NRAS
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Another controversial question...

Who on here with RA is a bit overweight and still eats the occasional naughty treat and often misses exercise to watch a good film?

Some of my holier than though friends write to me fairly often saying I should eat this and do that and take myself off the RA drugs as they are killing me. That I can reverse my RA with nutrition alone and I should be only eating alkaline food.

I do read. I have researched this illness, yet they think they know better. Even my acupuncturist, who used to be a surgeon so has both western and eastern medical background (I tell them) has told me that I must keep taking the western drugs as well as eating healthily and exercising.

I’m fed up to the back teeth of getting lectures from my healthy fit friends about what I’m doing wrong. Would they tell someone with cancer to stop chemo or someone with diabetes to stop the insulin? It’s so

Insulting.

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Jules,

Please stop listening to the twittering magpies, you must remember that smallest minds have the biggest mouths! Nutrition is always important, and medications are too! Do what the rheumatologist thinks is best to get you inflammation under control, then experiment with "special diets". Inflammation means joint damage, worry about that! Tell the " well meaning friends" to take a leap, they cannot understand what they haven't felt!

I'm not trying to be rude, but am in too much agony to sugar coat anything! I feel you cause yourself extra strife worrying over the little things, this disease cannot be fobbed off or wished away! No matter how much you fret over the details, the disease is still going to rear its ugly head! Calm down and focus on the remedies that do work, not the " magic cure" that people try to get us to sell our souls for!

I hear all the same crap from my family, you just have to get a thick skin and do what you need to do to function within the disease! You are the one living with this disease, they don't understand what they haven't felt!

Hopefully you'll stop letting people work you up with their ignorance!

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Smallest minds have the biggest mouths! Love it!

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Hunny I'm 5ft 3inch and weigh 13 stone my main diet is crisp biscuits and chocolate as I don't feel like eating a lot on all the drugs I'm on and to be honest the pain don't make you want to eat really so do what makes you happy Hun your always get people moaning about one thing or another what works for them might not work for you xx

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Diet is always important to live a healthy life.... having said that, when I was 22years old I was diagnosed with Multiple Sclerosis and a MRI showed the MS leison on my brain. It was a scary time for me and I am greatful for my full recovery. There were no drugs invented for MS in the early 1990's , so I continued the diet of a 22 year old girl. My diet at that time in my life was pizza, McDonalds and beer... oh and a pack of cigarettes aday to keep my slim figure.....did my diet cure my MS?.... No, .....I am MS free because I was one of the lucky 5% of people whose MS just goes away.....so I am a firm believer that diet has no effect...

Oh and I must add that I've gained 35 pounds through my 4 year RA journey and guess what? My severe seropositive RA diagnosis seems to have disapeared and thus my diagnosis has changed.

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Please ignore them. After my father in law was diagnosed with cancer, people came out of the woodwork! “Cures” were told to us everyday. It made me realize how annoying/patronizing/totalbs all these things are!

People do that to me too and I’m still trying to find a balance myself. They are hard to tune out.

I found this card on line and Ive ordered a few to give out when needed!

emilymcdowell.com/collectio...

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Love the cards! I want the one that says "I'm so sorry you're sick and I will never try to sell you some random treatment I read about on the internet"!

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That was the other one I bought! Ugh. People. My doctor spent over a decade in school and training and you think reading a “cure” on the internet is better advice for my treatment 🙄

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I love these cards. Thanks for the link.

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That’s genius. Think I will get the tshirt. X

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Tell them to go and get stuffed as they don't know what they are talking about. When they have RA they can then spout their stupid views and i hope they never suffer like we do. Sorry for being offhand with your friends view,but these people don't know what they are talking about. Hugs darling you go on taking the drugs and just let them go as they are not friends you want or need.xxxxx

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I thank you for your honestly. Honestly they’re pains in the arse.

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Haha, know what u mean, has made me sooo angry in the past. However I do think that sugar makes things worse for me and I'm one of those people who's unable to have chocolate sitting in the house...coz I just can't help myself😩

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Of course. But these friends also know for 90% of the time I’m incredibly healthy. It’s when I see them that I bloody slip, so it’s their fault! Ha.

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5ft 3" & 8st 71bs. I try to eat as healthily as possible 80% of the time. I tried an NHS led exclusion diet in the 1980's and it didn't work. After 46 years of RA I cannot pinpoint any particular foods that make my RA worse.

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This is not completely straightforward. Taking proper care of yourself is very important in RA - sleep, nutrition, exercise, stress etc. There's quite a lot of research now that shows that having a poor lifestyle can make your life with RA much more difficult.

For example, a big study of hundreds of people reported in the British Medical Journal last month found that overweight patients were 25% less likely to achieve remission in the three years after diagnosis than patients with a healthy weight. Obese patients were 47% less likely to achieve remission than those with a normal BMI.

However.....that doesn't mean you have to stick to a strict regime as there are many ways to achieve a good lifestyle and it can include cake!

As for the different special diets, well that's a personal choice. They did nothing for me, but if it helps someone feel more in control or loose weight well that's fine too. And a few people do seem to have got remarkable benefits, although there's no objective research that proves it will work universally.

Like the others have said, what I do strongly object to is those who push specific approaches. It is so patronising, and they don't seem to realise how insulting the sub-text is as it's in effect saying this is our fault for eating X. I just ignore them, or get very rude.

Even Steve Jobs apparently regretted turning his back on conventional medicine for alternative nutrition based approaches just before he died.

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Exactly. Nail on the head. It’s the pushy ones that drive me nuts. Having known no one with RA and thinking they’re experts.

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My husband has got RA, two knee replacements one of which is causing him immense problems which no one seems able to fix. His knee is so swollen and painful he can’t walk without crutches at the moment and it seems all doctors have given up on him. 😐. But that’s not what I wanted to say here. I do the cooking and make healthy meals, mostly vegetarian (poor him I hear you say) 🤪. But outside of the meals I cook for him, he doesn’t eat very healthily at all. I suppose I am guilty of nagging him to get him to eat more healthily (and I know I get on his nerves), so I guess I am one of those annoying people that you all dislike so much. However, I would never ask him to stop his medications as that would be downright ignorant. I don’t believe that eating differently will cure him, but I sincerely believe that by trying a different way of eating, i.e. dairy free, cutting our processed foods and sugar, he might have less pain. I have my own health issues, have totally adjusted my diet and it has improved my health so much. I think it’s worth trying a change of diet to see if it helps and if not, you’ve lost absolutely nothing. Wishing you all the best of health, many pain free days and a very happy Xmas. ☃️🤶☃️

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Encouraging people to try to be as healthy as they can is fine - especially if you make the food! It's telling me that I would absolutely be better if I just gave up eating pasta, and sugar, and meat, and gluten that drives me mad. Maybe it works for some, it it doesn't work for all of us.

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I actually made a gluten and milk-free white sauce yesterday - and no-one even noticed! I love it when that happens. 😂

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Well half our meals are vegan, and we're not vegan....it's just stuff we like.

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Ruthiepegs, you are not "...one of those annoying people that we all dislike so much." I think you are a wonderful woman who wants to inject vegetables into your husbands poor diet.

I was a vegetarian before my RA diagnosis, and my husband was a junk food junkie before his RA diagnosis. He was a sausage and brick of cheese a day junkie. He didn't eat veggies he would call them, "Vile Weeds"

So.... for years he would suffer on/off joint pain in a single joint. Doctors thought it was gout, but unsure. A perscription of Naproxen always made the swelling disapear.

Well one time Naproxen had no effect on his single joint swelling and all of a sudden 6 joints began to swell & ache. Blood test results showed a very high RF factor and thus his journey into RA & meds.

Anyways during the year of RA & ra meds, he began eating vegetables because that's all I would feed him....and he was in so much pain to go out and buy his daily brick of cheese & sausage...lol....so he was forced to give up his absurd amount of daily sausages & cheese habbit. He was able to drop the RA meds (with the guidance of his rheumie) and he has been RA free for almost 2 years now.

Turns out he never had RA, his diagnose is psuedogout. Psuedogout is autoimmune, but can sometimes be controlled by eating healthy, Hopefully diet will keep his psuedogout at bay forever.

My husbands story makes me think about a popular diet cure program that is sold world wide. The onwer of this diet has medical documents of his RA & photos of him with RA,, and now this person claims to be RA free,,,, I also have all the medical documents & photos of my hubby's year of RA. My hubby can also claim being RA free because of a change in diet....but we have morals and we could never make money off the suffering of people that have an illness. My hubby is RA free because he was missdiagnosed, I think the owner of the "RA diet cure" was too.

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“Vile weeds” - that really made me laugh. 😂😂. I’ve never heard of psuedogout before. It’s great to hear that healthy eating is keeping it at bay.

I do know what you mean about people who exploit people with illnesses - they really don’t have any morals and only seen to be in it to make money.

We live in Germany, I’m English and hubby is a lovely Kraut! We’re “surrounded” by all types of processed sliced meats and sausages and of course, beer. 🍻 He takes so much medication for RA, plus painkillers - but giving up beer completely is not an option for him, as he says he likes the taste - plus it’s so cheap here! He has cut down his beer consumption though, so that’s a start. 😊😊

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Hallo, Ruthiepegs! 👋 Found Dr. Douglas Lisle's insights ('The Pleasure Trap' healthunlocked.com/nras/pos... ) very helpful. Don't know if it might be of interest (or of use) to you & your beloved? 🤔 [His understandings helped us significantly. 😌 ] Very best wishes to you (& your sweetheart 💏 ) for continued improvement & good cheer, kind lady.🙏 🍀 🌺 🌞

.

🎄 🔖 🎁 🎅 ❄️ ☃️ 🌨

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Thank you so much for the link - we’ve just watched it and now I understand a lot more the “why” it’s been so difficult for my hubby to change. I think it will help him a lot.

😍💕😊🤶☃️

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Exactly. I eat healthily 90% of the time. Just hate people pushing me thinking they’re helping!!!

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All l can say in reply is you are losing bits of yourself as time gos on and you try to make yourself happy by doing different things that make you happy. Would these same friends like to have what you have got as l would not wish this on anybody would they say stay with you in the middle of the night when you are in pain!!keep doing what makes you happy and let the world go by all the best

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You have to stop listening to the crap that pops out if people's mouths. Folks are always experts...until they get sick themselves.

Of course a healthy diet is important, so is a healthy weight. I'm over weight and realise absolutely that something needs to be done. I'm working on it! To be honest I haven't always taken the best care of myself, and I regret that now. If you shovel all sorts of rubbish down your throat it's going to have an impact.

Whilst I don't think any particular diet will cure RA or PsA in my case, overall it makes sense to eat well. I don't need anyone to tell me that, and I hate Evangelical types of cures.

We all have choices. What I, or you choose to do with regards to medicine, diet, exercise etc is entirely personal.

Personally I think what other people think of me, the way I run my life and treat my illness, is none of my business. They

Can think whatever they like!:-)

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I agree people have all sorts of ideas and if these work then why do we have prescribed medication that cost the earth when it’s all down to diet and vitamins

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I should say...I have radically changed my diet. There are some foods that certainly cause issues. For me grains are a big problem. You just have to find the things that work for you personally.

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I’m trying a low carb diet. Hopefully it works

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Gluten and grains. I hear this s lot so I think I must try and it down on gluten rich carbs. X

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I have IBS too, so helps with that.

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I totally agree. I am also about two stone overweight and know that it Impacts every aspect of my health. I’m not saying that being overweight has given me the rheumatoid arthritis but I know it definitely doesn’t help my joints having so much weight on them. I know that gluten is quite a problem with a lot of people with autoimmune disease so I’m going to try giving up that for a start. X

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Hi Jules

Yes eat what you like in moderation you know what your doing, I was told by the consultants yes to try and loose weight.... But the medication your on also makes you gain weight... so I said where do we go from here? He mentioned there’s something we can do... ha I’m hoping a magic pill cure my RA and be slim 🤣😂 best of luck and ignore the do goodies who don’t understand your pain xx

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I have been advised to lose weight but it’s a losing battle

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I get this all the time at work by one of my colleagues. I went into work yesterday with an egg for lunch trying low carb diet.

Always saying she needs to diet. But critical about what I’m eating.

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Well it’s not rocket science but only having an egg for lunch is not going to help you lose weight. Yes cutting carbs is good but don’t starve yourself. X

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Thank you for your concern have carbs at breakfast and evening meal. Just trying to cut them down. I’ve put 5 stone on since this illness. Consultant advised to lose weight before my next appointment.

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Normally I would agree with you but at the moment because my husband has had a huge operation and now the weather is lousy I’ve not been getting out for exercise - normally I manage my 10000 Fitbit steps - I eat masses of veg and few carbohydrates other than from vegetables but my diet has gone totally to pot and I know I am not making good choices and I also know I am not feeling my best so I think your ‘well meaning’ friends are probably correct. Although I wouldn’t go for special diets or miracle cures, I wouldn’t dream of stopping my arthritis medicines (although if they were making me feel ill I would discuss it with my doctors) and my 10K steps might be too much for you.

Listen to your acupuncturist.

I know I’m in pain and feel exhausted all the time at the moment and I know it’s all the sugar I don’t normally eat and the lack of proper exercise.

In fact told myself in the middle of last night I have to get a grip and get myself back to how I used to be. No junk food and lots of exercise as for giving up my hydroxychloroquine, it didn’t even occur to me.

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Hi Jules. I haven't the time or energy to spare to argue with "self proclaimed experts". My diet suits me very well and would be considered healthy by most. Still practicing my saintly forgiving smile. A murmured "that sounds interesting" and go my merry way. I practice moderation, weigh just under 9 stones and at 5'5' look slim. What I choose to put in my mouth is my decision. Hugs

J

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I'm afraid Jules you'll have to get used to well meaning (?) people trying to tell you they know better than you & your rheumatologist!

I have never subscribed to" eating what you should".... a little of what you fancy is my way of coping!

I now just smile at these amateur dietitians & say I'm trying xyz (make up something really daft), keep a straight face & watch them think I've really lost it.

Listen to your rheumy....once you find the right meds for you things will fall into place.No good comes from overthinking RD.

I know it's not easy when you are in pain & can't get on with your life, but time & the right meds.....plus a sense of humours...is the only way to go!

You'll drive yourself mad if you listen to all the quaint ideas people think will "cure" RD.....& stopping Dmards could have dire consequences for your joints.

A New Year is looming...let's hope 2018 will be the year you get settled on meds that suit you .

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Thank you. You are always so brilliant with your comments. Very wise. I just spoke to a friend who studied nutrition for 6 years and I thought she was going to preach to me but it ended up being a conversation about the mind rather than the body.

I have a tendency to beat myself up when I think I’ve eaten the wrong thing and let it linger and make me feel bad about myself. So yes, a positive mental attitude works wonders. Must not let negativity rule my life and I must truly believe that I will get a grip on this illness and I will get better. X

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Hi Jules......

I'm sitting here looking at the melting snow...with a huge jam doughnut in one hand & a capuccino in the other!

Dammit...I haven't been able to leave the house for almost a week.....so YaBooSuks to anyone who tells me too much sugar is bad for me.

Yes I know it is ...might as well live dangerously once in a while....life's too boring otherwise!

I do admit I'm not overweight, but my BP can shoot through the roof if I eat badly too often.

So spoil yourself sometimes, find food that is nourishing that you like but is not fattening & the weight will slowly go.....as long as the treats you award yourself aren't stuffed with fat & sugar like my doughnut!

I am a great believer in buying more vegetables than I know I will use, & make veggie soup every week in the winter...no preservatives, fat,salt or sugar, I use herbs for seasoning, but yummy & not fattening.

Living on any sort of diet you hate will just make you miserable!

When the weather perks up...walk.....I find it fascinating walking around peering (discreetly) into people's windows! You see all the sites you don't see from the car! I love being a nosey old biddy!

2018 could be your year to lose that weight Jules, & get settled on your meds! Go for it!

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Hi joules,

Lots of lovely comments here. I can only add to them, do what works for you. The worlds richest people have tried diets and alternative medicines and still lost their lives....

I find adequate sleep very important. Yesterday I felt rotten after only getting 4hrs sleep. Last night I had 7hrs and feel much better today.. After 22yrs of RA I am still experimenting.....

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Sorry, i'm on your side. At the end of the day you go with your gut feeling as your body will tell you. Have a good Christmas with an even better New Year. Take care xxxx

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Agree with all the comments so far - it stands to reason that being a healthy weight, eating a balanced diet and being as active as physical limitations allow will give some benefit to any health condition, even if it just makes you feel generally better in yourself. But there ain’t no magic bullet - yes, some people find certain foods either help or aggravate their condition, while not affecting others: it’s all very individual to each person.

Maybe the next time someone starts spouting this kind of nonsense, just humour them for a bit and say you’ll discuss it with your rheumatologist, then promptly change the subject!

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Yep - But only once each - After years (about 7 now) of constant research, I don't react too well to being told what to do by someone who knows less about my disease than I do. If they try it a second time I gently tell them that when I find the right answer I will let them know and cut that line of discussion off.

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I prefer making up some really daft diet & swearing it is curing me. That convinces these idiots ( who know nothing about nutrition) that I am certifiable & they either give up or try the diet themselves....so make sure you make up something that tastes really disgusting!

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I tried the egg and grapefruit diet when I was 19 and about as big as a medium sized twig.. ha ha - That would be the worst one I can think of that is actually edible - ha ha

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I'm so sorry. I don't have RA but do have a diff autoimmune disease. I often hear "I cured mine by..." eating this food, excluding that food, taking this supplement, stopping this prescription, juicing, etc. All YOU can do is what you feel is right for your life and your situation. We should be able to enjoy some things in spite of our chronic illnesses.

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Totally agree. It’s also not feeling bad if you have slipped up and just moving on. X

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I believe that not feeling bad after slipping up is really really important. I don’t have RA (thankfully) but my hubby does. However, I’ve always been interested in healthy eating. My sister thinks I’m obsessed and am weird with food! 😂. Maybe I am but so what! 🤪.

What I wanted to say is that since July this year I’ve taken to clean eating (i don’t eat animals) on an 80-20% basis. So when I don’t eat clean, I don’t beat myself up. I don’t consider it as cheating, it’s just life. It’s so much better for me and I’m much happier! However, I do need to have control over my food, it’s the only area in my crazy life with my crazy family that I can control - but I’m happy being like I am. 😊

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Dear Jules13,

At the very early stage, I visited both the western and traditional Chinese doctor. The Chinese doctor was graduated from Beijing and teaches in one of the local college over here. When I showed him the blood test and the X-Ray reports, he told me to stick to the western treatment and not to go for both.

He said that RA needed a long term treatment process and there was no easy treatment. So I stopped visiting him and focus with my rheumy since. I am very happy with what I achieve though there are many friends around to tell me this and that. I would say they have a good heart to see us well but they are not rheumy and they do not equip with the knowledge to tell us what to do. Therefore I do not just accept the idea of natural treatment without DMARDs.

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Amy-Lee, well said. I agree!

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I second that.

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Well written Amy

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I just sing la la la to myself and switch off if I ever get such a lecture. They don't have the condition so it's easy to say give up your meds. I do eat a vast amount of things in the alkaline category but I do eat chocolate and cheese.

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When one is pushing hard on the so call "natural way", he or she usually is promoting his or her own products for business purpose, you are right to juts sing lalalalala....hahaha

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Yess! We usually see a very loooong message then at the foot of it is a link to their product! 😄 However I am interested in things like the CBD oil cream which has relieved my knee of soreness in the soft tissue.

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It is our wisdom to decide which is good for us instead of believing all which may only cost us more money without adding more value to our RA body.

Sorry to say that I stick to my own opinion and many have their own agenda behind.

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Agree and yes I am very wary of those pushing ideas on me. We say what we find is good for us and has worked well, but would never expect it to be suitable for everyone. I've been told by my sister in law (the very odd sister in law who often has crazy notions) that I should give up all medicines. I didn't reply to her!

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True friends take you has you are not what your shape or size is Hun.If can’t take you for you then not true friends at all.I don’t eat on my pills I pick but at end of day would you want to be thin and in pain or bit over weight and on pills with a bit pain relief.

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