Right, we all know this disease is ugly, horribly painful and debilitating and quite frankly not at all welcome! However, for those of us who have the diagnosis ( seronegative or seropositive) we've got it and it ain't going anywhere! It's alright for me at the moment because I'm not presently debilitated by a flare up however, surely apart from the medication we've been prescribed ( I wouldn't go against conventional medicine) a positive mindset and healthy life style has to contribute towards living a more fulfilling and happier life? I totally understand that there are those on this site who have multiple problems so please don't think I'm decrying your situation. But we should be giving good foods a chance too. I'm going to try everything I can to battle this bloody disease starting with a more healthy eating regime. Has anyone read 'the auto immune system' by Dr Amy Myers? I haven't yet! Though I saw a video clip of her discussing the importance the best foods to eat but more importantly the best supplements to take. Apparently one of the main supplements that our body produces naturally for a healthy immune system is extremely low in those suffering with auto immune diseases. I'm going down the path of non conventional medicine too - acupuncture, chinease herbs, etc. Has anybody else tried it?
I shall not be defeated by RA!: Right, we all know this... - NRAS
I shall not be defeated by RA!
Good luck Jaxine. It's always good to start your journey with an open mind. Yes I am familiar with Amy Myers as with all the diet gurus for treating RA. Looking forward to hearing about your experiences. Keep us posted.😊Simba
Do try anything you think will help you. If you search on diets on this site you will find a good weekend's reading. I think between us most eating regimes have been explored here.
A good % of surviving RA is in your head......once you are settled on a drug regime that helps you...don't drive yourself crazy thinking what else can you do & don't blame every strange symptom on the RA drugs.
If you do decide to drastically change your diet, run it by your Rheumy team before spending out stocking up.
Personally i eat good fresh foods, with the occasional naughty variation, I have a glass of wine most evening & 20+ years down the Rheumy road I'm doing fine......I don't analyse every RA symptom, just deal with them as they arise.
God luck in finding your magic pill very soon.
I admit that I'd not touch Chinese herbs as so many risks involved with what is in it, and I'm Celioc and being GF has made no difference at all. But I do think that weight and a healthy lifestyle does make a difference not just for people with RA but everyone else. Its interesting as RA is in the fossil records and then there was no 'modern life style' so it must be down to a huge number of variables. I don't think there is any miracle cure but a warm climate does help. We have at least 2 warm breaks year and know that whilst in a warm climate the symptoms do go but it might not just be down to heat but relaxation and being waited on.
I do treat myself as it makes me feel better, eye brows threaded and died, pedicure and maincure the facial and massage always makes me feel so much better. Please be careful in mixing prescription meds with 'herbs' as it was one thing my Renal Consulatnt was most concerned about anything bought off the internet etc. And if you do suspect gluten carry on eating it and get a blood test as Celioc is only detectable if being eaten as the antibody switches off and it is vital to know if you have it and its not just a lifestyle choice which is great as well mind. Do you or did you have RA in the family history? I did so I suppose it was'nt a shock really.
My father was diagnosed with Crones at 26. In those days ( as with RA) they knew very little. When he experienced a flare up in the gut they would cut it away. His stomach looked like a map of England. In addition to this taking powerful medication and strong steroid drugs over the past 50 years caused both his kidneys to fail. My mother donated one of hers to my father, unfortunately 1 year after his transplant my father got diagnosed with dementia. After 7 years suffering he died October last year aged 82. His death hit me very hard.
That is so sad my mum had Dementia but lived a good long life, fortunately she never lost her sense of humour I still miss her especially when I was ill as she'd have said ' many worse off girl" And she could really cook too so emergancy ractions of shepherds way would have been home made not Waitrose. lol
Seriously I do think stress plays a part so do take time out and be very careful not to take on too much. Yoga might help my DIL teaches that Hatha, Hot, Ashanga, and on paddleboards and I know its good for me but I just do the stuff with a mat no wetsuit or hanging bands thank you very much Helen. lol (DIL)xxx
I personally believe that doing everything I can to maintain a healthy body has really helped a) tolerate the drugs b) make the drugs as effective as possible c) have the energy to do enough exercise to support my joints and c) is hugely important emotionally. Knowing that I am playing my part in managing this disease is important to me, and I think also makes the rheumy pay more attention to helping me.
And it's not just diet. For example, no point spending money on expensive stuff if you still smoke. And one can throw all the supplements you like down your throat but if the rest of one's diet is rubbish and one is very overweight then they are less likely to work - as are the conventional drugs too. No stress, sleep and exercise are as important too.
I've put on a few kgs over the holidays, and I can really feel it. I'm not flaring (despite loads of wicked food and drink), but my knees and feet are telling me that they don't appreciate it. And I had an MTX hangover this morning for the first time in months. And
I've tried all sorts of things with very limited success. So no longer bother with any supplements apart from Vit D, and have a very good and varied diet. Lots of plants and fish, and very moderate amounts of everything else. Food is hugely important to me, so my idea of misery is having RA and limiting myself to a restrictive diet.
Acupuncture is fine, but I find a good physio more effective. And I'm very cautious about anything where the ingredients, provenance and safety testing are not totally clear.
However we each have to work out what's best for us as an individual. So if, for example, eating only yellow food works for you then go for it!
I must be coming across here really shallow in terms of being 'newly diagnosed' so many people here gave been living with this disease for years and a multitude of other conditions however, as you said it's our individual unique journey and we will travel that path in the same unique way. I'm 5 7' weigh 9 stone, my diet has always been varied, however loved my red meat and cheeses. I believe everything in moderation however, since this diagnosis I want to fight hard! If that means only eating anything pink I will. I do believe you should work in partnership with your immune system I've always been a bit of a cynic when it comes to alternative therapies etc but I've seen my 40 year old friend diagnosed with the most rare auto immune disease who within 2 weeks ended up in a wheelchair. But 6 months on with medication but supplemented with alternative therapies and plant based food She s walking and now driving. 4 years ago her husbund had his arm amputated suffering from cancer and was told it was terminal, through diet and agsin alternative therapies has beaten his cancer. It's certainly worth a massive effort to seek alternatives. Ask me how I'm doing 6 months time😃
Hold on to this. There are so many things to learn about our immunesystem and the metabolic troubles we have in RA, so many things we can help our body with. Be sure to also understand how the meds effect your body and how you can ease their load on your system. And do not forget to check thyroid and hormonal balance. Very central factors in supporting our immunesystem. It's really all about learning and experimenting. It took me three years to get some kind of an holistic picture of my situation. Yes we all have our own journey.Learning to listen to one self is the key, not to others.Take care.Simba
Can I ask how do you know you have had limited success with various supplements etc? Im hoping I'm just going to feel better in myself, stronger and more energetic , i dont expect to be suddenly cured. I agree it's bloody miserable having RA so to have to limit what is so pleasurable does seem a shitty shame !
Why do you need to limited anything? I eat chocolate, fudge, red meat meat, cheese (oh yes Cheese) but no gluten, I'd Look for proper controlled studies as if diet cured RA the NHs could save a fortune and it might imply that we are in some way reasonsible for our disease when in reality it is in my case anyway part of a bigger auto Immune disaster of genetics.
It's just there are certain foods that increase the risk of inflammatory problems do coupled with RA seems to make sence to avoid those foods! Not entirely of course everything in moderation. I've just watched ' What the Health" nothing to do with RA just how diet is important. Maybe just a combination of drugs, healthy diet etc. I always feel healthier on a healthy diet.
Diet can't cure RA, but it can make you feel better/healthier/ stronger. I have a feeling, perhaps wrong, that you have always eaten a pretty good diet so absolutely no need to change anything. And you might find it hard to imagine the difference it can make.
But from someone who got RA when I was living on a diet of ready meals eaten at 2am after a 16 hour day, and high fat or sugary snacks thoughout the day I can tell you that eating properly made a huge positive change. It did absolutely nothing for the RA, but overall I felt miles better in myself.... and it has continued to help.
Yes always a healthy diet, never eaten anything but good diet and so your right eating at 2.00am is not good. I've always worked for Government so could sit down, or go for a wander and 90 min lunch too. We have home grown stuff too. I get a lot of excercise, not at the moment because of kidney fatigue but normally walk or cycle a fair bit. I also swim and dance and ramble the RA has been treated very well up to 4 months ago and I long to get back to normal. I get fed up now as so mauch I want to do but its aday at a time for a while yet.xx
I totally agree with you -thank you
I did a lifestyle overhaul to start with, and since then I have tried things or excluded things one at a time for 4-6 weeks. None have made any noticeable difference. I'm currently about to try CBD, so I keep trying things and mayne one day I'll be surprised!
But it's not shallow at all! Taking on the reality of havimg a chronic disease when you have basically been a healthy person is a bit of a shocker. And you'll get there. Chances are you'll be a healthy person again, but just one who takes a lot of pills.
CBD oil is fantastic! Def helps with pain whether wishful thinking or otherwise.
How old were you when you got RA? Is that your only condition?
Mid 50's....have lots of OA too, and a dodgy heart valve, but otherwise only minor things right now - thankfully!
Yes I have OA on few finger joints, funny thing is I had a huge flare in the thumb lots of swelling and so painful, when it died down I was left with a bony nodule around the joint is that RA or OA? I assumed RA due yo the burning painful flare.
Not necessarily, OA can present in an imflammatory way.
God really! Bloody hell I thought OA was not so painful, my hands are going to look horrible in a few years!!
I have found CBD oil has helped me. Either orally or aplying topically to the area hurting.
Very wise words in this conversation thread. You definitely don't need to lose weight.. You eat healthy. But I / we totally get the urge, the need to try to help yourself through diet, holistic therapies. Believe me, I was right there too. ( a canny while ago though!)
Its good that you are feeling positive, and wanting to fight this.. That's what you need. That determination. Keep it hun.
Take care Jo xx
Eat well, sleep well and research thoroughly any medical papers. Its interesting to see the outcomes of some research papers that favour certain supplements are funded by the people who make the supplements.
Just my opinion, but a word of caution. I 100% believe in acupuncture for pain and inflammation and have had good results myself, even spent some time in Beijing learning about it, trust me their needles are long!!
However, I would be extra cautious with Chinese herbal medicine. I'm sure some people swear by them but I have looked after several people who have had to have liver transplants as a direct result of Chinese medicine.
Whatever route you take, good luck and you are correct a positive attitude does help. Just a bit hard to be positive when you are so debilitated by pain sometimes.
My staples are ginger, oily fish, tumeric, cider vinegar, bone broth, enough veg to open a green grocer, no caffeine or alcohol, low carbs and grass fed meat with lots of protein as my muscles are so bad. No sugar and no dairy. and I'm looking into mushrooms. I change one thing at a time so I know what is or isnt helping. If I change everything all at once I have no idea.
Good luck!
Cider vinegar is supposed to be fantastic!!
Definitely diets over the years have helped, not always sustainable, Chinese meds a total waste of time for me. An optimistic attitude has helped me, having my hair and nails done, keeping slim and enjoying buying clothes have also helped. Exercise when possible. A good supportive family and friends also. Now days being older and so many other health issues, just getting through the day and doing as much as I possible can and giving in on things I can't. Go for what you think will help you, never a waste and all best wishes. X
Hi Jaxine i have had RA for the past twenty five years . I have been on so many types of drugs but RA always wins hands down . there has been times when i felt i could not deal with this illness anymore. But i have never given in to it. i am careful about what i eat i have exercised when i can . I have been put on a new drug yet again and gained over a stone in 9 months . Despite struggling with walking i walk my dog everyday as far as i can depending on my limitations that day . I refuse to let this illness win even when it has got a good hold of me . I make a big jar of ginger tea everyday as ginger is very beneficial in so many ways . i know it is hard but i find staying positive has helped me . i am fortunate in that i was blessed with an always look on the bright side attitude . Everybody has to find their own way of coping with any of these life changing illnesses . So i wish you the best of luck . go for it girl
Good for you great fighting spirit, especially after such a long journey.
You've got the right attitude. Fight it with everything you can. Personally I'm doing supplements, brand new healthy diet and when possible getting to the gym. Trying to keep a positive mindset. Acupuncture can be very helpful. I am very sensitive to it, but do go regularly. When my joints began to get inflamed I told my acupuncturist to hit it hard. I go through what is not a typical response, but called a healing crisis. Whatever it is, if it's a big problem for me (constant sinus infections when I first started going which I no lunger get) I feel wose for a day or two, be t it's part of the road to getting batter. It can wipe me out. So when he focused on the inflammation I went through that. Was feeling horrible for 5 days. Got better for 2. Got another appointment requesting a lighter treatment, which knocked me for about 4 days. I'll be going back, but must get some things done before I can allow myself to go through more"healing crises". I do believe it will help me tremendously. I write this last night response because although most people don't have such dramatic responses some do. It is proven to help lots of people with RA. Differing responses just like with meds. I urge you to try it. If you happen to feel worse for a day or two don't dismay. It won't last. If you don't get benefits keep going for a while. Sometimes it takes time. My mom has chronic pain. She went for some time and was going to quit. I convinced her to keep going and it did end up helping her tremendously.
Yes I'm seeing an old friend of my husbund s who is a trained physiotherapist but for the past 28 years now practices an holistic approach to helping with diseases. He s cured cancer patients, HIV patients and is widely recognised. I'm going to see him soon. My husbund has artheritis in his back has has since 25, at a time where my husbund couldn't even walk This man cured my husbund of debiliting pain he couldn't even walk.
Awesome! Wish you all the luck in the world!
Hi Jaxine, I was a fit and healthy 43yr old with a very positive attitude to life and living when I was diagnosed with seropositive RA. I have tried numerous medications and methods of pain relief, (and still am! )But in my case my RA has become more debilitating over the years,(I'm 64 now) . I still try to keep to a healthy diet and a positive frame of mind, but on a bad day, week, or month, I don't have the energy to fight it. I still think trying alternative methods won't hurt if its ok with your rhumatology doc, I'm trying cannabis oil and starting turmeric capsules at the moment, I think we all need a little light at the end of the tunnel at times, its what keeps us fighting this bloody rotten disease! I wish you all the best on your journey and hope something works for you! X
That s horrible that nothing has worked for you, I would be totally exhausted and beside myself after 20 years and no solution! Have you had any advice as to why nothing has helped you? Yes imvtaking turmeric capsules 3 times a day. I still have my days where I just can't get my head around being diagnosed with this, during my flare up I remember thinking if i was continuously in this much pain I could not live with it. Oh well life hey!!
Hi, some meds did work for a few years but then they become less effective, I've exausted a huge list. I'm on Cimzia at the moment and that's not working, ESR is showing 73 😣 never mind! see rhum doc in 2 weeks we'll see where we go next! Fingers crossed X
Fingers crossed too
What is Goop? Yea you're right!
Hi Jaxine
Google The Roadback foundation
Its the infection connection and arthritis.
I removed an infected root canal and was cured immediately.
The hospital changed my diagnosis from rheumatoid arthritis to reactive arthritis and said infected root canal can trigger arthritis.
Best wishes with your attitude you we'll find your own solution.
Last sentence should read "will find your own solution"
Also post RA I developed stage 3 bowel cancer and had half my colon removed.
I refused chemotherapy and now 3 years later I've been doing weekly infusions of hydrogen peroxide and intravenous vitamin C. I feel good and have plenty of energy now and no longer feel ill.
That's just how I am now I've no idea what the future holds but like you I had to research and find what worked for me.
Chin up keep researching.
I can't wait for the nhs NICE experts to say yes stop this or start that . It would be fab if just eating something meant it helped the inflammation and I'm glad there are still scientists out there trying to work out help for us. They have come a long way even in the 8 years I have been diagnosed.
Hi Jaxine, great post! Yup, got RA, Lupus, APS and a stupid amount of other arg (lucky me!) And aside from the conditions..the medication is total ar*e. However, I have been practicing Qigong (another form of TaiChi) which is at the heart of Shaolin health and longevity
Long story short, there is extensive research which shows it's efficacy in the treatment of rheumatic symptoms as well as other conditions (plus, 8 treasures congee and baobob powder is great morning power food)
I am not saying it's a miracle, but life is almost bearable
Keep your head up, you got this
God you poor thing bloody hell how horrible! Sorry to ask but what is A PS and arg? You look so young. You're obviously very strong in mind total respect for you.
APS is Antiphospholipid Syndrome. The blood clots more than it should (i hsve rivaroxaban daily)
I got pneumonia, pleurisy and double pulmonary embolisms in 2015 and the hospital thought it most strange haha. Through this, I got an amazing Haemotologist who worked with my Rheumatologist and here we are!
Before this, i was dx with fibromyalgia by another Rheumy in 2008.. (not undermining FM as it is absolutely brutal)
In short, my blood and immune system is medically managed. I am 43 and it was a lucky picture last year haha (just makeup and a wig.. no cosmetic surgery or procedures haha)
how do you use and make 8 treasures congee and baobob powder is great morning power food MoShui?
Slow cooker is essential and it is a lot of trial and error to find your ideal combination (i always add a cooking apple for the last hour and eat with apricots, goji berries, honey and almonds) i use the ingredients of the winter congee as well as millet grain and a little pudfing rice. There are great recipe's here strongspiritwoman.com/eight... However this is just the basics. I throw it all in a slow cooker overnight udually. It is a great food for when your meds make you feel terrible. I will try and post my best recipe as the original can be bland
What was the main supplement we are deficient in... you didn’t say what it was.
So I have posted quite a bit about an alkaline diet being the best for RA.
Cutting down on sugar, caffeine, alcohol and dairy has helped me hugely. I try not to buy any processed food (apart from baked beans) and have upped my veg. If you google anti inflammatory alkaline diet you will find a huge food list.
I also have changed the way I eat too. Your body does most of its good work and healing at night when you sleep and if you have a big meal at night it can hinder that process so I try to leave 12-16 hours between my evening meal and breakfast. I feel much better for it. So on average I will eat supper at 6:30pm and then breakfast at 8:30am.
Supplements I take turmeric, glucosamine, omega 3.
Sorry for budding in. It has been shown in studies that RA patients are very often deficient. in vit.3d, vitb, magnesium and zinc. Vit C is always good to supplement fights infections. Pregnelone is also a very good supplement. If you have problems witha asthma and allergic reactions supplementing with L-glycine is very good, calms histamine reaction naturally.
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