GP recently told me that fibromyalgia is basically the medical term for - we have no idea what is wrong with you. Says it all really.
Thoughts and opinions: GP recently told... - Fibromyalgia Acti...
Thoughts and opinions
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Ttatt
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The fact i got sent packing with a small leaflet from rheumatology and a option of CBT tells me you are right. A complex condition/syndrome and not 1 size fits all. Plus my diagnosis says most likely fibro not that it's def fibro for me it's a grey area. Just hope behind the scenes research is being done and we get a better understanding in time.
Same for me Themanwithnoname sad thing was, I paid to go private to get seen quicker. I could have downloaded the leaflet from the Internet and saved him on paper and had £200 in my purse 🤷♀️
It's hilariously funny, isn't it? In some alternate reality, somewhere? Ha, ha, ha.
So from the research I've been doing over the few years I've had this go to your doctor and ask for the following tests to be be done
HbA1C
C-peptide
Fasting insulin
This will tell you if you have insulin resistance also pre diabetes or type 2 diabetes undiagnosed because doctors haven't been checking also ask for a prescription of glucophage 500 mg X2 a day
I wonder just how long it will be before they start calling it a TALOIA, (there's a lot of it about!)
Cheers, Midori
To be honest those tests are only going to be relevant for a minority of people. And if they are then there will likely be more relevant symptoms.
Was a proven study that links with fibromyalgia.
can you link to it or provide the DOI? There are a lot of pilot studies that peek at something but do not validate or replicate the results so we are left hanging awaiting more info. It can be a bit lit the papers with Red Wine being good for you one week and bad for you the next week. Not saying that is the case here.
There was a retrospective analysis relatively recently looking at metformin and suggesting along this line and it dealt with large number but there were issues with its design and conclusions for example.
Description has all the links you need also the comments from actually following is very surprising not my video.
Do not get my research from YouTube and the characterisations in absence of proof is very concerning. The "trivial" reason for the study being withdrawn is they did not have ethical approval. Not only did they not have it and then retrospectively obtained it so it was published. The approval was incorrect as they had said they did not have identifiable info on the subjects but did in fact have it so you could say the facts were not correct. Info here: ncbi.nlm.nih.gov/pmc/articl.... Ethics approval is not trivial and being incorrect or found to be inaccurate after the fact is not received well by any journal.
This is the retrospective analysis of a population that I was describing and has study design limitations. The study report said from its authors the quotes at the end and therefore casts a light on conclusions themselves.
How about the thousands of people with well controlled type 1 or type 2 diabetes?
Comments from authors before study was published.
"A larger, randomized control trial investigating metformin’s therapeutic effects for patients with fibromyalgia would be beneficial, noted Dr. Goldstein. “If they could get the same results,” he said, “this would eliminate [the] many people who have been given opioids to deal with pain.”
Dr. Pappolla acknowledged the small sample and that more evidence is needed to impact the care of patients with fibromyalgia. However, he believes that these preliminary findings open an intriguing avenue of research with potentially radical consequences for fibromyalgia management.
"
And the proof is in the pudding how many have tried and how many live a better life because of this is 100x better than any person being told no there's no help there's nothing can be done, the research and trying it is not for everyone but what's there to lose? A bit of time that you would have lost anyway? Imagine taking away a problem that they can charge for just wouldn't be right for business.
Any research needs to be replicated and validated. Nothing against this research but do not rate it until it is tested. Someone asking for bucks on their patreon account or the New England Journal..... is not hard to choose between. There are no simple answers.
Those tests at say £10 each on 100,000 people each year would add up and if it is of no clinical significance then you are just spending money we do not have and removing pain clinics and HCPs. Also even the study authors recognised the frailty in their research and when you look at the actual paper with a critical eye it had significant hurdles to overcome. A follow-up RCT pilot would maybe reclaim some ground and this would be relatively easy and cheap to do as it is already a "safe" medication.
The conspiracy angle from the video is too easy and does not stand up. Science is not easy or quick. Needs to be done right or people suffer. Either directly or indirectly. And if you look at NICE guidance you will see the drugs mentioned are being discouraged for prescription as well.
No offense to you but how long has the condition been looked at? How long have people had to suffer? How long do people have to suffer? In the end we will find what works, and no I'm not just going on one bit of research I'm literally going through food links medical links what causes what pain I've been doing the research since I was given the diagnosis.
Condition got its current name in 1976 and most of our current research has been in the last 30 years. More can be found in the article I wrote here: fmauk.org/history about the timeline of the condition.
I do not like where we are with our current understanding of fibro but I also have the same concern over MND, dementia, MS, ME, and Parkinson's which are also in various states of lack of adequate therapeutics.
But good research is not something that sounds good and works for one person or one that is promoted by the "wellness/supplement cartel" throwing mud at the big bad wolf of big pharma.
I do not care who provides help to our community but people need to put up or shut up with science and conspiracy laden YouTube videos are not the way to go IMO.
Good food and improving diet and having better general health is always going to be a good idea and has good research behind it and will benefit a persons health with fibro. Will it help fibro directly the jury is out with no convincing evidence but some anecdotal. But you can control your diet choices and it is always worth exercising your choices and retaining control.
I already take Metformin
Hi does metformin work for u? I'm just trying muti vitamins has I was reading about them has drugs they give emergency doesn't work I'm already on 300mg gapepentin and ,amitriptyline and does t work . Any advice would be great ful xx
I have no idea if it works to be honest.
Thank u anyway x
I have T1 diabetes. I have lots of autoimmune conditions
I have so much pain all over my body it’s almost unbearable when the pain takes your breath away and you feel your living in hell every day being tortured. I have other health issues and cannot take the meds given for pain for fibromyalgia because of the side effects. I have high blood pressure 180/92 last reading taken last night. A faulty heart circuit and asthma, I have been told I am border line diabetic. I was given met for min but had projectile vomiting and was told I could not take the medication and have to manage my blood sugar through diet. I have recently been told my blood sugar is normal so I’m on the right track with my diet. Fibromyalgia seems to be a grey area for the medical profession the rheumatologist I had seen a few years ago reported I had something like fibromyalgia but because this was not specific enough I have requested a second opinion as my condition is worse and I need someone to confirm what it is ? Sadly I have been in a similar situation in my youth with endometriosis the medical profession told me I was a hysterical woman I suffered from the age of 16 to 30 when I was opened up to find the spores had grown all over my intestines and base of stomach my left ovary was completely damaged had chocolate cysts and had to be removed. I fear that fibromyalgia is very much like that no one believes you because you look well and there is nothing alarming when your bloods are checked yet we are suffering pain through out. I just hope research is being carried out and that one day soon we will have treatment for this debilitating disease.
It'd be nice if HU offered an alternate button to "like".
I do not "like" what you have suffered seeking medical help. Been there, done that.
Ya, I'd like a button like that to click. Not a "not like" button, an "I'm sorry you've experienced it" one.
as with other social media I am sure they would be concerned with "piling on" and people being bullied with the "not like" button. But yes "like" is not always appropriate.
Hi Whiteclouds.I can relate to what you say, I must have had endometriosis since starting periods at 13. Always really heavy and painful first couple of days. Eventually after two children and scan - when things were a lot quicker than now - I gad a complete hysterectomy. Shortly after I was diagnosed hypothyroidism and for years things were relatively stable although I was attending hospial for spondylosis which I thought was through spending my working life on typewriters. Forward on and after having a motor accident which I didn't follow up on at the time, and later thought was whiplash, my upper back and neck caused my lots of problems also for over thirty years now have had left sided head pain. Long story short, after paying to see a specialist and spending 12 months on steroids for polymyalgia, anmd then having to see a different doc was told it wasn't polymylgia but fibromyalgia. And here we are 40 years later having got progressivly worse, can't take the medication and don't think they know what to do with me. I keep going back but at the moment only medication I am prescribed is levothyroxine for my thyroid.I am now panicking as my head pain in worse and i had a minor black out last week. Got an appt,. with doc on Tuesday morningbut not holding any hope out. Trouble is also, my stress and anxiety is through the roof caring for DH with dementia, COPD, can hardly walk and since beginning of year non stop problems, Feet, ears, now a really nasty rash all over his body which after six weeks isn't clearing up, his next appt. end of month. Sorry to offload, but just to let you know you aren't alone. Take care. x
Hi I’m sorry to hear you’ve had some issues with your health from an early age I hope that the doctor you are seeing will help you and that you will start to feel better soon. Sending you warm hugs.
Thank you. Nothing new. I saw the doc she checked my vital signs and said they were OK. That was it. I was so anxious I forgot to ask for diazepam which is the only thing which help but they will only give me about twice a year. So now got to make another doc appt. when I can, and probably wait at least another two weeks for another appointment. So frustrating.
I've been tested for diabetes loads of times starting in childhood, I would have lots of fibro patients have been tested over the years?
Is this a test for fibromyalgia or just diabetes?
It's for resistance in insulin, it literally is a check if there's nothing there then that's a good step in the right direction, next to look at is high carbs.
They are for testing what your type of insulin that is being created by the pancreas and the average of your blood sugar over a 3 month period. They can be helpful when you are at risk or showing signs of diabetes but more commonly administered particularly the hba1c to measure diabetic control in type 1s predominantly but also types 2.
BUT, also apparent in a person that these tests would be applicable would be other unexplainable signs such as:
frequent trips to pee
sweating
excessive thirst
increased utis
Increased irritability, nervousness or anxiety
And if a doctor got a couple of these signs and perhaps your BMI was higher than average they would already be zeroing in and ruling it out with a blood draw or finger prick test and if this showed concerns then a fasting test would be done.
This is bread and butter GP practice and not rocket science. And also part of a regular regime as you get older as well.
Ok my bloods were done and my HBA1C is 34 so normal range. I have suffered for 2 years with unexplained pain and thought it was after hysterectomy. I was diagnosed with fibromyalgia by my Rheumatologist.
For things they can't explain or don't want to explain or look in to they go for the mental side of things, did your pain actually start after your op?
For me my feeling is we are looking at comorbidity in reality ! I believe Fibro to be one symptom/syndrome and what ever else you have going on at the same time and mistakenly put under the heading of Fibro and lead to the classic dismissible term of "there is not evidence for fibro" bonkers remark from anyone!
For me it is because invariably it is NOT fibro, I believe it is another common condition, such as yeast, (look at candida) for example loads of similar symptoms triggered by food.
I have see some of the glucose, insulin theories, so very interesting to see results from the tests and association with fibro.
not getting what you are meaning with "and lead to the classic dismissible term of "there is not evidence for fibro" bonkers remark from anyone!"
with 1.4 to 2.1 million potential people with fibro there will be comorbidity, confusion, misdiagnosis as fibro and misdiagnosis as not fibro when it is and multiple other variations.
But from your comments you seem to be saying current theory is completely wrong. I am not sure that you are saying that fibro does not actually exist but hoping that is not the case.
There have been hundreds (maybe thousands)of research projects with hundreds of thousands or millions of patients researched and the current theories that are in operation are the distilled wisdom. Rankling against it and thinking there should be or may be more is understandable but surely not dismissing it?
Yes, of course fibro exists, Sadly for me my symptoms fit this syndrome like a glove. But that is not the whole picture.
You know as well as me it's not us sufferers that dismiss Fibro - it is the medical profession, as you have read here on this forum, Sadly some of the medics, even a individual's own GP do not believe it and they can be totally dismissive. How do you think that must feel, when you go home, with no help?
I will diverse a little bit,
Problem seems to be and I believe once the overall diagnosis is Fibro, each time after diagnosis you visit the GP to discuss a new symptom they consider it under your diagnosis of Fibro, - or they come up when you discuss your symptoms, "no evidence for fibro" yet they seem reluctant to investigate new symptoms- but this may be nothing to do with Fibro, evidence shows it is common to have another condition running along side Fibro, yet in my opinion GP's seem reluctant to look. or they do not have the remit to refer you as you are carrying the dreaded fibro label! As you know most neurologist do not want to touch you.
The obvious condition that exists alongside all suffers of Fibro is Mental Health, with a majority of individuals suffering with a severe Anxiety disorder, but I would be most surprised if any of the individuals on this forum have ever received an in depth psychiatric consultation to try to establish where their anxiety is coming from, or what type of anxiety disorder they suffer from.
What you will receive is a plaster (normally antidepressants) away you go, and for me this is so dismissive and irresponsible, as not to look at the underlying cause is clearly wrong - We all know there are little or no recourses to investigate mental health, but that does not dismiss responsibility to have this highlighted on your medical records and treated properly, so as to provide support for individuals living with fear.
"You know as well as me it's not us sufferers that dismiss Fibro - it is the medical profession, as you have read here on this forum, Sadly some of the medics, even a individual's own GP do not believe it and they can be totally dismissive. How do you think that must feel, when you go home, with no help?"
Your experience may not be everyone's and may not even be the majority's but there are enough with poor experience to make forums like this required. Not being able to help or explain is also not "poor service." Also a forum is not reflective of majority opinion no matter the subject. Just like an IT support forum.... people go there to report problems and not speak of the excellent experience they are having with their 5 year old pc.
"The obvious condition that exists alongside all suffers of Fibro is Mental Health, with a majority of individuals suffering with a severe Anxiety disorder,"
Facts not in evidence I am afraid. There is a great overlap with anxiety even pre fibro onset and definitely afterwards but your conclusion is not correct. Also your plaster pot-shot is normally not for MH but their other properties like increasing serotonin, muscle relaxation and sleep improvement and sometimes mood adjustment.
The Facts and Evidence unless I am reading these posts the wrong way up, is a large proportion of individuals in this forum have severe anxiety.
We can not be reluctant to observe the obvious common thread on this forum is it clearly points to the association of MH either pre or post FMS diagnosis, there is common issue, i.e. Mental Health and in the main some form of anxiety disorder - muscle relaxation, mood adjustment are all associated with cognitive behaviour, your mind.
Serotonin may be a chemical to balance, as is dopamine, but here again the question is Why is it not being produced? - simply providing a drug to reuptake serotonin still does not address the root cause.
Not sure what facts and evidence you mean. Again a forum is not representative and by its nature will be more negative reflection than the general community.
Large, Clearly, Severe are all definitive words that you use but without anything that supports them. I can appreciate that you may have observed some elements that help you come to conclusions but your time on here has been short and no objective surveys. So it seems like your jumping to conclusions.
I do not have any issues with mental health or anxiety and know many in our community that do not have this but it would not be fair for me to extrapolate conclusions based on my own experience for the rest of the community.
"Research has found people with fibromyalgia have abnormally low levels of the hormones serotonin, noradrenaline and dopamine in their brains." So it is not simply providing a drug but addressing a deficiency much like you would if you were low in a vitamin.
Just like increased levels of substance P there are biological traits associated with fibro and some can be addressed with meds. Are they perfect? No. Is there more going on than just these? Most likely.
Aligning to Mental Health only or anxiety specifically is not correct either but they do play a part possibly in the environmental or risk factors in some that get fibro but also as stressors on those that have it without it being a risk factor.
I a really trying to say like I do in many responses to "solutions" is that people clamour for simple answers but there is not one at present and maligning current treatments while purporting a solution without good foundation is not sensible either.
ncbi.nlm.nih.gov/pmc/articl...
nhs.uk/conditions/fibromyal...
I disagree, It is clear Anxiety for some is a major underlying symptom, it is not clamouring for ideas, as this forum clearly shows this is a common experience and further discussion would be beneficial to us all.
The benefit of a forum is to open up conversation, discuss theories with those of us that are experiencing similar symptoms, - For you to close down each thread on the basis that there is no medical evidence or any evidence that has crossed your attention is dangerous and self centred.
If you have any understanding of medical care and support, you would understand thee need to put the individual at the centre of the conversation, not close off a post with your own personal understanding or opinion.
I see you put a post with details on how to write a good post.
That I am afraid is not the answer, it is how to respond to a post that will give you and all of us the answers to our theories, - individuals on here want to express their feeling and symptoms or theories - not have the door shut each time they vent their feelings on this forum.
With a little more listening and provoking of individuals thoughts we may all learn something.
It is time to learn how to respond to a post effectively to enhance our learning, you can not be judge and jury.
My responses are civil and I think express my opinions quite well in both clarity and accuracy. I am always listening and reading about our condition and our community and spend a good part of my time doing this whether it be on multiple online communities that the charity operates or on our helpline or representing the charity externally.
Attacking me for the views I am expressing when they are the general views of 30+ years of medical research is not really helpful. And, I am first to admit that we (not I but society) do not have all the answers or enough info. I also admit that our view of fibro may change and I would go further and say it certainly will perhaps through stratification and sub groups being identified.
Your characterisation of anxiety being the "solution" that the medical profession is missing is what I disagree with and not its part in the mix that is fibro. Also as you will find with any forum it is a microcosm of our larger community but it is not a mirror of it and will have a bias as support communities do as people are looking for support as they have a need for this.
I am not closing down conversations as my reply to yours is an example of continuing it. But if there is a lack of research, or a problem with the research someone has cited then it is dangerous to allow it to be left uncontested. It is just a contrary opinion that is based on sourced evidence.
"If you have any understanding of medical care and support, you would understand thee need to put the individual at the centre of the conversation, not close off a post with your own personal understanding or opinion."
I do have this understanding while not as a medical professional but as chair of a health charity and while I will state when something is my opinion I will also state when it is the charity opinion and when it is current research position. And when I do not know something or am unsure then I reach out to Professors or Rheumatologists in the field or a member of the charities Advisory Board.
I try to be as right as I can be and am happy to be corrected and welcome it but I also dislike declarative phrases or statements made with certainty that are not supported. I am also open to have a personal conversation about anything fibro or charity related and can be contacted via DM here or through the charity website: fmauk.org/contactsmenu/trus...
Look des, just cut me some flack, Please, I can see you try your best, but before you put your pennies worth in on my posts, can I at least get some feedback from others.
The whole reason for being on this forum is not to have the evidence I already have read on the internet and through my own research, to be attached on my posts.
No need to feel sorry for yourself, you seem a good guy, but it does not mean you cannot listen to what a member wants, we are all grown up's here, it is just you are a little over zealous on providing medical evidence then listening first, to all members full feedback.
Try to be more provocative, like ask why is that an individuals theory, rather than closing off a conversation, after all if the medical profession had all the answers, none of us would be on this forum.
There is no need for you to carry on this tread, I know you understand where I am coming from, take it on the chin and give it some thought.
So you are using the forum to conduct research? Have you told HU that you are doing this as I think it is against their TOS? Also as grown up I am not closing off conversations.
But if someone posts an authoritative comment about a treatment or tests that are based on a paper that was pulled for not being up to scratch and not following ethical guidelines then that is important to say.
I think you meant proactive rather than provocative (Freudian slip 
) but this is what I am trying to be and put things in context. I have not said the medical profession has all the answers but it is important to separate medical profession, clinical research and researchers although there may be overlap.
If you are wanting to do research on here then perhaps a survey with ethical approval or perhaps a focus group or two which this forum is a close analogue of. I have said previously in PM that I wondered at your motivation on here as most are here for support but you appear to have a motive. I do have to admit that your username was indeed provocative and did set some of the initial tone.
Let's not be daft Des, we are all in this together.
Sometimes Des, it is hard to see the wood between the trees, you know full well what I am saying, stop your anxiety and go with the follow, and stop the technical blurb, I want to hear honest feedback from the individual on the forum to help my condition.
I am not a researcher, goodness sake man, get real. Your out of context that is my issue, whilst I some may understand your jargon, try to use some basic terms, open up a post, get the the gritty, we all want to know from each other, that's research.
Sorry about my dyslexia, its not so funny for me! Glad to see you have a sense of humour.
Fair enough, I have spent years with no answers from the Pro's, see many other fobbed off with We have no clue what is wrong I know that's call it Fibro.
The question does-the-nhs-work, for is No, management is not their strength, care maybe, when money and pharmaceuticals are involved it is a price to pay, and I don't need to spell out to you what I am saying.
To be honest, I have learnt more about FMS, on this Forum from the honest individuals keen to express their situations, that include the associated symptoms, the lack of support, the lack of mental health and pain association/diagnosis, the lack of GP support, the lack of trials, the easily prescribed antidepressants and so on, now this is not negative vibes just because this is a forum it is what you, seem to decline as FACT.
Your ascribing a lot of things to me but all I want us to be doing is using this as a support group. I do not know who you are or that you had dyslexia and was not making fun of you as the word used was potentially the right one. I do not have any anxiety about this conversation and my use of language is what it easiest for me and the least amount of energy for me. If you look at any of my posts and you have experienced yourself I am more than willing to expand or clarify something.
I also do not think I have been too technical but I will keep an eye out. The phrase I tend to use "there is not current medical evidence to support this from what I know" which is still open to either challenge or revision over time. But where someone says You Must Do This because your doctor has missed an obvious cause of fibro then I will be looking at it and responding as I did on this thread especially when there are major deficiencies with the study, the process and the conclusion.
Also, if you read a lot of my posts you will see me promoting CBT, talking therapies, counselling where appropriate and the breadth of non pharma treatments. We need a bigger toolkit not a smaller one.
But, I do get from your posts and without any personal judgement that you have assessed the state of play with fibro from your point of view and come to a conclusion about the whole health system and fibro. I may not agree with your conclusion but more importantly I am unsure of the methods with which you have come to that conclusion and that is what I have focussed on. Anxiety and MH are a very significant factor in fibro and in some cases influence cause and on others complicating resulting life and fibro experience. I am not dismissing them but I also think and this is where the research comes into it we have other evidence that has been built up over time and anxiety is seen more as a modulator for the most part.
We have a profile of most users on this site from the experience from how users use this group. Fun, social, crafting, info on meds, mutual support, and advocacy for some examples. But, as I said in PM you seem to have a different than normal use case for the group which was why I reached out. Nothing wrong on that but again this is why you popped up on my radar.
No rebuff from your comment. - it has never held me back, learning difficulties just make you stronger. just the way your brain is wired.
Yes, for sure I am not your average guy, I have thankfully had success in my life and total control to fulfil my desires, until this dreaded syndrome popped up.
I am a very simple speaking person and for me it works, I have the best intentions to you and anyone else in my life and for sure do not intend to offend.
I must say you are like a dog with a bone Des, you do make me chuckle.
Of course if is my point of view, it is my symptom, but that's why we are all here, we want answers to our own theories, or thoughts, this does not mean people have to go with it, we are all entitled to read and believe what we want. The more interaction the more we will understand.
Look we know where we are for sure, as I say just give me some slack and wait for some others to reply on my posts, let the mood flow. I have some theories of my own and I wish to explore them, I for sure what to know, see is there is a common thread. Come on on Des, give it a try.
you may not have noticed I do not reply to all your posts thought I was giving you some space to be honest.
Good theories stand up to scrutiny.
As I've described to you on another post, I'm taking GABA. Enhanced with P-5-P and rhodiola, and balancing that serotonin out with dopamine from glutamine and theanine. My experience is it takes a while to find the exact right dose. You have to start small and increase. If you put too much on you can get symptoms of serotonin syndrome, the same symptoms as when you don't have enough. Also it changes a bit as your body changes, e.g. histamine and cortisol decrease serotonin, so my MCAS or HIT make it necessary to increase them, if the body doesn't manage itself. Balancing amino acids is an art for the individual and not anything that can be produced.
Thanks for this, it is interesting to me, I understand what you say about getting the dose right for each individual, I do agree with the chemical balance for your body needs to be just right, and we have not cracked that either with prescribed meds as they affect us all differently - after all we are a biological being,
I have tried many supplements or off the shelf remedies to either boost the serotonin or the 5-HTP anything in the molecular chain to alleviate symptoms but I have never found anything to help.
I see there is a trend setting for drugs in chews and see that Robin Williams Son has launched a chew that is designed to help serotonin, others are marketing other products on this basis too, poor of Robin I enjoyed his character very much.
That said the only thing that I have experienced relief from off the shelf meds is ARNICA, tablets or oil or cream, I know the cream is used in first aid kits for schools in the UK now.
I provides mild relief, but to take the tip off something is mighty powerful when you need some help.
Neither 5-HTP nor L-tryptophan helped me, only GABA. Praps you'll want to look into it one day. I've also used arnica for decades, the cream seems to help for local pains (got a tube next to my bed), the globules for overall pain etc. probably not.
Thanks for this, I took a look this afternoon, not something I have look at before, I had only understand amino acids and their association with proteins.
This looks interesting. Would you share with me your thoughts on dosage of GABA, how you experience the best results, do you need to build up concentration in the body or can you experience immediate relief or effects.
An overview of your thoughts and experience would be helpful.
My pleasure. No build up, immediate effects, inside of a few hours. Makes it easier to assess and to reduce when you get side effects. But I still used my detailed symptom/treatment (b)log all along. Myself I unknowingly started it the blunt way, took 1x750mg/d pills, and balanced them out with glutamic acid. Luckily I needed much more. But others need much less, so experts on this say start with 125mg sublingually and increase slowly every few days from there whilst your symptoms get better and reduce again as soon as they start getting worse (important to know what to expect and to be able to distinguish your symptoms roughly/fairly well). And don't balance with glutamic acid, but perhaps with glutamine. Now, knowing more about it and seeing my experiences and those of people I know, I'd recommend first looking at Trudy Scott's amino acid and anti-anxiety blog and especially first her "amino acid questionnaire" on that blog. That way you can delve more into how the amino acids are connected and roughly what symptoms to expect. Added extra for you personally is definitely the anti-anxiety aspect of course! So you might like to look into her website and book, altho I think the blog with all the comments is the most useful.
Using amino acids sublingually was too tough on my sensitive esophagus and hyperacidic stomach, so I get them in big tubs and encapsulate them in HPMC-capsules myself, so doses variable, no additives and very cheap in the long run. Theanine I get ready made, also in HPMC capsules without additives.
My dosage pre-MCAS was on 3x0.6g/d (2 in the evening) and 1x0.3g, then I realized I needed some at midday to keep bladder muscle pain down in the afternoons. Now MCAS came along and histamine reduces the serotonin I'm up to 5x0.6g/d, 3 of those in the evening/night. So 3g/d, ever so slightly more than the 125mg some need.... And before the histamine problems anything over 2g/d gave me side effects...
thanks for this, it is good of you to provide the personal feedback. I will take a look at Trudy Scott's blog.
Thank you
I entirely agree. Once diagnosed, almost every other problem cmes under that umbrella. IBS, gastro problems, shoulder, neck and head pain - asked for scans but no go there - I asked to see my notes for last two years and she has put, truthfully, that I have persistently pushed - in that I think there is some other underlying problem which has not been found. I still think that, but I also think that using COVid as an excuse, the doctors have changed there approach. You struggle to get an appointment as they are all part time and only see a few patients a day, also the sugeries are now run as a business so cutting down on costs is also an issue. Out once brilliant NHS is no more. The whole attitude has changed. I am not criticising the docs and nurses who are on the front line and working there socks off, but something has gone sadly wrong. Just my opinion of course.
desquinnPartnerVolunteerFMAUK Trustee
Not really true and while the doctor may not have felt confident in helping you there are much better ways of framing it.
Research has progressed quite a bit over last 30 years. Still a difficult condition and they are limited in therapeutics to treat as well as understanding how to deal with the variability in our community. But they could have done better.
I totally agree with that. I went back and forth between GPs, took endless blood tests and physical examinations.
I was told it was in my head, they also said it was vitamin D deficiency and a weak immune system. I've been told it was Osgood Schlatter Syndrome, that it could be Lupus or early onset rheumatoid arthritis. In some cases I was brushed off and ignored.
It was so long before I got the diagnosis even though I'd been suffering for years. Very frustrating when you're in pain and no one believes you!
Do you suffer from anxiety?
Yes. But only since covid. Social anxiety is through the roof.
have you thought about asking the GP to be referred to CBT as that may be able to help. Can be delivered over telephone or zoom in some areas. May be able to help in fibro direction but also with anxiety.
Thanks for your reply, that is interesting.Have you shared this with your GP? What was the response or recommendation?
Not interested. They did their job. Tick
I feel very lucky that my doc recognised my symptoms and has been very kind and helpful...also my rheumy. Shame that not all medics are as aware....hopefully that will change.
Yes, I have a great doctor too. Compassionate and knowledgeable.
Thanks, I didn’t realise everyone wasn’t aware of this. Some people need a diagnosis to get support or feel there is understanding of a thing to blame rather than just saying I don’t know.
In a way, helped me retain employment but prevented me for gaining new opportunities.
My GP sort of said the same thing to me after all the tests to rule out anything sinister.But he also said if you have any different pain come back to me, but I feel like a hypochondriac.
I rarely went to doctors before I was diagnosed. It’s so stressful!
I got to the stage this time that I have paid private.
My problem is not accepting it I get convinced they have missed something.
I am lucky though my doctor is understanding.
Don’t know what I would do with out this site though, everyone has helped me so much, also knowing your not alone
Yes, like it!
In the words of the physician Atul Gawande "I have come to think of all medical journeys as the ODTAA Syndrome !
"One Damn Thing After Another"! 😏
It's a chronic pain condition I find what your doctor said scary and hopeless ...xx
Please read this with the understanding I have been diagnosed with myalgic encephalomyelitis (ME) and Fibromyalgia so you may not relate to some of my symptoms. One size doesn't fit all, although there are similarities, everyone is different, and these little studies and anecdotal recoveries can cause real harm. I was first diagnosed with ME then Fibro and I haven't seen anyone else describe their condition like mine. I have an autoimmune disease, I have had everything tested, and everything apart from high inflammation markers and an ANA of 1260, comes back normal. I get all the usual; continuous pain all over, tired but wired feeling (restless body), become quickly fatigued, I am excertion and orthostatic intolerant, suffer badly from post excertional malaisethe and all the rest. I have literally cut all inflammatory foods and carbs from my diet, nothing has changed. When the condition first started I was able to walk miles, then, all of a sudden, my legs would stop working, I would literally have to sit down on the spot and call for help. A couple of hours later, my legs would start working again and I could walk a few more miles. The amount of time I could walk dwindled until Christmas 2020 when my legs never got better and I have been forced to use a wheeewelchair ever since. I believe this is because I had been told by my doctors it would get better with excercise, I didnt know any better, hadnt been told about pacing and so just pushed through. Exercise for someone with fibromyalgia is supposed to be beneficial but how do you know you only have fibro if you dont get a proper diagnosis if nobody really knows what is wrong. These conditions are different for everyone and until these conditions have been fully researched and explained, what works for one will probably not work for another and could actually cause harm.
thanks for this contribution BButt as the cost of looking is often under looked. Putting aside having been misdiagnosed and the health professionals being right or mostly so there are many ways that it cost:
# Economic personally as you lost time from work from the condition or going for tests or paying for treatment or supplements.
# Health service cost is also a factor as the many tests, investigations, HCPs time, travelling and admin all add to a cost to treat a patient.
# Cost of stress is important as you have the "what if they have missed something that will kill me stress?" or the stress that there is something that will fix me out there and you know there must be a simple answer or at least one for you.
# Time is a factor as well.... time to do the tests and investigations as well as lost time obtaining acceptance or more importantly time with friends and family and doing nice things or implementing the good practice that is recommended.
# Test complications or consequences. An MRI will cause pain for sitting still and getting there and everything involved and getting a camera inserted somewhere will not be pleasant. An LP can paralyse you.
There will be more of course and this is just a sample and of course the mention of PEM and the fibro / ME conundrum is complex as well. Even for some with ME increased activity could be helpful but knowing if PEM will kick your butt is critical so slow, gradual, increasing over time and listening to your body is the mantra. Getting evidential tests that will isolate conditions or even identify the stratification within our communities will be ground-breaking.
Hi, Oh dear, that didn't sound very reassuring. Not what you wanted to hear, but as you say sounds about right. It's a very complex condition and not everyone has the same symptoms, but there are similarities nevertheless. The response I got, was 'not a lot we can do about it'! I don't want to be pumped full of various drugs so try to manage the best I can. My main problems are the brain fog/ thick head...and a continual pain in my neck which goes up the left side of my head. I hurt my neck last year and I'm convinced that it's the root cause.. but how to 'cure' it? I found some exercises on you tube, but if anyone has any recommendations on those particular problems, please let me know.
There was some train of thought that it was neurological but last year Kings College did some work on it and proved that it was an autoimmune condition.
kcl.ac.uk/news/new-study-sh...
Where that leaves us exactly is unknown, but at least that shows work is going on behind the scenes.
take care x
So, underactive thyroid. Pernicious anemia. Type 1 diabetes. Asthmatic. Premature ovarian failure. Early, and intermittent depression. Anxiety. Raised Blood pressure. Increased cholesterol. Crohn's disease. Fibromyalgia. Food intolerances. Plantar fasciitis. Residual pain, stiffness and reduced motion of both shoulders - 2 years each for frozen shoulders. Hands are now in a lot of pain - the blood vessels raise after using them and the pain is unpleasant. As I already have raised markers for inflammation they can't seem to diagnose anything else. Everyday is a bloody challenge.
I wouldn't totally agree with that. They use the word ideopathic when they want to say they don't know why you've got something. Fibromyalgia is descriptive - pain in the soft tissues and muscles. One day, perhaps science will turn up what is at the core of this illness that so many of us share.
There are a lot of conditions that are without a full understanding or idiopathic (relating to or denoting any disease or condition which arises spontaneously or for which the cause is unknown.) Fibro and JIA (has it in the name) are but two but we have made strides to understand it better. We are narrowing down over the last 30 years and who knows we may see the idiopathic term be a thing of the past. But, it would not surprise me if we ended up with subgroups and have say CSS fibromyalgia and idiopathic fibromyalgia. No foundation for this but as I say it would not surprise me.
The word as you mention is descriptive but probably as wrong as the bad air in malaria. Maybe we will get ubiquealgia or similar at some point.
Well, if fibromyalgia is ever accepted, explained and understood, I suppose ideopathic might well be used to describe it in patients. At the moment it would be tautology - almost. Yes - probably as wrong as the bad air in malaria!
Good to know one quack at least has nailed it!
I think I must have been quite lucky with getting my diagnosis, as it was the physiotherapist I'd been seeing who recognised a lot of my symptoms as being Fibromyalgia. My physio wrote to my GP to get them to refer me to Rheumatology. I only had to go through some blood tests to rule other things out then was given an appointment for Rheumatology. This all happened in the space of 7 months. I was finally diagnosed in June 2017. Although I now recognise that I've probably had it for much longer than that and was initially classed as a hypochrondriac. I've read through my available notes and can see all the times I went to the GP with various pains, some repetitive but was never really taken seriously. So all thanks goes to my physio as opposed to my GP, lol.
Even after the diagnosis, the Rheumatologist recommended they put me on Amitryptiline and it was ignored for another year by the GP until I couldn't stand being in pain and took it further. Only then did they consider looking at my meds.
It's unfortunate but occasionally, my surgery will get some 'fresh blood' in who are very diligent in looking into some of the other things I have suffered from and who will find that it isn't fibro.
I have had a problem with my shoulder for nearly three years and I'm convinced it was after a bad fall and that the fibro is 'enhancing' the pain but I believe it is a rotator cuff injury or tear. I'm gathering up the energy to pursue this with my GP at some point this year.
Apologies for the long post but had to say it.
Your entitled to your opinion. Does not mean your right.
This is how my thoughts are, is it an umbrella to put you under when they don't know
I thing my local doctor did tell me Monday is they're starting to do a new fibo Services in the hospital perhaps it is getting more an more an we need more answers
Bottom line for me: At first I was slightly angry at this when 2 docs used this "wastebasket diagnosis" wording in a first appointment. In the end it didn't harm, and these docs helped me all the same. So I don't necessarily care about such labels, it's what that doc does to help that counts.
For wastebasket or trashcan diagnosis, see wikipedia: en.wikipedia.org/wiki/Waste.... That may be similar and similarly outdated to "diagnosis of exclusion", meaning roughly they can't find anything causing it. E.g. no injury or nerve problem causing the pain part of it.
What's true about it is only that we don't have a good idea how fibromyalgia works, which seems embarrassing, although it's only human.
However it's not that hard to define and diagnose using the diagnostic criteria, e.g. ACR 2016. Definition and criteria are chronic widespread pain, plus an array of further symptoms, esp. fatigue, un-restorative sleep and fog. The label helps us by lumping us together with people with similar symptoms, trying >100 treatments. That makes us able to learn from each other how to manage the symptoms and try the treatments best.
Two docs said this or similar to me, but they were both good, excluded many other conditions, had various alternate theories, but ended up not being able to do more than support me on my journey. My symptoms fit to all the criteria. Anything similar, like MS, Sjögren's was (painfully) checked and proven wrong. I got every symptom checked, to make sure. Now I have a similar "trashcan diagnosis", MCAS. Again this explains most of the other symptoms and has also pointed me quickly to some fairly helpful treatments.
LisaSnowFMA UK Volunteer
I much prefer that fibromyalgia being accurately described as a syndrome with unknown etiology than pretending we know more than we actually do. Many disorders have unknown etiology and are multifactorial. That's just life. The progress can be made only if we (scientists) are honest with what we don't know, and leave room for the possibility that what we currectly know may be wrong so they can be corrected. Be patient, and let the data lead.
30 years of misdiagnosis, patient shaming and passing the buck. I've been patient my entire life.
Don't know the specifics of your case, but do hope you find a doctor whom you like better soon.
Sorry for your situation but there are many conditions that share our same issues. Lots of those conditions do not have as large an affected community but there are rare diseases and common ones that are still mystifying science and health professionals.
Dementia, CRPS, ME, Endometriosis, Huntington's , lupus, and some other life limiting conditions all trouble the scientific community in some way and their patients have to wait and be treated symptomatically with the best tools the doctors have to hand.
The time frame you mention of 30 years is probably the most changeable and progressive in terms of fibromyalgia development and understanding. But as I use diabetes as an example often think back to January 1922 in Toronto, when Leonard Thompson was the first person at 13 years old to receive insulin as a treatment for type 1 diabetes. Prior to this time people just died. Those going through puberty triggered diabetes seldom made it to adulthood and their life was misery. He lived until he was 26. Until insulin was made clinically available, a diagnosis of Type 1 diabetes was a death sentence, more or less quickly (usually within months, and frequently within weeks or days)
But we look at how it is treated today and that's not even looking at the drop in limb loss and eye issues through improved care. Its a 100 years which is a very short time although we all want something now. I am hopeful in 20 years time when we look back at fibro and ME and other conditions that we will be equally blasé about the difficult history that our condition had.
I understand and appreciate your comments. My everyday life goes through periods of absolute misery. I collect conditions like kids used to collect marbles. I think the situation is made more unbearable by false information and the industry contradicting themselves. I understand human limitations but from my perspective, and with a potential 70 year life span, almost half of it has been pretty shit.
Totally get that and perspective while inside this condition can be skewed. Its not great to be thinking about the career travelling around the world earning lots of money not being available as a choice due to it, or the life in another country that you had planned to have or the life your child does not have that you planned for them. And through all of this there is the pain and lack of health and other choices stolen from us.
But equally it could be the career that you do have at present, the friends within this community that you have made that you would not have without fibro, the knowledge that you have acquired as a result, the travelling that you have managed to do in spite of your condition and that you are still going. Perspective as I said but I know which I would rather have but equally one of those options above could have seen me dying in a plane crash or some similar life limiting situation. Path not travelled etc...
Leonard above got an extra 13 years that he would not have had. I try to focus on what I have an what I can do but its hard at times. I also spend a lot of time trying to ensure that the correct info is out there and that people read it. This is not the easiest thing to do either and can be frustrating especially when others think their is a quick fix or the doctors have just missed something or are just being lazy.
If you have not already I would see if there is a local support group near you as they can be helpful.
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