Hi,  I have reserved a copy of the book by Dr. Paul St. Amand at my local Borders shop, to collect this afternoon (Monday 28th April).  However I am slightly worried that it will be a waste of money & taking Guaifenesin has very different reviews.  I found a forum while searching for Guaifenesin Protocol - and several people could say nothing good about it, in fact they said it was dangerous and gave them kidney pain, leaving them worse off than before the treatment!  Im really at wits end with the FMS symptoms - suffered fro about 5 years, been to endless doctors, Endocrin., Rheumat., acupunture, chiro, osteo, you name it!  I just want to start taking something that's not dangerous and will make me feel rested after sleep, without these shocking flare-ups of pain in neck & shoulder blades.   Im taking 5-HTP recommended by Dr. Murphree (USA Doctor in FMS & CFS) - worth reading his site:- www.treatingandbeating.com.  Sleep is improved but the pain still comes back with a vengeance!  Found ITV form about Dr. Chris yesterday and sorry I missed the programmed.  Will be watching on 12 May definitely!

Is there a support site for people taking or thinking of taking Guaifensin?  what is it?  Where do I buy it?  On the Net? or over-the-counter?

There is so much written on FMS and so much conflicting advice - I really do not know whether I should buy this book, but if the Guaifenesin approach has helped FMS sufferers, I cant afford not to give it a go!?  It's a dilema so I need to be convinced Im afraid.  I know you will prob. feel worse before feeling better, but I dont want to damage my kidneys aswell as all the other health problems!

Please email back a.s.a.p.

 Thanks Jayne (Wirral)
 

Hi Jaki,

I live in Eastham Wirral - are you close by?  What do you take to cope with the FMS?  im taking 5-HTP which helps the fatigue, but the last 4 days have been hell with a flare up of pain in neck, shoulder & knees.  Have had about 6 sessions of Acupuncture which helped temporarily, but this can be expensive.  Reading about Guaifenesin which is in cough medecine expectorants - but theres so much conflicting evidence - dont know what to believe anymore.  Why am I really well when on holiday in a warm climate?  The weather must be a factor and stress of life with two teenage boys another contributary factor - but other mothers seem to cope without having debilitating pain?

 Do you go to a Fibromyalgia Support group in the area?  I dont really fancy that - it sounds very American "Hi my name is Jayne and I've been in pain now for blah bah blah !" like an AA meeting!  However, reading all the posts on this ITV site, does make you feel slightly better knowing you are not alone.

I would be very interested in hearing about your experiences with FMS and whom you have seen in the medical profession in our area.  Who do you see at Clatterbridge?  I saw several Endocrinologists there who said that  I had raised levels in my immune system, but not enough to treat - great!  I just gave up.  I also stopped taking Amytryptiline from my GP cos it just made me permanently hung over!  Since then I've just taken various herbal meds. to help with joint inflammation and tried to keep active - easier said than done!  I love tennis (used to play County level in my teens), but it's having the energy to get to the club which is the hardest.  Some days (like today) - I stayed home, moped about and looked at all the chores around me and did nothing but hibernate!  The guilt is terrible - but what else can you do when the flare-up occurs? 

Enough moaning - you've heard it all before! 

 
Thanks Jayne
 

Hi Jayne

 I see Dr Williams at the pain clinic at Caltterbridge, Go to your gp and ask for a referal, hes Pete Williams and hes great, I am taking Tramado (sr) 150 mgs and Celebrex as thats kinder to your stomach, and with having IBS its good, I Take amytryptiline aswell and thinking of upping my dose as I am not sleeping great.

 They take the edge off the pain but dont really take it away.  The group meeting is nothing like AA its very informal, you go in sign your name and write your name on a sticker you ware on ur top, just so we all know eachothers names, because most of us have short term memory loss, we just sit and chat have a coffe or tea and listen to who ever is there to talk to us about what treatment they provide, It really is a good place to be and have a general chat about what ever you like, if you come to a meeting and see if you llike it you may surprise yourself.

 If you visited my website you will have read my story and know I waited 22 years to get a diagnosis of fibro,and that I find talking to other people who know how you feel really helps, which is why I made the site so we can help eachother especially at bad times and flare ups, and go to the meetings.

I am lucky in the sense I have a great husband who takes care of the housework and gets the kids ready for school, then he gets me up at the same time each day, I know not mant have someone like him and can understand the frustraition of not being able to do much of anything, I want so much to be able to tidy up or hoover but I cant.  I play darts every wed, but have to stand with a crutch and I cant mark a game becuse I cant stand that long without moving but you know how that is.

I hope this has helped and I hope you check my site and email me so we can talk more and help eachother.

I am waiting for the book to arrive that has been mentioned in other posts as it seems it helps those who have read it I figure its worth a try.

Jaki

I ordered a Thera Cane through Amazon and I cannot stop recommending it to people with fibromyalgia!!!

I live on my own and my late mother used to massage my trigger points and the a Thera Cane is the only thing to replace her "magic thumbs" I have found.

After a few short minutes of use, I could put my hands behind my back for the first time in ages!!!!! 

You can treat your own really hard to reach trigger points with no twisting, contorting or pressure, all for less than £30.

I have no link to the company I'm just truly grateful I found it.

Shirley.
 

Hi Jayne and Jaki, how great to be posting with people from the Wirral, where I'm originally from! I used to work in Nat West bank in Eastham! I'm sorry that it's taken 22 years to get a diagnosis. I had the eighteen trigger point test done by a Fibro specialist although my doctor would have known to do it. I now live in West Wales and moved there 12 years ago, but have just been up to see my mother recently in West Kirby, who I suspect is developing more pronounced symptoms of Fibro since her stroke, as this appears to be an inherited genetic 'retention' disease, similar in principle to gout (according to the eminent American endocrinologist Dr St Amand) and triggered by physical trauma.  Viruses, illness, certain injections, prolonged stress are also triggers .......... It's all explained in his book (revised version) "What your doctor may not tell you about Fibromyalgia". What were your triggers? I'm so pleased that you've both ordered the book.   Our UK site (you need to join for help and support on Guai) is at the back of the book on page 389. You can buy the dvd from Fiona on there, which covers the body mapping, and she will let you know how to get hold of the tablets. I get them on the NHS through my helpful doctor.

My 'trigger' was Glandular Fever (in the eighties) from which I recovered 90% in time, but I had an allergic reaction to anti- biotics four years ago  (requiring hospitalisation) and this triggered my CFS symptoms again, quickly worsening to the point of being completely immobile with fatigue and with a new symptom of severe fibro pain (tingling,stinging/burning all over) to add to the growing other list of IBS, anxiety, poor sleep,thyroid problems etc etc. However, I started on Guai eighteen months ago and now I'm walking again (albeit just short ones around the house and garden) and I don't have the stinging pain anymore, only the occasional soreness when not pacing properly! I'm so much better! I just use my scooter for shopping trips, instead of always indoors too. The other symptoms have gone because of a specific diet cutting out carbs and sugar (mentioned in Dr St Amand's book) and which has addressed what turned out to be hypogleacemia, a common accompaniment to Fibro. It's early days on guai yet, but I'm very hopeful for a full recovery in time! My body maps (which my chiropractor does) confirm the tell tale lumps and bumps of CFS/ Fibro and so they are rapidly diminishing on Guaifenesin, endorsing my overall improvement.

There's absolutely no need to worry about taking guaifenesin tablets! They're sold over the counter in the States and it is a main ingredient of cough medicine for loosening mucus. It's unlicensed in the UK for use with Fibro because this American treatment is unknown here. All our doctors will push on us are toxic drugs with side effects! You've unfortunately read erroneous information about Guai being dangerous. The tablets are non toxic with no known side effects and originate from a tree bark extract in the 1530's and used for treating rheumatism and even gout. There has never been a link to kidney pain/stones being caused by the taking of normal quantities of guaifenesin. There was one tiny study done once, which showed patients abusing the combination of two gout drugs (one of which was guai, the other pseudoephedrine) by taking huge amounts of them both. Guai is absolutely safe and Dr St Amand has observed 10,000 patients with CFS/.Fibro, including his family and himself who have recovered on Guaifenesin tablets. He has 50 years experience treating CFS/Fibro patients. It wouldn't be in cough syrup for children if unsafe would it?

 Once Fibro has been verified from Hypoglaecemia (overlapping symptoms) by the eighteen trigger point test or ideally the mapping of our bodies by an experienced mapper (explained in the above book), the tablets must be taken for life. This will correct the ongoing genetic 'retention' fault (associated with kidney excretion) that is affecting the production of energy in cells, causing our fatigue, bodywide malfunction and therefore many symptoms. I hope I've answered you ok. Get reading as soon as possible! Best wishes, Nin

Hi Nin I have my book but think I bought the wrong one there seems to have been a book before the one I ordered. My one is WHAT YOUR DR MAY NOT TELL YOU ABOUT FIBROMYALGIA FATIGUE It keeps referring to the book before. I feel it is a bit daunting trying to look at all the products to see if there are any salicylates in them. I havent seen any mention about the web site you mention would you try and mention it on here so I could try it. My family and friends think I have gone web crazy since fms was mentioned on This Morning. Truth be known I think they may be right I am constantly on the web looking for info and and probably going info mad with so many pros and cons you dont know what to try or where to start. I look forward to hearing from you. Donna

Hi Linda Please keep me posted on how you go with the powder. I now have my book and feel more confused. I have a doc appointment on thursday so am going to talk to her and see what she says. We have plenty of time to chat as she gives me acupuncture. I sometimes wish I could stay there all day with needles stuck in me. Its the only time I feel I have some respite from the pain. I am glad your hubby is trying it along with you my hubby sometimes gets fed up with me going on about fms and all the research into it since the show and the will I wont I try some of the stuff on the web. I feel sometimes I dont want to try things as I will be more depressed if it doesnt work after getting my hopes up. He tries to be understanding and give me the cuddles I want but then have to tell him to leave me alone as the pressure of his arm is to heavy and causing pain. This fms is not easy as we all know. Good luck and let me know how you get on. Donna

Hi Jayne,

Yes... I felt a little confused when I saw your name on the forum and thought I had written a message and had completely forgotten I wrote it!!! Which does happen with the fibro fog!! I cant believe your name is Jayne with a Y and that you live nearby !!! That rhymes!!! Sorry! Also that you were diagnosed four years ago with your Fibromyalgia which seems really uncanny. I started with severe abdominal pains, headaches, neck pains etc etc was rushed into hospital with a very fast pulse rate because of the high levels of pain and was put on Morphine and a drip!! They then said I had Diverticulitis and I was discharged still in incredible pain. Many many more tests followed MRI scan, ultrasound, biopsies etc. etc. I really thought "I m Dying " as the months passed by and I got no better and was off sick from my very hectic job. I was so relieved when I was referred via a GI surgeon to Dr Williams at the Pain mangement clinic at Clatterbridge. He diagnosed my fibromyalgia. I didnt know whether to cry or hug him (which would have hurt) !!! I then attended a six week course of cognitive therapy with physiotherapy and group talks. This helped me. I met other people like me and was not on my own. I still speak regularly to a girl in Heswall who was also there, shes lovely and we can laugh about our symptoms cause we understand each other!! I am on Amitryptylline now and pain relief , its the only way I have found helps me cope. I have tried so many other therapies to no avail! Some days are so bad I feel as if my plug has been pulled and I have been run over by a bus!! I rest then but find it difficult to pace myself and try and do too much when I feel ok and then the fibro hits me like a monster!! Its all about acceptance and managing the condition isnt it? Most people who I have met with it are perfectionists, hard working and high achievers and dont want it to beat them. Thats me but some times its hard!!

Hope to hear back from you soon!

Kind Regards,

Jayne

 

Hi,

I was amazed to hear your story - especially that you used to work at West Eastham where I have been banking for 20 years!  I may have met you then?  When were you there? and do you mind me asking how old you are? Im 45. 

I managed to find the energy to go to Borders yesterday and bought the book by Paul Amand.  I've started to read it and find it fascinating.  I have seen an Acupuuncturist who immediately told me that I had a problem with damp/pleghm in my meridians - this in some way i feel is linked to Dr. Amand's theory of ridding mucous in the body - dont you think?  I've ordered Mucinex from Ebay (bi-layer, long acting 600mg tabs) - dont know if I've done the right thing, but didnt know where to get Gaui from in the UK.  Scoured Boots yesterday looking at cough medecines, but they were not in pure form.  Then I found a bog standard Expectorant made by Sainsburys - I took 3 lots of 10ml of the medecine yesterday, spaced through the day as  if I were treating a chesty cough, and I did sleep better last night!  Maybe that's a coincidence, but cant wait to get started on the Mucinex - have you ever had these tablets?  What can I get in the UK without costing a fortune.  My GP would only put me on Amtriptyline which I hated!  I am loathe to ask him for anything else.

The only down side of the Gau protocol is the damn Salicylate (how do you pronounce that?).  My entire bathroom cabinet probably has these in all the products I use.  I am laothe to give up my skincare from Liz Earle (QVC) as all her products are fantastic (they are SAL free), but are based on natural plant ingredients!  What about toothpaste - I cant do without fresh breath - it's just not acceptable!  I read a forum somewhere, and a girl is on the Gaui therapy and has ignored the SAL avoidance, and is still getting pain reduction after years of suffering wiht FMS - perhaps everyone's tolerance is difference.

My pain is nothing campared to you - I still play tennis and socialise and look after my two teenage boys.  It's just when I relapse and have "bad days" of pain, fatigue, depression etc. it really changes my life, and then it eventually lifts until the next flare-up.  I cant complain compared to what you and others have been through, but it's still upsetting my life, and I will try anythingto reverse it.  I obviously dont want to get any worse, and it's depressing when you read there is no cure for FMS.

I wonder if my GP is right in his diagnosis.  4 years ago he told me it was FM, but I do not have 18 tender points.  I would say that the pain starts in the (occiput?) where the skull joins the neck (very painful nodules) all down left side of neck, then into the top of the shoulder - which if pinched is agony!  Then radiates down the centre line of the shouder blade into the left hip and into the left buttock.  On really bad days, both knees feel like Im 92, and I cant kneel down to a low cupboard, and my wrists ache sometimes.  A big problem is the swelling in my fingers.  I have been married 20 years and have had to get my wedding ring and all other rings made bigger (TWICE). 

Sorry to moan on, but I wonder if this is still classed as FMS or maybe it's Myofascial Pain Syndrome - which  is usually down one side of body?  Do you know the differences?  If it is MFS - will the Gai still work for me?  It is prob. mentioned in the book, but I've only just read a few pages!

Well. I should be doing the chores now, so I will sign off and hope we stay in contact.  I will let you know how I get on with the Mucinex when it arrives! 

Thanks for any help,

Jayne

 

Hi Donna, I'm sorry you've bought the wrong book, but the one with 'fatigue' in the title will be a very useful one to have as well, especially if like me you turn out to be hypoglaecemic too! There are loads of recipes for being HG and tips on exercising with Fibro as well as other important issues. I'm not allowed to put web addresses on here as they keep being deleted! It's such a shame that I can't mail you privately either about how to contact us on our support group.

Hi Jayne and Jayne

I was refered to Dr Williams by my ortho surgen, he was so great, listened to my every word and looked at my whole medical file and history, he then made the FMS diagnosis, I too didnt know wheather to hug him or cry, I sat there stunned to finally have a name for what I was going through after 22 years of thinking noone cared or just couldnt be bothered to find out why I was always in so much pain.

I take amytryptaline and tramadol for pain and celebrex for anti-inflamatory, which is kinder to the stomach and with having IBS thats a big help.

My book has not come yet im not sure when its going to but I am looking forward to reading it.

 

 I must say that we don't miss the 'manicured' look of Cheshire and all the traffic and crowds of Chester and the Wirral, which always comes a shock when we come back up to visit my mother and family!  I feel a real country bumpkin now and prefer the lanes here with grass growing in the middle and all the Spring flowers and foxgloves growing in the hedges! I do miss the treat of shopping in Chester though!

Well done for going to buy Dr St Amand's book "What your doctor may not tell you about Fibromyalgia" as it's the definitive book that everyone should read who has this damned illness. However, you made me laugh about taking the cough medicine! That was a waste of time ha ha! You were right to order the tablets, I'm on those from the NHS, although I'm not sure that e-bay is the right place to buy such things, as how do we know that they're not counterfeit? I'm sorry to say that if you're determined to get better (as I was) there's absolutley no point in you taking the Mucinex until you have read the book and replaced your 'mint' toothpaste and all your make up and toiletries to ones without plant based oils in them, otherwise you will stop the guai from working! 

Don't worry about not having reached the maximum eighteen trigger point test, as you can still have FMS with far fewer than that. If you feel your body and limbs (as if smoothing a sheet) you should be able to feel differing sizes of the tell tale lumps and bumps of Fibro (like the size of the top of an egg or an orange or alot bigger). MFPS should still respond to guai. People who don't have FMS won't recover on it, such as people with 'just' hypoglaecemia for instance, whose symptoms can be easily be mistaken for Fibro. As you say, it's depressing that's there's no cure, but because our illness is genetic and a retention problem, at least the Mucinex addresses the physiological cause and helps us to recover and stay well for as long as we're on it, which of course means for life! Even if people are unlucky enough not to have it prescribed on the NHS (as I do) it's still only about £100 a year to have your life transformed from pain and fatigue! The cost of the tablets and learning to use different approved make up and toiletries (which becomes easy) is a very small price to pay for regaining one's health don't you agree? All I can say is, that when I read the book and realised how logical and apt it all was, I couldn't wait to go on the tablets and have never looked back!  The uk support group is essential to join though to be successful. I'm walking again and feel so much better for the lack of stinging burning pain. My energy is gradually increasing and brainfog, memory and sleep are better too!  Good luck and happy reading!             Best wishes, Nin

Hi Jaynethe pain! I've just had the first part of my post edited, so just wanted to say 'again'  that I'm older than you by nearly ten years and worked primarily at Bromborough when I was 21, so we sadly won't have met. I'm originally from bebington before moving to south Cheshire (when I married) and now have lived in West Wales for 12 years. Don't be hard on yourself when feeling ill. Just learn how to pace things,rest more and don't overdo things in one hit! No wonder you have flare ups if you're still playing tennis!  Take it easy. Bye for now!      Best wishes,  Nin

Hi fibrofriend and Jayne!!

Yes Dr WIlliams is very good I agree. He really listens aswell doesnt he? I think you are just so happy to put a name to what you have been suffering, even though your not happy if you know what I mea!

I find Amitryptylline helps me too. However, I have had times when I have taken myself off it in rebellion, which you shouldnt do without talking to your doctor, and found myself a million times worse. I just take ***** at night, early enough though so that you dont experience that hungover feeling the next morning. It works as a muscle relaxant allowing the body to go into a very relaxed state enabling sleep. Then you dont go into the cycle of "no sleep, pain, anxiety, depression... no sleep pain, anxiety depression and so on"!

 I too have a social life still and a busy family life with two lovely daughters and a very good husband everyone tries to understand how I feel to the best of their ability, I just go quiet and try not to moan!!

Each day I try to pretend I havent got it and start each day with a long hot/cold shower this helps to ease the stiffness which is so prevalent in the mornings. I always try to get ready each day put smart clothes on and makeup and a smile!!! Sometimes its just pretend though!!

Hope you are having a good day

Best wishes Jayne

I'm so relieved for you that after 22 years you have at last had your diagnosis. There's nothing worse than having this 'invisible' illness, looking well most of the time (but feeling awful) and having some friends and family thinking that you're a hypochondriac and are ok really! Grrrrrrrrh!  I don't know how you cope with young children, it must be extremely hard going, but like you I'm lucky to have a very supportive husband who does everything and he keeps stress away which is so detrimental to us isn't it? Now that I'm feeling a little better, I can start to share the load by doing small things again in the house. It won't be long before you too feel well enough to start helping again as well...............just start reading Dr St Amand's book as soon as it comes and be sure to get all the help you need to succeed from the uk support site mentioned on page 389. We're all there to help. It's not a case of simply 'popping a pill' and hoping for the best, there's more to it than that, but then they say nothing easy is worthwhile..........  We'll look forward to seeing you on the forum and to help you succeed! Hope is the elixir of life for us Fibromyalgics and we've got it now with the guaifenesin treatment.  Hope the book arrives soon!        Best wishes, Nin