Which of the following do you feel is... - Fibromyalgia Acti...
Which of the following do you feel is most important when discussing Fibromyalgia with ALL Healthcare Professionals within the NHS?
Mdaisy476 Voters
Done
I have found that once your diagnosed your pretty much left to your own devices. Which is not helpfull when trying to apply for benefits .
I wish I could 'like' this comment a hundred times 👍
Totally agree
Having a good bedside manner and listen to us. Fatigue is a major factor in having this disease please more understanding to us.
Ditto
To not be so dismissive when it comes to medication.
To not have new symptoms or issues immediately put down to Fibromyalgia, but to follow through and investigate. 🙂
I so agree - any new health problems are always put down to Fibro, I have mentioned that on so many occasions and all they say is well its a complex condition - it doesn't mean to say that from that moment on its ALL Fibro - but then again I had a torn rotator cuff in my shoulder for 2 years before Fibro and was told it was just a trapped nerve in my neck, no examination nothing! A heart condition that needed surgery that I was told was "all in my head" until they found it!
I just want a nice caring GP that has an open mind that I can trust to have my needs covered, is that too hard??
It is rare that a GP even touches a paitent today,, it seems thy spend their lives with a pen in the hand.
I kept telling the Dr my Prostate was swollen,, eventualy I managed to get one to do a digital rectal examination,,, I mean that is a basic examination and eventuly one was brave enough to "attempt" I could tell from the manner in which it was done he hadn't a clue and was only comfortable with his pen.
That is not medcine,,,it's ham fisted neglect,,, and it goes with the cloth ears of the profession!
😯
I'm clenching manfully and I don't have one of them prostate thingys!
Our surgery dont even look at patients, they just diagnose over the phone and then say, you have to go private for that! Takes less than 5 mins!
Then I go and ask Dr google and he says, you need this exam and this scan and... to diagnose whatever, but who cares if the patient is gonna pay some private bod? No doubt there will be a ping back when they get stuck (or the money runs out) hey?
Done
Done x
Done, I think alot of people feel we over exaggerate our pain and it's not the case, having this illness is a burden and a little compassion goes a long way
Done. A little bit of compassion seems to be missing these days. It goes a long way x
Education by those who genuinely know and understand the condition. Sympathetic doctors, nurses and physio, etc to give education from a patient centered approach rather than from a biological perspective.
Ideally, medical professionals, who themselves experienced the illness, or they have cared for family members who have.
I feel that is the best way to bring compassion and genuine understanding into education. And from there, patient orientated treatment/research will naturally follow.
I'm a young person and know one care about how I feel its so awful
Speaking as an ancient person francesco-P, you will need to kick up a fuss and make sure docs etc take notice. Take confidence in reading up on reliable sites and go armed with facts. Get parents/siblings/ friends on board to help you get what you need. I only have my autumn years left to have to cope with this nasty condition, but you need to make the most you can of your adult life. Gentle hugs and good luck xx
Thank you Jools56... I do try it's not easy when you feel alone and have only medication for company I have autism so no one what's to know you or have you as a friend that's life.But thank for kind words so kind. Francesco
Painkillers are a godsend at times but they also have their drawbacks. I'd welcome more of a focus on increasing mobility and independence by other means. I'm fed up of giving the strong pain meds a miss in the morning so that I'm cognitive enough to try doing my own food shopping and then finding myself in agony and tears in the middle of Asda after attempting to pick up a box of washing powder...
I have had fibromyalgia/CFS for getting on for 40 years but I only got diagnosed about 6 or 7 years ago. The whole thing with the medical profession has been a nightmare - with only alternative practitioners understanding that these sort of illnesses actually exist! For many years I was dismissed as a 'trouble maker', 'attention seeker' and downright hypochondriac by most GPs and specialists! I have seen a bit of a breakthrough (thank God!) in more recent years but conventional medicine still needs to be further educated on these sort of illnesses and has still got a long way to go in my humble opinion … I still find many are dismissive of the condition and unwilling to look into it or acknowledge the complications it brings to those of us unfortunate to have such. I am aware that I am particularly complicated due to balance/vertigo problems in the early days (which threw off the diagnosis somewhat) and chronic tinnitus (all of which I still have). But I am starting to come to the conclusion, after all these years, that the 'common denominator' in all my symptoms (too many to count!!) may just be thyroid … I am praying for helpful results from recent blood tests from a thyroid specialist as I have spent my entire adult life (I'm now nearly 56 and have been ill since teens) fighting this debilitating life-controlling condition - losing the respect of medical professionals (including losing out on benefits etc), friends - and even family - along the way, as it continues to be an the 'invisible illness from hell'.
Me too! I've got auto immune thyroid ( Hashimoto's Disease) just diagnosed only after a battery of blood tests. I think they're linked in some way that medicine does'nt understand yet - an awful lot of fybromyalgia sufferers seem to have thyroid dysfunction as well - just my observation I don't know if there is any research into this?
Indeed there is research, hence me becoming more aware of it! There are now a number of books out there on the subject of the link between thyroid and fibro, most of which I have either purchased or looked at. Probably the best one (as it's been written by a sufferer and is therefore non-medical) is, unfortunately, only available as an e book on Amazon. However, I'll give you the link and tell you it's well worth purchasing (inexpensive compared to proper books) if you can … For me it seemed like it was the missing piece of the jigsaw after all this ridiculous time! However, I've yet to get the result of recent blood tests from a thyroid specialist (who, I'm delighted to say, 'thinks outside the box') and you'll probably hear me screaming - from wherever you are - if the results are the usual 'normal'!!
Here's the link: Edited by Admin Please PM member for link Thank You 
It's worth reading the customer reviews on this e book as well to see how others have found it beneficial …
***Until the NHS acknowledge that more detailed/complex blood tests* need to be done for thyroid there will be many unresolved cases of fibro IMHO.***
I can recommend some other books if you want to come back to me on it.
* The real reason of course is that more thorough thyroid tests are expensive, as is the thyroid treatment that may result - that's why the NHS won't do them!!
Thanks for the useful link. I have definitely felt a little better since starting on levothyroxine but not enough to eradicate all pain and tiredness. The biggest difference though has been reluctantly giving up work. I'm nearing 60 so doesnt affect my pension too much and it allows me to live at my own pace - I can wake up naturally without rushing, rest when I need and generally get tasks done when I feel able. So if you do get diagnosed thyroid problems don't get overexcited that all your problems will be solved with meds! X hugs
Don't worry I've already prepared myself that, even if thyroid problems are detected, it probably won't change things much! In my case, I've not been able to work since my early 20s due to my condition and have no choice but to stay at home all day (I'm fortunate enough to have a husband who's in full time employment). However, just to get a diagnosis/recognition that the thyroid may be playing a part would be good!
Poor you 
at least i'm nearing retirement and up until 3 years ago fit and well and able to work fulltime. I feel very sorry for those diagnised like you when young. It's blighted my life enough that i've given up work but for those whose prospects are a lifetime of no work / low pay it's a double sentence... xx
Well I have thyroid problems and just try suggesting to the doctor that there might be a link between fibro and hashis and that the one size fits all levothyroxine may actually not be helping much at all. I tried it and almost got shouted at and told I was failing to accept my illness and needed anti-depressants.
I too have Hypothyroidism, which I believe could be Hashimoto's, but never confirmed. However, I wonder if a lot of my muscle/joint pain may be caused by Levothyroxine. When I've mentioned that perhaps my pain is caused from Levo side effects to various GP's in my practice on different occasions, they have all said that's impossible as they've never heard of anyone experiencing side effects from Levo
This is absolute rubbish as the leaflet inside the Levo box describes joint/muscle pain as a possible side effect. GP's won't openly acknowledge this as a possibility as they won't or can't prescribe anything else for Hypothyroidism as anything else is on the banned medication list because it's a lot more expensive.
I truly believe that it's the Levo that causes my pain as the higher the dose I have to take, the more my Fibromyalgia pain increases. That can't be coincidental, surely???
I'm in a catch 22 situation, I need the Thyroxine, but the Levo which is artificial Thyroxine causes me so much pain. I've tried stopping my Levo for 6weeks previously and my pain got a lot better, but I eventually felt like my body was shutting down, so had to start taking it again!!!
Perhaps it's time to stand up to the Government to demand alternative medication as obviously Levo isn't going to suit everyone!
I stopped taking levo altogether a little while ago and now take natural desiccated thyroid (NDT). I'm still in a lot of pain and am not at the optimal doseage BUT I noticed last week I went to university attended a lecture, then a meeting, stopped by the charity shop for a browse, dropped by my mum and went home and actually studied without keeling over. Normally my fatigue is so bad just doing one of those things would mean me hitting my bed as soon as I get in. Then last night I cleaned up the kitchen at 9:30pm ready for this morning. Again normally I'm dead and leave it untidy with stacks of dishes in the sink. So just having a little bit more energy makes switching worth it for me. I'll keep you updated on how it goes.
You are not crazy for thinking levo may be contributing to your pain. I feel exactly as you do when I increase the dose of levo the pain increases.
I read on the internet that in fact the thyroid produces 90% T4. What is the other 10%? T3. What is Levo? Only T4. If you have hashimotos and struggle to convert T4-T3 then every little T3 helps. So it is feasible that taking levo may make you feel worse, whilst still being necessary.
It may be worth seeing a functional medicine doctor. Although its £££😟
Thanks for your reply Alanna, it's fantastic to hear you're getting positive results from taking the NDT.
I would be happy to take NDT, but I'm really nervous about ordering it on the internet as I'm not sure which website is reputable to ensure what I order is safe to take, plus how do you know what dose to start on? If you can pm me with any advice, I would be very grateful.
Thanks😀
Maybe a change of brand. On the Thyroid UK Forum here on HU many talk about Teva as not suiting many. It is usually the fillers that can cause a problem and not the active ingredient itself. 😊
The Author is an Active member of the Thyroid UK Forum here on HU. So you could ask him any questions you may have by PM if needed. I found the book very informative.
Not testing the T3 routinely in the NHS is a scandal and leaves thousands unwell. It is not an expensive test. Every cell in the body has a receptor for T3 - brain - heart - gut - skin etc so when levels are low there is simply not enough ti go around 😊
Have you read Dr Barry Durrant-Peatfields book ? - The Thyroid and How to Keep it Healthy. One of the best ...
Thanks, Marz - yes, I realised that the author was a member of Thyroid UK and should have said so actually (but there's only so much you can say on here before you run out of space and/or bore others rigid! LOL!)
Yes, it's the testing of the T3 that the NHS refuse to do and, whilst I suspect the test itself may not be expensive (as you say), no doubt the treatment is and - more especially - the pharmaceutical industries will miss out on all the other medication, e.g. for diabetes 2 etc, that may just clear up once the thyroid is 'adjusted' … controversial I know but my youngest son (who's just graduated with a degree in ecology last summer) learnt about such things and the NHS is very much bullied by these big companies … scary actually.
I will look out for the book you recommend now - thank you so much for that.
I saw Dr Peatfueld in the UK after I was diagnosed with Hashimotos here in Crete in 2005. Fibro diagnosed in the UK by a consultant Rheumatologist in 2000.
Dr P taught me to monitor myself - temperature - pulse and symptoms and how I felt. After 6 weeks I would send him my results and the next phase would be discussed. And so it went on for over a year. So he was training us to take care of ourselves by monitoring our progress. His ongoing advice was included in the initial cost
It's all in the book .. 😊 - it really illustrates how the thyroid affects every aspect of health ... so not testing T3 keeps thousands unwell and Big Pharma continues to dictate. Functional Medicine must be the future ...
If it turns out that I too have a thyroid problem (and, to be honest, I'm praying for that really as I see it as a way forward after nearly 40 years), I intend to bring this whole issue to the public's attention. I know this has been done before (mainly in published form - your Dr P being a prime example of course) but the general public are still not really aware of it. I myself have wanted to write a book for years on all my experiences and I also have a friend who works in the theatre and who has connections to film-makers/documentary makers etc. and who has promised me she'll get the word out if need be … This disgusting continuing practice of the NHS not testing T3 is no doubt stopping so many living their lives … it simply cannot go on.
I'm heading over to Amazon to look for Dr Peatfueld's book now … Many thanks again.
Have just found the book and will be ordering it! I rather suspect it will be similar to other books I've read on the topic but there is usually something extra to learn from different authors. I'm sure such people who expose this sort of thing must suffer from death threats from the powers that be … What an unfair and unjust world we live in
Ah, just realised you first wrote Dr Barry Peatfield-Durrant's book - guess that's what you mean, rather than Dr Peatfueld?
His name is Dr Barry Durrant-Peatfield - Dr P for short 😊 He studied under Broda Barnes ... later in life.
Yep! Found the book on amazon - will be ordering as soon as I can afford it Thanks again for all your help. Lovely talking to you
I have had so many thyroid tests over the years but as you say, all the basic ones and nothing ever comes out of it!
It is an invisible illness from hell. I feel that the majority of doctors/specialists are male and as this is a condition mainly affected by females they just don't understand - like the menopause! I'm 56 and have had this condition for 13 years so to put up with it for 40 years - my goodness. I'm no longer on meds but changing my diet drastically in the last 6 months and learning qi xong has really helped.
Yes, I do agree with that! Having said that, I've encountered hostility from both male and females doctors/specialists over the years (and God knows I've seen enough - must run into the hundreds now!!) When my problems first started during my teens almost no one would believe me as fibro and such like hadn't really been heard of. The world (in terms of knowledge at least)has changed quite a bit (thank God) since those 'dark' days! As you and I are the same age (and I too am going through the menopause) we can empathise about the effect fibro etc. has on this stage of our lives … Just when I thought things *might* get a bit better, another layer has been added to it all!
As for meds - the introduction of Tramadol pretty much changed my life a few years back. I hate that I am 'addicted' to them (morphine), making me a junkie really - but what choice do I and many others have? I've tried every alternative remedy under the sun (and even trained in some of them myself), I've tried diets and just about everything you can think of … That's why my attempt at getting further tests on my thyroid now is about the only option left ...
All I can say to everything that you said is "Ditto" my life has been a mirror image of yours and I am 4 yrs younger than yourself? You are not alone.
I think there's more exactly like us out there than we realise … I've just replied to a lady on here who is also very much the same and of the same age. I think that's probably the best thing about these sort of forums - finding out there's others just like us out there! I expect that, like me, when your health problems started, you felt very isolated and alone; no internet in those days of course and the medical profession was still in the 'dark ages' at that point! But perhaps the light is just starting to be shone on all us unfortunate ones as more and more people become aware of such conditions … let's hope so.
I totally agree with you there & yes, let's hope that more people are helped by checking out these forum's & they aswell as their friends/relatives/work colleagues etc can also understand this condition more & what they could possibly do to help someone who has Fibromyalgia?
I have read through all the comments about this and I know exactly what you are saying. I am now over 30 years of living with this nightmare condition and even though there has been more education with regards to ‘understanding ‘ Fibromyalgia, I can’t ever remember the word breakthrough being used. I too have had an under active thyroid for many years and screaming tinnitus. I have Osteo arthritis and it doesn’t matter if it’s a completely different matter I always tend to get”it’s the arthritis “ or “it’s the Fibromyalgia “! I really don’t feel any further forward now than I was back then. Thanks for the link to the book. It certainly sounds like something worth looking into.
To be honest, you're one of the few people who have "screaming" (perfect word!) tinnitus like me that I've heard of. Mine all started with vertigo/balance and tinnitus in my late teens when, at the time, the family GP thought I'd had an inner ear infection. However, my sister (who doesn't have those problems) has also been diagnosed with fibro leading us to believe it's a genetic/hereditary thing. Interesting to hear about your thyroid - I still feel pretty sure this is the route cause of my own illness (especially as my late father had thyroid problems and it's in the family). I'm sorry to hear that you too have to suffer these symptoms - it really is the worst illness imaginable and, until something more is done, all us sufferers can really do is console each other and empathise.
And, yes, do look into that book - it's fascinating actually and you will probably recognise your own symptoms in it.
Tinnitus can be linked to low B12 which is so often low with low thyroid. Result is good around 500. Are you also on the Thyroid UK Forum here on HU ?
I am not on the site on here. I went on to Tinnitus uk but to be honest it doesn’t appear in the main to help. It deals a lot with hearing aids which I don’t need as my hearing is fine. I have been basically left to get on with it. I have been looking for answers that can help even a little but up to now have not had much luck. I have downloaded the e book that BlueBlackCatLady recommended but haven’t started to read it yet.
Unless someone has had tinnitus at high level (mine is 24/7 and so loud it fills the entire room and can't be blocked these days by even the loudest TV or radio levels), it is very hard to understand just how debilitating and distressing it is. My experience of tinnitus groups (the official ones I mean) has been that they are unfortunately a waste of space … And ditto your experience with hearing aids. Nothing has shifted/helped with mine in nearly 40 years. Having said that, have you tried Bach Rescue Remedy? I'm a great advocate for natural remedies and trained as a Bach Remedy Practitioner (mainly online) some years ago. When I absolutely can't sleep at night, due to the extreme noise, this is about the only thing that helps.
I'd be interested to hear your thoughts on the e book when you get chance. I confess to not having read it all yet but the bits I have done are pretty much the story of my life symptom-wise!
Like you I think much of the problem is thyroid related and certantly neuro endocrine in nature,,, but will Dr's listen to those who have auctualy did a bit of research way beyond basic T4 counts. NO!
Vote made.
I feel I haven't been given any explanation of what fibromyalgia actually is and haven't had any follow up appointments to see how I'm getting on and what can be done differently or as and when things get worse. Also I've spent about 28 years with so many different diagnosis before I went to the doctor after being told they might never know what's wrong with me and asking if it could be fibromyalgia to be diagnosed there and then.
I think this is the story for most of us on here unfortunately … Doctors (on the whole) just wipe their hands of anyone who has fibromyalgia - mainly because they simply don't understand it themselves unfortunately. Things have got to change.
I would like to be treated holistically ie the health problems of the body as a whole. Like most people on here, I have a lot of other co-morbidities, but none of the specialists seem to come together! So I see rheumatology, opthalmology, neurology, dermatology consultants, but they all give me meds for their specific areas. My problems really began when my thyroid went for a walk and I've never been well since.
Me too! See my post above. I'm beginning to think there's some link to the thyroid system
Read my post above, Maggiet - and, more importantly, my reply to Jennyw59 (below) who advises you to read her post too! Conventional medicine still struggles as it (mostly) refuses to take the body as a whole - and, as you rightly say, only deals with the one specific problem/area at a time … I've had nearly 40 years of just that!!!
Once an individual Has been officially diagnosed, GPs should Not use Fibromyalgia as a 'Catch All' for all other health issues raised thereafter because it has been proven that this illness is often part of a comorbidity of ailments.
In the first year after diagnosis, it is also imperative that patients are monitored and supported closely to ascertain their range of movement and level of pain, this may include working with physio and other health professionals in relation to their other health issues.
There should also be Automatic referral in the first instance to Pain Management Clinics. Those wishing to take a more holistic path should be given advice and support on proven foods, vitamins, minerals and other homeopathic treatments including accupuncture etc. to ensure treatments can co-exist with ongoing medical care.
Thank you for the poll and for reading this comment.
/My symptoms are changing & moore varied, more like Meniers disease/Dystonia but everything is lumped together as Fibromyalgia.
This cannot be right, nor is it helpful as I'm not given any help with new symptoms.
So sorry, I forgot to mention that after the initial First Year Comprehensive Assessment (this should be part of a nationwide research project) GPs should also support patients by acknowledging that Fibro patients, especially those with certain comorbidities actually qualify as being described as Disabled together with all that entails, up to and including a commitment to providing documentation (at minimal cost) to support ESA and PIP applications and ensuring that the relevant government and local authority bodies (such as Housing) are aware of the effects of Fibromyalgia on individuals.
Because this illness is Not life limiting, there appears to be a reluctance by most governments to undertake any comprehensive research, acknowlege the debilitating effects and provide ongoing support because, it is essentially a drain on the public coffers. However, a focus on research could aid in the discovery or invention of a cure.
Actually, it IS life-limiting...I am stuck indoors 80%, can't go out, can't function.Confined to bed,if lucky, lounge-.in pain and utterly exhausted, with an increasing number of weird symptoms.Fms is sooo much worse than anyone thinks. Just hope others get help.^_^
Actually you're right - the majority of us are in the house a lot of the time so not getting enough exercise - that in itself will decrease life expectancy or lead to further health problems, heart disease etc through not exercising. therefore if research was done looking at this i'm sure they would find we die earlier than others without FM
Unfortunately, you're right. Every Fibro Warrior will attest to this fact. However, I was using the clinical description of Life Limiting and as valid as your point is, it could be considered as somewhat disturbing by those who have clinically recognised Life Limiting conditions like various cancers, heart or other essential organ diseases etc.
Until sufficient research has been undertaken, Fibromyalgia cannot at present be classified as a Life Limiting condition as there appear to be quite a number of Fibro Warriors living well into their 70s and 80s.
Although all important.
It is very frustrating when a Rhumatologist diagnoses you only to be told by a nurse that the condition you have been diagnosed with isn’t really a condition. It’s just a made up condition to quiet people like me taking up too much of their time. 🤬
Grrrrrrrrrrr … who told you that? Nasty, nasty people - I've had comments exactly like this but not for a long, long time. I honestly thought people were starting to understand such conditions. This makes me so angry and sad
The nurse who told me that was actually from the same department, Rhumatology. Crazy.
Yes, I'm afraid it's happened to me many times with different health professionals: Very few of them would put up with the disrespect I've often been shown over the years. Their education on the subject would be good but, to be honest, I suspect some of them simply don't want to know - I think it just makes them feel superior to say such horrible/thoughtless things.
!!! Unbelieveable! I wouldn't wish it on them but they'd soon change their tune if they have it!
I agree. If there was a way that they could spent a few days living with only a few of our problems they would definitely think again.
Most of those are equally to important. I have had almost no GP acknowledgement or even willingness to discuss my illness, despite consultant diagnosis and severe symptoms. They avoid even using the word fibromyalgia, and seem to stigmatise me. It has been nearly impossible to get proper attention to pain meds reviewed and questions answered about my meds or other treatment. I can't go to the surgery and they will not make home visits. I am left without medical care. I also have diagnoses of severe ME, Postural Orthostatic Tachycardia Syndrome, Osteoporosis, Hypermobility EDS and IBS.
The GPs don't understand or want to deal with or learn about these even when I mention NHS website info I have read. If I had a good GP it would make a huge difference. But I have tried, and can't find one in my area who wants a housebound patient.
I have been ill since 2002.
Since diagnosis I’ve had very little support. Seen rheumatologist who said it’s Fibromyalgia and would refer me to a Fibromyalgia clinic and pain clinic, that was a year ago. I see a woman which is what I think is the Fibromyalgia clinic who talks at me for an hour to the point I feel like screaming! She has nothing new to say, except constantly repeating I need to reverse the process that caused this ( bear in mind I now believe I’ve had this since late teens and am now mid 50s) she goes on about pacing and breathing exercises. It’s of little use to me and even my husband, who drives me there and comes in, and is a very patient man, is baffled as to her role. He challenged her last time and said that how do you get to a point of relaxation through breathing exercises when you’re in pain, to which she had no answer. My condition is deteriorating but little point in going to GP as I’m met with the same response so I don’t go anymore.
I’m not sure what the answer is for us all with this condition, but I can no longer work, even part time, and feel life is passing by, but I try to take pleasure in little things.
I personally don’t think, with as much will in the world, that I can reverse a process that started so early in my life, but went undiagnosed ( I had misdiagnosis of RA, depression, anxiety, to name a few) and it wasn’t until I had BC 3 years ago that consultants did proper investigatory tests ( fearing it may be cancer elsewhere in the body) that I finally received a diagnosis of Fibromyalgia. I’ve since had to give up work, due to basic incompetence at even managing the simplest of tasks, and have gone from a good career to having to resign myself to the fact I may never work again unless I significantly improve.
I’ve rattled on, but what I’m saying is that because so many health care professionals do not recognise Fibromyalgia, or certainly didn’t 30+ years ago, I was left feeling a failure, and that it must be all in my mind.
This is why I feel compassion and understanding are so important for people with Fibromyalgia, the hardest part is / was not being understood.
Best wishes to you all.
T x
I think you should read my own story above - you story could be me!! You are very much not alone … I have not been able to work since my early twenties (just coming up 56 now) and was also undiagnosed until a few years ago. My life story is a nightmare and a catalogue or errors/misdiagnosis and total misunderstanding by both the medical profession as a whole and many others (including family and friends). Like you, I believe there were certain issues - emotional/trauma ones - that may well have set the whole thing in motion more than 40 years ago now. However, I am now about to embark on the thyroid route (one I've tried before but to no avail) through a specialist who sees the link between fibro and thyroid. I will post after my test results to all those on this site who may be interested … I pray it will now lead somewhere because, like you, my life has been ruined by this nasty, debilitating condition which has the 'double whammy' of not being believed!
You are not unreasonable...same for me.get referred to OT...nunuse as every time I go to appt. I spend next week at least , in bed, in pain and immobilized. They all seem to think that exercise will help....if you can lift your arm or leg ! So sick of bring told exercise is the key....just having a shower puts me in bed for 3:days. Oh well.:-:-[
Yep! I've had the same kind of comments over the years … Some people just have no idea! I was told (many times actually) to go for a long walk round the block every day … If I could do that I'd be at work earning money, not sitting at home in agony and distress!!
Excercise is the key!! Especially Yoga... you mean you can't handle yoga??! (like, almost everyone can) Then try pilates...too tired to do a bit of pilates....really?...then swim. Surely you can manage a few laps around a pool, the water supports your weight you know, it's not like you really need to exert yourself....you mean you can't even manage that?! (unbelievable)....then walk around the park/block/garden. Get a dog that'll get you going. You'll be forced to get active then. I mean I/my sister/brother/butcher/baker/candlestick maker/ has condition XYZ and still manage to do ABC what's your excuse??!😥
when you have any long term condition being more in partnership with health care professionals is key
Does anyone else have low serum B12 under 300?
Could it Be B12 ? - book and film by Sally Pacholok. She mentions a level of 500 to prevent cognitive decline and neurological symptoms ..
To not say everything is a flare up...
I clicked all of the options because the surgery I go to is terrible, I had one telling me she wouldn't allow me to have home visits because she thinks it will help my anxiety to go in there, she's wrong, it doesn't help my anxiety or my FM, I get so anxious days before the appointment that my sleep is way worse, then I feel quite ill on the day of the appointment and I'm ill for several days after. It's hard work and the GP's don't understand that. Plus there is no point me going to see a GP if they are going to say that everything is a flare-up.
Done
Hermes123
Staff at all levels when they make a referral to look further in depth to a severe problem, follow it up to see if the referral for further intervention has been followed up ! I had a referral 6/8.weeks ago nearly three weeks ago I followed this up to see what the situation was, told they would look into the situation and get back to me, no phone, no email or letter? I think this is so plain bad. Hermes.
From the absolute onset of diagnosis, time must be given/ offered at that very point of diagnosis to explain the complexities of this disease . Explanation of all its symptoms,treatment including all medical as well as self help and lifestyle changes. Also several follow on appointments in which a spouse/ partner or family member can be included. Finally a complete top to toe thorough health check of bloods, organ ,spinal and neurological examination carried out.
Done 🦋
I very seldom can discuss anything about my illnesses with a Dr. or medical professional, due to my weak muscles being unable to operate my vocal chords, so I would have to type out a detailed statement of all that I suffer from. It has been my experience, that a Dr. or medical professional (unless paying privately) would only want to take ONE matter seriously enough, not being interested in all the "extras" so a meeting is just not beneficial. Also my age now would put me in the "disinterested" class!
On a bad day I do feel 'short changed' I was diagnosed over 20 something years ago and was told to go to my doctor for medication - and that was it. No specialist help, pain clinics, ESA or PIP payments, even though at the time I had to work over 60 hours a week to live (2 jobs). I found out about it myself , by the internet, by listening to my body and working out what seemed best. I don't regret the way I did it but at times (in the days when the NHS weren't as restricted) I wish I could have had a conversation about pain relief or gym pools etc.
Done
Done
Be open to alternative treatments
More support regarding symptoms and daily living, reffered to specialists who understand and have more knowledge regarding fibro. A change in attitudes from doctors dealing with patients with fibro and to be less dissmisive regarding treatment.
If we had a diagnostic test for Fibromyalgia, I believe that would be the game changer. It would give proof and a starting platform for patients and health professionals. We are at present in a limbo land swamped by drugs and treatments that only mask the symptoms.
Recognise that not everything is about Fibromyalgia, sometimes we have other things going on as well, so don’t fob us off with “Its just your fibromyalgia “ when it may well be due to another cause that can, and should, be treated more appropriately.
Yes!!. I have occular roseacea quite severely. After months of burning eye pain I went to my GP. She did not even look at my eyes. Just smiled condescendingly and nodded patronisingly and said 'There's nothing wrong. You keep coming here but you need to realise that Fibromyalgia affects everything' Then dismissed me.
Paid to see a opthalamologist (I always spell that wrong) He attempts to lift my eyelid back then says you have complications and eye changes due to untreated occular roseacea. My lids were very swollen. He said it was very severe. I have been on cortisone eye drops for 5 months. Paying for the doctor and meds has meant I'm behind with my council tax. Trouble is my doctor could have literally given me the same diagnosis and meds. Needless to say I avoid that 'Doctor' now.
Sorry but your GP's response make me laugh out loud. Bad sense of humour. I'm afraid too often we are proved right. Just like the dead chap what had it engraved on his headstone, Told you I was sick!
Glad you were sensible and got proper help. Eyes are important!!!
He he he!😂. My humour has also become dark of late😂
I have a vision of the headstone, excuse the pun!😂😂
Humour even if it's the dark and wicked sort, is important and a great medicine. It makes us laugh or smile and forget ourselves for a moment or more. We can share it around with our chums... and most importantly It's free! Hurrah!
Now I'm trying to visualise the headstone, to figure where I saw it. I can see the plaque but not it's surroundings. Odd, it was fairly recently and I simply can't remember. Darn this fibro brain fog! Where have I been?🤷♀️
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Once I was diagnosed I was so confused my doctor diagnosed me then was totally dismissive of me when I asked for help in understanding it was almost just buzz off get on with it I felt like a person that causes trouble I use to work for the NHS so certainly didn’t abuse it. They need to get on board with fibromyalgia and it’s hundreds of symptoms that each and every fibromyalgia suffer don’t all have the same strange symptoms and it could potentially be another health issue and to make sure we have regular checks with medication it’s a very lonely place to be knowing people feel your a burden to society asking why you don’t work .
Tbh... My GF., looked at this and couldn't find the will, the enthusiasm or the need to answer. She said that the responses were way too long that she was put off.
Sorry 🙏
C.x
It's a lot to take in, but remember we are all on the forum for the same reason. Some need to be heard more than others, but we all need to listen! It can only be beneficial 🤗
Nothing really, as I gave up on the medical profession years ago. The final straw with the so called pain clinic - never been back to them or the doctors. I have been so much better for it, follow the greats, not the people who benefit from us keeping sick
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I have never been referred to specialists by my GP. I have been able to manage the condition most of the time, but this has been ghrough trial and error or making use of advice on this forum. So that is the limit of my levels of discussion.
I think it should be mandatory for GP to attend a short course covering Fibromyalgia.
Other: I would like to be treated like a human being and not talked down to as if I have no feelings.
I would like to be believed when I relay symptoms and for the doctors to offer some empathy and understanding.
I would like to have a two way conversation with my doctor regarding alternative medicine and to be able to discuss things openly rather than feeling I am talking nonsense and sense the frustration from the doctor because I am cautious about the amount of medication they want me to take.
Thanks Maisey
I would like Dr's to not patronise and stigmatise me about my codeine medication trying to get me to 'give' them up whilst looking at me like i'm a druggy! If I didn't need to take them to function through the day I wouldn't take them! Tried allsorts of alternatives and nothing but tramadol or codeine come close to make any difference
Yes we’ve heard this due to Opioid & High Risk Reduction guidelines - they have a duty of care to help us be as pain free as possible - our paim is real and this should not be happening. Anyone going through this should complain to the practise manager to address this
I should have. I was near to tears and very upset when she asked me would I like to halve my medication! I bet she wouldn't have said that to anyone on heart or blood pressure medication. This is my treatment of choice and a lifeline to me getting out and about as much as I can and yes I would love to not take anything at all but that's all that's keeping me moving!
My GP randomly decided to stop my pain meds. Just like that! No thought to how I would cope. Just no more prescription. I would have been properly sick stopping suddenly. I made a big fuss and he said Oh oh oh, OK. And carried on prescribing. No more talk of stopping or weaning me off or other options. Bizarre!
So many of these are important (arguably all of them) it would actually have been useful if we could have placed them in order of importance rather than pick just one. That might have shown slightly different results.
I was told by doc that she didn't like given out pain patches that doctors are too fond of prescribing them ,she would rather I have paracetamols which is useless .In the end I said I want to try them ok for her she don't live with pain and fatigue.
I have 25 years of research from being diagnosed so following most of the info from one specialist. My doctor believes everything I've shown and he has read and has copies for reference too.
90% of the band-aids given to us do not work, its the quickest way of getting rid of us in the to the hard basket, file 13.
Because I have fibromyalgia doesn't limit the physician's duty of care to investigate the possibility that some symptoms might be from other diseases. Many times I've seen physicians who are dismissive of all new symptoms I have and just respond it's the fibromyalgia.
I actually also have heart disease, diabetes 2, IC, IBS, and GORD. Lately I've been having difficulty with palpitations and breathing but the GPs don't want to refer me back to the heart specialist. It seems they get it in their heads that fibromyalgia is a catch all with no real cure and it won't kill me. So they're not worried. But the heart disease will so I need to be heard.
Well after many years I finally found one GP who referred me to Cardiology for consultation. This was only because I had been put on heart meds in the US several years ago in 2009. So it was decided to get some local testing done as all my previous tests were done in the US and the NHS couldn’t see the results of those. But no one here had ever tried to contact the US doctors for their reports. I am still going through NHS tests for heart symptoms that will continue after the Covid19 crisis passes I’m assuming. After getting the results of an angiogram they could all see why I’ve been having palpitations etc. ...And it’s not being caused by my fibromyalgia, (thank you very much, I thought sarcastically). Further tests by Cardio also show I have AF. Apparently my symptoms don’t show evident on the basic tests. On both results it took advanced testing to get a conclusive diagnoses. Maybe it would help to get there faster if my doctors would listen to my conversations without the leap to trying to pin everything on fibromyalgia. Ok more later.. hoping to survive COVID19. Will everyone PLEASE STAY HOME!
We need to have at least one GP who has an understanding of fibromyalgia at every surgery so that we cañ be referred to them knowing that they understand the complexities of the illness, so that we don't feel ignored!!!
Thankfully I have one at my surgery - he's interested in musculo skeletal conditions and he was the one that diagnosed me and has been fab - always willing to listen and never condescending
In my experience ,GPS fob you off with painkillers just to get you out the door.
Fibromyalgia. I was diagnosed with CFS in2017. By a very incompetent and o"Dangerous" expert. Am finally going to Briostil CFS Clinic next week - I live in Wales so its taken this long to get an appt.. Will let you know how it goes although am not holding my breath!!! I also have. Essential Theombosithemia - closely related symptoms. Frankly, have given up on the NHS for treatments" when will they. Introduce voluntary euthanasia. Think of the money they would save!!! All the best to all sufferers. Mary
I am very luck with my GP, she has been my GP for 18 years. She has seen me go through so much over the years. She is what GP’s should be. Compassionate and caring. It’s other people that are the problem that have no idea what Fibromyalgia is and the impact it has on your life.
none discuss anything with me Quack just bypasses/dismisses it all
Wish Drs would listen to our symptoms and believe them. Esp for us women? If only they would join the dots and twig, something real is going on, better investigate!
Fobbing folks off as stressed, depressed, anxious etc instead of understanding symptoms have a physical reason, is cruel.
It has taken me over 14 yrs to get my latest diagnosis. And it's only because I suggested testing for it. (several times!) Good ol Dr Google! The Drs hate him but seriously, it feels like the only way to get anywhere is to educate yourself and take control.
We know what we feel. We just don't understand why. What does it mean?
Now I have my diagnosis and reading further, all my weird symptoms are making perfect sense. I have been describing the problem for years, the odd blood tests and other symptoms written off as ideopathic and irrelevant, were a clue, they are part of the picture but when they fixated on me being a woman and therefore neurotic, they couldn't see it.
These odd auto immune conditions are so badly understood, the drs do need to listen and learn and work with us. When I hear sufferers talk about their conditions, I find I learn so much. They have learned through experience and researched too and it all adds up to better understanding and maybe management.
And lastly I wish drs would remember many auto immune conditions affect far more women than men. Those conditions take a long time to diagnose and one of the reasons is the sexist attitudes against women. We are not taken seriously. We are emotional and neurotic. While drs fail to diagnose, the number of those seen to be suffering from these conditions is going to be smaller than it actually is. Without diagnosis the NHS cant see the size of the problem and wont fund the research. And too many people are left suffering and it is ruining lives unnecessarily.
Please allow me to assure you that it is not just women that Dr's dismiss as being emotional and neurotic.
While more woman than men are diagnosed with many conditions Fibromyalgia and others it dose not make the condition or illness less of a chalange for male's to live with,, I'm living proof.
I came down with Fibro about 18 years ago while caring for my two parents 24/7 one with Alzhimers a the time,, I nursed them both through cancer to their death single handed.
Ray
Yes sorry about that. Just, I suppose I know men visiting GP's with their ailments are treated better than me. I don't know many men with Fibro. Fibro is sadly a ticket for the GP to treat you like you are faking. And that is going to be all sufferers.
It is also more difficult for men to express themselves,, they are not alowed to be depressed,, or anxious,, they are not alowed to complain to their mates.
Imagine how it is when you have an "Imaginary" illness and going through the hell of a life with fibro,,, it is any wonder they socialy isolate and take there own lives.
Oh heck, a man with fibro fog talking fibro nonsense? You can see why it might go wrong hey? My word finding can be dreadful, both fog and pressure ensure I can't string a sentence. The GP can roll his eyes and think stupid woman, but with a man? How does that go? It is horribly isolating.
I wasn't diagnosed for decades. I was just depressed anxious and hopeless. (apparently). Yes I felt pretty rubbish about myself. Surely if you are depressed and anxious you are savvy enough to feel it? I actually had to wonder what it was they were all seeing. Did I look crazy? Turns out my notes say it all!!! Each Dr influenced by the last. Ooh look, she's bonkers, time wasting! Better fob her off quick smart.
I will not even go to the Dr alone now,, I have a friend that is a nurse that comes with me, and understands the problems I have very well .
I am not good with confrontation and readily loose my train of thought and as for that 10 minuite rule,,, Oh please,,, it not medcine and the opinions well they are rediculous,,, I have honestly lost my faith in alopathic medcine and with justification.
I think losing faith in allopathic medicine is probably the greatest gift fibro bestows. We question. For most of us, meds don't work or worse they make us crook. We read and research and discover meds are basically poisons. Poisons to make us well? Does that really make sense? And on top of all the other poisons in the environment.
And the money made by pharmaceutical companies? It's mind boggling. All that money and we just get sicker? There is something so wrong in that. Lucky you to have someone to interpret. I just have burbly me. Even I can feel a little sorry for the GP that gets me on a bad day!
The attitude of the medical establishment is disgusting in regard to fibro.
A friends son not long qualified in alopathic medcine ,,, I asked him about fibro, thinking, just out of university he would have good ideas on what was happening and any possible advances. What I got was frustration, suspission and vitrol,, now if that is the attitude young Dr's are attaining at university then what hope is there for those suffering.
This needs to change as we the paitents are suffering at their hands,, it is not medicine but abuse of the paitents,, and even worse than some of the medicnes that are accepted in the hope of benifit.
The diagnosis of Fibro is not the end of you trouble but the begining,, you get a lable and attitude, some more constrained than others. Excercise, Anti-depressants and cloth ears while your life falls apart,,, one is left to suffer alone in silence and expected to accept it as part of Fibromyalgia. Attitudes in medcine are to slow to change and Dr's seem to stop learning anything but the Official Line when they get that bit of paper and the infalible attitude that goes with it.
Think all auto immune diseases get short shrift from GP's. Anything odd, unprovable, crazy sounding. I dread saying how I feel because I know I sound silly. Yet always, I tell the truth. Sometimes I don't mention bits coz they are getting bored and I'm embarrassed but yes, I always tell the truth. I even wish I could make up better stuff so they would take me seriously! But I can't. I mean obviously, my best friend is Dr Google, and I know loads about loads, but telling porkies? I can't and Seriously, what would be the point being treated for what I don't have?
I do wonder what is broken in Drs heads that makes em think we all lie? I hate going to the Drs. I hate horrid medicines, I hate being examined, I hate all the investigations and I want to be well. So why would I (or anyone) lie about my/their health?
Not to put EVERYTHING down to fibromyalgia and to consider there might be another reason for a new pain or health issue.
