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Well meaning people telling me to change my diet

Any advice on how to tell well-meaning people in my business community to get lost?

I know they mean well and I’ve had another pop up to say he can get me off all medication as his girlfriend was taking plaquenil for fibromyalgia and she’s not now and fine. She didn’t want to take meds so eats a plant based diet with supplements and is in remission.

I’ve tried saying that for me, i went from not having anything to completely immobile in three weeks and that where I stayed for almost two years, and it’s RA and I really don’t want to go back there again. I lost friends, nearly lost my business and I’m in a good place now. Why do some people have this overwhelming urge to change people.

I now feel I’m inadequate, not trying hard enough - all those things. I can’t be rude to him as he’s in one of my business groups and I don’t want to be rude anyway - it’s not how I am. I’d have zero social life if I did as he suggests as it revolves around meeting friends in lovely restaurants. Do you think I should try what he suggests and I’m being stubborn?

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Hi Cwendyn, Grrrrrr! Is all I can say about your well meaning business friends. As you know, we are all individuals with our RA, and that means YOU get to choose how you deal with it. How you feel, as stated, is absolutely fantastic, especially as you’re in a good place :)

No, you’re not being stubborn, you have every right to make your own decisions about your health. In polite company, he shouldn’t even be discussing your health and how you deal with it anyway, because it is none of his business. Find a polite way of saying that.

I once got some excellent advice from a mentor. It was “Never explain anything” - it works because once you start “explaining” it’s like you’ve got something to apologise for - which you don’t. Cheers Deb :)

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Thank you! Love the never explain and you’re right, I have nothing g to apologise for 💪🏽🙏🏼

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I always think Any advice may be helpful! If it was me I would listen to his ideas, say thank you then decide if I want to implement them or not. And if I do it doesn't mean straight away it's when u r ready. For example I eat plant based often but not every day. Everything is worth a try doesn't mean everything will work for everybody. I also think it's nice he offering some support from experience it's annoying when people who have no idea offer advice which makes no sense lol. Glad ur feeling better! This is your journey, you are in charge. Xx

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I like the "don't explain", but you could also be blunt? I'm glad it worked out for your girlfriend, but I have an aggressive auto immune disease, not fibromyalgia, and research has shown that the immune suppressant drugs I take are the best solution for me.

It's always good to eat well, and have a diet that's healthy - so lots of fruit and veg and moderate fats and sugars. Bit you do also have to live your life.

Some people do seem to have a form of RA that responds to diet, but this is not very common and requires big changes to your life. I tried for months, and it made me feel healthier but did nothing for the RA. So now I eat well, exercise, sleep, take my drugs and don't feel guilty at all!

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I agree with YanniBaci....never complain,never explain.

I used to try to politely explain...meaning myob...but these " helpful " little souls just can't 'get ' that one diet does not suit all...& more important that what you eat does not cure RA. If you have an intolerance to a food avoiding it is sensible,but it's not a cure.

Now I lie .....I say I have just started a new eating regime & I need to give it time, (open ended) but I will certainly consider their suggestion (not)...I fake interest in their wonder cure, then swiftly change the subject ....usually works...if not I just say I'm sure nobody wants to discuss my boring old diet..end of.

Good luck,,,just be firm.

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Very diplomatic, and elegantly explained :)

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I love this. Thank you AC 😍

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As I see it, My RA is My business......& that includes what I eat.

I own it, I deal with & if I would like some dietary advice I will ask for It.

Get set in your mind how you will answer the first (usually obvious or daft) suggestion.. ....no time to waffle or you will promising to drink pond water before you know it! Once you accept a suggestion they just keep coming.

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It's a difficult one without sounding ungracious. I do have a problem with him saying he can get you off all medication though, so that would get my back up anyway! How dare he consider he's the one to control what you do, you're an adult & quite capable of deciding what you do, in anything, not only treating your condition. Therein is a possible opener, that the two are not the same. RD is an autoimmune condition for which there are many meds that help, you've found the ones that do for you enabling you to eat the foods you like (maybe you have some exceptions, if so you can let him know if you choose to). As Fibromyalgia is quite different & not always as successfully medicated, you understand why it may lead people to seek out alternative things like diets. I don't have it so others may be better able to expand.

I'd simply say something along the lines of you appreciate their concern but aside from the differences of the conditions each person is different & you prefer with the help of your Rheumy team to keep your RD controlled successfully with the treatment you take. An alternative if you didn't want to go into the differences or if you wanted to expand you could say something like you enjoy eating out with friends & such a restrictive diet would severely reduce the pleasure of doing so. You wouldn't wish to feel different & neither would he I'm sure if he also had a life changing condition.

Or simply just say keep your beak out (kidding!).

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Haha. Love your last suggestion

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It all begs the question that being medication-free is better. Says who? If anyone tells me the Paddison diet could put me into remission, I'd reply "Great, so can my medication; plus, I get to eat what I like. Win win".

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Definitely. My biz also works with very good restaurants. I really don't want to meet my clients and say sorry, I can't try your food, but I'll keep promoting it 😣

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I’m always amazed at how people think they can ‘cure’ RA just with a change of diet, especially one that worked for a different condition!

I would just say ‘thanks for your interest, it’s very kind of you, and I’m glad to hear your girlfriend is doing well. However, I have a different condition and I’m doing fine on my current treatment and don’t want to rock the boat, but I’ll keep your suggestion in mind if that changes’.

Or else just ignore it.....

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Make all the right appreciative noises and change the subject pdq. Don'cha just love these amateur medicos who don't even know the difference between fibro and RD?

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That did cross my mind. I wondered what I was missing!

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Not a lot, apparently

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Bless you!

I’m sure most - if not all of them mean well.

However tell them

I’m a vegetarian on a mainly plant based diet, and have been since the age of 11, yet developed RA nonetheless at 37 (ish)

and was really suffering TIL I took planquil/hydroxy...

I count myself as being lucky in that respect as it can be trial and error for some.

I just nod and smile when people give me advice, or say I need to change jobs as I push a big trolley around in Asda doing other peoples shopping for them... 😂 they are usually just being kind and I do pay for it sometimes the day after with a mildly aching wrist etc, but I only work 3 days a week, and it makes me feel like I’m contributing to the household while I can... there may be a time when I can’t Work or need to change jobs but I’m not going to do so unless it’s my own decision....

I also may decide to try adding vitamins minerals herbs spices whatever into my diet, but again this will be my decision, and just because something helped one person it doesn’t mean it will help another... I believe, and this is just my opinion, RA and it’s related autoimmune conditions effect us all differently, diets may work for some and if so then wahoo for them and I’m happy it did, same as with meds, what works for one of us makes things worse for another of us....

As I say just smile and nod and say how interesting, feel free to research and try out any anti-inflammatory diets/remedies you wish, but always consult your doctors!

All the best to you

Sorry for the essay I have a tendency to do this😂

Just smile and nod at me xxx 😁

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Love your essay! I can do the smiling and nodding. Not sure I could walk around Asda all day! That's amazing! I limped around Sainsbury on Saturday. Felt like I was walking through treacle 🌞

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I’m sure people generally mean well but I share your frustration. I had someone suggest that counseling would help cure my RA.

Most people don’t understand Ra at all. They mean well I’m sure but their suggestions come out of ignorance about the disease. For those genuinely wanting to help, they may like to educate themselves- direct them to the NRAS website or just thank them for their well meaning suggestions.

If the cure was as easy as changing our diets, we’d all be cured! ☺️ wouldn’t that be nice .

You might say, “ thank you so much, you know I’ve heard that before and actually I tried that but as I learn more about my disease.... I can share some info with you if you’d like.... it has really helped me and my family understand better.”

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I agree. My friends are amazing and have researched it and understand completely. One just booked a flight to go to Crete in September and without me saying a thing, she booked aisle seat and contacted them about possible help at the airportshould I need it. I do if I go from Gatwick as it’s like a three mile hike, but other airports are fine!

Funnily enough, I did have some counselling as I was raging about having it and needed to have some acceptance. That worked for me. Not sure how it would help with RA though.

You’re totally right, people mean well, but often have no clue.🙏🏼🌻

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Ha ha brilliant, counselling to cure RA that's probably the best yet, isn't peoples ignorance brilliant at times ........how about an exorcism, that might help ? :-)

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Hi Cwendyn,

It may be worth a try. I’ve had RA disease for a long time now and I recently cut a lot of carbohydrates from my diet. After about 3 weeks my feet, ankles and hips feel better. Diet, in combination with your meds may work wonders. I wish you well.

R

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I did. Tried it for months with a PT and nutritionists help. No change at all. My inflammation levels were still soaring like a mad thing and then put on biologics. 😔

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I don't believe diet changes a thing. Your experience is proof of that.

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Diet very seldom is enough but as a complementary treatmentment where the focus is getting right nutrion and avoiding allergens that make inflammation worse, cannot be bad. With nutritional treatments like with meds you need to be able to assess the whole situation before you try treatments and you need to have a follow up to ensure the effect of the treatment. Combining different meds with nutrinional and lifestyle support I believe is the best and to do this effectively the support from a Integrated medical doctor who has the best expertize to do this.This is the help I would happily pay 500£ for. The nutritionists do not know enough about RA and the rheumies do not know enough about nutrition.

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It also kinda assumes you were not eating well to begin with. I was very slim, active with a very healthy diet before I became unwell.

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To be honest, I wasn’t 😀

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People will always have doffered opinions and will want to offer advice. It's up to you if you take it or not. Simply ignore it whilst being polite and don't give other people so much power over the way you feel. You know what works for you so don't doubt yourself.

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That should be "different opinions"

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You have to think that what they are saying is out of trying to help. I had it all the time when I first had RA... people shoving their theories down my neck every single day. But people tend to be fixers.., they want to help and fix you but sometimes it can come across as preachy or disrespectful.

So take all advice with a pinch of salt. Just say thank you for your concern and I’m doing things my way for a while. X

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Hi Cwendyn. I think you should clear these no-it-all’s out of your life they are not good for you. Tell them how their interfearing is making you depressed and tell them to back off. It’s your body your pain and you’ll handle it your way thank you very much. Do it in such a way that you don’t lose business contacts. Hopefully they will respect you for your honesty.

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Hahaha - this made me laugh no end.

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Big SIGH !!! :-)

You could ask him when he became qualified as a Rheumy, when he discovered the cause of RA and how to cure it ?! Because no-one else seems to know ................

I realise he is trying to come from a good place, I understand, I have people at work who give me info on diets and OA ! It seems that they are trying to help, it may be worth explaining that RA is different from fibromyalgia, although there are some similarities, it is treated very differently . Its really none of their business and most comments come from ignorance of the condition............

If he asks what the most annoying thing about RA is, you could tell him it can be frustrating when people try to give you advice, or tell someone else in his earshot ?!

My rheumy told me not to worry about what I ate, as I asked him whether a change of diet would help, he suggested a med style diet but not to worry too much about it and make sure that I didn't have more than a bottle of wine per week. (that's the worst bit ! :-) )

If you are happy with how you feel, the meds you are on, your lifestyle and social life then don't change a thing because someone thinks they know better than the doctors !

If you do want to see about plant based foods, rather than what you normally have, then why not try a few veggie dishes, you can even do that socially. You may have some really good veggie restaurants near you.........

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I do an intermittent fasting diet as it is - one meal a day. Lots of my clients are Michelin star restaurants, so none are vegatarian. I do eat veggie meals sometimes, but to be honest, when I spent 6 months last year doing that with a PT and nutritionist, my inflammation levels carried on raising like crazy - so my conclusion was, didn't make a scrap of difference. I was then prescribed Benepali which has been great......so far :)

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oooh lucky you ....for the Michelin star restaurants bit, personally if I was to go regularly and offered food, there is no way I would turn it down ! Sounds like you have a very interesting job !

Well, if you have tried a veggie diet then tell him in the nicest possible way that you have tried what he suggests and it didn't make a jot of difference, that might shut him up ! :-)

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In case weight is an issue for you, I lost the massive weight I gained on years of prednisone by eating a high protein diet with reasonable fat--someting you can do in 5 star restaurants !!! I have to watch yummy bread, of course. For me the change helped some joint pain, but not inflammation. This is meant to be jocular and not preachy. I love eating and envy you your restaurants. Also, your work buddy sounds potentially controlling. I wouldn't want to encourage him with even a polite listening.

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Well, initially the best tool for you is to briefly educate these people...as there over 100 types of Rheumatoid arthritis ALONE...and everybody has a different genetic makeup where the one size fits all theory is obviously much too simplistic. Additionally, RD is a continuously variable disease, that literally changes overnight in response to many of the biologics or other meds we must take to limit bone density loss or future joint destruction. There is no cure...period. This is a well founded medical fact., and based on years of historical research. We don’t even know the cause of RD at this juncture, as it is such an insidious disease and as such, probably has an infinite number of causal factors. When people are so naive to the details and chronic nature of RD, it is most frustrating. Many give a quick and general observation and tend to always think of ways that may work for the general population, but people with RD are of such a special subset most people literally cannot comprehend the day to day challenges and frustrations of same. Until these people take the time to become properly educated, you have to deal with it best you can with the knowledge you have gained since being diagnosed with this disease. If they could only walk in your shoes...but in the meantime, if put on the defensive, there is so much independent scientific and medical data to back you up, and disprove the efficacy of such simple “cures” as many want to impart to us...

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I see it as he’s trying to help you not change you. His friend was helped and he’s sharing what helped her so that maybe it can help you. I personally believe if I could change my diet, it would benefit me. Every doctor I see tells me more fruits and vegetables, Mediterranean diet, and I feel better when I’m gluten free. I just have a really hard time changing anything and I love my bread. But I do feel a good diet can help us all alleviate our pain. Please stop disliking the people who like you and care enough about you to try and help. Hugs to you and all of us. Hoping we find relief from our pains.

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It's not about disliking people, just about people respecting that the individual and the medical teams caring for them do actually know better than their uninformed opinion. It's absolutely fine people asking if you are well cared for, or have tried different treatments etc but to offer nonsense as a treatment for something they know nothing about is not helpful, especially if you are feeling poorly, having flare or whatever.

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Is that all you got out of my reply? You need to focus on more than one word to tear someone’s response apart.

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I’d just go on NRAS website get loads of leaflets say to him as he was interested enough to want to give you ‘helpful’ advice I thought you might like these lol. Another twit educated and think he would shut up and stop being a helpful idiot. Or just tell him to get knotted x

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Yet another reply, C. Define 'well-meaning'. I ask because if someone said that to me, I would assume they think they know better than me how to do my own life and I would quickly assure them otherwise. It is a boundary line that no one should cross in anyone's life. You are the only one who knows what is best for you. 😊

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He is definitely well meaning. He's a PT and nutritionist. The lady with fibro is someone I know and he's helped her. I do sometimes feel that some people see all meds as bad (Pharma making too much money and exploiting etc...) and that they're lying to us as a way to make the Pharma money. I'm not sure that's quite true! Of course, he would also charge me which would probably amount to around £500 a month for his 'advice' :)

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What!? I wish you'd told us that in the first instance I might have worded my reply rather differently!

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What bit, the charging bit? :)

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Uh uh. Set them thinking if they're actually doing right for themselves (not meaning you but anyone not as savvy), plant the seed & then offer their services. It's one thing thinking someone's being kind but quite another when they're in the business.

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What does £500 per month include? Just advice?

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Advice and online pt type sessions. It can also include a blood test

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And desperate people will pay for it, shame on these profiteers.

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There surely has to more to this guy. Blood tests are free at GP surgeries. Advice is free on the internet, on here, at the Rheumatology Dept. Does he do physical training or is everything online? If so, what's his website?

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Blood tests are around hormones, not the one's from gp. The physical training is online too. It's tailored to each person and he keeps you accountable. Quite a few PTs work this way now.

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Seems quite a few of every trade works this way nowadays. Not for me. Having exercised all my life from Yoga to Calanetics to Gym work, it's vitally important that one is doing postures correctly in the presence of an instructor. Maybe I do things the old fashioned way but it feels better face to face than online, especially for health. Thanks for the info anyway Cwendyn. I do like to give people the benefit of the doubt but that's a hell of a price for online tuition. I would be asking him how and where he got his RA 'advice' from.

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His girlfriend now wife. She was diagnosed with sero positive when he met her and with whatever he does, she's fine now apparently.

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Oh really, well that's interesting. Sorry, I must have misread, I understood his girlfriend had Fibromyalgia. She isn't taking any drugs for RA?

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A friend of mine who works with him has Fibro. Girlfriend sero positive . No meds, neither does she have blood tests to see if it’s still active. His words were, she didn’t want to put drugs in her body they use for chemo. I’m not sure he realises it’s a fraction of the strength of chemo dose. I hope she’s not storing up some serious problems long term.

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I think that thought lies in the back of many people's minds. It's the uncertainty of this disease. Should we keep taking drugs long term or not take any. I feel there are risks on both sides. There is no easy answer as I have taken instructions from my Rheumy re meds and they didn't work. I think it's sensible to have a plan B in place even for times we have to come off meds for infection, ops purposes. I can't take Prednisolone and wouldn't want to so foods with lots of vitamins and antioxidants is very important to me.

I'm very curious about your friend in a nice way :)

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What is a PT?

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Personal Trainer Nanna.

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Thank you.

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You're welcome.

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There is no intent to be unkind to people, but frankly I only have a short spell each day in which I feel well, I prefer not to spend much of it talking about diet, which doesn't work (for me).

So, firstly I always refer to my condition as RD, which cuts out a lot of arthriticky comments, but if anyone blabs on about diet, honey, asprin, dancing naked outside on a full moon night or mentions RA, arthritis or whatever...I politely respond by saying "oh, sorry I thought you had heard me I've got RD, it's an autoimmune disease that affects all my body including my organs, cognition, eyes, and my joints. It is treated with cytotoxic drugs which I inject. I'm under the care of 3 NHS consultants at the moment."

Sometimes I just say "no" and move on.

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You know, I wondered if RD is used by folks from the UK interchangeably with RA. So it is different and encompasses a lot more of the body as your post says. What does the D stand for then? And bless you for listening to the people like me who have only got RA - well - so far anyway. 😧

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It stands for rheumatoid disease, much more appropriate I believe.

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I just can't quit, I'm so blown away by your diagnosis so my next thing to say is that diet is just food. Food for your health. Nothing magical about broccoli all of a sudden, when you figure you've been eating it for years. The whole dancing thing though; are you sure there's not something in it? 😁😁😁

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I've tried it believe me 🤓didn't work

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Also, I just read all the rest of the posts on this and I have to say, I'm in the space of 'my life is now changed forever, I have continuous pain, and I have no time for anything but the truth'. Don't waste my time with fluff.

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You could be radical and take the wind out of his sails by telling him ( politely) "thank you but I like taking the drugs because they help "

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I'll keep that one up my sleeve , simple and straight to the point, without being unkind.

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Not everyone needs to have RA to understand how it presents itself. None of my Rheumys have RA. The majority of NRAS admin don't have RA. But hey, we listen to them don't we?

I have knowledge of certain things of which I haven't personally experienced and if I was kindly offering support and suggestions, I would be pretty hurt to think I was being spoken about in such a negative way!

I think the guy was genuinely trying to help. If someone doesn't want help then fine but shooting down a person who is being thoughtful could come back and bite one in the bum!

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I think Rheumy's have the edge on a Personal Trainer though don't you? No, they may not have RD but neither does the PT either. They do however complete a 5 year MD training (or 4 for graduate entry programme), then a 2 year foundation programme, then another 2 or 3 years of core training (postgrad medical training, Specialty Training ST1 & ST2). Once they're an ST3 another 5 years of ST begins, more if they choose to go on to qualify for subspecialties. I think we can be pretty sure Ailsa, & training within NRAS as a whole, are sure anyone who has as any dealings with RD patients is pretty much up to speed. That's why we listen to them over a PT, or we do if we take a sensible & reliable approach. We can politely decline their suggestions if we choose to or if it's not coming from a business perspective but if it is I'm afraid I don't have time to respond any other way than I would normally to someone who's services I don't require. Listen if you have the time but if you don't intend to sign up & pay a fee then I'm sure you'll be thanked for not wasting their time if not. Speaking generally of course. 😉

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He's a member of a group I run and pays me for it. So I have to be a bit diplomatic. I would prefer to say what I feel 😂🤣

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I just don't judge people. I know nothing of this guy or his life. I have learned just recently that his girlfriend has sero positive RA.

I knew of RA before I got it with my line of work but nothing in comparison to what I know now. The guy is maybe really good at what he does.

People pay fortunes for private consultations with Rheumys and get no better service. It's life.

I personally will stay true to my open mind until I'm satisfied.

I am curious about Cwendyn's friend , I must be honest.

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I think that's the issue. Mine came on in 3 weeks. Was fine one day, almost immobile 3 weeks later. Benepali has been a life saver for me.

This is who I mentioned. Ollie at revitalizationblueprint.com/

He's a really nice chap

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Thanks for this Cwendyn.

Were you never tempted to find out more how this guy helped his wife? I was also immobile for weeks , it was so painful and very scary!

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Diet and supplements. I've been taking the supplements for 3 years and tried the diet with a different PT last year. Inflammation went sky high and that's when I was given Benepali

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Hmmm. Without talking to him I can't comment. Some people just rub you up the wrong way from the start if they're preachy without knowing b"gger all about RD. Others can be pleasant about it, admit they don't know the first thing & give you the opportunity of explaining why it's not of interest. Whether or not someone he knows has seropositive RD is neither here nor there as we each have varying severity not to say choose to treat ourselves our own way & if his recommendations & plan cost £6,000 a year it doesn't weigh against my prepayment prescription of £104 & the good food I eat (plus cheats now & again, well it's necessary isn't it?!). 😊

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I know and understand what your saying. He could be an RD Wizard though! I'm still curious :)

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Give him a call. He's very nice.

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I've tried diets with a PT last year. Did nothing and I was even more miserable! I take the equivalent of a small mortgage every month in supplements. Who knows if they work or not, but they don't do any harm I guess.

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Well there you go. That's how you politely decline his advice! I'd check on your supplements though, pointless weeing out those you don't need & you can always treat yourself to the money you save. Handbags, shoes, choc. All good for the soul. 🤗

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Love a nice handbag!

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If something sounds too good to be true, it usually is.

If he had a cure why is he not shouting it from the roof tops and contacting the NHS to advise them of it ?

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Exactly, again. Can't find any holes in that argument!

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I will be on a mission to find out 😉

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My mistake. His wife is Seronegative. I've just checked. Sorry-my error

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