Diets: Hi! Has anyone tried certain diets to help... - NRAS

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Diets

Cydney96 profile image
18 Replies

Hi!

Has anyone tried certain diets to help control their arthritis??

Seems that sulfasalazine doesn't work anymore!, beyond frustrated, upset and not pain free!

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Cydney96 profile image
Cydney96
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18 Replies
Simba1992 profile image
Simba1992

Hi Cydney96,

I am on AIP diet, LDN and supplements since 2015. No RA meds so far. The diet made a huge difference in the beginning. Now I have been adjusting it a bit after finding out about underlying dysfunctions and deficiencies which in fact are quite common and too often bypassed in RA, hypothyroidism and estrogen-progesterone imbalance often make the symptoms of RA worse if not treated.

Richgirl profile image
Richgirl in reply toSimba1992

Hello Simba, I haven't talked with u in awhile. I may have asked u this before. I just don't remember. But what is The AIP diet? Do u follow it strictly? I think it's wonderful that you have done so well without meds. Hope this note finds u doing great. 💐

Simba1992 profile image
Simba1992 in reply toRichgirl

Hello rich girl😊Yes I am quite strict with the diet. Have however reintroduced quail eggs, nuts and rice. Have also noticed that good fats are very important for me as well as animal proteins. It's really funny how different we are. For me all vegetables need to be prepared and so on. A purely plant based diet would be a disaster for me! How is it with your diet? 😊XxSimba

Richgirl profile image
Richgirl in reply toSimba1992

Well, I get congested in my chest with so many foods that I'm skeleton thin. I can't eat dairy, sugars, even to much fruit. Nuts, wheat, grains, processed foods, white potatoes, rice, im sure there's more. Anyway have to figure out how to gain weight without all of that. ??? So I have to figure out something for sure. But as far as for my RA, I've given up a lot of foods that make pain. I'm thinking that the AIP may just be the one to try. How is that different from the P diet? I'm guessing more stricked. I know about the elimination diet so I'm sure I will have to keep doing that. Thank you for getting back to me. I'm going to go see a nutritionist but I'm pretty sure she's gona be confused as to how to help me. I'm just gona have to help myself. Really that's the best way. Have u seen any of Dr John Bergmans videos? I love him. Have a nice say💐

Simba1992 profile image
Simba1992 in reply toRichgirl

Hi again richgirl,

I have had the same problem with dropping too much weight. Now I have a good nutritionist helping me. I had blood work done which showed I had NO colesterol at all and no glucose with very high colesterol. Which told us my diet needed adjusting to my individual needs. I needed fat desperately my cells were not functioning properly. Fat IS in fact very important, good fat. What I would recommend you to do is look into Dr. Terry Wahls diet protocol. She has the exact amounts of everything you need daily. I think my problem was also that I did not eat enough. You need to get a daily nutrtiondense food everyday. Hope of some help.😊xxSimba.

Richgirl profile image
Richgirl in reply toSimba1992

Thank you💐🎉😊 I'm going to look in to that.🍇🍋🍎 have a beautiful day!

Simba1992 profile image
Simba1992 in reply toRichgirl

Dr Terry Wahls is a neurosurgeon who through her own research developed a diet that cured her far gone MS. She treats thousends of AI patients with her diet and has large research projects going on. Good luck and take care😊👍🏻xxSimba

Simba1992 profile image
Simba1992 in reply toSimba1992

I meant cortisol not " very high colesterol"😉

Richgirl profile image
Richgirl in reply toSimba1992

I did listen to some some things about her so far. She sounds really great. I wish she was near where I live. I know I can still do her diet but It would be a plus to see her. Thanks again. Have a great day.💐

KayEP profile image
KayEP

Is your rheumy changing your meds? They should definitely be giving you something for the pain - I used to be on high dose codeine, but when that stopped working I was given Zaldiar (not sure if that is only available in France) which contains tramadole and is VERY effective for me.

helixhelix profile image
helixhelix

It seems that diets work for some people with some types of RA, but not the majority. If you put diet in the search box top left of your screen you'll see loads of posts about it. It is a heated topic!

However, Sulpha is one of the mildest of the DMARDS so changing drugs may transform your life for the better too. There are a big range of them now, so discuss with your rheumy.

Eiram50 profile image
Eiram50

Hi

I agree with HH. Diet is a good starting point , alongside regular exercise ( when more able) but I think you need to speak with your rhuemy as if this is only your first medication prescribed, you may well be better suited to something else. To me, not to have this conversation, at the very least may prove fool hardy - you risk potential damage to your joints without the benefit of their assessment and damage done cannot be reversed.

Personally, at this point in your journey, I wouldn't suggest anything else.

Wishing you the very best going forward.

Marie

Cydney96 profile image
Cydney96 in reply toEiram50

This is my second medication, I just feel so alone with everything I'm going through. No one in my family really understands how I feel. I'm 20 and I can't dress myself, wash or brush my hair, all of my independence has been taken from me. I know there are going to be times where I feel like this, but it's just so so unfair that nothing seems to be helping me.

Every time I speak to my consultant or GP, I just feel like they think I'm being dramatic. But I'm really not, I work full time and it's all just getting too much x

Eiram50 profile image
Eiram50 in reply toCydney96

I totally get that. But hold On to the fact that it really can be trial and error, finding what works but once they do, it Can change your life dramatically.

I also understand that it can be difficult for people to reAlly and fully understand what we go through but I would say to you that it's important you find someone who is able to listen and offer you that support. The helpline hear seems wonderful and you might also Speak to your gp re some Counselling perhaps? It can all be so lonely and overwhelming and sometime just one person hearing and acknowledging that, helps a lot.

I'm glad you've found this forum as it is full of knowledgable, compassionate and understanding folk.

Take care you

Marie

Witness2 profile image
Witness2 in reply toCydney96

I'm so sorry you feel alone with all this. The symptoms of RA are wretched enough without feeling you're misunderstood. Have you read the NRAS book on emotions and relationships? You can find it on their website. It talks about how few people really understand. Get much better soon and don't be afraid to assert yourself to your rheumatology team.

EmmaS-NRAS profile image
EmmaS-NRASNRAS

Hi Cydney96,

I'm sorry to hear that your first two medications haven't worked for you. Unfortunately it does take a bit of trial and error to find the right medication to suit your RA but there are still many options still available to you. Do have a look at our website as there is lots of information on the different medications and treatments available nras.org.uk

Our Helpline time will be closed this weekend but if you wanted to give them a call when they're open again on Tuesday they can talk you through the options available. They can also put you in touch with one of our trained volunteers who is a similar age to you if you felt it would help to speak to someone on the phone. Their number is free phone 0800 298 7650.

You'll find lots of help and support on this forum but do get in touch with us if you need anything further.

Best wishes

Emma-NRAS

Padram profile image
Padram

Hi, A big YES to diet. Following an anti inflammatory diet since 2016. Absolutely no pain since then. Inflammatory markers are also down. My RA factor which was 220 at one time has come down to 60. No mediation for RA.

Of course this has not helped in giving me respite from another problem, ITP. My platelets don't seem to be responding that well. 🤔😊

But one worry less, so am able to manage with low platelets.

AARA profile image
AARA

Hi Cydney96,

So sorry to hear that your life is so challenging right now. I hope you get the help and support you need from your Rheumatology team and that together they figure out the right meds. for you both now and in the future.

Due to misdiagnosis on the part of my GP it took 2 years before I saw a Rheumatologist and got my RA diagnosis. By then the disease had taken hold in such a way that it has proved challenging to manage.

Shortly after diagnosis I had an average of 3 hospital appointments each week for months.

The disease is currently well controlled, even though I still struggle with the side effects.

At one time I was on 10 prescriptions per month. Now I have no GP prescriptions and just an infusion every 4-6 weeks.

My diagnosis was in 2006 and the treatments available now give your Consultant many more options and there is masses of research.

I hope all aspect of your life begin to improve very soon.

AARA

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