Hi Everyone

Well, the weather promises to be windy, rainy, sleety and possibly snowy. You can’t go out so you might as well stay in, turn on the gas fire, make a cup of tea, and read the November newsletter. You know it makes sense!

Christmas Raffle

We will be holding the Christmas Raffle at this month’s meeting. My special thanks for the terrific efforts of Mandy Williams, who has spent the last few weeks gathering gifts and donations from around the island. Because of this we have a truly magnificent hamper and prizes. If you only make it to one meeting a year, make it to this one. Not only might you be going home with some splendid prizes but you will definitely be supporting the Wight Fibro Group with each ticket you buy.

Fibromyalgia and Disability: The journey continues

The action to get Fibromyalgia classed as a disability has taken a major step this week with the action group meeting with the DWP to discuss matters. As always, the Government is never quick to act but the determination of this group is faultless and to be hugely admired. Especially as we all know the burden they carry as they do this. Why not visit their Facebook page to find out more and give them a message of support: https://www.facebook.com/Fibropetition/posts/2638834673010490

I want to take a moment…

… to say thank you to some people. Most of us, when we arrive at a meeting go straight to the desk where we are greeted by Gill. Come hell or high water, Gill is always there for us. Always smiling, always friendly, always ready to guide new members through signing up and the rest of us through signing in. But that’s only the bit you see. After the meetings are over, Gill meticulously counts the takings, keeps accounts, pays for the hall, deals with the bank and generally holds the accounts together. During these last 12 months especially, when things have been very tight, Gill’s management has helped to keep our group going. So my first ‘thank you’ goes to you, Gill.

We all get to see the raffle table every month. It magically appears, fully laid out with goodies, ready for the draw. Opposite is the Library, neatly arranged, ready for lending. But both of these need managing and this falls to Lesley who, every month, gathers and brings the raffle prizes and the books, makes sure that they are ready before anyone arrives, and then packs it all away to take home with her. And those books weight a ton, I can tell you! Did you also realise that almost every speaker we have had this year was organised by Lesley too? And we have had some brilliant ones: Remember Val? The mental image of tiny knickers in a Russian sauna is one I cannot eradicate. So my next ‘thank you’ goes to you, Lesley.

Without the efforts of Gill and Lesley the Wight Fibro Group would simply not exist. So, when you have a moment, just say ‘thanks’.

I know several of you do your bit throughout the year, and this is greatly appreciated, but there is one other to whom I would like to say ‘thank you’, and that is Lesley’s mum, Brenda. As well as providing everyone with a kind, friendly smile, and always helping out wherever possible, Brenda always takes it upon herself to collect and wash the mugs after the meeting. This is no small task, given the numbers at some meeting, and we really appreciate it.

However, it is, I feel, unfair to expect this lovely lady to do anything other than enjoy her leisure at our group. And in future I would like younger members of the group to take on this task. Please don’t wait to be asked, just give a few moments of your time before you leave. You may not get mentioned in dispatches, but you will be appreciated.

Christmas Lunch

This meeting will be the last opportunity to get a seat at the Christmas lunch table. We have a (very) few spaces left, so bring your deposit and get your name down. It should be a very enjoyable time and I am definitely looking forward to it.

Monthly Raffle

This won’t take place as such because of the Christmas Raffle. However, I just wanted to remind you that we always need items for the regular raffle so if you have anything to offer, please bring it. You never know what you have hiding in cupboards – Julie Golder has given us a fabulously huge bag of very nice toiletries after rummaging through her drawers in the bathroom. Thanks, Julie – you’re a star!

November Meeting

As well as the Christmas Raffle we will be having games in the form of a Beetle Drive and (if time allows) a quiz. As usual, tea and coffee will flow in biblical proportions, good company, laughter and bonhomie will fill the air. Tuesday 12th, 1:30, All Saints Church Hall, Ryde. See you there!

Yours, in kindness,

Chris

Hi Everyone

It was in the papers this week that we’re in for a bad winter this year. I don’t know about a white Christmas but it’s going to be a cold one apparently so forewarned is forearmed, as they say. Be prepared and stay safe.

Right, now, two things:

1 – Raffle Prizes

We all know how much we enjoy the raffle – the flutter, the anticipation, the unbridled excitement as you stand, like a child in a sweetshop, selecting your prize.
We are getting low on prizes and we really depend on your donations to make this event a monthly success. Both Lesley and Gill to all they can to keep the raffle table well stocked but now they barely have anything left in their homes!

So have a mooch around your domicile and see if you have anything you can bring to the table. It doesn’t have to be special: unused toiletries, unwanted gifts, that Cartier watch you’ve never really worn, anything, really.

2 – Christmas Lunch

Will be at the Isle of Wight College on the 9th of December, 12:45. We booked 20 places in advance, 12 have gone already so if you want one of the remaining ones book now. The cost of the dinner is £10 and we will need the money when you book, so you need to come in to the October meeting to do so.

We always have a great time at these lunches so come to the meeting, get your name down and don’t miss out. The menu is a good one and you can take a look at it here:

IoW College Christmas Menu

And my thanks go to Ruth Levi for finding and suggesting this venue. Thanks, Ruth!

This month’s meeting will be on the 9th at All Saints Church Hall, Ryde. 1:30 as usual. This month we will be having a talk from our resident Psychotherapist on the links between Fibromyalgia and Early Life Trauma.

See you there!

Chris.

Hello All!
As we slide gently into the season of mists and mellow fruitfulness I notice a distinct chilliness in the air. Summer’s lease hath all too short a date and temperatures shall soon be dropping. I don’t know about you but my old Osgood-Schlatter’s injury always starts to bother me around the end of September, and that’s when I know were going to start getting colder.

Guaifenesin – An interesting remedy
I recently read a post about the use of guaifenesin to treat fibromyalgia. Originally used as a cough/bronchial treatment, this relatively benign treatment has found uses in the care of Fibromyalgia, Gout and other musculo-skeletal ailments. Take a look at this page to find out more. You can get Guiafenesin from your chemists and it has few serious side-effects apparently, although nausea, stomach upsets and vomiting are quite common.

Changes to Concessionary Travel on the Isle of Wight
You may have heard about these proposed changes. The Council are not very forthcoming with information about it but there is a 12-week consultation in progress, which you can take part in online. Take a look here, and make sure you have your say!

The Future Clinic Webinar
Dr Gary Lee and colleagues will be presenting a webinar on Saturday October 5th. The title of the webinar is “Fibromyalgia – a story of strength and adaptability” If you wish to join Gary and his colleagues on this event (and you really should) the you can buy tickets via these links:
Morning session: https://bit.ly/2TJuGqZ
Afternoon Session:https://bit.ly/2NfJlcf

This month’s meeting
I am delighted to announce that Michelle Callaghan of Health Matters will be coming to see us this month. Michelle is a very highly qualified and experienced practitioner whom I know has already made a difference to the life of one of our own group members. Her treatments include Acupressure and Lymphatic massage, Reiki and Spinal Touch Therapy. You should not miss this presentation.
The meeting will take place at 1:30 on the 10th at All Saints Church Hall, Ryde. Look forward to seeing you there!
All the best,

Chris

 

 
Photo credit:
unsplash-logoKatie Moum

Hi Everyone!
Not a very long newsletter this month, to your great relief, I’m sure. After all, who wants to spend ages poring over reams of stuff in this sweltering weather? It’s certainly too hot to be slaving over.

Tai Chi
That doesn’t mean there’s nothing here, mind. First of all, we’ve had an email from a lady by the name of Nicola Jones who teaches Tai Chi. Starting in the Autumn she has a new community Tai Chi and Qigong class in Newport town centre on Tuesdays 1-2pm on a weekly basis.
This type of class is open to students of all ages and abilities, whether standing or seated the movements can be adapted to each student. The cost is £6 per class, and no booking is required. Each lesson is stand alone, allowing ad-hoc attendance for those living with differing health requirements.
If you would like to get in touch with Nicola the full details are here: https://earthbalance-taichi.com/shop/tai-chi-qigong-isle-of-wight/

Raffle Donations
As well as being good fun, our monthly raffles really help keep the roof over our heads meetingwise, so if you have anything you would like to donate to the raffle table please bring it in. It all helps!

From Rheumatism to Fibromyalgia – A history
Did you know that medical descriptions of Fibromyalgia go back to 1592? Or that it has variously been called neurasthenia, myelasthenia and fibrositis? Or my favourite: Myogeloses (sounds kind of gooey to me). This brilliant article, originally posted by Gill on her facebook page, gives a very good history (Thanks, Gill!).

And for the future…
This is a very interesting article on the links between conditions like Fibro and a new genetic finding: hereditary-a tryptasemia. Read more here.

Finally… Buyer Beware!
Given that they are now putting CBD compounds into Coca-Cola and beer I am becoming more and more sceptical about the value of this product, at least in the doses which are sold in the shops.
As this BBC report shows, some of the products being sold on the high street contain next to nothing of the CBD constituents people are expecting.
There are a lot of reports that proper, good quality, CBD oil helps many people. But buyers need to make sure they are actually getting what they pay for, and not just a bottle of glorified cooking oil. If you are buying these products, do a bit of research and make sure you get what you are expecting.

August Meeting
Our next meeting is on the 13th, at All Saints Church Hall, 1:30 as always. This month I will be giving a talk Mindful Awareness and Attention Management. See you there.
Warmest regards,

Chris.

Hello!

For many fibro sufferers, “How did I get like this?” is an everyday question. Fibro has a lot of possible causes but one which I feel often gets overlooked is Trauma. Particularly in childhood.

More and more research is being done into the possible links between trauma and conditions such as arthritis, lupus and Fibromyalgia. What I want to talk about in the attached article is how traumatic experiences in childhood may leave some people highly susceptible to Fibro in later life, and what can be done about it. On the way we’ll take a look at what trauma is, how it affects us in both mind and body, and meet three Doctors who have been instrumental in helping people deal with it. I hope you enjoy it.

You can read the full article on our Articles page. Just Click Here.

This month’s meeting will be on Tuesday the 9th and we are having a . We had one a few months ago and it was terrific, so don’t miss this one.

1:30 pm, All saints Church Hall, Ryde. See you there!

All the best,

Chris.

Hi there!
The summer officially starts this month which means we are formally in the season of barbeques, salads, and generally more interesting food. So I thought it would be a good idea to combine this seasonal gastronomic enthusiasm with some useful info.
So many times we are told that food is medicine and this is an important message. But more than that, some foods can help combat inflammation, which is pretty handy if you’re a fibro sufferer.
What follows is a list from Healthline.com showing some of the best anti-inflammatory foods going. Hopefully you’ll find something here to help you.
Right, here we go.

13 Most Anti-Inflammatory Foods You Can Eat

Inflammation can be both good and bad. On one hand, it helps your body defend itself from infection and injury. On the other hand, chronic inflammation can lead to weight gain and disease.

Stress, inflammatory foods and low activity levels can make this risk even greater.
However, studies demonstrate that some foods can fight inflammation.
Here are 13 anti-inflammatory foods which can help.

1. Berries
Berries are small fruits that are packed with fibre, vitamins and minerals.
Although there are dozens of varieties, some of the most common are:

• Strawberries
• Blueberries
• Raspberries
• Blackberries

Berries contain antioxidants called anthocyanins. These compounds have anti-inflammatory effects that may reduce your risk of disease.

Your body produces natural killer cells (NK cells), which help keep your immune system functioning properly.

In one study, men who consumed blueberries every day produced significantly more NK cells than men who did not.

In another study, overweight men and women who ate strawberries had lower levels of certain inflammatory markers associated with heart disease.

Summary Berries provide antioxidants known as anthocyanins. These compounds may reduce inflammation, boost immunity and reduce your risk of heart disease.

2. Fatty Fish
Fatty fish are a great source of protein and the long-chain omega-3 fatty acids EPA and DHA. Although all types of fish contain some omega-3 fatty acids, these fatty fish are among the best sources:

• Salmon
• Sardines
• Herring
• Mackerel
• Anchovies

EPA and DHA reduce inflammation that can lead to metabolic syndrome, heart disease, diabetes and kidney disease.

Your body metabolizes these fatty acids into compounds called resolvins and protectins, which have anti-inflammatory effects.

In clinical studies, people consuming salmon or EPA and DHA supplements had decreases in the inflammatory marker C-reactive protein (CRP).

However, in another study, people with an irregular heartbeat who took EPA and DHA daily experienced no difference in inflammatory markers compared to those who received a placebo.

Summary Fatty fish hold high amounts of the omega-3 fatty acids EPA and DHA, which have anti-inflammatory effects.

3. Broccoli
Broccoli is extremely nutritious.
It’s a cruciferous vegetable, along with cauliflower, Brussels sprouts and kale.
Research has shown that eating a lot of cruciferous vegetables is associated with a decreased risk of heart disease and cancer.

This may be related to the anti-inflammatory effects of the antioxidants they contain.
Broccoli is rich in sulforaphane, an antioxidant that fights inflammation by reducing your levels of cytokines and NF-kB, which drive inflammation.

Summary Broccoli is one of the best sources of sulforaphane, an antioxidant with powerful anti-inflammatory effects.

4. Avocados
Avocados may be one of the few supposed superfoods worthy of the title. They’re packed with potassium, magnesium, fiber and heart-healthy monounsaturated fats.

They also contain carotenoids and tocopherols, which are linked to reduced cancer risk.

In addition, one compound in avocados may reduce inflammation in young skin cells.

In one study, when people consumed a slice of avocado with a hamburger, they had lower levels of the inflammatory markers NF-kB and IL-6 than participants who ate the hamburger alone.

Summary Avocados offer various beneficial compounds that protect against inflammation and may reduce your cancer risk.

5. Green Tea
You’ve probably already heard that green tea is one of the healthiest beverages you can drink. It reduces your risk of heart disease, cancer, Alzheimer’s disease, obesity and other conditions.

Many of its benefits are due to its antioxidant and anti-inflammatory properties, especially a substance called epigallocatechin-3-gallate (EGCG).
EGCG inhibits inflammation by reducing pro-inflammatory cytokine production and damage to the fatty acids in your cells.
You can buy green tea in most stores or online.

Summary Green tea’s high EGCG content reduces inflammation and safeguards cells from damage that can lead to disease.

6. Peppers
Bell peppers and chili peppers are loaded with vitamin C and antioxidants that have powerful anti-inflammatory effects.

Bell peppers provide the antioxidant quercetin, which may reduce one marker of oxidative damage in people with sarcoidosis, an inflammatory disease.

Chili peppers contain sinapic acid and ferulic acid, which may reduce inflammation and lead to healthier aging.

Summary Chili peppers and bell peppers are rich in quercetin, sinapic acid, ferulic acid and other antioxidants with strong anti-inflammatory effects.

7. Mushrooms
While thousands of varieties of mushrooms exist worldwide, only a few are edible and grown commercially. These include truffles, portobello mushrooms and shiitake.

Mushrooms are very low in calories and rich in selenium, copper and all of the B vitamins. They also contain phenols and other antioxidants that provide anti-inflammatory protection.

A special type of mushroom called lion’s mane may potentially reduce the low-grade inflammation seen in obesity.

However, one study found that cooking mushrooms lowered their anti-inflammatory compounds significantly — so it may be best to eat them raw or lightly cooked.

Summary Some edible mushrooms boast compounds that may decrease inflammation. Eating them raw or lightly cooked may help you reap their full anti-inflammatory potential.

8. Grapes
Grapes contain anthocyanins, which reduce inflammation. In addition, they may decrease the risk of several diseases, including heart disease, diabetes, obesity, Alzheimer’s disease and eye disorders.

Grapes are also one of the best sources of resveratrol, another compound that has many health benefits.

In one study, people with heart disease who consumed grape extract daily experienced a decrease in inflammatory gene markers, including NF-kB.

What’s more, their levels of adiponectin increased. Low levels are associated with weight gain and an increased risk of cancer.

Summary Several plant compounds in grapes, including resveratrol, can reduce inflammation. They may also reduce your risk of several diseases.

9. Turmeric
Turmeric is a spice with a strong, earthy flavour that’s often used in curries and other Indian dishes. It has received a lot of attention for its content of the powerful anti-inflammatory nutrient curcumin.

Turmeric is effective at reducing the inflammation related to arthritis, diabetes and other diseases .

One gram of curcumin daily combined with piperine from black pepper caused a significant decrease in the inflammatory marker CRP in people with metabolic syndrome.

However, it may be hard to get enough curcumin to have a noticeable effect from turmeric alone.

In one study, overweight women who took 2.8 grams of turmeric per day had no improvement in inflammatory markers.

Taking supplements containing isolated curcumin is much more effective. Curcumin supplements are often combined with piperine, which can boost curcumin absorption by 2,000%.

If you’re interested in using turmeric in cooking, you can find it in most grocery stores or online.

Summary Turmeric boasts a powerful anti-inflammatory compound called curcumin. Eating black pepper with turmeric can significantly enhance the absorption of curcumin.

10. Extra Virgin Olive Oil
Extra virgin olive oil is one of the healthiest fats you can eat. It’s rich in monounsaturated fats and a staple in the Mediterranean diet, which provides numerous health benefits.

Studies link extra virgin olive oil to a reduced risk of heart disease, brain cancer and other serious health conditions.

In one Mediterranean diet study, CRP and several other inflammatory markers significantly decreased in those who consumed 1.7 ounces (50 ml) of olive oil daily.

The effect of oleocanthal, an antioxidant found in olive oil, has been compared to anti-inflammatory drugs like ibuprofen.

Keep in mind that anti-inflammatory benefits are much greater in extra virgin olive oil than in more refined olive oils.

It’s easy to find extra virgin olive oil in your local grocery store, but you can also buy it online.

Summary Extra virgin olive oil provides powerful anti-inflammatory benefits, which may reduce your risk of heart disease, cancer and other serious health conditions.

11. Dark Chocolate and Cocoa
Dark chocolate is delicious, rich and satisfying. It’s also packed with antioxidants that reduce inflammation. These may reduce your risk of disease and lead to healthier aging.

Flavanols are responsible for chocolate’s anti-inflammatory effects and keep the endothelial cells that line your arteries healthy.

In one study, smokers experienced significant improvement in endothelial function two hours after eating high-flavonol chocolate.

However, make sure to choose dark chocolate that contains at least 70% cocoa — more is even better — in order to reap the anti-inflammatory benefits. If you forgot to grab this treat on your last run to the store, you can always buy it online.

Summary Flavanols in dark chocolate and cocoa can reduce inflammation. They may also reduce your risk of several diseases.

12. Tomatoes
The tomato is a nutritional powerhouse. Tomatoes are high in vitamin C, potassium and lycopene, an antioxidant with impressive anti-inflammatory properties.

Lycopene may be particularly beneficial for reducing pro-inflammatory compounds related to several types of cancer.

One study determined that drinking tomato juice significantly decreased inflammatory markers in overweight — but not obese — women.

Note that cooking tomatoes in olive oil can maximize the amount of lycopene you absorb.

That’s because lycopene is a carotenoid, or a fat-soluble nutrient. Carotenoids are absorbed better with a source of fat.

Summary Tomatoes are an excellent source of lycopene, which may reduce inflammation and protect against cancer.

13. Cherries
Cherries are delicious and rich in antioxidants, such as anthocyanins and catechins, which fight inflammation.

Although the health-promoting properties of tart cherries have been studied more than other varieties, sweet cherries also provide benefits.

In one study, when people consumed 280 grams of cherries per day for one month, their levels of the inflammatory marker CRP decreased — and stayed low for 28 days after they stopped eating cherries.

Summary Sweet and tart cherries contain antioxidants that reduce inflammation and your risk of disease.

The Bottom Line
Even low levels of inflammation on a chronic basis can lead to disease.
Do your best to keep inflammation in check by choosing a wide variety of delicious, antioxidant-rich foods.
Peppers, dark chocolate, fish and extra virgin olive oil are just a few foods that can help you combat inflammation and reduce your risk of illness.

So there you have is. Next time you’re trotting round Tesco’s or scooting round Sainbury’s take this list with you and do yourself some good!

Our next meeting is on the 11th, All Saint’s Church Hall commencing 1:30 pm. Our speaker will be Martin Willment who will be talking about lymphatic massage among other things.

Take good care, and we’ll see you there!

All the best,

Chris.

Welcome To The Video Edition!

 

Why the video edition? Well, because I have found a couple of YouTube videos which I think you might find interesting, and another one to make you smile. But more on that in a bit.

It’s a bright, sunny Saturday afternoon as I type this. The sunlight bouncing off the red brick outside washes the room with a warm glow and the uplifting tones of Beethoven’s 6th symphony are bringing a smile to my face.

Laughter, they say, is the best medicine, and if you attended our last meeting you will know exactly what I mean. If you didn’t, then you missed Val, a very well-travelled lady whose hilarious exploits in foreign climes has us screaming with laughter. Regaling us with tales of Russian Bath Houses, soapy massages and wholly insufficient knickers (well, we’ve all been there, haven’t we?), this wonderful lady gave us one of the best afternoons we have ever had.

Don’t worry if you missed her because we’ll be having Val back in the Autumn and I’ll give you plenty of notice. Do try to make it when she comes back because she’s simply marvellous to hear.

 

All Fall Down

OK, now the first of the videos. For many of us with Fibro, regardless of age, falling over can be a real hazard. This video shows you several ways to get yourself up, or at least, into a position where you can summon help. MacGyver style!

I particularly like the one where you stack the books under your bum. All those old Reader’s Digests might come in handy after all!

 

Where does is hurt? – Just Ear!

Do your ears ever hurt for no apparent reason? Mine do and sometimes it’s excruciating. But I have never connected it with Fibro. Until now. This article goes into detail about how Fibro sufferers are prone to spurious ear pain. Take a look and see what you think. For me, this was yet another time when I’ve read something about Fibro and things just ‘fell into place’. I’ve shortened the link to make life a bit easier:

https://bit.ly/2H438b3

You’ve made your bed…!

Time for the second of your video treats. How big is your duvet? And how many of you does it take to put it on? I have a king-size duvet (on my double bed – how extra is that?) and trying to put the cover on is sometimes like trying to put trousers on a cow. That’s why I love this next video. It’s called the Duvet Burrito method and it’s so easy. Enjoy!

 

Next Meeting

May’s speaker will be Lucy from the Independent Living Centre. We’ve been looking forward to getting her in to speak for a good while so don’t miss it. The meeting will take place, as ever, at All Saints’ Church Hall, Ryde. Be there for 1:30 on the 14th and you won’t miss a thing!

 

And finally…

My last video offering. Giving the dog a bath…from the dog’s point of view.

See you on the 14th!

 

Chris.

Hi there!

The poet S. J. Goldner once wrote:

I’d like to spend April, sitting on a hill,
With a mushroom for a parasol and violets for a frill.

Well, that’s Gabapentin for you. Nonetheless, April is with us, the year is getting better and, with a bit of luck, so are you.

If you missed it, last month we had a terrific talk from Dr Gary Lee who shared with us his plans for Fibromyalgia research and also showed us his impressive dancing mojo. It was a great afternoon and we’re very grateful to Gary for finding the time to join us.

 

On the Web:

Firstly, I am delighted to welcome Health Matters who are advertising with us on the www.wightfibrogroup.org website. Heath Matters is run by Michelle Callaghan, who says:

“Health Matters  offers specific light touch treatments, beneficial for those suffering fibromyalgia, CFS and ME.

 

Throughout my career within the massage industry I have developed an interest in neurological and autoimmune disorders.

 

My work helps those with acute and chronic, pain, with manual therapy work and Spinal touch treatments, which are key in maintaining health.

 

My Health Matters Clinic I started 1989 is a hub for person centred treatment, aiming to promote health and well being using an holistic and focused personal plan.

 

My client base is currently built from Island networking clients, some of whom  have monthly treatments, quite often they then recommend me, to their family. friends and neighbours.

 

I continue my training with Advanced Clinical Massage regularly , up dating my knowledge and training with Jing Advanced Massage .

 

Treatments include: 

  • Aromatherapy
  • Spinal Touch Treatment
  • Advanced Clinical Massage  (on going training)
  • Bach flower remedies
  • Hopi ear candle therapy 
  • Reflexology
  • TMJ Pain
  • Light Therapy for, SAD

 

I look forward to helping the fibromyalgia group if you would like to try a treatment with me contact :

Michelle: Mobile 07845 367 838, landline 01983 868 756

Website www.healthmatters.pro

 

Thank you

Michelle Callaghan F.H.T  I.I.H.H.T B.F.R.P Cert ST”

I know that Karen Smith has tried the Spinal Touch Treatment and found it extremely helpful with her back pain. You can find Health Matters on the home page of our website, so why not get in touch and see if Michelle can help you.

Secondly, we have a couple of new articles on the website, including one on how modern life can leave fibromyalgia sufferers feeling drained, exhausted and struggling with Brainfog. You can find it at http://www.wightfibrogroup.org/pulled-in-all-directions/

 

Lysine

A recent article on the Very Well Health website indicated that the amino acid Lysine (or L-Lysine) has been found to be helpful to Fibro and CFS sufferers. Although research hasn’t specifically looked at Fibromyalgia (and I’m always wary of anything which hasn’t been researched) some studies have linked Lysine to:

  • Suppression of herpes viruses
  • Increasing calcium absorption, which may be helpful in osteoporosis
  • Lowering glucose levels
  • Alleviating migraines
  • Lessening anxiety
  • Aiding in wound and fracture healing

all of which seem quite handy. You can get Lysine in your diet from Meat, fish, eggs and dairy products, and you can take a supplement. If you would like to know more I’ve linked the article below.

 

Ow! It doesn’t hurt!

Last week there was an article on the BBC website about a woman who doesn’t feel pain. Jo Cameron only realises her skin is burning when she smells singed flesh. She often burns her arms on the oven, but feels no pain to warn her. Neither does she suffer with anxiety. All this sounds like the very opposite of some of the symptoms of Fibromyalgia.

I don’t know about you, but I’m a complete wimp when it comes to pain. Mainly because everything REALLY hurts! I simply cannot imagine what it must be like not only to feel no pain, but to not be in pain. At all. To tell the truth, I cannot remember a time in my adult life when I have not been in pain.

Jo Cameron’s condition is apparently down to a genetic mutation which only two people in the world have. Research is going on to find out how this mutation might help others with things like surgery and chronic pain. I can’t wait for that one!

If you want to know more, there’s a link to the BBC article below.

 

April Meeting

This will be on the 9th of April at All Saint’s Church Hall, 1:30 pm as always. This month we will be joined by Val who is going to give us a very entertaining talk on her travels around the world. I don’t know about you but I loved travelling to different places when I was younger. The different cultures, customs and languages. Even went to Gurnard once. Now that’s foreign!

That’s all for now. Don’t forget to check the website for regular updates and links to our Facebook page. In the mean time, look after yourself.

 

All the best,

 

Chris.

 

Links:

Lysine article:
https://www.verywellhealth.com/lysine-for-fibromyalgia-chronic-fatigue-syndrome-715985

The woman who doesn’t feel pain:
https://www.bbc.co.uk/news/uk-scotland-highlands-islands-47719718

Stress and modern life article:
http://www.wightfibrogroup.org/pulled-in-all-directions/

Poem extract from ‘April Music’ by S J Goldner (1993)

Hi There!

I cannot believe it’s March already. Longer nights. Warmer days. I can’t wait. It always feels good to me when it feels like we can leave the dark winter days behind. My Fibro is always a bit happier, too.

Firstly, I would like that thank all of you who took a moment to look over the new website. And thanks for all the supportive comments, as well. It is still growing and we hope for it to become a substantial resource for everyone.

Secondly – Dr Gary Lee will be coming to speak to us in March! The projector has been dusted off and Karen is ironing the screen as I type. It’s always a pleasure to have Gary visit us, and this is no exception. Since launching The Future Clinic, Gary has been rushed off his feet, so we’re very grateful to him for making time for us. Let’s all be there to welcome him.

 

Now, I have an important announcement:

Subs and fees

Until now, we have always paid an annual membership fee of £6.00 and a monthly subscription of £3.00. This has always meant two lots of monies to be found by you, paid, collected and accounted for. And with members joining at different times of the year, our Treasurer, Gill, can have a bit of a task on her hands keeping track of everything.

We need this to be easier and fairer. So, from the 1st of March 2019 the annual fee will be divided up and integrated into the monthly charge, giving a monthly subscription of £3.50. By re-structuring it like this, we can avoid increasing it overall. You’re not paying any extra, and I hope, for some of you, it makes life a bit easier.

 

Why do this Now?

Our charges are the same as they were in 2014, which is the last time we had any actual increases. Unfortunately, we can’t say the same for anything else. Essentials like tea, coffee and biscuits have all gone up over the last five years.

And in January, the cost of the Church Hall went up too by 16%. So to help us manage these monthly costs it makes sense for us to make the most of our monthly income.

What about Carers and Assistants?

I mentioned making things fairer, and that’s why the £3.50 charge will be payable by all attendees to meetings, including carers and assistants. These valuable supporters have always been welcome and never excluded from the group’s activities, refreshments, talks and so forth. So, if you are a carer, I hope you will understand that we rely on everybody’s financial contribution to help keep the Wight Fibro Group going. Your help and support is just as important to us as everybody else’s, and we’re glad to have you on board.

 

The tragic cost of a PIP decision

“If they hadn’t cut her PIP, my daughter would still be here.”

The mother of a woman who died after her PIP was stopped has successfully sued Capita, the government-appointed body responsible for the decision.

Victoria Smith passed away last July of a brain haemorrhage, just weeks after being told she was not eligible for Personal Independence Payments (PIP). She was 33.

Although Ms Smith died of a brain haemorrhage, doctors told the family her underlying conditions, particularly the fibromyalgia, had deteriorated as well. The week after she died, a tribunal decided she was eligible for PIP.

Furious with the conclusions the Capita employee had reached, Mrs Kemlo took legal action against the company for maladministration; in essence making inaccurate statements.

The family has now been awarded £10,000 in damages.

This is a terrible case and highlights the struggle we face on a daily basis simply to get the most basic help. My thanks go to Yvonne Yelland for passing this story on to us. You can read the full BBC article using the link at the end of this newsletter.

 

But things could change…

As doctors start to realize fibro is a real condition like patients have been saying all along, finding a definitive diagnostic test is top of mind. But because we still don’t know what causes fibromyalgia, it’s much harder to develop tests, effective treatments or even a cure because we still don’t know what cause to target. However, experts believe in the next five to 10 years, a definitive yes-no test for fibro will be available.

Two blood tests — FM/a and IsolateFibromyalgia — think they may already have the answer.

At present these tests are only available in America, and, as long as our health department is run by the Posh Boys, we’re unlikely to see in on the NHS anytime soon. But it could be available privately in the UK someday, and wouldn’t that be a good thing, at least? Many of us have a hell of a time trying to get a diagnosis, and this is especially true for men with the condition. An accurate, reliable and repeatable test which give a firm yes/no result would be a life-changing breakthrough for thousands of us.

And it might mean no more tragic cases like Victoria Smith.

Read more using the link at the end.

 

Our next meeting will be on the 12th of March. All Saints Church Hall, 1:30 onwards, as always.

 

See you there!

 

Chris.

 

Links:

Capita to pay damages to family of woman denied benefits

Fibromyalgia Blood Tests

Hi Everyone!

New Year – New Start

2018 saw many changes, not least of which was the stepping down of Karen Smith as Group Leader. Since Karen’s departure, Gill, Lesley and myself have been busily working behind the scenes to continue Karen’s legacy and take the Fibromyalgia Support Group forward. And boy have we been busy!

First of all I am delighted to announce the launch of our NEW WEBSITE!!

 

www.wightfibrogroup.org

 

It’s there to help anyone on the island with FMS, CFS and related conditions, with articles, newsletters and information about forthcoming events. I’m expecting it to grow over the coming weeks as more articles and information are added. The site is a resource for you to use and rely on.

To help raise some much-needed money for the group we are also selling a limited amount of advertising space on the site. This will be exclusively for clinical practitioners whose services will benefit Fibro sufferers and the like. This would include chiropractors, pain relief specialists, physiotherapists, psychotherapists and so forth. If you are interested, or know a practitioner who might be, take a look at the ‘Advertising’ page here.

Secondly, I want to announce a drive to get new members and welcome old ones back to the group. I’m always saying that we are community, and the Group Meetings are the heartbeat of that community. You can see all the doctors you want, but there’s nothing like sitting down and having a cup of tea with someone who actually knows what it’s like. Someone who understands.

So we would like to ask you:

  • What did you expect from the group when you joined?
  • What would you like to see more of at Group Meetings?
  • If you haven’t attended for a while, what would bring you back?

I cannot begin to tell you how important this is to us, so please tell us. And be as frank and forthright as you please. This is a community for all of us and we want everyone to feel included.

As always, the email address is iwfmsgfibrogroup@gmail.com. I’m looking forward to hearing from you.

 

Next meeting – Yoga!

This will be a very special month because we will be having a seated yoga presentation followed by a relaxation session. Alison is coming all the way from Totland, so it would be great if we could all be there, both to welcome her, and to benefit as much as possible from what she has to teach us.

Alison is making no charge for this, but it would be very helpful to her if, as a group, we could all donate something to her fuel costs.

 

Raffle Prizes

The monthly raffle is always great fun but we’re running low on prizes. Given that it’s now a month since Christmas and the relatives aren’t really going to care what happened to that awful pair of socks they bought you, why not donate them to the raffle? The same goes for that novelty custard-flavoured bubble bath, and those singing slippers.

Seriously, we’ve all got stuff knocking around we don’t need, so bring it along and let it go to a good cause.

 

Mood Music

Finally, do you ever use Deezer? If you’re not familiar with Deezer.com, it’s an online music service which lets you listen to music free of charge. Now, if you’re listening through their website, you get adverts in between all the tracks, which can be a little off-putting.

But, if you download the Deezer app onto your computer, you can listen to your chosen music without the ads. Bonza!

What for? I hear you ask. Well, Deezer, apart from having plenty of Duran Duran, also have a terrific range of relaxing music to help soothe and relieve jangling nerves and tired minds. Just go to Deezer.com, put ‘soothing’ into the search bar and you’ll see what I mean.

If you click on the little heart icon which appears over the ‘album cover’ then this will be kept in your listing and added to you app when you run it. And it’s all legitimate and free.

In no time you’ll be a proper Deezer Geezer, sippin’ a Bacardi breezer while chillin’ like a freezer, innit?! (I don’t actually get paid for this, you know).

So, that’s it for now. The next meeting is on the 12th at 1:30, just like it says on the website. See you there!

 

All the best,

 

Chris.