Below are some links to websites which some of our
members have found useful. We have tried to keep this list concise to make it
manageable.
Support Groups for aspects of FMS
IBS
Network
A UK organisation for sufferers of Irritable Bowel Syndrome.
Vulvar
Pain Society
A UK organisation.
Vulvar
Pain Foundation
The US organisation which Dr St. Amand discusses in the book. They have a
page on guaifenesin, as well as the low-oxalate diet and topical oestrogen
therapy.
Bladder
Pain Syndrome Association
This very useful UK website refers to Fibromyalgia and IBS as related to
bladder pain.
UK
Interstitial Cystitis Support Group
.A UK based group.
Letter to Normals
Many FMS/CFS websites quote the 'letter to normals' which explains what
suffering from FMS is like. If you are having trouble explaining FMS to
relatives or friends, have a look at the original 'letter
to normals' on Bek Oberin's website. The website gives permission to print
out the letter for personal use.
Claudia Marek has written her own version of the letter in her book (click
to link to books page).
HG websites
NEW! recipe archive archive
available on Dr St. Amand's website, with recipes sent in by guaiers. All
suitable for Dr St. Amand's diet. Click
here.
Low
Carb in the UK
Low-Carb
Luxury
A US site with lots of information and recipes.
Low Carb Products
Low-carb products are still hard to come by in the UK. Here are some online
stores (be aware that products are expensive and also that some may not be
compativle with Dr St. Amand's diet if you are hypoglycaemic.)
These stores are all based in the UK. You can order online or by phone:
Low-carb
Megastore
Low-carb
International
Carblife
Sugarlite
Splenda (sucralose) is a new sweetner widely available in UK supermarkets.
The great advantage of Splenda is that you can cook with it. Sainsbury's sell it
but not in all stores. If your local store doesn't sell it, Sainsbury's have a
customer service helpline you can call and they will find the nearest store
which sells it:
0800 636262
Claudia Marek has told us about a product called Wondercocoa. This is
caffeine-free, sugar-free and fat-free! It is therefore suitable for those with
hypoglycaemia. It makes a lovely hot chocolate sweetened with Splenda!
Unfortunately none of the UK sites sell it yet.
UK-FMS-GUAI member Anna Worthington buys it from a US company:
The
Mail Order Catalog for Healthy Eating
00 1 931 964
2241
A 7oz can costs $7.95 + shipping.
"I have ordered 2 or 3 and not paid any customs on the package
(yet!), so I think it is most cost-effective to buy in bulk."
Drug-Free Pain Relief
Char, admin team member for Dr St. Amand's Guai Group, highly recommends
various self-massage tools for pain relief and to ease those painful swollen
cycling lumps.
One of the tools she recommends for self massage is called a 'bonger'! It is
like a palette knife with a rubber ball on the end. You use it to gently tap
like a percussion instrument over the painful areas and it stimulates blood
flow. Bongers are available at 'Walk-In Back Rub' stores. There are several
branches in London and new ones due in Manchester and Birmingham:
Walk-In
Back Rub
They also sell an electric head massager, recommended by several of our
members.
Back
2
0207 935 0351
28 Wigmore St,
London.
W1U 2RN.
A shop dedicated to back care. They sell the other product recommended by
Char, a 'backnobber'. This is a tool which helps you get to those awkward
shoulder lumps for self-massage. They also stock ergonomically designed
furniture, massage tools, seating block, travel pillows, etc.
Trigger
Point Book
This book has been recommended to show you how to work on trigger points with
your 'backnobber'. You can order from amazon.co.uk.
Many guaiers recommend emu oil. This sal-free oil is an excellent
moisturiser, can be used for massage and is meant to help ease sore muscles.
Women suffering from vulvodynia often find it helpful to protect sore genital
tissue.
There are many online sources for emu oil but beware! Many have lavender
fragrance which may be an essential oil and many products also contain plant
extract which are SAL-FULL and BLOCK GUAI.
This is one UK source for an unfragranced pure emu oil:
The
Healthy House
01453 752216
Cost: #12.95 for 55g (a little goes a long way).
The Healthy House also stock many products for those with chemical
sensitivities or allergies.
Lightboxes
Some fibromyalgics have found lightboxes help their symptoms while they
reverse on guai. If your symptoms (especially fatigue and depression) worsen in
Winter, a lightbox may help.
Outside-In
This UK company allow you to have a home trial.
