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.

Hello, and a Happy New Year!

I hope your Christmas has been filled with fun, food and gifts you actually wanted. I don’t know about you but, for me, the beginning of a New Year fills me with excitement and hope for all the things that might be, complemented by a niggle of dismay for all the things that probably will be. You know what I mean: Bills, Council Tax, Piers Morgan and, of course, Brexit. And is it just me or are Brexit Secretaries getting younger these days?

But it doesn’t have to be all doom and gloom! Positivity is, after all, a state of mind. A friend of mine started a ‘Gratitude Diary’ this time last year. If you’ve never heard of one of these, it’s simply a book where, every day, you make a note of just one thing you are grateful for that day. It might be the care you received from a friend, the comfort of a chair, relief from pain, being able to help, or simply the opportunity to love someone. Something you’re glad to have in your life.

I asked her what she got out of it and she said: “I’m not so stressed now. I’ve got a book full of good things which happened. They’re all little things but they matter because they all happened to me.” She went on: “It helps me work out what needs worrying about and what doesn’t.”

You know as well as I do how much Fibro and CFS are affected by stress. In fact, what illness isn’t? Personally I’m up for anything which gets my blood pressure down and stops me waking in a cold sweat at 4 a.m. I’m going to give it a try. How about you?

Incidentally, never underestimate the importance of having someone to love. I lost my little Cairn Terrier, Alfie, in October and more than anything I miss the chance to hold him close and tickle his tummy. I’ve tried it with the missus but She just looks at me suspiciously.

American Supper

At the next meeting we will be having our annual American Supper, so bring your favourite finger foods, sweets, pies and sausage rolls. There is a (small) oven to warm things in but that’s about the limit.

Because of this there will not be a speaker this month but we expect to have one for next month. More details in next month’s newsletter.

Concessionary Bus Fares

We all know that there are Free Bus Passes available for people with disabilities but you might not be fully aware which ones. People Matter IW sent us the following which might help if you’re needing a bit of clarification:

The English National Concessionary Bus Pass

Contact the council to find out who issues disabled bus passes in our area as part of the English National Concessionary Travel Scheme. People are eligible for a disabled person’s pass if they are ‘eligible disabled’. Anyone who qualifies by age or whose disability falls within one of seven categories specified by the Department of Transport. Their guidance states:

Disabled People

1.6 There are seven categories of disabled people who are entitled to the statutory minimum concession and these are set out in section 146 of the Transport Act 2000 and section 240(5) of the Greater London Authority Act (in relation to London).

1.7 An eligible disabled person is someone who: a. Is blind or partially sighted b. Is profoundly or severely deaf c. Is without speech d. Has a disability, or has suffered an injury, which has a substantial and long-term adverse effect on his or her ability to walk e. Does not have arms or has long-term loss of the use of both arms f. Has a learning disability, that is, a state of arrested or incomplete development of mind which includes significant impairment of intelligence and social functioning g. Would, if he or she applied for the grant of a licence to drive a motor vehicle under Part III of the Road Traffic Act 1988, have his/her application refused pursuant to section 92 of the Act (physical fitness) otherwise than on the ground of persistent misuse of drugs or alcohol.

1.8 DfT has produced guidance to local authorities on assessing eligibility of disabled people, which can be found at:

http://www.dft.gov.uk/pgr/regional/buses/concessionary/informationlocalauthorities/guidancedisabled/

See you on the 8th in Ryde. All Saints’ Church Hall, 1:30, as always!

Happy New Year,

Chris.

Hi Everyone!

I hope this newsletter finds you well. We’ve had some dreary damp weather of late, but Christmas is on the way so it’s all mince pies and log fires from here on.

My new hobby

We have a lovely big shower in our house. Plenty of room for a good scrub and sloosh!  It also has plenty of glass. And with glass comes limescale. Did you know (and you probably do) that the Isle of Wight has some of the hardest water in the country? It only takes a couple of uses for our shower to look like it’s been lightly dusted in flour.

Cleaning a shower, or any surface with limescale, can be difficult. Especially if you have trouble with your hands or other joints. Sprays and things are available, but they are expensive, and I find they make my chest bad with the vapours they give off.

I tried vinegar, but that irritates my chest just as bad. So then I tried lemon juice. And it works! A 36p bottle of lemon juice mixed with two teaspoons of liquid soap will clean off any lime scale, and it just rinses away. I stick it in a small pump-up garden sprayer and do the shower with it. Leave it 10 minutes and then rinse. Brilliant. It’s cheap, easy to make, and no nasty chemicals. And no painful, laborious scrubbing.

I’m sure there are some of you who are thinking “Yes, Chris, we’ve known this for years”. But you’ve got to remember I’m a bloke, and all this cleaning lark is a whole new world to be explored. For example, did you know you can separate eggs with a hoover? I bet you didn’t. And it scrambles them as well. Fab.

Next month I’ll tell you how to clean paintwork with some mayonnaise and the top off a crème brulee.

Yoga

Now, an appeal. One of our members is looking for a ‘Fibro-friendly yoga teacher’. This sounds like something which could be useful to many of us, so if you know of, or attend the classes of someone like this, perhaps you could email me on this address iwfmsgfibrogroup@gmail.com and I’ll pass it on.

Something fishy going on

How are your Omega-3 levels these days? I came across an article from 2006 by researchers at Pittsburgh University’s Department of Neurological Surgery about the effectiveness of Omega-3 fish oils compared to NSAIDs like Ibuprofen. 250 patients were put on doses of 1200mg per day. Of these:

“Fifty-nine percent discontinued to take their prescription NSAID medications for pain. Sixty percent stated that their overall pain was improved, and 60% stated that their joint pain had improved. Eighty percent stated they were satisfied with their improvement, and 88% stated they would continue to take the fish oil. There were no significant side effects reported.” (Maroon and Bost, 2006. Source: PubMed 16531187 – link below)

The article goes on to compare the anti-inflammatory effects of Omega-3 EFA’s as being equivalent to Ibuprofen. I’ll say that again: Equivalent To Ibuprofen. I don’t know about you but I’m off to Boots in the morning because this has got to be worth a try. Especially if it means fewer drugs.

“To sleep – perchance to dream”

If you’re anything like me and thousands of other Fibro sufferers, sleep doesn’t come easy. Christmas, with all its noises, distractions and excitements can just make this worse. Now, I’m not going all humbug about this – far from it. But with all the pre-Christmas running around and preparing, the stress levels can run away with themselves a bit. So here are a few tips for protecting your sleep and your self:

  • Set aside an hour to unwind before bed.
  • Make a list of the things you need to do tomorrow, so they don’t play on your mind all night.
  • Don’t go to bed hungry. Or overfed.
  • Don’t use alcohol to sleep. It makes you wake up later.
  • Practice Mindfulness to calm your mind before bed. If you’re not sure how you can find some simple exercises using the link below. The gong meditation is particularly calming.
  • Try to make your home, or at least, your bedroom, restful. Soft lighting, some gentle sounds playing perhaps.

Try some of the above and see if you can’t get a decent nights’ sleep before you get up to unwrap your presents.

Our Next Meeting…

Will be on the 8th of January 2019. We will be having an American Supper so, if you are attending, please bring something to share. These are always lovely events so don’t miss out. As usual it will be at All Saint’s Church Hall, Ryde at 1:30 pm.

In the meantime, stay well, have a great Christmas, and best wishes for the New Year!

All the best,

Chris

Links:

Omega-3 Oils:
https://www.ncbi.nlm.nih.gov/pubmed/16531187

Mindfulness Exercises:
http://www.gestalt-therapy.co.uk/practice/

 

Addendum:

we had a response regarding the appeal for the Yoga teacher. There is one in Ryde by the name of Anne Osborne. Her Facebook page is ‘Create Harmony‘. Hope you find this helpful.

Hi everyone,

Halloween has been and gone, the weather is getting colder and Christmas is on its way. I don’t know about you, but it’s about this time of year that I get out the sofa duvet (yes, I have one) and spend the evenings snuggled up in front of the telly with mugs of hot chocolate. It’s certainly important to keep warm and not let the cold make your symptoms worse. However, on the subject of aggravated symptoms, I wonder if you’ve heard about this…

A hidden poison

In the late 1960’s a Japanese scientist, Yoshiyuki Takasaki, invented a sweetener.  It was cheap, easily produced, and considerably sweeter than sugar.  It became an instant hit with manufacturers the world over and is now found in almost every ready-made product you can think of from cakes to bread to pizza to beans to… well, the list really is endless.  The most common use is in fizzy drinks, which is where many of the problems have started.

You might be forgiven for thinking it’s an artificial sweetener like aspartame, phenylalanine, sucralose or sorbitol.  But it is none of these.  It’s High Fructose Corn Syrup.

And it’s not good.

You have probably heard of fructose. It’s the sugar in most fruits and root vegetables.  Eaten as part of a balanced diet it won’t do much harm.  There is plenty of information on what makes for a balanced diet (I even read some of it once) so I won’t bore you with that.

But many of the processed foods available to us contain much more fructose than we are meant to deal with, and this is causing all sorts of problems for humans of all ages.  I’m not going to get into the complicated chemistry of what your body gets up to when you’re not looking, but very simply, when fructose is metabolised by the liver it creates, among other things, lipid (i.e. fat) cells and uric acid.

As a result children are becoming obese when they shouldn’t, and adults are getting arthritic diseases long before they should.  Every year more and more discoveries are being made about the detrimental effects of fructose.

So what has this got to do with fibromyalgia? Two things: The first is this – given that we almost all suffer with joint pain then it might be worth knowing that some of this could be exacerbated by the amount of concentrated fructose hidden in the things we eat.  Something it is fairly easy to watch out for. 

The second is a recent discovery about the effects of fructose in the brain and how this might be affecting fibromyalgia sufferers in particular.

According to an article in the Journal of Pain Research, researchers believe that a lot of the chronic pain we experience with Fibromyalgia is down to a protein called Fractalkine.  This protein may also be responsible for the neuro (brain-related) inflammation which can result in a hypersensitivity to pain, sensory stimuli, sleep problems, cognitive problems, etc.  If you want to read these articles, take a look at Link 1, below. My thanks go to Karen for passing this on to me.

If they are right, then controlling this protein could make a huge difference to Fibro sufferers worldwide.  Many studies are taking place and research is ongoing, so watch this space.

But what about our little friend fructose?  What’s that got to do with all this?  Well, another study found that high-carbohydrate diets, particularly those with a lot of fructose in them, caused an increase in this Fractalkine protein and therefore an increase in neuro-inflammation and pain.  You can find more about it by following Link 2 below.

So maybe take a look for all the high-fructose corn syrup (HFCS) in your foods and try to eliminate it. It’s a small thing but it may help. By the way, HFCS also gets called natural corn syrup, isolated fructose, maize (a native word for corn) syrup, glucose/fructose syrup and tapioca syrup (not from corn, but also fructose). The food manufacturers are sneaky, so watch out.

If you want to know more about the hazards of fructose and sugars in general check out Dr Robert Lustig on YouTube. Also, Professor John Yudkin’s book “Pure, white and deadly” is excellent.

The Future Clinic Launch Party

Don’t forget that Dr Gary Lee is holding a launch party for The Future Clinic. The event will be at the Quay Arts centre on the 7th of November, and it starts at 6:15. If you haven’t got your name down for it then please do so quickly because numbers are extremely limited now. You can contact Gary directly on garyslee@btinternet.com to find out more.

Next meeting

Our next meeting will be on the 13th of November. Please bring your deposits for the Christmas meal if you haven’t already paid. This will also be your last opportunity to purchase any books from the library so don’t miss out.

We will be holding the Christmas Raffle this meeting so please bring plenty of money! The tickets will be £1 each and I would like to ask you to buy at least two tickets. We need this money to help us meet costs and every penny helps. We have some excellent prizes so it will be money well spent!

The more the merrier, as they say, so come along and let’s make the most of the last meeting of the year!

December and January

There will not be a meeting in December as this will be when we go out for our Christmas Meal. Instead we will be meeting again on the 8th of January. We often have an American Supper on the first meeting of the year, so if you have any ideas or suggestions for this event please come along to the November meeting and let us know what you think.

Finally, an appeal…

Until recently we used to enjoy really good attendances every month. Understandably, it has dropped a little over the last few months – people always have ‘something better to do’ during summer. After all, we’re on an island surrounded by beaches. But now we are settling into the ‘indoors’ time of year this is a good time to come back to the group if you have been away for a while. I’ve said before that, small as we may be, we are still a community, and a community thrives when its members come together. So why not find the time to drop by every month, have a cuppa, munch a biscuit and be with friends. Because you will always find us here.

Until the 13th, look after yourself and keep warm!

Chris.

Link 1: https://www.healthrising.org/blog/2018/10/13/fibromyalgia-neuroinflammation-finding-could-open-new-treatment-options/

Link 2: https://www.healthrising.org/blog/2017/05/14/fibromyalgia-neuroinflammation-fractalkine-chronic-pain/

Hello and Autumnal Greetings to you!

I can’t believe how good the weather has been lately. I hope you’ve all been able to enjoy it one way or another.

This is our first newsletter since Karen began to hand over the reins in preparation for her move to Spain. Whilst we haven’t lost Karen yet, for the time being Gill, Lesley and Myself will be taking care of business. It is only now that I, personally, have begun to appreciate the huge amount of work Karen has done for this group over the years, and I think we all owe her a huge vote of thanks for all her devotion, innovation and hard work.

We’re also very fortunate that we still have Gill and Lesley to keep it all together, sustained and fortified by the sterling tea-making skills of yours truly.

It’s Chriiiiiiiiistmasaaass!

Well, not quite, but it will soon be, and we need to be thinking about our annual yuletide outing. Yes! Wrap your stick with tinsel and let joy be unconfined! A selection of menus will be available at the next meeting so be ready to make your choices as to both location and food. As always, most restaurants require a deposit so have a look down the back of the sofa and make sure you bring enough money to cover this. Typically, most places want between £5 and £10.

Winter draws on!

By which I mean the regular raffle draw and, of course, the Christmas draw. If you have any items to donate of either (or maybe both) of these events please bring them to our meetings.

“Unaccustomed as I am…”

We don’t have a speaker for this month (at least not at the time of writing), so after the mindfulness session we will have a quiz. However, if you know of someone who might like to speak at one of our meetings, or if you have something which you would like to share, then please come and have a chat with Gill, Lesley or myself.

Book Sale

Over the years we have acquired a great many books in our clinical library. This has become a bit too cumbersome to haul back and forth and so we are having a sale of some of them. So, if you’re interested, bring your hard-earned cash along to the next meeting where you will find a selection of Fibromyalgia textbooks priced at between £1 and £2. At these prices you will definitely be getting Value for Money.

Living with Fibromyalgia – a personal story

During September I read an article by Sally Perry, published on the ‘On The Wight’ website. Although we don’t see her very often, Sally is a member of our group and in her article she writes of her experiences, not only with the difficulties of getting a diagnosis, but also some of the extraordinary challenges she faced in living the Fibromyalgia life.

Sally opens her article with these words:

“It’s not something I frequently talk about – until recently only about ten people on the Island knew I live with this chronic and debilitating condition.

I’ve preferred to keep it that way – but feel that now is the right time to open up and tell my story.”

Further on, Sally spoke of the grieving process she went through, and this struck a particular chord with me:

“I found a drug regime that helps considerably in taking the edge off the pain and allows me – to those looking from the outside in – to lead a ‘normal’ life. That, and the incredible support from my husband and daughter, as well as family and friends.

However, coming to terms with losing the life you had and will never get back is like dealing with grief. There are several stages you have to go through to reach the point of acceptance. Shock, anger, guilt, denial, depression and then hope.”

I thoroughly enjoyed Sally’s article but it left me wondering how many others out there have something to say. Fibro can be very isolating and not many of us truly get the chance to share the up and downs, trials and triumphs of living with it.

We don’t all have the luxury of someone with whom we can share our deepest feelings. And I know as well as anyone that, at times, it is impossible to speak, to find words for those feelings. Our own experience, our truth, goes unheard.

At time like this, simply writing your truth down can be very helpful. It can help you organize your thoughts, understand your experiences, deal with anxieties and plan for a more hopeful future. I’ve used this with clients and it works.

So I would like to invite you to get a pen and paper, or computer, or, if you’re like me, some crayons and a sheet of old wallpaper, and write down a few lines about what your fibro is like for you. Things like:

  • How is your life different from before fibro?
  • How do you see yourself now?
  • How do you think others see you?
  • What would you say to someone who is newly diagnosed?
  • What would you say to your younger, healthier self?
  • What are your hopes for the future?
  • Basically, anything you like, as long as it’s your truth

Let me be that clear that this isn’t any kind of exam or competition. It doesn’t matter if you never show it to anyone. Make it a letter to yourself, if you like. The important thing is giving yourself a voice. So be as free and honest as you like with it.

Of course, there’s no reason you can’t share it with someone if you want to. Bring it to the group and show a friend, maybe. And if, at the next meeting, someone wants to read you theirs, take the time to listen to them. Because, small as we may be, we more than just a support group: We are a community. We all deserve to be heard.

My thanks go to Sally for letting us use her article. It’s a splendid read, so why not click here: http://wig.ht/2ltP and take a look. I’m sure you’ll enjoy it.

It’s the real thing

Coca-Cola (never one to miss an opportunity) are getting on the cannabis bandwagon. They are in talks with Canadian cannabis producer Aurora Cannabis with a view to producing cannabis-infused beverages. Of course, a hundred years ago they were flogging coke with real cocaine in it, so we shouldn’t be surprised.

Nor are they the first to go down the Cannabidiol drinks route – Molson-Coors announced the production of a cannabis enriched beer (would that be a cannabeer? Geddit? Cannabeer? Oh, never mind!) and another firm, Corona, has invested $4bn (yes, four billion dollars!) in growing cannabis for commercial uses.

What we don’t know is how much cannabidiol will be in these drinks. I suspect it will be no more than a novelty amount and, by the time you’ve drunk enough to get any benefit, you’ll have diabetes, gout, and your teeth will have dropped out.

Click here for the full BBC article: https://www.bbc.co.uk/news/business-45545233  

And finally…

Our next meeting will be on the 9th of October. Don’t forget to bring your extra money for the Christmas Meal Deposits and for all those book you want to buy. Until then, take care and go gently,

Chris.