONCLUSION:FMS in young children of 10 years old and younger is frequently under-recognized. As compared with the older group, stiffness, subjective joint swelling, abdominal pain, initial presentation on wheelchair and a higher mean count of tender points at diagnosis were significantly more common in the younger age group. However, the type of medications used and outcome were similar in both groups. Prospective studies with large patient population are needed to clarify these findings.
Did you guess what WYSIWYG meant? Ten brownie points – go to the top of the class if you did. For those of us who might be a trifle slower (i.e. fibromites), it means WHAT YOU SEE IS WHAT YOU GET. Yes it took me a time to work it out.
This is part of my new outlook on life – I was going to write philosophy but I was not sure I could spell it. (Maybe it is filosiffy?) Did you know you can sepll wdros anawy you lkie and popele will still raed and unredtsnad it. Only the first and last letter must remain in the correct place. It is amazing – that is if you can read it.
This has nothing to do with fibro fog – my problem. FF (fibro fog) makes you wonder how to spell a word you have used all your life – silly I know, but it is true.
I had to smile when a well-known American author described fibro fog as “the wheel is still turning but the hamster has left town”.
Sometimes when someone speaks to you it is like a gabbled unintelligible radio message, which suddenly becomes clear in the middle of a sentence. You then find yourself saying, “Sorry, I missed that. Can you say that again please?” All very embarrassing! But you get used to our funny little ways.
Does this brain fade-cum-fibro fog happen to you? Fibromyalgia can take years to diagnose and many doctors do not even recognise the symptoms. What is more at least 2% of the population have it and maybe 10% are walking around undiagnosed and wondering what ails them. Every week I hear about patients telling their doctors they believe they have fibromyalgia – a thought that has not entered the doctor’s head. We do need to raise awareness.
But to get back to the plot, I have decided to let everyone know about the real me – warts and all – come out of the cupboard if you like. Since my diagnosis of fibromyalgia in 2002 at the end of a very very stressful job, when I believed I would never walk again, I have struggled to get back to where I once was – but no such luck. Of course I choose to forget it is five years on – and during that time I have regularly been in denial. I would pretend I was fit and well and even made applications for jobs – but it did not work out. Now we have a law to support the disabled that might all change. I live in hopes. Anyone looking for a witty feature writer/columnist with a strange sense of humour and a few quirky fibro ways?
I now realise if I am to achieve what I have decided is my destiny- writing and editing a book about this awful syndrome with so many nasties – that I must put my hand up to being proper poorly sometimes.
So I am out of the cupboard, shouting the odds, writing a book here in the UK as a labour of love about fibromyalgia from a patient’s perspective, after 5 years of research into this dastardly disease and invisible disability. Now it really is What You See Is What You Get!
So as I have decided to put my cards on the table I thought you might like to hear what I have been up to and a bit about the book I am involved with…the book includes my interests, what I do every day and my long term hopes for the future.
It all began when I went to California on 18 months ago to attend a short intensive conference about fibromyalgia, courtesy of the Surrey & Sussex Fibromyalgia Support Group. The conference was called FAME (Fibromyalgia Awareness Means Everything) and it was hosted by the American National Fibromyalgia Association. It was amazing and turned out to be a life changing experience.
I am obsessive about collecting give away literature – facts – I love facts and hate fiction. I collected so much paper on that US trip that I had to buy an additional suitcase to bring it all back to the UK and pay for excess luggage. Back home I had all this knowledge about new research and wondered what to do with it. Josephine Fisher, the then chairman of the Group and I talked about feeding the information in the bi-monthly magazine but decided it would take years to spread the word. I did a short report for members but there was still a mass of information to be talked about.
Eventually I came to terms with the fact I would have to write a book. At that time a very smooth Canadian handsome businessman I had met in the States, agreed to fund the book for the first print run. I was on a roll and there were not enough hours in the day to spend on the book. This went on for months until I was almost square eyed looking at the computer. At this stage the book was destined to raise awareness, especially in the UK, and raise some funds towards the cause – FM. I even hoped it would become a milestone book and dared to dream it might be a best seller among books about health. You have to have a dream – and I had mine.
Picture this – it is Christmas week 2006 – nine months after the book project began. The children had written to Father Christmas (so had I), the decorations were up and the fairy tree lights shone brightly. I hoped my presents would include additional ink for the printer, a bigger memory for the computer, more A4 paper and a medical spellchecker – to keep me going.
I was at the computer thinking about taking time off for the festive season when an email arrived on my desktop. You have guessed it. My smoothie businessman had chickened out – some business crisis – and there would be no money. What a Christmas greeting and shocking timing– to say I was gutted would be an understatement. Maybe he thought it was a good time to bury bad news. I will never know. We are not speaking right now.
After Christmas as I was commiserating with another fibromite, she suddenly pushed £20 in my hand and said others would chip in to my publishing fund. At that stage I did not even know I had a publishing fund. The book was at a standstill – I had nothing to lose.
I know some things are sent to try us and we learn from adversity – but this was one big lesson – a king sized learning curve. I felt passionate about what fibromyalgia had done to my life. It had robbed me of my career and a fit and happy lifestyle. I loved my work and was a workaholic beyond redemption. I was glad I would not die from fibromyalgia unless my compromised immune system took a turn for the worse, but I also knew I must live with the pain for the rest of my life.
I wanted to raise awareness and like so many other fibromites, I wanted a cure. I had not begged for money for the book at this stage, as I believed the handshake and promise would hold good. If I was to raise enough money to publish I needed a purpose and I had one.
The lack of funding changed everything except my intention that I would not profit, in any way, from the book. It was decided that the project would be entirely a labour of love – a non-profit making book. There would be payment for contributors, no fat fee for any publisher, or commission to the editor/author – it would all be about the passion to raise awareness and to support funding for some urgently needed research into any of the problems associated with fibromyalgia.
My New Year resolution was to spread the word, tell friends, write articles and I sent so many begging letters I almost lost friends over it. I now seem to have two lives, including one where I no longer bore my family and friends about my fibromyalgia or details of the book unless they ask.
Now nine months on we are steadily building up a balance with £5 here, £25 there and a couple of pledges from groups who will donate when (not if) we publish the book. I say we, because it is no longer my book, but a community book. It belongs to those who have sponsored and believe in the book’s mission – to see it published and raise money for research and bring some self help to those isolated, depressed and living a life with fibromyalgia.
But this is not the end of the tale. Someone with more power to their elbow than I could ever hope for, has now come into the picture. I have always believed I had a Guardian Angel but there the belief stopped – until now. One of the fibromites, Denise, whose story I wanted to publish, was knowledgeable about angel healing. We talked about doing something for the book about this form of healing.
What happened next even surprised me – a cynical journalist and news reporter of some 30 years experience. I was given the address of a renowned angel therapist who I wrote to and asked if she would contribute to the book. She agreed, said she was humbled to be asked, and said the angels had asked her to help me. So who has friends in high places then?
So Michelle Robertson-Jones of http://www.sanctuaryofangels.co.uk will be teaching a group of people in search of healing and their Guardian Angel, through an Angel Experience Day, to help raise funds to publish the book. I think this is the best kind of help you can get. This will be her very last Angel Experience teaching as she is moving on to other angelic things.
This will happen in West Sussex, UK, possibly in November or maybe January, but Michelle’s clients come from far and wide – even from Russia and I am sure that is ‘with love’.
That is not my only good news. The Sussex Freemason Charities encouraged by the Pagham and Felpham Lodges, who gave me their support for the publication of the book, have also promised me a grant. I really am getting the help I so badly needed.
If you are interested there is a way you can get your name in print in the book – become a sponsor. If you want to know more about sponsorship and to be notified when the book is published, email me at pain24.7@mac.com. Forgive me if there is a delay in replying but some days I have my head in the book writing away and dare not stop and read my emails. Let us talk soon.
I struggle on with my aches and pains trying not to bore folk with my ‘pain in the butt’ – yes it really are fibromyalgia down there. But there are times when I feel particularly humble and this is one of them.
I think you will agree with me when you read this little story. We have all been shouting about the Fibromyalgia Awareness Week in September and encouraging folk to do their bit to raise awareness. I even said raising awareness was more important than fundraising – silly me!
But this week I had a nice surprise. A lovely lady who lives in a little village in the heart of Bedfordshire, UK, had organised a coffee morning with her own bedside manner, from her bed and entertained 62 people in her home, raising over £591 for the fibromyalgia cause. Before her coffee morning she wrote to me and said, “Have felt very unwell. It is so easy to lump every thing together and say this must be FM.”
She did it her way – with fibro flair!
In spite of terrible pain with her fibromyalgia and other complications, which she may not like me to mention, Joan Chappell with the help of her husband Graham, family and friends went ahead with an event she had been planning for weeks. But like all fibromites she had no idea how she would feel on the day. As it happens she was full of pain and a bit more than “indisposed”.
A fibro flare is the onset of severe aches and pains often with chronic fatigue that can be triggered by stress, a family upset, a change in the weather or lots of things. You can look so well and feel so awful. The severity of the flare can mean bed for a few days or feeling sorry for yourself while sitting in an armchair. This however was not quite the case for Joan Chappell and her report of what happened gives no indication of how she was really feeling.
In her own words she wrote, “As it was Fibromyalgia Awareness Week and I realised that not many people locally had probably even heard of fibromyalgia, I decided to hold a coffee morning at my house to try and raise awareness, and at the same time raise some money to help things along.
“I was delighted to find that my friends were willing to help me with this and they took over running a cake stall, bring and buy, and a raffle. I also had some help pre-selling tickets. I was also amazed at the support I had from local shops in donating raffle prizes.
‘Thankfully the day was a great success. When we counted up afterwards we found that we had raised a substantial £591.50. I therefore decided to donate £441.50 to the Surrey and Sussex Fibromyalgia Support Group, who has supported me so well in the last year, in spite of the fact that I live in Bedfordshire.
For the book this is a great donation and it means I am a little bit nearer publication date. You may ask why I am soliciting money to go into print? Self-publishing the book by raising the costs before printing, means there is no publisher’s commission or writer’s commission to pay and more sales money can go towards research. The book becomes non-profit making.
DASTARDLY DISEASE
Whether we find a cure in the next five or ten years through research remains to be seen. Fibromyalgia is such a complex syndrome with so many symptoms and diseases cohabiting, that it will be almost impossible to find one cure to help all of these problems. But if we can help fibromites feel less pain, have no chronic fatigue, sleep better, have clearer thoughts with no fibro fog, live with a positive attitude, and not feel isolated or depressed, we will have made some headway towards making their lives better. Failed marriages with partners who just do not understand are quite the norm for fibromites.
I hear stories of youngsters helping their mothers with cores, brushing their hair and helping them dress. Others are not so lucky and lay and wait for help to come. Fibromyalgia is a dastardly disease,
Fibromites are disabled people who deserve respect and should be recognized by the Government’s funding programme for research into conditions with no known cure.
On that sobering thought can I give you a very gentle reminder please? If you have not already done so, please sign the e petition for “FibroFunding”. It takes no time at all and does not hurt a bit.
LESS THAN EIGHT MONTHS
I know you are going to hate me for this but here goes anyway. Today I saw diaries for 2008 on ale in the local shops. My first thought was, it is now less than eight months to World Fibromyalgia Day – May 12 2008. Is it too early to start thinking about what you will do to raising awareness on that day? I think not!
How about a million letters to the Prime Minister? All about fibromyalgia, of course. That would take a bit of organising but if you start now….let me know if you need any help?
From the Social Sciences Group, Sociology of Consumers and Households, Wageningen University, Wageningen (Dr Baanders), and the NIVEL, Netherlands Institute for Health Services Research, Utrecht (Dr Heijmans), the Netherlands.
A chronic physical disease not only has direct consequences for the chronically ill person but can also distort the life of the healthy partner. This study of a representative sample of chronically ill persons and their partners in the Netherlands presents quantitative information on the proportion of partners who experience consequences in 4 distinguished areas (personal life strain, social relations, financial burden, and intrinsic rewards) and provides insight into the factors related to this. Data were derived from a subsample (N = 1,093) of participants in the Dutch Panel of Patients With Chronic Diseases. Linear regression analysis was used to determine the relative effect of caregiving and of disease characteristics to explain the variance in the 4 impact factors. The most prevailing consequences, experienced by more than half of the partners, were related to personal life strain and intrinsic rewards. An impact on social relations and financial situation was reported by 20% of the partners. The regression analyses showed that the time spent on caregiving is the main predictor for all 4 impact measures in this study. However, the findings also make clear that the impact on the partner’s life does not arise entirely from the amount of caregiving. An independent effect of specific disease characteristics is observed in addition to the effect of caregiving; that is, we found that physical impairments in the patient are related to higher personal life strain and higher financial burden whereas social impairments are related to higher impact on all 4 factors. When the patient’s disease is accompanied with fatigue, the partner reports higher impact on personal life, on social relations, and on intrinsic rewards, and pain significantly affects the partner’s social relations. Partners of patients with cancer, musculoskeletal, or digestive disorders are more vulnerable for the consequences of the chronic disease. The impact on female partners is higher for all 4 impact factors. The findings make clear that living with a chronically ill person has an impact on the partner’s life that goes beyond the consequences of caregiving.
PMID: 17873637 [PubMed - as supplied by publisher]
1: Fam Community Health. 2007 October/December;30(4):305-317.
