Hello, I've just joined today 🙂
I wanted to ask if anyone has has a positive impact by changing diet or cutting out food groups that has made a difference to the disease?
I was diagnosed in summer 2019, have been on benepali for 10 months, caught an infection last month & its sent me into a flare up, now only on steroids until I am allowed back on benepali.
Hello and welcome to the group Mermaid, I hope you find it useful and supportive.
There have been posts regularly about diet and RA, if you use the search box and filter for NRAS they should come up. I personally have never found what I eat has any impact on my RA.
If you haven’t already found it the NRAS website has lots of useful info. Here is a link to the part about diet but there are others covering various aspects of life with RA.
nras.org.uk/information-sup...
Feel free to join in, ask questions etc as there is a wealth of knowledge here from newly diagnosed to people who have lived with RA for many years 😊
Thank you for your reply. I find it odd that if diet does claim to make a difference, why its not mentioned in treatment plans. Ive googled so much and its all conflicting information, but I know everyone's journey is different. Its just so nice to be able to ask questions to people who understand what we are going through x
Diet isn’t mentioned in treatment plans because there is no clinical evidence anywhere in the world that has proved any collection of food will significantly help,RA.Of course some people do say if they do/don’t eat certain foods they feel better.....so the way I see it...is eat sensibly whatever healthy food you enjoy,& listen to your rheumatologist re your medication,
Thank you! I'm sick of people asking me if I can help the condition by eating anti inflammatory foods ect. I feel like they are googling information on my behalf. I keep replying with, im on a treatment plan under rheumatology so im taking that advice. Im am trying to eat better, as the steroids are making me feel hungry all the time and I've already put on so much weight in the last year.
I used to make up really horrid frog & pond water diets...& tell people they should try it because it “might help your skin”...... when there was nothing wrong with their skin! That used to shut them up beautifully ....I sometimes think some people think RA is associated with loss of common sense the really patronising suggestions they come out with.
But I think little bit of what you fancy does you good ...within reason of course!😅
I love the idea of the frog and pond water advice to people who know everything!My problem is my friend who keeps saying she doesn’t like taking tablets.
I don’t either* I have to take approximately 20 plus tablets daily.”
I’m not seeing anyoneatthe moment cosof pandemic.
I’ve decided that next time she mentions it,I’m goi got say that the tablets are keeping me alive.
Tak care
Well I’ve been “taking the tablets” for over 20 years for RA... and once you get the right combination you can lead a really nice life.....tell her that......
What a lovely positive reply. Thank you
It’s all in the head Flipper....accept it’s going to be a long haul,& just get on with it was/is my attitude.There are ups & downs....so make the best of the ups & spoil yourself on the downs.
Despite losing my job due to this I'm learning to go with the flow and not stress whilst desperately applying for jobs.
Oh my, im so sorry to hear that. Do you mind me asking... was it due to the current climate with covid? I'm currently at loggerheads with my employer as they seem to think I'm not as ill as I think I am 😳 I've been off sick for months & when I'm due to return im being taken to disciplinary. Id be interested to hear if anyone has been in a similar situation. I think the stress is making me feel even worse whilst being stuck in x
I became ill overnight last Feb.Went sick, got diagnosis April ra.
Put on lots of meds so put on shielding.
Rheumatologist treatment was delayed due to covid. Finally got biosimilar which shows signs of improvement but they said can't do my job nor can I have part time when we'll enough.
Told to take all annual leave until 3rd meeting when I will no longer be emoyed by NHS.
Could fight it with union but don't have the energy, I'm trying to get this Flare gone.
We can fo without this worry whilst ill.
Similar to me no conversation about anything else I could have done for example office only or maybe reduced hours xx hope you’re sorted now x
We're you well enough to get another job 👍
Hey wasn’t very well at the time at all had only just got off crutches but was lucky enough to gain my new job where I had temped previously and thankfully can work from home x I don’t know how well I’ll
Get on if they go back to the office tho x I have to have a nap at lunch currently 😂😂
I know, the fatigues worse than pain once you're mobile again.Thankfully I started biologics, I'm on 4th jab and I can actually stay awake all day now, even if some days I don't actually do much. So glad you got new job. You sound like a fighter so I'm sure you'll always find work from home if needs be.
Think your spot on with the fatigue 💤 glad to hear your on the mend x I’m sure you will find a job soon x sending lots of luck your way x hope it all turns out for the best for you 😀
Thank you that's really kind.I hope that you find some comfort too
🤗
Keep me posted how you get on
Hi, I've just seen this post. I was off sick from my full-time busy job in the NHS. I suddenly developed symptoms one afternoon and struggled on as I got gradually more symptomatic with no one knowing what was wrong with me. I was repeatedly sent to A&E by my GP and had various investigations and was misdiagnosed with PMR (polymyalgia rheumatica). I was given high dose steroids, which didn't really address my immobility and other symptoms. I was off sick for 10 months when I was eventually given DMARDs, which enabled me to return to work part-time. During my period of sickness, I was repeatedly called in for sickness reviews, which were always highly stressful and upsetting. I kept being told that I needed to get better and get back to work! I could hardly manage moving around the house, let alone get back to work. Two years after first developing symptoms, I was eventually diagnosed with RA. I have long-term damage to my joints due to several years of chronic inflammation, and I also have irreversible side effects of the long-term steroid treatment. I am now working full-time again, but I still have periods of difficulty and flares, but I appreciate I'm lucky to have a job. Stay strong, and hopefully things will work out for you. xx
That is a really big down flipper. But maybe it was meant to be & whilst we are all at home at a loose end...some other employment may pop up for when you can work again.....or the same type of job but better!I had to give up my first choice of employment due to illness (not RA,)
And after a year out doing a job I quite enjoyed, but didn’t want to spend forever doing ....I found a job I stayed in for 20+ years...so soldier on...don’t over think everything ....A lot of people are going to be jobhunting and a lot of entrepreneurs will need to employ people.....or you could be that entrepreneur & start your own business..... so be optimistic !🌸
I know, I've been racking my brains as to what my skills are..Only worry is that my records will say dismissed due to ill health... Not employee of the year material
😆 Never mind, I'll cross that bridge when I get there. Thanks for reply, don't worry be happy...
If I were you I would get an appointment at the CAB ....they have solicitors who specialise in employment law and there may be a way to have that removed from your record.Presumably you weren’t consulted as to what was written on your leaving details and there may be a way to have it rephrased.
A well worded, considered letter from a solicitor often wakes up employers and it’s always worth a try.
After all you have now been diagnosed and once you are settled on your RA meds things should look up.
You probably won’t be considered as a long jump gold medal entrant.... but there will be something that you can do better than somebody else so you will get the job!
Go for it...but get those meds working first.
Thanks, I did mention my concern re wording of reason for leaving and they said an employer would still want me.. Just fobbed off by HR. You're right though, I'll get this Flare down, get meds that work and use my brains as to how to get work.Thank you
Have you thought about self employment? Or working from home? All my team are remote and home-based. I even have people in Mallorca and Bulgaria. There are so many opportunities out there and as AC said, you have the opportunity of time right now to have a look around.
I understand it's hard for you, but from a business owners perspective, there is no way that I could carry the wage for someone for months on end as it would impact on everything else, including the price our clients pay. Sometimes, we just need to be philosophical.
Have a look around on places like LinkedIn etc...and start putting out some feelers. You never know, this may be the best thing that could have happened
Yes, you're right.Thank you so much for your help.
Hmm Happykindagal maybe there’s lots of opportunities where you are but here there are very few for someone with a disability and physical limitations, however much they want to work. Finding something that you can physically do for any length of time is frustrating and depressing. Apologies for bringing my misery to the post 😞
Okay. I run a business with severe RA. All my team work remotely. Two have crohns, one MS and it works for them. There are many remote working opportunities out there right now with companies like Sensee, Arise, Giffgaff, and many tech opportunities too. Just need to look around and see what there is. They're there for the taking 🤷♀️
I honestly haven’t just been sitting waiting for a job to find me. You have to be able to do the job you can’t just take them🤷🏻♀️
I was only trying to give you some positivity here. That humans are amazingly ,y adaptable and can do things that they never thought they could.
There will be jobs that you can do. Physically, you would be able to work for me as my other team members mentioned above have proved that they can. Another of my team has dystaunia. She has carers twice daily. Unable to use her hands etc...works with a headset and voice recognition software and is amazing. She is an integral part of our team and is treated no differently to anyone else. For her, it’s important that she does something and feels the same as anyone else and doesn’t dwell on things she can’t do.
You can do this ❤️🍾
I was diagnosed last March after being really poorly at the beginning of March and then the pain in my feet made me end up on crutches I’ve been really lucky and a dr referred me really quickly to rheumatology and prescribed me Prednisolone which made a massive impact During this time I was furloughed from my job which was in an office but also running all over and lifting product in a warehouse fro 5kg to 25kg I had to let them know I was not too good and after a couple of months of asking how I was they made me redundant I guess I knew I couldn’t have gone back to doing that job but was disappointed in them and felt was due to how I was etc anyway waffling in now 😂😂 I have a new job and it’s all worked out for the better so what I’m saying is sometimes things happen for a reason so hang in there xxx
I love this,thank you
It’s a good thing from day one to decide although you have been unfortunate to be diagnosed with this disease, you are still in charge - don’t let it take over your life- because that way you are in for a lot of disappointments.It’s not easy when every time you move you wince...but no matter if you are diagnosed at 20 or70....still remember on those really rotten days tomorrow is going to be a better day....don’t just sit in your Poor Me chair & expect a miracle to happen.
Right now we have all got to believe that... because we are all having a rotten time.
👏👏👏👏👏👏👏
Can I ask what everyone's rheumatologist has them on for RA? I'm 10 months out diagnosed RA and mine has me on Hydroxychloriquin and Methotrexate. Anyone have long term experience with those drugs?
We are all on different drugs depending on the type & severity of our disease.I was on Methotrexate very successfully for 7 years...many are on it for much longer & others don’t get on with it at all, & don’t continue for long.
Your Rheumatologist prescribes what he/she thinks will bring about the best result for you...so unless you have any unacceptable symptoms ...stick with the meds you are prescribed.
Hydroxy & Mtx together are tried & tested drugs with which many people have long term success with. ...hope you do too.
Unless you are having nasty side effects ...don’t read on here what drugs others are having success with & think you’d like to try something else.
With RA it really is true if it ain’t broke ......don’t try to fix it!
Thank you so much for your response!
Feel for you, went through the same tripe of bless sincere ones wanting to help with at times weirdest of advice. Worse ones are a married couple who are on "plant diet" and are evagelical about us/ me doing it . 🙄
Fortunately they're in a different country to us so I can ignore their sermons.
I happen to be someone who naturally had a great diet mediterranean background, didn't stop me developing RA.
Reality is as individuals what triggers RA is individual too.
In the end we can onlyapply what helps us most.
Onwards and upwards
Yes well meaning family... my dad bought me lbs of plums as he read they were good for arthritis.. didn’t cure the arthritis but did cure constipation due to painkillers 😁
I e always eaten a healthy diet in the main.When diagnosed with auto immune diseases and lung disease Idid t eat much ,due to nausea.husband said I lookedscraggy.
Now Immunosuppressants dose adjusted can eat.
So am happier and have more energy.
Hi AgedCrone. I love that. I often think the same. People love to give you advice about what to eat, what not to eat, blah, blah. I’m sure they mean well and I often wonder if they think RA/RD makes you lack common sense too. 🤣🤣 I hope you’re keeping well during these strange times. Nic xx
What is frog and water diet?
Believe me you don’t want to know...it’s a disgusting spoof diet you make up when “well meaning friends “ think they can cure your RD by describing how their auntie was cured by something or other.....you tell them you eat that diet.If you are newly diagnosed you will get plenty of that advice..best reaction is to gracefully thank them and then IGNORE them!
Has it been effective to others tho?
It’s a JOKE, if you don’t understand the word spoof I am sorry..but we do have a sense of humour here.......but just to be sure you don’t spend hours looking for it in Tesco’s...there is no such thing as a Frog & Water Diet!Unless of course you catch your own Frog & start from there.
You and me both. I know it is well meaning advice but it’s no good. We should eat sensibly with a varied diet. It won’t hurt ... it is no cure🥰 I am on 30mg steroids... have gained 8kg 😥
Same, wouldn't be walking without the steroids but fat is deposited all over legs stomach face. Will tackle weight when Mt meds are sorted as only diagnosed last year and flaring
Hahaha - the joy of being relatively newly diagnosed. Everyone has an opinion. But they are (mostly) trying to help. I've learned to say thank you and nod and smile and change the subject.
The people that absolutely get on my nerves, are people flogging Forever Living/Just Juice and a myriad of other MLM products. I did tend to meet more than most as I ran business networking groups, and for a while, there were many members that has MLM 'businesses'. They are not doing it from a place of love and concern, but purely as a monetary benefit. I recall one particular person that was really getting on my nerves. He said to drink this aloe vera drink from Forever Living and my RA would be cured. I was so sick of him, I bought it. £60!!!! Of course, it did nothing. I said this to him and his reply was that it didn't work as I had continued to take my RA meds and should stop them. Okaaaaaay Doctor man that works in KFC, I'll do that then.
Of course, the worrying thing about people like him is that some people that are perhaps a little more naive and will try anything, will stop their meds...just in case. Worrying.
I try hard to ignore the diet and miracle cure advice I get foisted upon me but it's hard! Inside I am seething.also, I am not entirely sure that it's well meaning. It smacks of
"you're doing something wrong: I have something here that can fix that: I know better than you and it's your fault that you're ill."
I have been quizzed endlessly by one relative about "I wonder where this all comes from? Why have you got it? Strange isn't it?"
The most stupid comment was "Do you think it was because you were a vegetarian when you were a teenager?"
I wanted to reply that it was more likely that you (my mother) fed me a load of rubbish as a child - Nutella on toast for breakfast (no wonder I have no teeth in the back of my head.
...going down the 'mother' rabbit hole...must stop now...
I agree with you. It’s nearly always a case of take these tablets and then take some more. I gave up coffee and alcohol and went 80% vegan and it made a huge difference ! I haven’t felt that well for a long time and my CRP dropped to 12. I do have the occasional coffee ( and then think that it tastes of cigarette butts) and glass of red. Lots of fruit,veg and beans and lentils etc. See how you get on.
I haven't read all others' replies, but I can assure you that diet plays a massive role in the severity of your RA. Eliminating dairy is the first big step, but eliminating all animal products and vegetable oils is crucial. This is a Wholefood plant-based diet and it can help with all manner of evils, RA being one of them. Some good places to start are Dr. McDougall's website, the Paddison Program for Rheumatoid Arthritis, the How Not To Die book by Dr. Michael Greger, the China Study book by Dr. Esselstyn, etc. Google WFPB for RA and you will find loads of information.