Disclaimer: The information contained within this website is provided to assist people in understanding the guaifenesin protocol and does not offer medical advice. The UK-FMS-GUAI discussion group is not responsible for any errors, omissions or contents of its items. The contents of this website does not necessarily reflect the views of members of UK-FMS-GUAI. UK-FMS-GUAI does NOT endorse the advertisements on this website. They have nothing to do with the guaifenesin protocol and some of the products would directly interfere with the treatment. We are powerless to prevent them because Tripod, who provide free webspace, have put them there.
If you are interested in how guaifenesin could help you then take a look at this page.
Some of the UK-FMS-GUAI group members have been kind enough to share their experiences with the guaifenesin protocol on this website.
Well it has been a rocky road with many ups and downs. My story is probably the same as most of yours. Years of tests that proved inconclusive and eventually being told it was all in the head and caused by stress. even my parents and sisters questioned my sanity.
I started the guai journey in
March 2001 after diagnosing myself with fibromyalgia after scouring the internet
and finding the guai website and later it was confirmed at hospital. well I have
been on a real rollercoaster ride with plenty of ups and downs. In the beginning
I clung to every word and piece of info and encouragement from the website and
discussion groups. I got myself mapped regularly which showed I was making
progress even though most of the time I felt dreadful. I added in whey and was
starting to enjoy some good days but I started to get a bit frustrated as
although my maps showed progress it was very subtle. I decided to gradually up
my dose from 1200mg first to 1500mg then 1800mg. Last Christmas I made the fatal
mistake of trying the blocking test as I was still frustrated with my progress.
I upped my dose to double my cycling dose and went through 4 months of hell. On
the advice of a guai buddy from America I dropped the whey and reduced my
dose to 1200mg which I originally cycled on. My body calmed down and has made
steady progress since. I came to realise it is going to be a long haul for me
and accepted it. My weeks seem to be in a pattern now of 1 week intense cycling
which is just about tolerable 2 weeks of weaker cycling where I can function
reasonably well and 1 week of feeling great
I will list my complaints when
I started guai and now
Worst affliction Irritable
Bowel Syndrome-completely disappeared almost straight away
Anxiety and panic
attacks-Almost completely gone very occasional when cycling intensely
mood swings-completely gone
occasional when cycling
Energy-used to feel flaked out
all day going to bed about 9pm. Now up at 7am bed about 11.30p.m and function
Sleep- From complete insomnia
to a good 6 hour stretch most nights. still take Nytol
Teeth pain-very occasional
The one thing that is still with me when cycling and can be intolerable at times is the muscular burning pains. this wasn't with me much prior to guai but is sometimes more intense than ever. I focus on the fact that my body is strong enough now to pull out the phosphates and each cycle is another small step to wellness. Because of this I am still not well enough to work.
One thing that I have found
very difficult to come to terms with is that I have passed this illness on to my
two sons. I had suspected for some months that my eldest (13) had FM as the good
doc says "a mother knows". On the advice of my American guai buddy I
started both my sons on guai 4 months ago the same dose as me. Annie mapped them
recently and confirmed FM in both but the eldest ones left thigh hadn't cleared
so I need to tinker with his dose. I hope and pray my two sons will not
suffer to much in their reversal and would remind you all of the good docs words
"the sooner we diagnose the condition in our children the better chance
they have of living a normal life"
One thing my husband said to
me the other day is that I had regained my sense of humour and fun recently
which made me realise how much my condition had affected him and the progress I
had made. My outlook for myself and my sons is very positive. I know I
still have a long way to go but I will never give up guai until when or if
a proven alternative is found that may be easier on the mind and body.
I thank with all my heart
all the people who have helped and encouraged me when times were bad. There’s
to many to list here but you know who you are.
GOD BLESS YOU ALL
I was diagnosed with FMS by a
rheumatologist in May 1999 but it had started to flare up about a year earlier.
I can now trace FMS symptoms back to late teens about 30 years ago! Initially I
felt worse after exercise, pain in muscles, difficulty sleeping, restlessness,
temperature sensitivity and brain fog.
It was only when a group of
sufferers in Chesterfield decided to form a support group that I decided to do
some research on the internet into FMS and self help. It was during that
research that I started to find the use of Guaifenesin in the treatment of FMS.
I bought Dr St. Amand’s book which both my wife and myself read and we both
came to the same conclusion that this treatment seemed worthwhile trying. A lot
of research was needed initially to find sal free products but once I found the
UK FMS Guai discussion group and the website it was much easier and I found the
support extremely helpful. My GP was supportive and eventually I started the
treatment on the 1st March 2001. I followed the protocol and within a
week I was able to establish a cycling dose which I have kept to. The Guai
protocol has not been easy but it was the only thing that gave me hope. Having
my body mapped regularly showed that I was improving but after 5-6 months I
could tell that my muscles were getting softer and now 8 months later my FMS has
completely resolved and the cycling has stopped. I have come a long way in a
short time because I also decided to use undenatured whey protein (Immunepro)
which helps to move the clearing along at a faster rate.
Guai has given me my life back!
May 2004 update:
Five years ago I was diagnosed
with FMS. I struggled to walk up the road to the Fitness Club. In July, I intend
doing 'The White Peak Walk', which is a 26 mile walk in the heart of the Peak
District. It is the the guai protocol
that has brought about this transformation and I haven't looked back. My
symptoms before I started taking the guai, were as follows: muscle pain,
restless legs, decreasing ability to exercise, IBS/Crohn's disease, eczema,
night sweats, difficulty sleeping / un-refreshed on waking, poor temperature
regulation, noise and light intolerance, anxiety, depression, leg cramps,
brain-fog, tinnitus, fatigue, cognitive difficulties, bladder problems.
Now, I have no FMS symptoms, apart from decreasing brain-fog. The tender points have completely resolved, I can exercise normally and I sleep well for 6-7 hours each night. I was able to discontinue taking Amitriptyline one year after starting on the protocol. I am still clearing ligaments and tendons and the improvements are mainly in lessening of brainfog. I am doing the walk firstly to promote guai and secondly to raise funds for FMS Association UK and our local support group here in Chesterfield (50% to each). I have been training over the winter months and have walked 14 miles in just over 4 hours - training is going well.
loads better now, so here is my 14 month update on my progress on guaifenesin. Firstly
– no more IBS! Amazing after a lifetime of problems – it was the first thing
to go. Then
the muscle spasms went, so at last I could stand up straight again.
I can dry my hair and do all the arm raising in the aqua class too.
No more awful ‘hangovers’ every morning, which was unfair as I’m
to this vastly improved hair, skin, nails – I even have rosy cheeks these
days, for heavens sake – and an average of 7 hours sleep per night (previously
2 to 3 hours) Lots more energy and the brain fog is loads better too.
So you can see why I am so sure guai works for me.
So many changes in a short time couldn’t possibly be coincidence.
So I am very happy with my first year progress, as I feel human again. I used to think I was turning into a robot, my body so stiff and unwieldy, and I can do so much more.
13 years ago my world changed overnight. The previous year I had increased my insurance sales production by 20%, encouraged my wife (a teacher in a special school), monitored builders doing house extension work and given support to my father-in-law following a stroke. After New Year 1994 I started work at 7.30 am and was in bed by 10 am. That year my sales production dropped by 50% and everything else became a roller coaster of difficulty and challenge.
Following various tests my GP told me ‘you don’t have ME’ and an NHS psyco sent my on my way saying ‘I don’t need to see you again’. Determined to find some answers I self diagnosed using books and the internet, Until early this year I tried various treatments with little real success, although recently regular Reflexology sessions have given some relief and general boost. I had some easier times (when we moved to Wales and had the builders on site for 7 months) and some very challenging periods (particularly following emotional stress).
I am now at the end of the first six months after my intro to Guai, Fibro etc. When I initially saw a piece, from another Welsh sufferer, in our local ME group magazine in March this year I thought it would be worth investigating. After reading the book my reaction was ‘I don’t have Fibro’ (deja vu), but after checking through the UK and US websites, I started the protocol anyway and am now steady on 1200mg Mucinex daily. I have not been mapped, don’t dwell too much on cycling, etc and my diary is more a selection of random entries than a medical report. My only formal checks have been by my Reflexologist every three weeks - she reports continued steady progress. I don’t suffer from HG, have little problem avoiding sals, but continue to have very variable pain, sleep and other symptoms.
At 71, I try to make as much use of every opportunity (time, energy, etc) as I can; but ‘time waits for no man’. Commitments have always made good pacing difficult and being pig headed my attitude has always been to do it my own way and push as hard as possible; which has helped most times to keep things going. From the first week on Guai I have been able to do considerably more serious physical work (DIY, gardening, etc); my social activities have increased and we have begun to go out more. Fibrofog is still a problem – attempts to learn Welsh are still achieving little, but I can now concentrate for longer. Activities which I tried hard not to even think about last year are now being completed on a regular basis, despite a month long relapse following a heavy cold
Sharing is one of the most positive things we can do for each other. The Protocol binds us like a traditional family – we are all different, but we work, in our own ways, for the common good. The book, support, and Guai have already been a Godsend and I will always be grateful for the initial introduction
1986 having just won the title “Top Amateur of Italy” in cycling, I decided
to return home to the UK after deciding that I was not going to turn
professional in cycle racing. I was
at the peak of my fitness. Cycling
and athletics had been my life throughout my childhood and now into my early
twenties. Endurance was my forte,
winning various titles in Italy and France – racing in the Alps for 7 hours at
settled into office-based work on my return to the UK and obviously still played
sport and kept fit. In the Autumn
of 1986 I was on a business trip to the US when I picked up a slight stomach
bug. After I returned home, I never
really felt quite right but couldn’t put my finger on it.
continued until the Spring of 1987 when quite suddenly out of the blue I was
struck down with complete overwhelming, exhaustive fatigue.
I literally could not get out of bed, or climb a flight of stairs.
I was devastated and thought there must be something very seriously
wrong. I was admitted into hospital
to receive test after test to try and detect what the problem was. The results came back one after the other – nothing –
absolutely nothing could be detected was wrong with me.
I was subsequently discharged to return home with no diagnosis but still
felt that my body was a ten-ton weight and all I could do was sleep 24 hours a
day. My mind could not comprehend
what was going on. I’ve never
been sick – Up until a short time ago I was an international racing cyclist at
his peak of physical fitness. However
the more I tried to fight whatever war was going on in my body, the worse I
felt. I had to succumb to the
continuous overwhelming exhaustion and was in bed at home for 3 months.
Finally, after 3 months I
managed to get back on track and returned to work even though life was a
struggle. I gradually reintroduced
my sport regime and seemed to attain some normality again even though I still
didn’t feel quite right.
I know back in 1987 that my life was never really going to be the same.
next 14 years I was to battle against constant health problems.
I have been admitted to hospital and for tests on more occasions than I
can remember. I had the bonus of my
wife’s private health care plan which enabled me to have appointments with
some of the best doctors in Harley Street.
Again after exhaustive tests, with no conclusive results, a couple of the
doctors had mentioned that the most likely cause was a form of Chronic Fatigue
Syndrome (CFS) or Myalgic Encephalitis (ME).
A couple of doctors who took an interest in this very unknown field tried
various theories usually resulting in a cocktail of antidepressants.
won’t bore you further with the continuous medical investigations I underwent,
but by October 2001, I was at the end of my tether.
My symptoms now were so overwhelming that the muscles in my legs seemed
to have given up, I was using a wheelchair to help me through the very bad
patches. I had further tests for
MS, Parkinsons and other neurological related problems – all to no avail.
This is when my wife having tried to do tons of research on the internet
stumbled across Dr. St. Amand’s theory. We
ordered the book through Amazon and read from cover to cover.
It was incredible, just reading the first few chapters, we thought this
is it …. It’s got to be worth a go. So,
with the acknowledgement of our GP that we wanted to try this, we
self-administered the protocol. I
started in the first week of December 2001, I was “mapped”, went on to the
hypoglycaemic diet, eliminated salicylates and took the tablets.
first 4 weeks were probably the most horrendous weeks in my life.
As warned, your symptoms often become exaggerated as the body starts to
try and process the phosphates built up in your cells.
Then suddenly after the first 4 weeks, I got a glimmer of feeling, well
OK, certainly not well, but momentary relief from the exhaustion and muscle
pain. Over the next few weeks we continued and my health seemed to
be taking a turn for the better. 3 months later, I was able to do gentle
exercise and gardening. As far as
we were concerned it was a complete miracle.
I have found out that I appear to be textbook material in the sense that I am a
“low-dose, fast responder”. 7 months after starting Guai, I was exercising more regularly
and even started doing some part-time work.
now 30 months since being on guai and I have never felt better.
I can say that my health has nigh on completely returned.
My fitness levels are better than ever, I train at the gym on a daily
basis. I am still clearing deposits
on a daily basis and work long hours on a daily basis as I am now looking to
start my own business.
am now 43 years old but have never felt more fit and well than when I was in my
mid-twenties. I regret that my late
twenties and throughout my thirties my life was blighted from time to time with
ongoing health issues – my career was seriously affected, lost job after job
due to absence, hence I now plan to start my own business, but I am eternally
grateful that I discovered Guai when I did and now feel that for a very long
time, I now have my life back.
I owe everything to Guai – I’ve got my life back.
ME/FMS became a serious problem for me in early November 2001, the summer of
that year was spent getting worse due to sleep deprivation, (waking every hour
all night) and I finally collapsed mentally and physically while we were moving
to a new house, the excruciating pain that I had in my right shoulder was
getting to the same levels that it had in my left shoulder, and that had lasted
for over five years.
have always been a low energy person and over the years had many and varied
symptoms such as memory loss, fatigue, balance problems, depression, IBS, noise
and light sensitivity and a dreadful stiff neck to name a few, none of these
symptoms seemed to be connected and it wasn't until I started researching
Fibromyalgia on the Internet and read other people's stories that I realised
this is what had been wrong with me all my life. This research also led me to Guaifenesin.
the end of November I was considering suicide, the pain in my shoulder was so
bad and I just couldn't imagine living like that for the rest of my life. My
husband bought my first tub of Guaifenesin the day after I told him this.
been taking Guaifenesin now for 30 months and I have my life back, my worst
symptoms are gone and apart from a few aches and pains, I can live normally.
am so grateful to Dr Paul St Amand and his Guaifenesin Protocol.
had ME/Chronic Fatigue Syndrome and Fibromyalgia since 1996. At
my worst I was in bed 23 hours a day, and could barely walk or hold my head up
unsupported. With considerable efforts (through nutrition and other
alternative therapies) I made a sufficient recovery to return to work after
9 months, although it took me a further 6-7 months to build up my hours to a
full 4-day week. I continued to work on this basis for the
next few years, although I was aware that I was still significantly affected by
2001 I had a second major relapse, with most of my symptoms
fibromyalgia-related. At this point there wasn't much left to try,
and by the autumn I was beginning to face the prospect of never working again.
I was in a lot of pain, could only walk short distances, very slowly, had
considerable "brainfog" and very poor short term memory.
An Amazon search for books on fibromyalgia brought up Dr St Amand's book.
I got help to sort out a salicylate-free regime, got mapped, and with some
trepidation I started taking guaifenesin in September 2001.
results were amazing. Within 3 weeks my pain and walking pace began
to improve. After 6 weeks my flatmates began to notice daily
improvements in my ability to interact and be mentally coherent. I
began swimming, and by December was managing to swim 40 lengths a
day. I returned to work on a limited basis in January 2002,
building back up to a full 4-day week in just 3 months.
now work 32 hours a week in a busy, responsible job, and I love it.
I am able to have an active social life as well, though I still need
to rest for part of each weekend. My muscles have become considerably less
solid/lumpy and more springy to the touch. My exercise tolerance is
fairly good even though I don’t manage to exercise regularly. My
brain function has improved beyond all recognition, including memory,
planning and multi-tasking (which remained impaired following my first
Just an inspirational stop now
that I am 2 years along the guai path.
My main symptoms 2 years ago
were pain, chronic fatigue and brain fog. Now,
virtually no fatigue despite the fact that I work way too hard and burn the
candle. I am working and lecturing
for a college and looking at embarking on my PhD this year. I go to the gym 3 /
4 times per week.
This is a new addition and I’m coping as long as I don’t go mad with
the weights. I no longer have brain
fog. I have lots of friends and an
active social life – my whole life has turned around.
can remember being sick as far back as age four. During my childhood years
I had stomach aches, severe growing pains, recurring mouth ulcers, fatigue,
easily injured bones/muscles and excessively long healing times. By my
eighteenth birthday I was having continuous stomach problems, so much so that I
was hospitalised because 'it hurt to eat' so I stopped eating. At this
time too I had lots of dental problems which just didn't seem to want to go away
and one year of anti-biotics for throat infections which would also not clear.
birth to a daughter in 1979 seemed to offer some respite. Sadly at the
time I was so busy being a new mum that it never really registered that I was
enjoying better health. During my second pregnancy in 1981 I suffered from
unexplained viral infections, both stomach and skin. My dental problems
returned with a vengence and baby Tammy arrived an amazing eleven weeks early
upon my arrival in South Africa. For many years my health stayed at a
manageable level until I had three pregnancies, one after the other. Not
only were the pregnancies difficult, deliveries complicated, breastfeeding and
disturbed nights became the norm. During my fifth pregnancy in 1990 I was
depressed, fatigued, gained excessive weight, could barely put one foot in front
of the other. Initially I was diagnosed with hypothyroidism when the baby
was five months old. Later the same year a diagnosis of rheumatoid
arthritis was settled on. Hardly functioning, painful joints particularly
hands and feet made coping with five young daughters almost impossible. At
this stage my family were resident in Lesotho, Southern Africa. My health
became such a concern to my husband's employers that I was afforded a
consultants appointment in London during a trip home in 1991. The
consultant felt certain that my body was reeling because of allergies so I took
myself back to Africa and embarked on a strict exclusion diet. Amazingly,
cutting wheat/gluten/grains from my diet saw a dramatic improvement in my
health. Not only did I lose 30kgs in weight, my hair colour returned (I
had gone grey), my joints regained mobility and I enjoyed probably five fairly
May 1998 I re-located to England with two of my daughters, husband and three
remaining daughters joined us by July 1998. As the new school year
approached I began to go downhill. I was experiencing more violent
reactions to foodstuffs, pain returned to affect both joints and muscle tissue.
A new symptom, multiple chemical sensitivity reared it's ugly head. Within
weeks of the children starting at their new schools I found myself not only
house-bound but all too often bed-bound. In October 1998 I was diagnosed
with FMS by an allergist, Dr. Freed in Manchester. After diagnosis I
experienced one of the worst years of my life. After extensive allergy
testing I remained on allergy injections (nine a day) for the best part of a
year. Although the allergies seemed to improve I have doubts as to the
value of the injections as I was on a very strict diet. During this time
my body-wide pain, extreme fatigue, depression worsened.
was in the early months of 1999 that I became aware of the guai protocol.
Whilst finishing my course of allergy shots I read as much as I could about guai
and avidly read the US guai support list. In July 1999 I took the plunge
and started guai.
the very first dose I began to feel better. In the first week I had
several pain-free days which seemed so unnatural.
now have very clear cycles. When the phosphates are purging my health
takes a dip. I have cycled back through various conditions, some recurring
symptoms are slowly but surely improving.
being house-bound in October 1998 I have come an awful long way. Over the
past year I have managed a dozen plus five to eight miles rambles, done
decorating, constructed furniture, tutor my children, manage all the household
chores including masses of washing and ironing, run a small home business and
have once again taken an interest in life in general. I have joined a
health club, cinema club, stamp society and attend church which sees me out and
about rather than in the safety of my home. I feel as though this year I
will achieve more than I did in 2000 and that the guai protocol is the only
positive method of reclaiming ones life.
I was diagnosed with FMS/CFS after having chronic Carbon Monoxide poisoning from my central heating boiler in my kitchen. (Chronic in this instance means a low dose of carbon monoxide over a long period of time). I do believe, however, that I had a disposition for this illness because I had always had 'growing pains' as a child, migraines as a teen and adult and always achy in my joints and muscles, although it had never stopped me from living a very full life! The carbon monoxide poisoning was my trigger for this illness. I was more or less housebound, would walk 250yds into town and couldn't get home, pain in my shoulders, arms and neck was excrutiating and never let up, fatigue was dreadful, short-term memory gone, menstrual periods every 2weeks and multiple chemical sensitivities (couldn't use gloss paint, air freshners, cleaning products, deoderants, perfumes you name I couldn't go near them), couldn't get around the supermarket to do shopping. When I managed to drag myself out of bed in a morning, I would make a flask of tea and a few sandwiches and lay on the couch asleep most of the day. I had to give up my part-time job in a jewellers shop as I wasn't physically able to carry out duties and was falling asleep well before lunchtime. But I managed to keep coping with my business which I run from home as I could more or less spend what time I wanted actually working.
I was offered anti-depressants by my specialist at the hospital and wasn't keen to progress down that road, so I started guai on 1st July 2001. There have been many difficult and painful times since starting this treatment, I have cycled nearly every ache and pain you can imagine. I found it difficult to discover my cycling dose, have now been mapped by Annie and am sure that lots of lumps are disappearing. For the last 4 weeks, the pain has gone from my arms, shoulders and neck, the stiffness in my feet and legs is beginning to ease and I am very hopeful that this is the right treatment for me. I definately have more energy and have not had a day laying on the couch for at least 5 - 6 weeks. That is some achievement for me! I have recently used gloss paint and can go and see my friends without them having to remove plugin air fresheners (they had to open their doors for at least an hour before I got there, otherwise I was so ill).
It is difficult because I don't have a doctor to back me. It's easy when a doctor says 'take these tablets three times a day and you will feel better'. This treatment isn't the same, as each persons cycling dose is different and that is what I have found difficult - am I using enough?, am I cycling hard enough? - this is where mappers are the backbone of the treatment, together with the advice from this Group. Unfortunately I didn't get mapped until 3 months into guai, so I couldn't say my lumps were altering or disappearing, I feel I slipped up there, but have put that right now. I feel very lucky to have found guai so soon after my first flare, as I think this may help the time it will take for me to reverse my symptoms, although I do still believe that I have always had a genetic disposition for FM. Guaifenesin is the treatment I would recommend to anyone with FM... it is not a quick fix, but 4 months later, I am definately seeing big improvements.
I was diagnosed with Fibromyalgia in 1997 2 days before my 21st birthday. Shortly after I crashed completely and I was unable to do anything for myself. All my life I have been stiff, badly coordinated, had increadibly sore feet, fatigue, brain fog, my clothes felt uncomfortable etc. Pain had got to the stage where it felt normal. I had had rheumatic factor tests on and off since I was 7. Then in 1995 following a prolonged dose of bronchitis, I had 3 months where I was organised my assignments were well planned and in in plenty of time, my room was tidy and I was coping with a dance class. Then the pain came back it was probably no worse than it had been before but this time I knew it wasn't normal, I had had a taste of what life should be like.
My FMS progressed to the stage where I couldn't stand noise, certain lights caused me to collapse, I had incredible itching, I found reading Thomas the Tank Engine a Chore, I have never been able to sleep and have had vulvodynia since i was 7. I was unsuccessfully trying to complete my degree with the OU, I was getting the assignments in but immediately forgetting what I had learned. I was waking up in the mornings, getting out of bed and lying on the sofa I just couldn't seem to move my limbs I would continue listing symptoms, but they are too numerous.
I was playing around on the Internet one night when i came across the US Guaifenesin site, I ordered the book. Reading the book was amazing, I thought I had read everything to do with FMS, but this was the first time I felt a Doctor echoed what I had felt about my illness, and had taken time to listen to his patients. I did some reasearch and realised the Guai would work out cheaper than the various alternative remedies I was trying (I would have to come off them anyway) and physically was less harmful than anythng the Doctor had given me. When I found out it was a decongestant I was very interested, my Gran and Auntie had also had FMS. My Gran had been diagnosed with Fibrositis in the 1950s, and my Auntie had been known to ask surgeons to cut her feet off. My Gran had never crashed completely and she had had chronic bronchitis every years drinking bottles of cough medicine. In 1995 my good time had followed a dose of bronchitis, hardly a major study but it was enough to encourage me to try the guai.
I set myself target of 2 years no matter what when I started in March 2001. Like Anna I got the worsening symtoms straight off and spent the intial seven months on too high a dosage. The pain and fatigue were awful, then I had a whole month where I had no symptoms, and like Anna I noticed that other symptoms had gone. It sounds daft but for the first time in my life I managed to cut up a tomato neatly without making a hash of it, that was when i first realised just how much the Guai had done for me.
Since October 2001 I have progressed very quickly losing vitually all my symptoms and my coordination which had been diagnosed as dyspraxia has improved greatly. In March 2002 I went to USA for 3 weeks I was up at 5-7 am most mornings and I was out until after 9pm most nights, I got engaged then. I came home into what I at first thought was a bad cycle, but then mum and brother came down with the same - it must have just been a flu bug. Between June and December I made more and more progress with fewer and less severe cycles (they feel worse because I have the gap of no pain in between), I arranged a weddingI am able to work 20 hours a week and I am starting to be able to come home and do other things. During the summer I walked 3 to 6 miles reualrly with no ill effect and I was no worse than my husband after one 10 mile hike. However due to pregnancy (I had miscarriage) I have been off the Guai since December 2002. I hope to restart it in February 2003 I have arranged time off, I am starting to notice the symptoms coming back.
I am taking on more and more voluntary work and next January I hope to restart my degree with OU. I am not looking for paid work as I am hoping to have a child soon, sometimes I have to pinch myself I have only been out of the wheelchair less than 18 mths and now I am married, working, thinking about having children and doing a degree.
I have been
following the guai protocol for 2 years and 3 months. Guai has helped me hugely
in terms of energy and general wellbeing. Before guai I spent weeks at a time
bedridden; my parents had to look after me. I had been this sick for 6 years. My
worst symptoms pre-guai were severe fatigue, overall aching (a bruised-like
feeling) and stiffness, virally symptoms – sore throats, tender glands, sinus
congestion, cold intolerance, spells of dizziness, stomach cramps and repeated
I realise I
have actually had FMS/ME since childhood. My earliest symptoms were constant
infections, earaches, mouth ulcers, headaches and a need for a lot of sleep. IBS
struck at the age of 11 and I had attacks on and off for years. At the age of 16
I had what I now realise was my first bad FMS flare. A virus knocked me out and
I was in bed exhausted for 5 weeks. This was the first time I experienced full
body aches. I gradually came out of it over a period of 6 months but it was
always there, lurking, until I had the crash from which I didn’t recover in
I am now
able to live independently again and cook, clean, do voluntary work on a daily
basis (up to 6 hours on the computer, phone etc). I am organising our group’s
conference, something I couldn’t have dreamt of 2 years ago.
spend any time in bed during the day now. I don't often need to rest during the
day, just occasionally for a short while if I am cycling hard and sometimes in
the evening if I've been busy. Resting now is watching tv, not having to lie
down comatose. I no longer feel "poisoned". All of my symptoms have
improved. My lifelong gut problems
are much better. I haven't had an infection for 2 and a half years, wheareas
before guai I got one every 2 weeks.
I am also
hypoglycaemic and although I can now tolerate more carbohydrates, cheating too
much will push me into an acute attack of palpitations, insomnia, brain fog, and
many other nasty symptoms.
I would say
I am 75% recovered overall and continue to improve. I hope to be pretty much
normal within another year. I still
have quite bad upper back lumps but the rest of my map has just a few small
lumps. I still “cycle” daily with sometimes quite intense pain and the odd
“virally”, groggy day but my energy and wellbeing is so much improved. I
have a life now, thanks to guai! I
think I continue to cycle daily because I am a low-doser and will probably
continue to have some level of cycling on a daily basis, until I am all cleared
I feel FMS
genes are quite dominant in my family, although I have only realised this
recently. In talking with my mum, we realised that her mother was diagnosed with
mild fibrositis in the 60’s but her worst problem was depression which
wasn’t tied in at the time. My mum has been mapped and doesn’t have any
lumps but does have osteoarthritis. My sister is also on guaifenesin and the HG
diet, as we picked up early signs of FMS in her (severe IBS on and off for years
and back pain) and she is seeing good improvement already after just 2 months.
Would you like to submit a testimonial about your experiences on guaifenesin? Email your testimonial to our internet coordinator: jogallag @ hotmail . com.
|Website created by Jo Gallagher on behalf of the UK-FMS-GUAI discussion group. The website is checked periodically to ensure that it is working properly. If you do encounter any difficulties, including broken links, then please email me. Jogallag @ hotmail . com Copyright © 2007