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FIBROMYALGIA

When I was diagnosed with Fibromyalgia some years ago now, it was in one way really bad news that hit me like a ton of bricks and yet in another very positive way it was good news because it meant I was not a hypochondriac.

I had for many years been back and forth to the doctors, I was under several different consultants at 2 different hospitals, who invariably could not find anything causing the terrible symptoms I was having, although nobody denied I was experiencing a multitude of symptoms nobody was able to treat any of them and more frustratingly nobody had a cause or any answers.

I was referred to see a rheumatologist in the late 1990's, who carried out a number of tests, including blood and physical tests, before sitting me down and saying he had good and bad news, the good news being he knew what was wrong with me, it was called Fibromyalgia, the bad news there was no treatment and no cure.

I spent quite a few years trying to deny it and fighting all the way, which to my cost was wrong, I ended up with my health deteriorating to the point where I was spending more and more time in bed due to flare ups or one of the many viruses I had caught that were going around.

In complete frustration and desperation I returned to see the rheumatologist who referred me to an OT called Christina, who was like a very special angel, she really helped me come to terms with the illness, she helped by recommending a excellent book 'The First Year of Fibromyalgia' by Claudia Craig Marek, UK edition, as the author is American, it is a patient-expert guide for the newly diagnosed and even though I had been diagnosed some years before reading it, it was really the best thing I could have done, and I would thoroughly recommend it to everybody who has this illness, whether you are newly diagnosed or not.

I also purchased copies for my Mum and my partner, because this illness not only has a huge impact on the life of the person who has it, it also affects those we love, our families, our friends, our work, our social life there is not a part of our lives that is not in some way touched by this illness and by reading this book our families can have some insight into what it is we are dealing with, it helps explain the terrible mood swings, memory loss and irritability, it also goes some way to explaining why one day we can feel able to go out and the next or even later that same day, we have to go to bed and are unable to do anything. Having this illness makes it very difficult to plan anything, it is vital to manage our time well, not over do it when having a "good day" if there is something important coming up, we need to plan well for it, making sure the days preceding the important event are clear to have as rest days and also make sure that the days following the event are clear to rest, because over doing it can lead to days if not weeks of bed rest due to going into flare up.

There are many books and resources available on Fibromyalgia but if you are only going to buy one, make sure it is 'The First Year of Fibromyalgia' which you can purchase from Amazon UK.

It is important you have a GP that is understanding and knows about Fibromyalgia, if you do not have a understanding GP, it would be to your benefit to find one that is. There is nothing worse than going through this illness alone and misunderstood.

A website that is worth a visit:
www.fibromyalgia-associationuk.org or www.fmauk.org for short

On the above site you will be able to subscribe to FaMily Magazine, which will pop through your door monthly, like a well loved friend, this magazine has advice for all of us living with this condition as well as a useful read for family and friends, it has articles on the latest research, medications, complimentary therapies, recipes, letters page, telephone numbers (for use by paid up members of FaMily Magazine) for people unable to access the internet or local support groups.

It was international Fibromyalgia day on Monday 12th May, visit www.fmauk.org

For more information send a 40p SAE to Fibromyalgia Association UK, PO Box 206, Stourbridge, West Midlands, DY9 8YL

On the website you will find information on the Fibromyalgia International Awareness Day.

Here is a flyer from the association.

Please note, this is an Adobe® Acrobat document,
you will need the free Adobe Reader in order to read it.

If you live in Winchester or the surrounding areas, the local support group usually meets on the 3rd Monday (subject to change) of each month, details on the flyer which you can view by clicking on this link [PDF document].

I have found that changing the way I eat has helped a lot especially with one of the symptoms of FM, which is hypoglycaemia, the diet includes eating a low GI diet, meaning a low complex carbohydrate diet, things which are very high in carbohydrate include bread and sugar, so cutting right back on bread, cakes, chocolate, biscuits etc help a great deal, I try really hard not to eat these as well as cutting right down on potatoes and dairy products, I find the majority of the time I can cope with this and it really does help me feel a bit better, my moods are less erratic and I don't feel so sick or bloated all the time.

I find that on occasion I really need to eat something I should be leaving off just because I really want it, or I am fed up, or had enough of a restrictive diet, which includes the occasional slice of bread, there is a wonderful baker in Bitterne Park Triangle, Southampton, called Graham Cotton who has created what he calls the Wellbeing Formula Bread which is made with some great ingredients including several different seeds, it has no preservatives and so doesn't last very long, but he does sell the loaves in 2 slices ready packs, so they can go in the freezer ready for when you wish to use them, you can read more about this great loaf by clicking on the button below:

A scan of Graham Cottons' own leaflet about their wellbeing bread is available here as a PDF document.

This lovely little bakery also sells goods for diabetics, including a fruit loaf, which contains none of the sugar alternatives that for some of us can have nasty side effects.

If you are in the Southampton area or within a good driving distance, it is definitely worth a visit to this bakery and trying his Grahams bread, it is very tasty.

The address is:

G. Cotton Bakers,
21 Manor Farm Road,
Bitterne Park,
Southampton,
SO18 1NN.

Tel: 023 8055 9033

If you have been diagnosed with Fibromyalgia it can feel like you have been given a terrible life sentence, I am not going to tell you that your life will not change because it will and probably already has but you learn to manage your illness and live your life, not merely exist.

I would not say I now have all the answers for Fibromyalgia, not by a long shot but I am learning to manage this illness slightly better, the only advice I can give you, is that we are all individuals and what works for one might not work for another, do read 'The First Year of Fibromyalgia', do join a local support group, do take out a subscription for the FaMily Magazine and take a look around the Fibromyalgia website. And remember you are not alone

Love and light Glenda xx

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