Bit of an assault?!

Since diagnosis I have read with interest everything relating to my condition and made significant changes to the way I live . The includes , diet, exercise, relaxation techniques - generally looking after myself and my body as best I can . I do take medication prescribed for AS and RA and frankly at this point in time, would not be able to function well without it.

I know how important diet is and how certain foods can exacerbate and creat further problems in relation to my condition and I am most certainly parreciati e of all the information and research out there as well as genuinely grateful for all the advise, support and encouragement afforded to me on this forum and from the intelligent, compassionate people who choose to be a part of this forum.

However, I feel of late that I am constantly being battered over the head with information and the pushing of things such as the paddison diet; the inference at times having been if not adhering to this diet ( or others just as stringent) I am failing to really look after myself?

I respect that this works for some and that's great but as an intelligent being, I am more than able to make my own Choices and furthermore, own them.

I may be the only one to feel this way - and I will own that too .

Whinge over -

Apologies

47 Replies

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  • As you say what works for some doesn't for others so if you doing well just continue with what your doing and keep focused on that, there are people out there who want to cash in on people

  • Do what's best for you Marie as everyone is different but I know what you mean.

    I'm away with my friend for a pampering break at the moment before my knee replacement in 2 weeks time.

    A massage and 2 large G & T's is working wonders for me today!! 😂😂

    X

  • Enjoy and wishing you the very best with the op.

    Marie

  • Like it have fun

  • I totally agree with you its subjective but I feel that I'm not failing to look after myself so much as living well with RA. I'm Celiac and it worries me that people are giving up an entire food group often without medical advice. Its up to the individual what they do but to suggest that RA can be cured by diet is just wrong. My hunch is that if it could be, that the NHS would be pushing diet as the costs of medications must be huge. So you not alone. x

  • Well said--- you are not on your own with your thoughts 😊

  • Thanks for the response everyone . Really don't mean to Whinge as much and I totally respect each and everyone's individual choice but it just seemed lately that there is a barrage of this - which doesn't feel to me like advice or legitimate information sharing but Feels as if it verges on the judging of those that don't follow suite?

    It, to me doesn't seem helpful or motivational at all.

    Enough said - hope everyone is in a good / better place and I wish you all a good weekend.

    Marie

  • Today I discovered a new popular use of an old word (rare for me as I usually only find out once it's gone out of fashion again). Anyway, it's 'to gaslight someone'. Perhaps more extreme that what you describe, but it has some relevance!

    To me it starts with people telling me that all I need is a copper bracelet, and then moves on to other aspects of life. Providing different opinions is fine, and I always learn something, but I agree it's annoying when an approach are presented as the only way of running your life. Especially if there's an element of using scare tactics to convince that a specific point of view Is the only rational approach.

    There's a huge amount we have yet to learn about auto-immune diseases, and I'm sure that the microbiome will turn out to play a role. But as yet it still seems there's a lot of guesswork, so I'll stick with my personal mix of science and common sense. I refuse to let this disease turn me into a victim too.

  • Absolutely agree- well said HH. Thank you for your well balanced response.

    Marie

  • 'Science and common sense' is exactly the description I needed for what I am doing to tackle this disease. Thank you!

  • So agree with you, I may be 70 but have got so much living too do ,I do rely on medication, eat a well balanced healthy diet, like most people my R/Athritus I am worse some days, I could curl up cry ,but I am very lucky I have the most wonderful caring husband and a great sporting family. Let's fight the bloody R/Athritus x

  • Here here!

  • I could not agree more. In fact I happily include the endless advice by 'well meaning friends and family'. Everyone seems to think they are an expert on Arthritis. The problem, Arthritis is merrily a symptom of the autoimmune disease. This ignorance extends to the medical professionals as well. Most doctors are completely unaware of the severity of this and other autoimmune conditions. I resolved most of this problem by doing genetic screening. Now I concern myself only with how my body will respond to both nutrition and pharmaceuticals. Sadly, not all doctors are receptive to this information. Although this information can be valuable it does not replace your doctors advise. I gave my Rheumy complete access to this data. I have a lot of drug allergies so for me it is essential. The only way to avoid a trial and error approach with me suffering the outcome. This is a much safer approach. It applies equally well to nutrigenomics.

  • So agree with you, people advice drives me mad as they have not got R/Athritus Ever one is different, this site is very helpful ,like you I have lots of drug allergies which is a pain in its self ,thank goodness I have a wonderful rheumatologist x

  • Thank you damage.

    On a slightly different note, I'd probably agree whether it's your rhuemy or your gp , I'd arrange for urine test. You can take the sample in with you?

    Hoping you get to the bottom of what's going on soon .

    Marie

  • I understand why you've needed to get this out Marie, please don't think of it as a whinge, you've just said what many of us feel. I do wish it wasn't necessary though & you'd been part of this community around 18 months ago when weren't peppered with this diet or another diet, & the screed we receive if we dare question or even reply. I honestly don't think we had a question a fortnight about which foods we're reacting to even! We rubbed along happily, had the odd scuffle that will always happen amongst friends, we certainly didn't feel berated ever & you'll notice the longer standing members continue to use the site in this manner. I'm just pleased you had it in you to stay around, we're a good, truly caring bunch on the whole & you've become a valued member.

  • That's very kind of you to say NMH and I genuinely thank you.

    I instinctively know what a kind, Well informed bunch of people post here and I certainly feel comfortable seeking advise and offering whatever I can to contribute and I am forever happy I stumbled into the forum - that for me hasn't changed. But, I've felt increasingly irked by the insistence that one way of managing this dreadful Condition is better and those who do so are somewhat superior to the rest of us. I'm all For the sharing of helpful information but to me, this should always be mindful and respectful of others understanding , experience and feelings?

    It just feels unnecessarily provocative - I think HH got it right earlier when he referred to the phrase to "gas light someone!"

    Anyway, I hope things are well for you and your husband and wish you a peaceful weekend.

    Marie

  • She.....

  • Sincere apologies- I was aware of your gender! Typo

  • Maybe I shouldn't emphasise I'm female as if I was a "he" maybe my RA would vanish since it's so much less common in men?

  • On balance .......

  • I am fairly new to this site but as I was originally diagnosed with pmr I have followed that site for several years. The difference between this site and that is striking. I have to say the focus there is far more on the medical treatments offered and their effects rather than here where far more alternative ideas are put out. The result is that the pmr site feels far more professional and yet remains supportive and friendly. Too many 'virtual hugs' here for me!

    I have just begun on Benepali and would like to know more about how others have got on, the side effects they may have experienced etc

    Like Marie I do not need to have dietary changes, alternative treatments, news about someone's grandchild or anything else when I access the site

  • It's a good place to get information, however, we are not just ill people. We are a whole host of other things too.

    I see no harm in people talking about things that work (or not) for them. I wouldn't mind hearing about folks grandchildren either. But that's just me.

    I personally just avoid any post that doesn't interest me.

  • I never fall for all that 'Selling of such & such diet' & how remarkable & fabulous they feel..... We know our bodies, we know what we do & don't like, what our bodies can tolerate. Yes we should be eating healthy diets, taking regular exercise etc etc etc...... But hands up, who really does this everyday!? Not Me.... I'm a vegetarian, eat plenty of healthy food everyday, but still have those little comfort treats .... And Why Not? ... Exercise - Yes I do, but not everyday.

    I don't stick to rules 😁

    What I'm saying is, you do what you feel comfortable with. That's all really.

    Oh, and whinge as much as you like. We all love to have a good whinge now & then. 😉

    (Little treat for myself tonight, A GLASS OF WHISKY. CHEERS) 🍸

  • Omg! I'm so tempted to spoil myself with a little glass of wine now!

  • I can't force you 😉

  • Thank you Marie for expressing exactly what I was feeling

  • I am a bit confused🤔 I was of the impression that this forum was for everyone suffering from RA. A forum where you can share thoughts and experiences on treatments and perhaps come up with new ideas that can be of help to others. Some of us are mainly focused on meds, some want to learn more about diets and the effect of foods and supplements on inflammation. The majority of the posts are about meds and their effects or lack of effect. Why is it not possible to give room to those who want to discuss diets? We read a pic the post that we find interesting, we are not forced to read about anything we do not want😊

  • Hi simba

    I think you'll find my point is that I am all

    For the sharing of information. Equally, I absolutely respect

    Everyone's choice and their right of expression. What I am saying I object too, Fundamentally, is those whose mission, and at times it feels like a mission, seems to be to berate those who don't make the same choices and appear to wield it like a club inferring that those who don't make this same choice are somehow not managing their condition in the way that they should be.

    I accept and respect your opinion and the right to share this - please extend the same Courtesy to me.

    Marie

  • Yes Marie I am of the same opinion that everyones thoughts and choices should be met with respect. What I am trying to understand is how posting dietary success stories or experiences of diets can be offensive, they certainly do not imply that other treatment choices are inferior.I am sure this is not the intension in these posts, and I am really sorry if you feel that way😊

  • I do and you are possibly not aware that certain post of late may have been suggestive of this.

    Enjoy your day

  • I think, for me (though I'm newish to the site), discussion about diets is fine, but SOME of the posts around the subject are thinly disguised advertisements, with the associated hyperbole, which is not appropriate to a support site unless it is openly identifiable as such. We all have access to these programme adverts via simple internet searches.

  • Actually I think it may be time for Health Unlocked to look at who responds to the original posts re diet especially Paddisons as I wonder if its set up to promote it.

  • I agree absolutely janmary. Some posts are so formulaic they simply do not read as the experience of individuals keen to share what works for them. The ripostes to those who express any wariness are very predictable and full-on too.

  • Quite right. YOU are the BOSS of this condition and YOU have to live with it. Stick with your attitude. All the best.

  • I couldn't agree more with the sentiment expressed. I think we are faced with a few issues. The recent Horizon expose on clean eating shows how the public at large have bought in to this idea that diet is responsible for everything and somehow if you don't follow clean eating your illness is your fault. This is furthered by the NHS who lump all long term conditions together so whilst it may be helpful for a type II diabetic to change their diet the idea perpetuated by NHS campaigns around this that somehow you can change your condition through diet in the public's mind covers all long term conditions. My personal pet peave is those people who when I'm not well shout at me in capital letters well you are on TOXIC medications what do you expect - as though somehow I deserve to be ill because I've randomly chosen to take these medications as though there is an alternative. We would never say to a cancer patient - doh what do you expect if you go taking those stupid chemo drugs

  • Understood.

    To me it is a case of eat and live as well ( healthy) as able to support your overall health but understanding for me, is that not doing so will not have caused your condition and doing so, in and if itself, will not cure your condition. There is a necessity for medication and I will be guided by my consultants in this. They will do their bit and I will do mine - together, this is what works for me.

    Marie

  • You're certainly not the only one Eiram!

    I think that some of the posts to which you may be referring could possibly come under the category of advertising, which is fine as long as they present as such and don't masquerade as ordinary posts.

    Some of the diets recommended by posts may or may not help people with RA, but may not be advisable for people who also have some other medical problems ,or are on medication for other conditions.

  • Well said.

  • Dear Eiram50

    Thank you for your post. I have been in direct contact with the gentleman who has been promoting the Paddison diet and asked him to stop posting in this forum about it and he has agreed. This forum is not a place to promote any specific products, dietary or otherwise, but a safe space for people to talk about their experiences and gain mutual support. Diet can play a part in easing or exacerbating RA symptoms but what works or doesn't work for one, cannot be generalised over a whole RA population. There is no evidence that any specific diet can alter the disease process or provide any kind of 'cure'. If there was, we'd know about it. There is some mild evidence that a Mediterranean style diet can be beneficial and we included recommendations about this in the NICE GUIDELINE CG79. We are working on reviewing some elements of this national guideline with NICE currently. You are absolutely right, taking your meds and self-managing as well as you can by learning as much as you can about your disease and making informed choices is a very good way forward.

    Best wishes

    Ailsa (NRAS CEO)

  • Thank you Alisa, I very much appreciate that and have a feeling I won't be alone in doing so .

    Regards

    Marie

  • this is why you wish me to leave then. it makes sense now. my post was not your cup of tea. sorry

  • I don't believe I said that I wished for you to leave?

  • Sorry I thought you said for me to leave because of my feelings. I understand that I came over as someone pushing something that you dislike now. So for that I apologise. Seems the PP got here before me. I was oblivious as there are not many of us in the U.K. Have a good evening.

  • I would never suggest that someone leave the forum- you have as much right to be here as I and equally, I do not object to the topic you chose to speak of and share.

    What I do object to is sweeping statements made in relation to those of us that don't share the enthusiasm for one particular diet/ programme?

    You too enjoy your night.

    Marie

  • Hi Eiram50

    I feel exactly the way you've described in your post,which is why I've only flitted on and off this site for the past couple of weeks - it seems to me that since a certain person started a huge debate about a month ago,then the subject's never really been put to bed. Like you,I feel I've done everything I can for the sake of my own health,and I wouldn't push that down other people's throats(or at least I hope I haven't come across anywhere near as annoying?) so I just choose to completely ignore this type of posts now - they may help others,but for me it just winds me up,so I find it easier to whizz past them instead(I know that's easier said than done when your phone/tablet screen is full of the posts/replies) but each to their own. Let them get on with it,and I'll respond to the posts that truly engage/interest me instead.

    Definitely no need to apologise for ranting,as I'm sure we can't be the only two people to feel like that on here?!

    Here's to a new day,hopefully a little less pain free now that spring has truly sprung😊

    Nicki x

  • Clint Paddison is an Australian comedian claiming he has the cure for RA.. Anyways, we all strive to survive this disease. Some people claim diet helps them. It dosen't help me..

    Though at the age of 22 maybe diet helped me cure myself of MS. II did smoke a pack of ciggarettes a day and I ate Pizza and drank beer..and my MS went away......cured..

    ..People shouldn't promote a certain diet that charges money with false claims of a cure.

    Hope you all are painfree

    Sue

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