Anyone watching now?
Any comments so far ................................
Doctor in the House - BBC 1 - Fibromyalgia Acti...
Doctor in the House - BBC 1
Written by
Mdaisy
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132 Replies
•
Now watched it.shame it don't say how many meds she's still taking.
If only it was that easy to not live in pain!
X
Hi Daddysgirl
There were positives and negative IMO where like the removal of co-codamol, NSAIDs and reduction in medications only after other aspects like B12 Vitamin D deficiency were corrected , as they make symptoms worse. You have to make symptoms better before we have a chance of making positive changes which of course most GP's refuse B12 injections unless the level dips under 200 pg/mL even though below 500 pg/mL you can have significant low B12 symptoms.
I do think diet can help and SIBO may be making symptoms worse but all these lifestyle changes are to reduce symptoms NOT a cure as the program seems to suggest. I hope charities will formulate a reply to this 
Emma 
I have a feeling how this is going to turn out. Pain gone, off meds, and now we are all going to be told by our gps to follow the same pathway. Grrrrr.
GP. ☹️☹️☹️☹️
They should do a follow up program as I'd love to know how the lady is doing now.We all have our good&bad days but to live with no meds would be a complete joke.
X
See my other post as I found her on Twitter she continues to have a reduction in symptoms but still has relapses!
You can't have found me ( I'm featured in the programme) I don't have relapses.
Hi Nicola
I wasn't saying anything against your achievements I think it is fantastic I have done this myself and ended up with a virus and gone downhill again. I will tweet you on twitter
My point was that the illness doesn't go away the symptoms are merely reduced. Many of us here just want the general public to know this and not think it cures Fibromyalgia or ME, due the stigma as you rightly stated to the DR it is not all in our heads - we are physically ill that makes affects your mental wellbeing.
Well Done for sticking to your guns here ....however, the DR made it sound like it was 'mind over matter' and to be honest that's what the general public heard I'm afraid, sorry.
Please know it wasn't meant to upset but merely to clarify that the illness still needs research
Glad to hear you are still doing well - we just wish the program stated it is incurable that's all
Emma
I've send you a private message
Absolutely true Fibro suffers can not repeat survive without meds it's a proven fact.
I'm totally off meds I pulled myself of them, I'm now dealing with Duloxtien withdraw & I still drink too much sometimes... I'm over weight, so the only way to reduce my weight is cut back totally on booze, though I was on a cocktail of meds & drugs less than 6 months ago. Though there is no doubt in my mind weed/CDB oil is good for pain it if it is cased by the CNS & it works for you. I can't handle pretty much any medication the doctors give you. So yes you can live meds free, though I just Edited by Admin my back trying to arrange the garage so I can get to my bikes so I can ride them, exercise is the key, staged exercise. Drugs just mask pain, not resolve I highly suggest to anyone in pain to look to other methods other meds.
This programme made out that simple, life style changes & coming off meds will make your symptoms better.
I have fibro. 2 years ago I through strick diet & exercise & trying on very minimal meds, I lost 10 stone. During that time my condition rapidly worsened & now I'm tanked up on meds, bed bound & fully, life long disabled.
I spent 15 years with fibro symptoms trying to fight it, trying to remain active despite the pain but in the end I couldn't control my symptoms.
There is no cure & no way of managing this illness if you have it really severely. For moderate & mild cases, yes. But not severe cases.
The most important advice that dr should of given that woman & the public was that it was a serious illness because the problem was coming from the brain rather than from her mind. It's the latter attitude that stinks of stigma & victimises those that already are suffering & need help & understanding.
I was talking on Facebook during the program and a lot were upset that it made it look that lifestyle choices are a cure rather than it may help reduce the symptoms a little!! 
Hi Daddysgirl113 ,
I agree, they should do a follow up.
What worries me about programs like that, is that it justs shows the improvement, and how it comes about, i.e. Practicing Mindfullness, and being kind to ourselves, and that leads to reducing meds, with a view to coming off them. If only it were that simple.
For some people that will work, and we must never overlook anything that might help us get out of the misery of Fibro. Sadly though, what happens to the people that it doesn't work for? I think that the program is only going to add fuel to the fire to the belief amongst certain Medical Professionals, that Fibro is all in our heads.
I must also add that I've been following all of these programmes, and every one of them ends up with the patient improving, and usually coming of their medication. I think that the patients who are on the show, are there because of this, and therefore in my opinion the program is not indicative of all the other people who suffer with the choosen condition aired on the programs.
GP. ☹️☹️
I agree, many people within the general public and some healthcare professionals will now come to the conclusion and sadly will cite lifestyle too! I do believe these things can reduce symptoms but it is NOT a cure as the program seems to suggest, but then I suppose for 'good viewing' they would steer the program in that direction as the Doctor in the House is hardly likely to say what he did was just a bandaid and that it cannot be cured therefore needs more research.
Someone tweeted " #Fibromyalgia is 'a medical mystery' says @drchatterjeeuk #doctorinthehouse. Agree more research is needed!"
Emma
Or perhaps we come off medication because we have thankfully been given good advice, followed it and it's worked xx
I think you make a good point there GP. These programs do seem to follow the same trend. And as you say, whilst I agree the solutions seem to be have benefits for these particular individuals, the programs do seem to be saying that it should therefore work for everyone.
Well . . . sort of yes. Changing to a good healthy lifestyle is surely good for anyone, but one size hardly ever fits all, especially when it comes to complex chronic illness. Yes we would all surely love to have a simple answer instead of yet more meds. And as Emma ( Mdaisy ) says, it only equals a cure if that was all the issue was in the first place. In other words the person was misdiagnosed.
Hugs, Margaret.xxx
All Fibro patients differ!! some having it say mildly, some intermediate & others being on the very worst possible diagnosis. Not to mention they could & most likely have other health issues going on along side the Fibro. It does make me mad 😡 I've been on my knees crying with the pain in the out of hours surgery begging for mercy!! If I wasn't on pain meds I would be a wreck & believe me I have tried without meds not worth the agonising aftermath
Very unsure what I learnt from that. I too would have liked to have known exactly what meds she was on, dosage etc and exactly what she is on now. That she could even do a full hours walk each evening in the first place I am sure astounded many doesn't sound like any form of ME I have heard of. It all seems a bit wishy washy to me wasn't impressed.
I can understand that forms of mindfulness/mediation works miracles for some just did the opposite for me. I can remember many years back have a supposed sleep take all about letting go of hot air balloons. It was before the time of personal MP3 players so hubby had to listen to. Within 5 minutes he would be snoring and his boss actually asked him what he had been doing as he seemed so much more relaxed, perversely the tape just irritated me and made it even more difficult to relax, horses for courses as it says. Mindfulness just doesn't do it for me. I can understand the but of holding fast to emotions and perhaps not acknowledging them as a method of coping but it is very difficult to change someone's basic nature especially if like me you were brought up from being a small child to just get on with things.
If you already eat a healthy diet, exercise as much as possible, take meds as prescribed by your GP etc and the pain and fatigue is still there I don't really know what further we can do.x
It's the same for me - a friend bought me a relaxation tape and it just sends the dog to sleep x
Mindfulness doesn't work for me either and I wonder what it is like as people talk about meditation etc ...... I personally think it can be hard to control your pain experience purely through mindfulness, you must have other combined treatments and the vitamin injections he cited too etc. Mostly we just accept our pain and learn to ignore it!
Definitely agree that it didn't seem to me like she had ME, or at least anything I recognise as ME.
Yes I agree we should be careful saying things like that as we all present differently. But to live the life she did, to be as active as she was (such as it was), to be able to walk for an hour every day no matter what, to not be needing to use any mobility aids (that I could see), AND YET to be in as much pain as she said she was and having to take as much pain medication as she was - it just didn't add up to me. Certainly didn't look anything like my ME or that of any other ME sufferer I know.
When I was still able to do that sort of walking I was not on pain meds at all and was still struggling to get a diagnosis of anything at all because no GP could see anything wrong with me at all.
Sure I'm not medically qualified and I'm certainly not saying there was nothing wrong with her, but I didn't recognise it as ME. I would suggest she is one of the many people that seem to be misdiagnosed with one or other of these chronic invisible illnesses, but that's just my opinion.xxx
I tried mindfulness, hated it. I got very uptight and agitated and cried at one point as it was doing my head in. Probably says a lot about me and my anxiety. I am glad it works for some people but it just upset me, don't know why it upset me but I felt like screaming when they suggested the raisin in the hand and exploring it in so much detail. Sorry don't mean to sound flippant but as I said I think it shows how little tolerance I have
I agree with everything thats been said...I tried hard and managed to get back to full time work with ME then I developed Fibro and am now unable to work again.....perhaps I should practice mindfulness everyday and then I will be able to walk much further and resume work again!!
Maybe Dr Sarah Myhill has a point, and nutrition and supplements play a large part in improvement of the condition.
Mdaisy• in reply to
I had tried to keep fighting we all do! I don't think some Doctors understand how hard we fight on a daily basis and the affects chronic illness can have on our mental wellbeing plus fighting to get treatment and/or diagnosis is not what someone with these symptoms needs. Fight after fight ....................Unfortunately, I fear this program may have made it worse for some of us living with Fibromyalgia maybe.
• in reply toMdaisy
Couldnt agree more, wish Id never watched it... I now feel guilty (again) that its my fault Im ill and I could do something about it if I wanted to..'played with her boys??' Dont get me wrong Im glad for their sakes..but Ive just been for a stroll with my 2 dogs..it was a struggle and now I can hardly move!!
• in reply to
Don't feel guilty, you try your best, only someone suffering from this can ever truly understand it. This programme was purely made for entertainment to fill screen time. We would all feel better if we had a doctor in the house for a week. 🤗🌻x
Mdaisy• in reply to
Hi Marypoppins1
I understand what you mean - do try not to feel this way, as stress can impact on our symptoms but most of all because it is not your fault.🌹
Treat yourself by having a pamper, do your nails , a facial anything to give you some me time! 💄
Keep strong
Emma 😘
• in reply toMdaisy
I have just had a conversation about the exact same thing. " Fighting " it seems that we have to fight for everything every day of our lives. Fight to be heard, to be understood, to be seen, to be diagnosed, for doctors that believe us, for medications that work, we fight for refferals to hospitals, we have to fight for simple tests. Then we have to fight just to get a fit note, then the esa system, then tribunals because we get zero points which then creates the ultimate battle with the system and within our selves as we have to conjour up energy we dont have in order to fight for what should have been granted in the first place.
Its a never ending fight or flight scenario and no wonder we are all burnt out.
Thanks Emma, I have it recorded and will watch it tomorrow x
Do let us know your thoughts Ken
Hi Emma
I am still in two minds about the programme? But over all I thought it was quite poor really. I am not referring to the way he flipped-flopped from the possibilities to being all in your head or it may be real etc. I am referring to what he missed in testing and medical theories. No mention of secondary complaints, CNS or substance P etc. A great deal was missed. I also think to ensure validity of what was achieved, a follow up should ensue with 12 months to check out the current conditions of the patients. I am taking it at face value, just like everything else on the telly lol!
All my hopes and dreams for you
Ken x
I was left quite angry and confused. I felt it made a mockery of us and forced the point it's all in our heads.
Exactly 😂😂😂
Hi ya
Yes, he did make comments to that effect then backtracked a little, but unfortunately general public would have picked up on that and once said it is harder to then explain as people have made up their own opinions. What I did find disgusting and was so many people on twitter saying Two larger ladies carrying all that weight around no wonder they are fatigued (<<<<this is the nice version)
Such ignorance of people - I was size 6-8 (yes I know this is far to skinny ?due to bowel issues) before I got Fibro and started Lyrica. A combination of the medication and not being able to exercise due to pain/fatigue plus lack of proactive treatment has led most of us to put on weight I would say!
I honestly hope this hasn't made our fight for awareness worse
Emma
How many thousands of people have Fibro/ME. It surely can't be in all our heads...we can't all be hyprocondriacts Lol!!! X
lozi , 2.5million known diagnosis in the UK alone ! If it's 'all in our heads' then it's time someone did research into how to treat Hypochondria ! lol 😁😁
I've just watched it and first thing that came to me as program started her bending down into the cupboard then her walking for a hour I think in some ways this program will cause upset to a few people as we can't get a GP 24/7 we get 5-10 mins if we're lucky also at the end her walking PAIN FREE making it look like it is all in our head it's a confusing outlook on fibromyalgia this was just my opinion watching it at 4am after bad day yesterday
Hugs bam xx
Hi ya
I am so glad she challenged him on that but fear once said never forgotten by the viewers watching as they would make the assumption 'it is all in our heads' too. In this respect, unfortunately we may find this program puts us back in our fight for awareness, treatment and understanding IMO.
I agree that GP's are underfunded, find it hard to have time to get a work/life balance, difficult to keep up-to-date on all conditions plus have less and less time.
I do really sympathise with them as it was hard when I was a staff nurse and that is 10 years ago now. As we all know this is a national and political story across the whole of the UK, the NHS is suffering financial cuts and this is slowly but surely filtering down to the patients unfortunately!!
Emma
Remember it's the BBC!!!!! Government run so just like the news they hide the truth and try getting in people's heads.
#boycottthebbc
BBC !! just what I expected.This will " help" Tories get a few more thousand people that suffer from conditions off PIP and ESA. x
Hi Mr-Jingles
You obviously feel that this was a real agenda behind this. You are right it may unfortunately change perceptions of Fibromyagia that could filter into the assessments maybe. I sincerely hope not !
IMO I do feel he show empathy and really is trying to steer medicine in a different direction to more proactive, preventative medicine. I personally feel this comes across loud and clear but the program desire to have positive endings in which people are cured for good viewing is down to the editor and production team I imagine.
Emma
• in reply tomr-jingles
Thats why we all have to do something together, We have to FIGHT, I know its hard to do when suffering with this, but things are never going to change for us unless we force that change.
Absolutely!! We know our bodies and our limitations. Chronic pain isn't something we want to live with, and we aren't mad.. but those who don't understand it, think it's in our head... Blah!! 😋🤗xxx hugs
Hi Beachgirl47
I am so hoping that the general public and some health professionals without knowledge of Fibromylgia don't just centre on this - If that is the one thing they believe the program is saying we have a big fight on our hands ........
I agree... Things have changed a lot over the 17 years I've had it, and I just want a fair chance for all of us. Being understood is a big part in our managing to get through each day. I've had great physicians and then some who were crazed by writing a script for every drug .... I minimized a lot of the meds over the years, because of weight gain and so expensive, not to mention they were trial& error... It's a long haul but with this wonderful forum of peeps.. we are great together 😊🤗xxxx have a blessed day 🌷🌷🌼🌼
Hi ya
I agree that they was probably an agenda behind this even id it was to purely make the Doctor look very proactive to push his career and book etc. Call me a little cynical!
I suppose for 'good viewing' they would steer the program in that direction as the Doctor in the House is hardly likely to say what he did was just a bandaid and that it cannot be cured therefore needs more research.
Someone tweeted " #Fibromyalgia is 'a medical mystery' says @drchatterjeeuk #doctorinthehouse. Agree more research is needed!"
I think we all agree with this statement!
Emma
Have just a few words to say,Total Mockery .
I haven't seen it yet. I will watch it later and come back with my opinion. By what you all are saying it sounds interesting., for want of a better word .
🤗 hugs
Jane x
Hi
Watched this morning
I don't have Fibro but have PMR
Agree with what others are saying as for lady who had two jobs how did she manage to do all the other things Gym Yoga not enough hours in day.
Most of us don't even get all test for bloods and Cortisol due to cost
I do know with my Autoimmune illnesses that some foods do make me feel worse .
I try to avoid these mainly bread but on a day when I am so fatigued its a effort to do anything unless I eat bread I would not eat at all .
The answer is going back to the old system when you saw the same GP they had time to talk to you knew your history and cared about their patients .
Not saying it would solve any problems but would make us feel if we where being listened too.
That all that happened in the programme GP cared and he had resources and time to do tests .
GPs have fads prescribed what is in fashion at the time and what is cheapest not what is needed ,
Hope I have not offended anyone I am just stating my opinion
The medical field is a business now. It's about making money and fads or in fashion is a good way to put it. No offense should be taken. Truth is what us being hidden. Good point 🌹 Rose...xxx😊🤗
Hi ya
I think the fact he listened and conducted tests we wouldn't normally be offered (Microbiome) is commendable. If only all GP's did the same!
I agree that GP's are underfunded, find it hard to have time to get a work/life balance, difficult to keep up-to-date on all conditions plus have less and less time.
I do really sympathise with them as it was hard when I was a staff nurse and that is 10 years ago now. As we all know this is a national and political story across the whole of the UK, the NHS is suffering financial cuts and this is slowly but surely filtering down to the patients unfortunately!!
Emma
Hi
Totally agree
The onus is on us to keep healthy
Hence first question is what can we do for you today or what do you want to achieve from appointment today .
Admire all medical professionals for doing the job they do in difficult circumstances and indeed under funded and under stress everyday
Morning everyone I never even watched the programme and I predicted the outcome on a post somebody wrote about the programme coming on. This very busy Dr is on youtube, twitter, facebook, quite a few newspaper he has a a book deal I think with penquin and I predict he will probably have a dvd out for christmas 😜If it was that easy he alone could cure the country. I laugh at his mindfulness when he has just left many sufferers feeling bad and confused. Like all these programmes they are all for entertainment value and his goal is to become a household name getting his name into as many projects as possible his main aim is to have lots of this 💷. 🌻X
Mdaisy• in reply to
Hi mmc68
Think you may be right about merchandise coming out for Christmas.... I do believe he is trying to work towards proactive medicine rather than reactive
Just wish he had stated it is to reduce symptoms, not a cure and research is needed. I think both the ME & Fibro community would have been happier rather than leaving viewers to make their own minds - probably judgement, ignorant opinion based on little factual content.
I am concerned that we will get the whole ' saw this on Doctor in the House and the lady tried this and she is better' line from people who may even be trying to help but it will undoubtedly make us feel ........arhhhhh ..... 😡
Take Care
Emma 😌
Watched the episode, I was hoping that their would be up to date info on fms and treatments etc. But it just came across that we all need to stop eating gluten, stop meds, walk for an hour a day, relax,and tell ourselves it's not how we feel.
I didn't hear of how the lady was diagnosed and apart from pain and fatigue no discussion of other symtoms such as stiffness, sleep deprivation,spasms,migraines,IBS, visual issues,urinary issues, mobility difficulties of walking and moving aroynd, clumsiness,rls,tremors,sweating, temp and weather impacts,viral infections, falls,impact of hypermobility,sexual dysfunction, respiratory impacts,swollen joints and yes the dreaded depression word.
Did the doctor see her on her worst day or in flare up; I only saw tiredness/fatigue. How is she months later? there was no discussion of what the pain felt like etc. Saying I have pain is a vague descriptor and meaning.
No mention of Fms being a central nervous condition or chemical P spinal dysfunction in US tbe Mayo clinic is very progressive brain scans that identify Fms. What's are all the clinical trials for.Why are there specialsist treatment centres in London and Manchester if it's just a case of vitamin deficiency and Infection of the gut and gluten issues.
I have had gluten intolerance testing it came back negative. it's not recommended by nhs to undertake a gluten free diet unless your gluten intolerant.
Concerned that it portrayed Fms and ME as mind over matter.
If my Gp watched and follows this ethos my relationship will become more difficult as he is already of the mind FMS doesn't really exist.
Hi Lou59
I completely agree plus no mention that Fibromyalgia can be secondary to a primary condition and that the stressor if this on the body can make it more complex to reduce symptoms
Plus the whole train analogy and 'labels' seemed to make it sound like it a bunch of symptoms with this associated name especially as he said I believe she has physical symptoms but never said Fibromyalgia is real affecting over 3 million in the UK
He didn't mention as you say any research that it is considered a CNS disorder or the elevated/depleted neurotransmitters like substance P and how the brain is processing the pain different to healthy people,
I share your concerns that this may hinder our experience of healthcare making it worse in regards to stigma unless you see a specialist in Fibro.
It's just getting the first line GP or Rheumatologist to realise this referral might be the way forward and the money in the pot to go that route,
Hope you have had a good day
Emma 😌
Very good points lou59 . I totally agree with the points about other symptoms.
My main condition is ME and I also have fibro (amongst other things). Like you I objected strongly to him whittling down both conditions to just pain and fatigue. Certainly ME has way more symptoms than that and I believe, as you say, fibro does too. What about all the gastric and neurological issues that accompany ME.
And most particularly what about the PEM (post exertional malaise). that is a cardinal symptom of ME so if you don't have PEM then you don't have ME. How on earth could she do all that walking every day without PEM kicking in. If she has ME she should be bedridden on a regular basis if she keeps pushing herself like that. PEM always has a delay of 24-48 hours and it means any or all of your symptoms worsen not just fatigue. In fact it may not even make fatigue worse, just other things.
I know I have seen comments from her on some of the ME Facebook forums insisting that she does still have ME, but I'm not convinced. I'm sure she has a diagnosis of it, but in my opinion, I would say it is a misdiagnosis.
Certainly the poor lady is unwell and I can sort of see how fibro and ME were part of the list of possibilities but to me it looks more like her GP simply hasn't done enough tests to rule out all other possibilities because she doesn't fit any illness pattern that I recognise. I really didn't see any evidence of PEM.
And as with fibro there is loads of great research going on into ME around the world at the minute. Ron Davis, Fluge and Mella in Norway, Griffiths University in Australia, Will de Vega in Canada, Robert Naviaux - just a few of them. Barely a mention of them. Just a quick mention of mitochondrial issues. Yet that research into the mitochondria for ME has been around for at least a decade. Dr Sarah Myhill has been talking about it for about that long that I know of. It's hardly new, even in research terms.
All in all I think there were huge bits of much more important information missing from the programme. And fair enough they only had an hour but to put across a simple fix and all's well with the world solution for such complex issues like that gives completely the wrong impression.
To me about the only good thing that the program highlighted is that GPs are not given the proper resources to diagnose us properly in the first place.
Hugs to all, Margaret.xxx
I couldn't watch it as I knew it would make me mad, you only ever see what they want you to see.
Hi ya
Thanks for your reply
I think you're so right and the lack of facts to leave general public to make up their own minds.unhelpful.
The lifestyle changes do help and there definitely were positives but if needed to state it is real and we need research to ensure the correct message got to those with either no or little knowledge of Fibro. Unfortunately, I feel those who lack awareness could make judgements based on how it was portrayed.
All the best
Emma
I think the program has set back fibromyalgia education by at least 10 years! Very sad. I for one have tried his ideas and yet I still have pain stiffness and all the other symptoms. It came across yet again as if it's all in our head and mind over matter will cure it. In my opinion he has done far far more bad than good for really helping. I just wish we could have a voice tell him what he's done ☹️
Thank You for your comment
I have sent the following Tweet below - hoping for a reply OR that Fibromylgia & ME charities will respond too!
+ & - to the coverage #doctorinthehouse
@drchatterjeeuk RE: #Fibromyalgia & #MECFS Are you willing to provide an email to discuss this pls?
I'll keep you posted
Obviously it's hard to determine exactly how Nicola was really feeling but I think the programme was presented in a way to give the impression she was practically cured. Near the end the narrator said that she was "free from the pain of fibromyalgia", however she was still taking some medication as it was said the doctor "reduced her dependency on medication" not took it away all together. I found an article from the Mail on line in which Nicola confirmed the meds she was initially taking “…eight co-codamol tablets, four naproxen and two 300mg pregabalin tablets, as well as pills for my thyroid”. Now she just takes “..co-codamol once a day and naproxen occasionally.”
I was on very similar medication at one time and also weened myself off most of it as I felt that it was doing me more harm than good. I was concerned that every time I went the doctors with another symptom he was just saying ok here's another tablet for it. As a result my medication intake gradually increased but I wasn’t feeling that much better.
You have to remember as well that she had other ailments, thyroid, sciatica, ME and it was also confirmed that she had SIBO, an overgrowth of bacteria in the small part of the bowel that can cause bloating and contributes to chronic fatigue. The changes she made may have had more effect on any one of these conditions and so she would feel an improvement.
Also anyone who changes their diet from eating crap to healthier alternatives will feel better there is no doubt. In addition if you are feeling low or whatever things like mindfulness can improve your mind set so will also contribute to your overall feeling of wellbeing. I am not minimising the effect these things can have as I have taken on similar changes myself and have seen some improvement however this will not work for everyone. The programme was one woman’s story that had the benefit of the complete attention and dedication of one GP (plus the resource of the BBC) whereas most of us have to settle for a succession of quick 10 minute appointments often with a different doctor.
We all know fibro affects people in different ways and that treatments that work for one will have no benefit for another. I feel last night’s programme may have had good intentions and did offer some useful information on ways to improve your lifestyle. However it was a very simple approach to a complex and mysterious condition and my concern is that it has re-iterated the notion in a lot of people’s heads that all it takes is to change your diet, take a few supplements and do some breathing exercises and you will be cured.
Hi ya,
Pretty much sums it all up. Thanks for your reply
If only like the train we could shrug off the carriages that easy.....huh?!?!
Emma
Very Very disappointed.............we are not kind to ourselves...... Wow ! The Doctor kind of washed over it in the end, possibly made her syptoms slightly better, maybe her condition was improved, maybe it wasn't. The good thing, I will take from it, is that I shall ask my Doctor for a food intolerance test. if that's possible....maybe it will shed some light on it . Over all, I feel such a sense of ant-climax. Crazy I know but I was hoping for more.
I think elimination diet can help but it takes months to work properly.
If it was pretty much in the gut and diet people would feel healed.
Again, it's more complicated.
I didn't see the doctor say anything about supplements. Maybe I missed that.
Hi spider555
I have found more research lately about SIBO and yeast like Candida and did believe it can reduce symptoms alongside certain medications, supplements and a combined approach. However, as he wants to show lifestyle changes work I feel the agenda of the program was to solely focus on that,
I had a period of 3 years of optimum health but still living with Fibro, needing siestas, combined approach etc and then caught a virus and it all came crashing down.
Sleep well
Emma
Yes that's what I feel Emma. If you look at the whole series it's obvious he is trying to put across the benefits of lifestyle changes to improve our health and taking control of our own health ourselves in that respect.
Obviously that is not a bad thing for a number of reasons. It can make us feel better, it can improve some conditions and it can in a way clear the field a bit so the doctor can maybe take certain symptoms of the playing field when looking for what to test for. But that in no way equals a cure for any condition unless that is all your problem was in the first place.xx
Hi m1keym005e
Thank You for your reply
The discussion about SIBO was one positive to come out of the program and hopefully these tests will be made available if only to reduce symptoms so we can have a bit better quality of life.🍴
We need to keep fighting for research and for us not to be considered 'a waste basket diagnosis' any more! 🗑
We want answers!
Emma
I have recorded it to watch later today, it doesn't sound as though it really came up with anything to help us, just the lady on the program! As everyone says, if they do a follow up program a year later and she's still feeling well it would carry more weight.
I watched the program last night, and found some of it interesting and helpful. Like the lady on the program I have underactive thyroid, an ongoing back problem, fibromyalgia, and also have a diagnosis of low B12 ( pernicious anemia). After a private blood test by an endocrinologist my VitD was also found to be low. So I do think that giving her the B12 and other vitamin injections will have helped. It helped me to get my B12 levels boosted by injections. I also wonder if I may have the digestive issues that were spoken about, and have considered going to see a nutritionist myself.
At the moment I am on a very limited amount of pain relief, my own choice. If I take everything at the start of this condition, there will be nothing to use later on when it gets more painful.
When I can, I go to a Yoga class, where we practice meditation as well as gentle stretching exercises. This helps me a lot, I always sleep better after a Yoga class. Walking isn't good now, my balance and gait aren't what they were, and I have to wear supports in my shoes due to a dropped metatarsal.
I go to a chiropractor for my back, I don't remember this ladies back pain being talked about, or solved?
I did feel sorry for her, especially when she was under pressure in front of the cameras. I wouldn't want anyone to film me, especially on a bad day.
I have enjoyed reading everyone else's comments on the program. Wouldn't it be a wonderful world if all our doctors had that much time dedicated to helping us?
MariLiz 🤗🤗😁
Hi I watched the programme on iPlayer this morning. It was frustrating in its simplistic view. However I have had an under active thyroid as well as fibromyalgia for more than 20 years and I have recently found some relief from pain supplementing with B12, calcium with vit K, vit D with fish oils, selenium, and magnesium. This is advocated by many in the thyroid community on Health Unlocked. My sleep has improved wonderfully, apparently this is likely to be the vit D. I noticed that the doctor took this approach too.
He didn't elaborate on Nicola's under active thyroid either. Many believe that this is very strongly connected to fibromyalgia. The NHS fails many with this problem.
In the thyroid community many advocate a gluten free diet as it greatly reduces inflammation as the doctor stated. I think I shall try this next. NHS gluten testing is designed to spot celiac disease which is not the same as sensitivity to gluten. It's an autoimmune condition.
I was glad that there was an emotional discussion about whether "it was all in her mind". I've suffered from being referred to psychologists who were no help at all of course because as Nicola said it's not in her mind but in her body.
Do any of you follow the Health Rising blog from America? I find that fascinating and it is full of the progress being made in the scientific study of FM and ME. Seems there might be light at the end of the tunnel after all.
• in reply toBertwills
Hi 🙂 I checked out Health Rising. They don't have an option for a newsletter, do they?
I created an alert at Google scholar on the words 'fybromyalgia' and 'joint hypermobility' so that I receive the latest links to published research papers. Very good as well.
Regards, Yvonne
Mdaisy• in reply to
The Mighty Blog is good reading too and you can customise your news feed 😌
• in reply toBertwills
Good point about the difference between gluten inflammation and gluten intolerance.
I hadn't heard of health rising before, but I'm off to have a look! Thank you for sharing.
Mdaisy• in reply to
You should find Health Rising very interesting 😌
Hi Bertwills
I noticed the Thyroid connection was not mentioned. There does seem to be many people with both conditions but whether it is either a primary of secondary of Thyroid issue remains unknown.
It's a bit like the chicken and the egg. Did the Fibro cause the imbalance due to problems with the HPA Axis or did the stress of hypothyroidism cause the Fibro symptoms. 🐣 IMO anyway
I know some believe there to be a strong connection however research has never been peer reviewed to confirm these findings. They are separate conditions occurring alongside each other, so more research is needed. I also fully support the need for comprehensive Thyroid testing to help timely diagnosis and to try to minimise misdiagnosis too.
I am also glad she did strongly state it was her physical illness causing problems with her mental wellbeing rather than the other way around.
I read Health Rising and only today see a research about Lactate, in relation to both Fibro & ME that looks interesting. I need to read it in full 😌
Best Wishes
Emma
When was it on and which channel
Regards pippa19
Haven't watched it yet, but from the comments on here it is what I expected would happen, I can see a lot of shouting at the tv tonight once I get round to watching it (feel sorry for my OH & the cat) I will make sure i have no objects that are throw-able.
I think it was a very basic look at fibromyalgia. They can only do so much in the programme. It made the illness look less severe as it can be. I wish I could walk for an hour!
It's good to be getting off all the meds, but I'm sure the pharmaceutical industry must hate Dr Chattergee: they probably have a contract out on him!
She might have been just feeling off quite a few of the meds. Anyone could feel better when 17 drugs or whatever are reduced.
Somehow I just knew it would be do this, that and the other and Hey Presto!
Mindfulness, for me, was awful. Our local pain clinic ran a seven week course of half-day sessions once a week and it really made me worse. All it did was break down the barrier that I've sent ages erecting between my brain and the pain. I can cope with the barrier there, without it I am reduced to screaming in pain.
Mindfulness doesn't seem to help me either - again works for some but not others but cautiously say only up to a point
I watched it last night and wasn't impressed, everyone is affected differently with fibro and some much more then others, this lady was lucky she could bend down to get bits out of bottom drawers and could walk an hour a day, I. Know a lot of us would really struggle with that, I certainly couldn't walk for an hour Or even half an hour, I'm glad changing her diet as made her pain free and just wish that was all I needed to do to be pain free, I've tried a lot of things and nothing has helped to be pain free xx
Hi Dionne0208
Thank You for your reply
I think the fact he identified the SIBO and the diet helped this stressor on the body did help decrease symptoms. After reading other comments on social media, people like yourself have said they have tried elimination diet among other things and had tests which show no gut issues.
Dr in the house says 'It's a bit of a medical mystery ' then let's put more money into finding out as much as we can .....surely this is better than simply trying to control symptoms long term. Lifestyle changes can help but we need answers.
Best Wishes
Emma
i was very angry after the programme they made it seem as though fibro has a magic cure but it is a very personal illness we are not all the same people struggle enough being believed at health assesments for pip and esa and also by family and friends the doctor will be loved by goverment but we have to suffer pain constantly and other symptoms and other health problems the doctor and programme makers have made things worse for us and this saddens me but we have to struggle on my gp is very good and takes time for you he does not just dish pills out as the doctor implied.
Well what can i say ,iv now watched the programme again on I player as was half asleep last night.
And guess what ,iv taken the doctors advice.Iv now had some gluten free bread and walked for a hour & guess what,I feel so good ,i'm binning my meds.lol.
If only it was that easy.
Can someone please tell that bloody doctor he ain't Jesus!!!
Don't he realize how much crap we get off people already ,with people not believing us!!!
Sorry rant over.
X
Rant is justified ......best to get it of your chest
All very depressing. Having recently been moved from a diagnosis of RA to fibro the difference is telling. People couldn't do enough for me and treated me with sympathy when I had RA that has now evaporated. It must be my fault I'm just lazy and neurotic and have been playing people along. I just enjoy being ill and if I just changed my diet and exercised more it would go away because it's in my head. I have been trying to show my family the research and my rheumatologist said it was a neurological condition but this programme has undermined everything again.
Hi Helzbells
So sad to hear that the stigma has caused this and that people make judgements that you deserve sympathy if the illness has a diagnostic marker but if there believe it to be mental you are treated differently. I'm sorry you are experiencing issues convincing your family too, this must be incredibly hard (I've been there too)
I suppose all you need to keep trying to show them information and explain that media & programs like this can provide a distorted view
Emma
Obviously it was quite condensed and filmed over several weeks. I don't think the doctor was implying it was all in her head or it was just diet. As for medication, the poor woman needed a review!
Like BertWills said there is a difference between known foods the cause inflammation and food intolerance testing. You can get certain foods that are anti-inflammatory! We are what we eat after all, body inflammation has been said to cause a lot of health issues. Anything you can do to help your body & brain along is a step in the right direction, not a cure as such, which is what I took from the doctor in this programme.
Usually I'm quite a negative person but
I thought it useful! I would love to see follow ups by the doctor though...maybe online.
I think the household went on the diet as well so there would be no temptations in the house for the lady and no family members eating very tempting junk foods in front of her.
Hi I watched it and wasn't impressed it made out we all lazy and it in our heads couldn't walk for 5 min
s let a lone a hour didn't tell true story of fibro in my opinion x
X
Took a very simple approach to a very complex condition, feel it misled and ignored many symptoms. Badly educated people yet again. Big disappointment
I don't have fibromyalgia but I do have post concussion syndrome, my main symptoms being chronic fatigue, chronic headaches and neck pain. I've been watching this series in the hope of finding answers or strategies to help me recover. One thing that is missing is information on how on earth WE can access the same level of medical care and intervention! 10mins with. GP who shrugs and sends you on your way just isn't adequate.
I will catch up with it tomorrow thanks for sharing
We fibromites have a hard enough time explaining how we are or what we have or that we are not depressed without programmes like this making our situation worse. 2 steps forward and 4 back. Now I feel anyone who doesn't have fibro will think this is the answer and we should get better and get back to work and stop being lazy!!!. Walking for an hour a day? I wish! Also I noticed how clean her house was Mine used to look like that but now I struggle just to do the basics and Im ashamed and sad that my life has changed so much. I do wonder if she was misdiagnosed or maybe her fatigue was down to thyroid issues or vitamin deficiencies. Wouldn't it be a perfect world if all doctors treated us like that doing tests and listening to symptoms instead of shrugging shoulders and "here have some anti depressants".
I think this programme has done more harm than good Im sorry to say.
Hi Hebden
I noticed the tidy, clean house too- mine was like that too before Fibro. A cleaning team may have been involved as part of agreeing to be filmed maybe?!
I agree, that viewers could make this assumption as the facts weren't spelt out to the viewer. Hoping it won't have an impact but expect it will despite her protests that it is the physical affecting her mental wellbeing as the wording he used cannot be taken back once said. People make up their minds there and then.
You're also right about the inadequate testing of Thyroid here in the UK whereby people are misdiagnosed with Fibromyalgia only to find it's a Thyroid issue that is treatable but they are left battling the system to get their true diagnosis
We all need to support and campaign for better testing and more research for the over 3million people diagnosed with Fibro (with a percentage that could be misdiagnosed as could be Thyroid or in fact Lyme Disease another with poor testing in UK)
Unfortunately, with the financial state of the NHS I cannot see this whole mess getting better any time soon.....
Positives to the program was definitely the discussion of Microbiome and SIBO as some do have this and it will make symptoms worse. Helping this as she did can therefore reduce symptoms if you have the opportunity to have tests that is!
All the best
Emma
I too have been down this road. Almost identical. to you Mydexter....diagnosed with RA, strong meds, blood tests and regular checkups then a year later told not RA but fibro and all in head, left to get on with it. Offered CBT and discharged back to GP who now puts everything down to fibro (even if it isn't) and if they've watched this programme I can see the anti depressants being offered yet again.
It's interesting that they mentioned she had a thyroid problem. Generally doctors know very little about treating thyroid disease adequately and guidelines are incorrect stressing dosing based on TSH testing which is wrong and can leave sufferers horribly undermedicated. I wonder if her thyroid medication was increased or if she was switched to natural dedicated thyroid or even had T3 added some of her fibro and ME symptoms would improve.
I also think the B12 issue was underplayed. Low B12 can cause all sorts of awful symptoms which can mimic fibro and ME. Her B12 was low and she was given injections - this will have made a huge difference in improving symptoms as long as she was given enough loading doses and not just the 1 injection.
I watched this programme and was so angry. Fibromyalgia is a neurological condition with no known cure. What the lady on the programme seemed to be suffering from was Chronic Fatigue Syndrome which has been known to go away sometimes. I think this has set back Fibromyalgia patients no end. After fighting for years to get believed this programme has suggested that it can be cured. I wish they would get their facts right before showing these types of programmes. I hope the BBC was put right about this.
Hi Mydexter
I agree, all about we already knew. However, some may not have known about the Microbiome issues with SIBO - so I do hope this has helped someone with Fibro and symptoms control somewhere in the country
Emma
I've given this program some thought and overall this is my opinion.
My main condition is ME and I also have fibro (amongst other things). Like many I objected strongly to him whittling down both conditions to just pain and fatigue. Certainly ME has way more symptoms than that and I believe fibro does too. What about all the gastric and neurological issues that accompany ME.
And most particularly what about the PEM (post exertional malaise). That is a cardinal symptom of ME so if you don't have PEM then you don't have ME. How on earth could she do all that walking every day without PEM kicking in. If she has ME she should be bedridden on a regular basis if she keeps pushing herself like that. PEM always has a delay of 24-48 hours and it means any or all of your symptoms worsen not just fatigue. In fact it may not even make fatigue worse, just other things.
I know I have seen comments from her on some of the ME Facebook forums insisting that she does still have ME, but I'm not convinced. I'm sure she has a diagnosis of it, but in my opinion, I would say it is a misdiagnosis.
Certainly the poor lady is unwell and I can sort of see how fibro and ME were part of the list of possibilities but to me it looks more like her GP simply hasn't done enough tests to rule out all other possibilities because she doesn't fit any illness pattern that I recognise. I really didn't see any evidence of PEM.
And as with fibro there is loads of great research going on into ME around the world at the minute. Ron Davis, Fluge and Mella in Norway, Griffiths University in Australia, Will de Vega in Canada, Robert Naviaux - just a few of them. Barely a mention of them. Just a quick mention of mitochondrial issues. Yet that research into the mitochondria for ME has been around for at least a decade. Dr Sarah Myhill has been talking about it for about that long that I know of. It's hardly new, even in research terms.
All in all I think there were huge bits of much more important information missing from the programme. And fair enough they only had an hour but to put across a simple fix and all's well with the world solution for such complex issues like that gives completely the wrong impression.
To me about the only good thing that the program highlighted is that GPs are not given the proper resources to diagnose us properly in the first place.
Gentle hugs to all, Margaret. xxx
• in reply toukmsmi4
...she was crashed out on the sofa midday, is that not PEM? She also didn't want the doctor to come around, she was having a bad time.
Lets remember its tv, its editted over at least 6 weeks, maybe even more. This illness does effect us all differently.
ukmsmi4• in reply to
No that's not necessarily PEM. But my point was that PEM means you can't keep doing that same strenuous thing every day, not if it's something that makes you crash. Your body just doesn't let you. That's the nature of it.
Yes I'm well aware that ME like many other illnesses affects people differently. And I didn't say she wasn't having a bad time, if you notice I did say she is clearly ill with something, just that it doesn't ring true as ME to me. Maybe it's CFS, maybe it's fibro, maybe it's the SIBO or maybe something else altogether.
• in reply toukmsmi4
True, I get the feeling some doctors will dump you in the Cfs/Me/fm group instead of extensive testing.
ukmsmi4• in reply to
Yes exactly, that's what I feel.
Of course I'm not a doctor and I don't know this lady, only what was portrayed on the telly so all I'm only going on was what was we saw. So naturally I may well be wrong, Maybe it is ME, it just didn't look like it to me. I felt that it didn't appear to be the best fit.
I always have an open mind with regard to my own diagnosis too. Currently, all other things have been ruled out for me so far. Looking at the symptom lists for the remaining things that aren't easy to diagnose then for me, ICC definition ME is the best fit. I have 98% of the symptoms for that, whereas I have less of the symptoms for other conditions like Fibro, Lyme, thyroid etc.
But until we have a conclusive test for all these things, until the NHS does full and robust testing for things like lyme, thyroid, B12 levels, VitD levels etc then we are never really going to know for sure exactly what we have. As you say I feel many people are dumped in the wrong basket simply because the symptoms they happen to be displaying in that 10 minute slot of assessment happen to best fit one or other of the possible conditions.
Mean time we all just have to keep battling on as best we can, trying to get our docs to see the full picture and hope they can see what they should be testing for.
I wish all of us well with whatever it is we turn out to really have.xxx
ukmsmi4• in reply to
By the way Hidden , I must apologise if I came across a bit snotty in my reply. I'm somewhat stressed at the minute as I'm housebound and my husband and carer is in hospital having a knee replacement.
Unfortunately all the people who have kindly offered help don't seem to be around at the times I need them most so it's all a bit of a nightmare at the minute. And as you can imagine the slightest things get blown out of proportion at times like this.
Not an excuse for rudeness I know, so apologies for that.xx
• in reply toukmsmi4
Don't worry @ukmsmi4 I didn't read as rude at all. X
Totally understand being overwhelmed by situations though. Hope your husband is fit and well soon and you get some support too x
I think the doctor in this programme has "God like syndrome".... Basically he thinks (of course, misguided) that he can "heal" everyone!
I watched the programme with great interest and was looking for any positives. I'm happy for the lady that she is experiencing a reduction in symptoms, however, the point I wish to make is that we are not all 'text book' fibromyalgia and many of us DO have other diagnoses alongside fibro. Overall, Irrespective of tests, theories, or outcomes based on someone else's experience, I only wish to be treated as an individual and not have my symptoms overlooked or discredited. For me personally, mindfulness makes me worse, I cannot tolerate it though I accept that for many it may help. I've tried lots of things and my experience is that fibro is pretty darn resistant to treatment.
I only watched the programme last night as I recorded it. I didn't like the point when he was going down the 'all in your head route'. I didn't agree with much of it to be honest. I've been diagnosed with ME & Fibromyalgia for 17 years now. Over the years I've been unemployed, employed & self employed to try & keep my head above water & have a life that didn't consist of staring at 4 walls. Even now I can't work for an employer, I suffer terribly for days - weeks after I do something one day. I tried self employment but just couldn't cope with that & ended up having to employ someone to do all my work. I certainly couldn't walk for an hour per day. But everyone has it to a differing level so you can't really compare that either.
Regards meds, I've tried everything from Morphine & Fentanyl (although they were prescribed for other health problems) to taking nothing. Taking nothing just didn't work at all but having tried it, I feel I can comment on the fact that just stopping someones meds is ridiculous. I've finally found a good GP who has prescribed B12 injections for fatigue, even they have made no difference whatsoever though.
The only thing I was interested in was the bowel bacteria. Will they test for that on the NHS?
Mdaisy• in reply to
Million dollar question ..... I don't know if approached whether they would test Microbiome without research to suggest it may worsen symptoms as an independent finding alongside Fibro/ME or whether it needs to be indicated in another way. Medics need rationales to conduct tests and spend NHS funds - if GP thinks it has no bearing on the situation I am guessing probably highly unlikely - but it could be a positive from the show if it filters down to others
I thought he seemed to blame her and her lifestyle for the condition. I worry people will come away and think that it's curable / in our heads.
If I change my routine and go somewhere for a few hours like an event etc the next few days it take me ages to recover and it doesn't matter how much sleep etc I get .
No, I'm busy looking at women on Flickr!
All these things suggested on Dr in a The house can work short term The sibo thing my GP gave me a lecture about antibiotics so it was a no there even though I had liver disease for years before My transplant so was likely to have an overgrowth of bacteria in the small intestine! I have been referred to the integrated hospital in great ormond street and am having homeopathic treatment physio and graduated excercise It's early days but will inform of future outcome Herbalists will treat sibo but they are pricey No two fibromyalgia patients are the same so I wish Doctors would stop lumping us all together If you find one that's done any real research then hang on to them Most can't be bothered ! To everyone out there suffering Keep trying new things Be prepared for short bursts of relief Then go on to the next thing Diet some excercise some supplements help a bit Summer is better than winter See but f there is a hot tub spa at your local leisure centre save up for a massage Have hot baths with Himalayan sea salt Be careful if they offer you Gabapentin mine stopped working so the GP kept upping the dose the come down was horrendous and ultimately it's made my fibro worse! Don't be scared to tell it like it is and good luck 😉 in finding something that works a bit for you 👍😘🙏
I think her improvement came from giving up a lot of the meds she was rattling around with at the beginning. I'm amazed she could stand up, let alone walk.
Diet is important in every bodies life, but it's not a wonder solution with fibro as this programme seemed to suggest. As often it does online too. I hated how it seemed to suggest massive improvement in her with no real medical intervention, which if true I can only determine her case was mild in the first place.
What the doctor should of referred her onto to was a neurologist, but he didn't seemed to think of the obvious, or see that such a constellation of symptoms lead all the way back to the brain being at fault in some fundamental way. It was good he did the vitamin check & gut check. Never said how you go about getting your gut bacteria checked though?
I have Fibromyalgia & I'm under a Professor of neurology & finally I have the full picture of what's wrong with & I am starting on more accurate treatment. Which is what this woman needs, not diet or exercise advice.
I would say though, the mindfulness class looked like a good idea for anybody living with chronic pain or in a mentally difficult situation.
I like this doctor, (he's rare, an actual caring GP, where ever did they find him?).
But I didn't like how the programme portrayed Fibro as: just change your diet, take less pills, move a bit more & you'll get your life back. You can make yourself better easy attitude.
I did all these things over a year ago, lost 10 stone & now I'm 35, bedridden & my fibros never been so bad. So, some of us do everything in our power to desperately help ourselves before we resort to pills, but we can't manage or control our symptoms, pain or condition, even when we do resort to them & follow all the advice given.
These programmes are good only if they show a wider group of people & parts of me wonder whether an episode or even a series with more suffers in, like this new sleep programme series on Channel 4 would be a better way to go to educating viewers, than the life of one Fibro sufferer.
At the end she went in a noisy, brightly lit environment & got a hug from her husband. These are all things totally off bound to me to experience .
So, I felt angry & frustrated by her lack of will power to try the doctors suggestions but also, by how it portrayed simple life style changes as being the factor of determining who & who does not get better.
The illness is the driving force & not you, but this programme seemed to suggest the opposite & that upset me.
Is there a reply from the doctor?
Hi I've just got to say I'm watching Doctor in the house.
I've only watched 10 minutes of it so far.
I think the women are absolutely amazing the first lady is managing to take a walk every evening and yes she does feel like all of us, she feels like her battery pack has been removed from her but she's managing to walk for an entire hour every evening! that's a huge achievement. the other lady has taken the kids to school, gone to work, gone to the gym, gone shopping I just can't believe that she's actually managing to do that. So that's there baseline if you like.
the other thing I would like to say is this Dr is providing cortisol tests that she can take throughout the day when I did a cortisol test I was put in a hospital ward where people being treated for cancer and it was the most beautiful calm place I've ever been in and my results were normal I had been there for hours and I wasn't stressed at all so maybe we should all have these spit in a tube tests.
I'm about to watch some more but before I do, I am pro walking and coming off as many tablets as possible.
And that is my 2 pence worth.
We all walk different paths, but some help would be nice.
Lydiah xx
Oh dear 4 more minutes of the programme and I've found out the lady also works in a night club.
Erm of course she's tired.
Lydiah
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