Doctor doesn't believe in Fibromyalgia!

I had to move doctors 2 yrs ago due to moving house. One of them said a while ago that Fibro is not organic and today one told me that none of the doctors in their practice will diagnose Fibro because they believe Fibro is a symptom of depression. He refused to try me on Topirimate but was more than happy to give me Sertraline for depression. I am not sure what my rights are here in the UK for changing practices again!

44 Replies

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  • Thank you for the advice, that helps. Nice to meet you too.

  • It scares me that there is still such ignorance despite there now being masses of medical evidence to support the existence of fibro. I don't have depression, I never have, I have a lovely life and I'm grateful for every moment of it but every morning when I wake I feel like I've gone ten rounds with Mike Tyson, as I type this my shoulders are burning so much they feel they won't support the weight of my arms - what has that to do with depression? Complete nonsense - I read somewhere that Doctors under 40 understand the condition more as they are now taught about it at med school, maybe you should try to find a younger Dr. x

  • LOL. Sadly, some of them at this practise are younger. Perhaps they are influenced by the older ones. I too am not depressed. You obviously get down and frustrated but I am definately not clinically depressed. However, I will try the antidepressants to see if they help. Ja I'm with you there on the arm thing...you just wish you could screw them off and put them away for a while!

  • Hi christine I find it discusting that a Dr does not believe Fibro is not real. I have MRI's that have proven true nerve issues on the spinal cord cervical. Even my Dr. Is looking into things. I had never ever heard of this i just typed in symptoms i had been suffering after having a lot of nerve problems (damage) which has widely spread, therefore causing the suffering we have. What causes fibromyalgia?

    The cause of fibromyalgia is not known. Those affected experience pain in response to stimuli that are normally not perceived as painful. Researchers have found elevated levels of a nerve chemical signal, called substance P, and nerve growth factor in the spinal fluid of fibromyalgia patients. Levels of the brain chemical serotonin are also relatively low in patients with fibromyalgia. Studies of pain in fibromyalgia have suggested that the central nervous system (brain) may be somehow supersensitive. Scientists note that there seems to be a diffuse disturbance of pain perception in patients with fibromyalgia

    i been doing lots of homework because i cannot understand going from someone very energetic, doing splits gym, flipping over backwards and i am self employed and so extrememly active, to how i am now and Doctors know this.

  • that post on her Dr. has made me mad lol sorry xxx you are very good on here in helping out and it needed as those of us new have no experience only what we research or Doctors diagnose us with so if it did not exist how do we get a diagnosis ? hmmm hehehe xx

  • Thanks everyone for the advice. I'll have a look at the NHS Choices tomorrow. Sleep deep...x

  • Frotbanana,ive had Fibromyalgia for 10yrs and yet to see a specialist one Gp said "why its only muscular pionting to a book on his shelf" regards the medication Topiramate its not an anti dep ,ive been on this for around 15yrs for my Epilepsy nothing to do with Fibro,my next appiontment with neurologist i will bring this up and ask ,trouble these days many gp dont know the fullnes of medication.

  • Yes I know the Topiramate isn't an anti dep, I wanted to try it for Fibro because it has helped some people tremendously and others not. Worth a try but the GP said I was depressed and that Fibro is a symptom of depression. I am not depressed and I know Fibro is a defined illness now. I am going to try the anti dep though because if it helps of course I'll take it!! By the way some epilepsy meds are being used extensively for Fibro with some positive results. Sorry about yr GP - sounds like mine!!

  • try research = Dr james White "Breaking thru Fibro fog

    also im going to look through my paper work my Rheomotologist gave me 2002 its basically like a shopping list of the symptoms of the effects of Fibromyalgia,

  • Thanks I will do that. Much appreciated.

  • Yes, I was reading this on Fibro UK. Very interesting. It made sense too, that we have troubled stage 4 sleep and I think if they find an effective way of getting the brain to rest properly it would go a long way to helping us with our symptoms.

  • Lynn -FA im well aware anti depresants are offered for pain relief even though your not Depressed,as thats all my Rheomatologist offers all the time,with the combination of conditions but when i check the side effects i say no thankyou,also not all medication work together as my neurologist showed me and i experienced with many you have mentioned.

  • Yes you don't know which is worse the Fibro or the side affects! It is often a catch 22. I have used Amitriptyline alone for about 2 years now and only when I can't take it anymore. I do use a paracetomol type painkiller when I get my headaches and my body gets too sore in the daytime. Having to work though as a carer is very tough so I needed something extra to enable me to stay employed.

  • im well aware of this there is no medication going to work for the same 2 people as they also have diffrent medical conditions ,wich is why i wont over load my body with medication as ive seen the damaging effect it has on others with previous work experious prior to my condition taking over,main problem being Doctors dont take the the time to listen to the patient and find out about the medication they prescribe.

  • Lynn-fa ive replied to your response,ive NOT had a bad experience with my medication and never said so,my medication has been stable wich is why i wont let them interfere in any respect,i had a Specialist spend several years try several medications on several levels to get all right for me,wich is why add now as may dont work with them.

  • Yes, getting at least some stage 4 sleep goes some way to helping manage the condition so it's a question of finding what works for you. Researchers believe that our brains over or under (can't remember which) produce a certain chemical in the brain which stops proper stage 4 sleep and without this the body' restorative function can not work. Google fibro friendly doctors in your area.

  • Thank you.

  • I have a lovely GP. In 2007 I had Postnatal depression which was closely followed by a nervous breakdown, caused by going back to work (probably too soon) and I was being bullied by my line manager. Anyway I've suffered from depression in the past and when my problems started with my body doing all sorts of things, my gp said it could be fibromyalgia

    meassociation.org.uk/?page_...

    I instantly went home and found that it goes sort of hand in hand with ME. Well 2 years later I've been told I have Fibro, ME and a nerve condition altihough not neurological. I've been made up with my GP she's been so wonderful and has helped me with getting my disability info. Anyway I saw a specialist nurse last week about my ME/Fibro and I'm getting referred to pain management and when I was talking about the info fro the ME association, I'd practically ticked almost everything on the list, it was like they were talking about me, anyway she said that there are different types of depression. I was like how many are there?? lol. I've got such a lovely family, great husband who has become my carer and I'd be seriously lost without them. I'm currently on amytriptaline for sleeping, dihydrocodeine and pregablin (sorry if spelt wrong). I truly hope that you find a really good GP who will support you, it makes everything better then, especially when they really listen to you anf you tell them everything that is wrong. I didn't like the specialist I was sent to, cos I didn't think he was listening to me at all, but the specialist nurse did. She was so lovely. I keep thinking that no one believes me, but they do and they all want the best for me. I'm happy though because I've know for a while that it can take years sometimes to get better and the specialist nurse actually said ti me last week. She said it can take years for you to get better and I felt so joyous that a professional actually had the guts to tell me the truth.

    Truthfully I'd love to just be me again, but I'm happy that I'm here. My mantra is: "It Could be Worse" I'm thankful to God everyday that I'm here and although I'm in pain and struggling, it could be worse.

    I've ranted a little bit there lol. I do truly hope that you get the help that you deserve and are entitled to. If the link I've posted helps then that's something, but I do know something. I know that you'll always have help and support here. xxxx

  • Thank you for that. So glad you have the support you need. It makes a huge difference hey? All the best with your journey too. xx

  • Thank you, let me know how you get on hun xx

  • Our mantras are the same!! You go girl..xx

  • Yay!! Got to have good mantra's and try to stay positive too, thanks westgate xxx

  • hi there!

    i take anti depressants - initially i was suffering with severe depressive illnesses. however i dont need them for that now. i do continue to take them because they keep me calm. if im calm then my body is calm and my muscles are less tense. just another viewpoint!

    Any re your lovely lovely GP! If you get onto FM uk, as i understand it they have information to hand out to doctors. Couldnt hurt you getting some to give to your GPs!

    Take care and enjoy this lovely day

    xx

  • Thank you, I'm going to take your advice. You have a great week. xx

  • Frotbanana,as promised ive found the paper work given by Rheumatologist when fibromyalgia was diagnosed ,hopefully benificial to others ,just to know why youve got these feelings within the body,go on search for =

    Devin's Diagnostic By Devin J.Starlanyl

    its like a complete shopping list ive found over the years ticking off another as time goes on,good luck ,lavender

  • Hey Lavender, thank you very much. I have had a quick peek - excellent! x

  • no problem glad to help x

  • Proof for your doctor, if you need it:

    mysquirrelbait.com/brain-sc...

    City of Hope Genetic Study: [Edited by Admin]

    fibromyalgiatreatment.com/F...

    [Links to other forum removed by Admin]

    See guidelines here: fibroaction.healthunlocked....

  • If anyone is interested in the City of Hope study, we published this article discussing it back in 2008:

    fibroaction.org/Articles/Ci...

  • I have changed doctors now, although the one I have hasn't admitted to Fibro being an illness but he acknowledges that a specialist diagnosed me so he goes along with that. Thank you for the information, I will look it up today.

  • [Copyrighted material removed by Admin]

  • Gosh thanks for all of this information - great stuff. I can't afford going to any place for treatment and some time ago looked at Guaifenesin but struggled to think how I could afford it. Anyhow, I've taken the plunge and purchased this now and will see how it works when it eventually arrives. Thank you.

  • Hello FibroInCanada - I am not sure the information you posted on this thread has been medically proven over here in the UK. The information contained in your post is based on a Canadian theory and has not been discussed or proven over here. On this basis we don't want to appear to give our members hope where we have no foundation. We hope you understand.

    It is for this reason that I am going to ask our higher FibroAction Admin Lindsey and Simon whether this is all acceptable. In the mean time thank you for posting and we will get back to you. Please refrain from posting anything else about the Guaifenesin Protocol until they have looked into the matter.

    Many thanks.

    Liberty

    Admin

  • Hello Liberty,

    Of course I understand, and thank you for your kind message. Yes, I am well aware of the negative press this "theory" has received over the past 2 decades, especially aster the flawed study done by Dr. Bennett in the 90's. All I know are the facts. I do NOT know that the element we cannot eliminate is in fact phosphate. This has not been proven. Dr. St. Amand has described this as a theory and nothing more. There are so many studies on Fibromyalgia that cannot prove the cause. Symptoms can be proven (lack of blood flow to the brain, vitamin deficiency), but the cause remains to be unknown.

    Dr. St. Amand admits this treatment fell into his lap, and we know it works. Tens of thousands of Fibromyalgics have reversed their FMS on this protocol. WHY it works remains a mystery. The phosphate theory has not been proven. What HAS been proven is that Fibromyalgics have abnormal cytokines and Guaifenesin has direct effects on these cytokines. This may be the most complicated illness of our time. What we do know is PURE Guaifenesin has no known side effects (other than slight nausea in rare cases) since its FDA approval in 1952. It is safe for children and has no drug interactions. There aren't many FM drugs out there that can say that. My 4 year-old is on the same dosage as I am, and the change in her after 2 weeks is outstanding. I am confident my daughter and I will never suffer from Fibromyalgia ever again!

    I have met hundreds of people on this protocol who can describe their symptoms literally clearing in reverse order in which they arrived. May have been symptom free for decades. I know that people have been clearing their FMS on Dr. ST. Amand's protocol for over 50 years, and the protocol is now more effective than ever now that Guaifenesin is being made long-acting to last 12 hours. People are clearing much faster.

    If you are interested in the study:

    fibromyalgiatreatment.com/C...

    and any other information to clear up any doubts you have, I can answer for you. There is a lot of mis-information and out-dated information on the internet. I have a lot of reference material. Please, for the sake of your fellow sufferers, please don't take this information away from them. There is a Guai Support Group for Fibromyalgics in the uk. [B][link removed by admin][/B]

    Dr. St. Amand is an Endocrinologist and Associate Professor of Medicine at UCLA Harbor. He has Fibromyalgia, as do his 3 children and one grandchild. At 85 he continues to treat patients and raise money for research. He took part in the study which located the genetic defect.

    You can read the success stories about the 2006 edition of his book. Reviews at [B][link removed by admin][/B]

    The 2012 edition has the red stripe on the top and contains 25% updated material. This book truly explains the reality of his discovery.

    If Dr. St. Amand had only publicized the protocol and never mentioned his "theory" he would never have received so much criticism. The facts remain that the protocol does work, and we now can offer HOPE of having our lives again.

    Kind Regards,

    Sabrina Stephens

  • There are no medical studies that demonstrate Guai works as a treatment for Fibro, despite it having been trialled fully once (by Dr St Amand and Dr Robert Benett) and linked into the City of Hope study.

    If Dr St Armand could produce proper evidence that the protocol works, the medical community would have more respect for him. That he cannot calls the whole thing into question and suggests that the placebo effects and the natural stabilisation of a person's symptoms are responsible for the anedotially reported improvements. This isn't a new theory of Dr St Amand's or a new treatment. He has had decades to get the evidence if he wanted to (and it was possible).

    If you have published peer reviewed studies that show Guai works as a treatment for Fibro, I - and many other people - would be interested in seeing them. That there are none on the medical database PubMed suggests that there are none unless they are brand new research.

    Please be aware that all members of this community are required to follow the Guidelines:

    fibroaction.healthunlocked....

  • Dear Lindsey,

    I understand your skepticism. I think you will understand that the reason it is not clinically proven is two-fold. Firstly, we don't know what causes Fibromyalgia. So how do we prove that a medication has cleared it? No medication or pharmaceutical company with their billions of dollars can prove it treats the cause of Fibromyalgia. Many things help Fibromyalgia, and Guaifenesin is NOT a cure. Other than asking the patients how they feel, how can anyone prove that their drug works to help Fibromyalgics? There are people recommending all types of herbs and supplements, D-ribose, vitamin D (which is a steroid, by the way), Cymbalta, yet none of them can prove that they reverse Fibromyalgia and treat the cause. Why the Guaifenesin Protocol gets so much resistance is beyond me. It is the safest Fibromyalgia drug today. We who are getting our lives back are trying to help others, yet so many of us give up due to the flack. Why do people listen to the nay-sayers? Why not listen to those who are becoming well??

    This is not a placebo effect. Placebo effects generally last for up to 4 months. These people on Guaifenesin have been symptom-free for years. My 4-year-old daughter was a completely different child after 2 weeks on Guai. She did not know why she was taking pills, and I was not the only one to see a change in her. So many others are commenting on how she is happy all of the time now and never whines, and has so much energy. She's been on Guai for 6 months now, and last week completed a 15 km bike hike over a 2 hour period. So did I, by the way. That would never have been remotely possible before Guai.

    The second reason is that Guaifenesin has been FDA approved since 1952. Big Pharma has no monopoly on this drug. It can be made and sold generically. There is no money for a double-blind study. The last study in the 90's by Dr. Bennett tarnished Dr. St. Amand's reputation. He admits that it was his own fault. It wasn't until after the study that they discovered that topical salicylates being absorbed through the skin would block the receptor site for Guaifenesin's uricosuric action. Since Dr. St. Amand has learned so much from his patients, and fine-tuned the protocol, and now that Guaifenesin is now 12-hour long-acting, currently the success rate among his patients is 95%. But I don't think that should be an issue.

    Wouldn't you agree that what is important is that there is at least a chance that one could become well again? Wouldn't you agree that it is important that Guaifenesin has no known side effects and doctors who understand the protocol are prescribing it for Fibromyalgia? Even doctors who don't understand it will often tell their patients, "Try it, it can't hurt you" And it is very important for us Fibromyalgics that it has no known drug interactions.

    Your readers are trusting you to not ban information that may very well be the only thing that helps them. If you need it...

    Here is the link to the study at Pub Med: ncbi.nlm.nih.gov/pubmed...

    Here is the complete study:

    fibromyalgiatreatment.com/C...

    When Guaifenesin began working for me, after my doctor warned me it may not, I was angry! Angry that no doctor or specialist had told me of this treatment when I was too sick to care for or enjoy my two young children. I lost only 3 years. But that was the first 3 years of my kids' lives, and I will never get it back. I am now living as I once was, and I feel my purpose in life is to educate other Fibromyalgics about this treatment and make sure they do it right! We HAVE to show all of our doctors that we CAN get well!

    Sincerely,

    Sabrina Stephens

    Calgary, Alberta, Canada

    "Treatment Innovations usually evolve because someone has investigated an illness that sorely needed a solution. Ideally, the entire chemical sequence of the malfunction has been determined in the process, delineating clear-cut differences between a normal individual and an abnormal patient. When this is the case, drugs can usually be designed to correct or counteract the cause of the illness. Solutions arrived at in this traditional manner tend to be the ones medical scientists most readily accept and trust. Occasionally, however, discoveries are made by sheer luck."

    From the book, "What Your Doctor May Not Tell You About Fibromyalgia," by Dr. R. Paul St. Amand & CLaudia Craig Marek, 2012.

  • Sorry, but that's simply not true.

    To start with, placebo effects can last as long as the treatment lasts and even longer. Particularly because a complication of a direct placebo is often changes in lifestyle and outlook.

    To see if a medication or treatment works to manage a condition, a relatively simple randomised, double-blind placebo controlled trial of sufficient size will show whether it works or not.

    From a medical and scientific point of view, Dr St Amand and the Guai Protocol will never be accepted until this kind of evidence is produced.

    Dr St Amand has had 2 decades to redo the study he did with Bennett under whatever conditions he wants.

    If the protocol does work as he describes, then providing proper evidence of this that would be a big step forward for Fibro treatment and understanding of the condition, even if it just leads to identifying another condition currently mis-diagnosed as Fibro or a subset of people with Fibro. Not providing this evidence (if the protocol does work) is seriously detrimental to everyone.

  • Hi Sabrina,

    I have several issues with what you have said above.

    1) You are conflating two unequal things; the ability to clinically show the efficacy of a treatment and the need to understand the underlying causes of the conditions it is treating.

    2) It is very easy to study the effect of Guaifenesin in the treatment of the symptoms and effects of Fibromyalgia. You would need a double-blind, placebo controlled trial. Take 200 people with Fibromyalgia, half would take a placebo, half would take Guaifenesin but neither group, nor anyone involved in the trial would know which group they were in. Every week for 6 months each participant would take the Fibromyalgia Impact Questionnaire.

    2) You ask why Guaifenesin Protocol gets so much bad press when other things like herbs and supplements don't. Firstly, in evidence based medicine they do, secondly, there is a distinct difference between herbs and supplements and a pharmacological treatment that has no clinical evidence for its off label use.

    3) You are correct, vitamin-D is a steroid. So is cholesterol, testosterone, progesterone, statins and a whole heap of other naturally occurring hormones and substances in the body.

    4) Cymbalta (Duloxetine) is an FDA approved medication for the treatment of Fibromyalgia. A quick search on pubmed reveals over 120 studies, papers and trials of the drug in relation to Fibromyalgia.

    5) The reason that there is so much resistance to the protocol is because there is no peer reviewed evidence for its efficacy. If all that you are saying is true, then as with every other medication, there needs to be phased clinical trials with enough evidence that the drug authority of which ever nation is prepared to license it for the treatment of Fibromyalgia, until that happens it will continue to be met with the scepticism it currently does.

    Finally, addressing the papers you refer to, neither of the links you have posted work so I am assuming you are referring to the two papers on fibromyalgiatreatment.com.

    Neither of those studies show a causal effect of Guaifenesen on the symptoms of Fibromyalgia[/I].

    The first study shows that in 15% of the study population (100 Fibro patients and their parents) a mutation of a gene associated with inflammation is present.

    One of the things that stands out for me in that study is the following paragraph on page 2 column 2.

    "In a search for possible candidate genes that are associated with conditions such as inflammation of the bowel...we became interested in the gene MEFV, in which a number of mutations cause Familial Mediterranean Fever (FMF)...[c]linical features show that FMS and FMF have some overlapping symptoms, such as chronic lower body pain, points of tenderness, and widespread pain."

    That is a huge stretch of logic to then associate MEFV with FMS. Fibro has some overlapping symptoms with many conditions from MS to flu!

    The second study (which does at least mention Guaifenesin) is looking for evidence of an inflammation basis for Fibro. It does this by looking at blood samples from two groups a control group of discarded blood samples and blood samples taken from Fibro patients, 60% of which are taking Guaifenesin and the rest not having taken it in the past 3 months. To be clear, the study is NOT a trial of Guaifenesin in the treatment of Fibro. The study does find some interesting results in comparing the 3 groups of blood samples which warrants more research but it is by no means enough to say this is evidence that Guaifenesin treats either the symptoms or the causes of fibromyalgia.

    You've stated many times in your comments above that the proof is in the pudding, that you and others improvement in their conditions should be all that is required to show this treatment works. That unfortunately cannot and should not be the case. Whilst patient testimony is a fantastic thing to raise awareness of a treatment and to help with fund raising for research and study, it cannot be used as the basis for approval of a drug to treat a disease.

    I'll end with a well known saying in research circles. "The plural of anecdote is not data".

  • Gosh thanks for all of this information - great stuff. I can't afford going to any place for treatment and some time ago looked at Guaifenesin but struggled to think how I could afford it. Anyhow, I've taken the plunge and purchased this now and will see how it works when it eventually arrives. Thank you.

  • Frotbanana, I am new to this website. I am used to people coming to me. When I came across this website, I thought I'd better let you all know about it. The more people who do this protocol correctly and recover, the more doctors will see that this really is the best and safest treatment out there. Please contact me if you have any questions. I was not aware this was a UK site. [link removed by Admin]

    Take care, Sabrina Stephens - Calgary, Alberta, Canada

  • Thank you for taking the time to part with this information. I am going to give it my best shot. Already made a list of foods to avoid and what to look for on labels so as not to ingest Salicylic Acid. It is certainly worth a try. I joined the uk site yesterday too. Thank you and all the best with everything.

  • Frotbana, I am happy you are excited, but you MUST read the book. I suggest you copy and paste everything I wrote to you and keep it in an email to yourself. (who knows, they may delete everything I've written) You are already misinformed about foods. Please read my salicylate checklist. You MUST read the book so you understand what blocks the Guaifenesin in the renal tubule, and what the reversal process entails, and how to determine your clearing dosage. If you do not inform yourself you are setting yourself up for failure. The links I've sent you are links that most people don't know about and they are critical to success. My Guaifenesin wasn't working for 2 whole weeks because I was blocking on a supplement, another time it was toothpaste (there was no mint listed in the ingredients but there was mint in the "Flavour". I wish you the best of luck. We must succeed at this to show our doctors so they can help other Fibromyalgics! :-) Sabrina

  • Further anecdotal reports of benefit will do nothing to change the medical community's opinion about this protocol. As mentioned above, proper studies are required and have not been produced despite this idea being around for decades.

  • I live in ON, Canada and am having the same issue. Anyone form Canada have any insight for me?

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