Changing my diet changed my life - sero negative arthritis

charleeh

Hello all,

I haven't been on for a long while now, lets say I have had a lot of personal issues to deal with...
(coming terms to leaving the man I was with for 7 years as I had to face facts that he couldn't look at me as a woman due to me getting sick and after 3 years of marriage I had to accept it would never work between us).... and yeah, my divorce is going through right now.

A couple of years ago I started using hemp products, hemp seeds on my breakfast from Holland and Barrett every morning, hemp milk which I buy from Sainsburys and I started cooking with hemp oil. I also slowly, and I mean slowly reduced all meat and dairy and fish until eventually I only eat eggs now as any animal product. It took a while, but my condition gradually started to get better; so I guess you could say I am semi-vegan?
I also avoid tomatoes and oranges.

It took a while for me to realise that foods were triggering off flare ups; I was so sick, off work and so very sad, so naturally I was eating more rubbish. Also, the deal of preparing a meal was so difficult I was eating processed ready meals.

I started by making a diary and I documented everything I had done - eaten, emotional and physical. And my results shocked me.... My two main triggers from a flare up:

Diet
Anxiety

We are so addicted to processed foods the cravings to come off it all were immense; I had no idea. But I guess it stands to reason that we are what we eat and if you eat rubbish so will your body be. If someone had of told me this I wouldn't of believed it for a second its only as it's happened to me that I get it.

After 2 years of a complete lifestyle change and I mean complete, I don't slip up with my diet - strictly no meat or dairy (a flare up can happen afterwards while digestion is still happening, so its not always obvious the cause)
I do yoga, I meditate and I take supplements:
Vitamin B Complex, Vitamin D plus calcium, D Mannose, Iron with Vitamin C, Magnesium and Wheatgrass. I also have a Cacao drink daily.

My specialist doctor and nurse fully support me with my findings too which was a great relief to me; some people will think that I'm a crazy hippy and I tell you that everyone's body is different; Sero Negative Arthritis is a reaction to something, its an auto immune disease where the body's while cells are going crazy because of reason X which is yet unknown.
I wasn't born with this condition, it came on when had huge amounts of anxieties due to my parents divorcing, it messed my whole life up until now where I have taken control of it.

I deal with my anxieties a lot better these days but yeah I can still have a lot of pain when I have an anxiety attack. Its the quickest way for a flare up to be caused; mention my parents.

I ask you to give this some thought, as I said everyone's body is different. Maybe I just worked out my auto immune reaction? - anxiety and diet?
If I was to advise anyone it certainly wouldn't be to cut important things from your diet, it would be to keep a diary like I did - if your sick and your stuck at home you'll have some positive focus, a willingness to try and find what it is that could be making you sick.

I've had the all clear from the hospital to greatly reduce my meds too!!!

1 tocilizumab injection every 2 WEEKS (previously weekly)
3 methotrexate every week (previously 6)

....
and just for a bit of gossip, it's ironic that my ex-husband couldn't cope with looking at me like a woman, I leave him and I get better.... the anxiety he caused me not looking at me in that was for about 6 years made me feel so bad about myself and horrible I couldn't even feel female.
As it turns out I had some time out on my own and hooked up with a friend I have known for 5 years; I am a but no nonsense atm but yeah he's perfect for me!

Defo in a good place right now.

I urge you all, try it - keep a diary and see if there are any triggers!!!!! remember you might be getting delayed reactions if its food and emotional too -
It took me a year of keeping a diary to notice clear triggers

All the best!!!

Best wishes,
Charleeh x

:bouncing-ball:

stickywicket

I'm so pleased things are going better for you.

There no doubt at all that stress makes all types of arthritis – and many other diseases and illnesses - worse. My biggest flares were all related to stress.

A poor diet will also make it worse. Arthritis Care has long been advocating a good, balanced, Mediterranean-type diet. Of course, when we are suffering, the temptation is to buy ready meals and junk food but that won't help long-term.

I'd just caution against three things.

1. It can be dangerous to cut out entire food groups.

2. It's possible, and dangerous, to overdose on supplements.

3. Supplements can interact with our prescribed meds, sometimes subtly and long-term.

You say you have squared this with your doc but I wonder if she is aware of all the things you are taking and omitting. Your local pharmacist could tell you if it's safe to follow your self-imposed diet.

I certainly felt better when I stopped eating meat but have had to go back to eating small amounts (as small as possible as I dislike it intensely) because my haemoglobin and ferritin levels kept sinking and I got sick of all the endoscopies and colonoscopies that that necessitated.

dreamdaisy

That's excellent news, I am very pleased for you and hope things continue to be so positive. DD

bitsinabag

charleeh wrote:

Hello all,

I urge you all, try it - keep a diary and see if there are any triggers!!!!! remember you might be getting delayed reactions if its food and emotional too -
It took me a year of keeping a diary to notice clear triggers

All the best!!!

Best wishes,
Charleeh x

:bouncing-ball:

Hi Charleeh,
i am very pleased that you have found a way to tackle your arthritis. I found your post so encouraging as it mirrors my own in many ways and lends weight to a message that have been trying to get accross since early this year.
To trim my tale to a digestible size, in spite of the relentless symptoms I felt worse some days than others. The old man,who believes that we are each responsible for our own health and that doctors admit that they are only `practicing, decided to log everything I ate, drank and did as well as, 1-9, how I felt each day to see if there were any patterns. He set up a spreadsheet with daily entries many of which amounted to ticks in a box, and over a period of only a couple of weeks some patterns emerged.
The key items pointed strongly toward what I ate rather than what I did.
Specifically (for me) that bread, pastry, cakes and the like had a worsening effect on my symptoms. Specific allurgy testing via the GP showed no indicators. Still no better with GP/specialist advice we went our own way and eliminated those foods and within 7 - 10 days the symptoms and pain disappeared as if by magic. Coincidental remission says the specialist. However in the 8 1/2 years since, if I avoid wheat & gluten in my diet I get no pain or other symptoms of RA, If I eat so much as a `normal` doughnut the joint pain begins again within the hour! For the record if I unkowingly eat wheat or gluten the same is true. eg friends go to the trouble of getting GF bread and other foods and the add flour to a sauce or what have you.
I now live a normal life and the knarly knuckles have largely recovered. Managing the food is nowt compared to suffering pain.
Keep up the good work,
All the best
bitsinabag.

LignumVitae

I'm pleased that you have come out of the other side of a stressful period and managed to find a way of maintaining your arthritis at a more acceptable level. Well done!

I know stress is a major trigger for me and therefore when I went through a relationship break down I had a flare, once out of the relationship I went into remission. It was further evidence that the relationship was a problem! However, I have never found a relationship with what I eat and how my arthritis behaves, that said I don't eat much processed food, don't drink a lot and have limited dairy intake anyway so maybe that's why. Infections are another trigger which I respond to badly, I think that's classic of arthritis though. I drink kefir to try and make sure I'm as in balance as possible in terms of immune system though.

I wish you well for the future and for a happy ever after with your new partner.

trepolpen

I totaly agree with sticky , you have to be careful

for myself , know tomatoes , oranges , apples , berries & grapes all makes my RA worse , the gluten depends if you have some problems with it , but after 20 years found nothing improves my RA

over the counter drugs / some will work against the immunosuppressants & others like St.Johns Wort interact with DMARDs so check with your doctors/rheumy nurse first & be careful

charleeh

I agree completely, you have to know what you are doing with nutrition; and I find that |I have to eat a lot of spinach to compensate for low iron!

It is something that you have to research properly and make a food diary with, I have found that gluten affects me too, as do potatoes. You really can see the difference its amazing.

I am now down to a tocilizumab injection every 3 weeks!!! :bee:

AND.... I kicked my opiate addiction and am completely off the tramadol

x

ImNotFinishedJustYet

Change to lifestyle will certainly improve you physically and mentally.

Diet is huge - I also have Graves Disease, Graves Ophthalmopathy and Diabetes (although thanks to diet change i've undone this and am now in the highest part of non diabetes) - i've lost 2.5 stone to help myself, yet my health coach and diabetes nurse both say that NONE of their other patients do anything to help themselves - I don't get it? As soon as I was diagnosed I changed because I had too.

You feel better physically and mentally - and yes, get rid of people who do nothing but cause harm - sounds harsh but you need support not criticism and made to feel uncomfortable and anxious.

Congrats on the change of lifestyle and well done on reducing injections and off of the medication!

DewdBro

Wouldn't it be nice if we could just undergo a test in the doctor's office that would inform us of what foods/drinks to avoid? It seems a bit silly that science still has not progressed to that point...

I've recently noticed that gorging on assorted nuts results in a flare for me. I suspect salsa (tomatoes) does as well but it's so difficult to tell given the many variables at play...

New member, by the way... [emoji137]🏼‍♂️


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[Deleted User]

Welcome to Arthritis Care Forums DewdBro from the moderation team

As mods we are here to help with any problems you may have on the message boards.

There are lots of lovely people here with a wide range of experiences with arthritis and the problems of living with the condition. Just join in wherever you like you will be made very welcome.

I look forward to seeing you posting on the boards.

Best wishes

Moderator John

stickywicket

Hi DewdBro and welcome from me too.

Medical research is actually working on personal treatments for all sorts of diseases but it's early days.

The basic idea is healthy diet and exercise. Caffeine isn't much good for anyone so probably best to try ro reduce it. Smoking is definitely bad and has been shown to increase people's perception of pain.

Unfortunately, no quick fixes for us.

bitsinabag

Hello everyone, I agree we are all different, which is why I strongly advocate recording 1 - 9 each day how you feel alongside a record of `inputs`.(much better than a `food diary` which becomes a jumble in my experience). Here is a post I made a while ago;
My old man and me have found what for me is a reliable way of eliminating the pain and other symptoms of diagnosed and suffered chronic rhumatoid arthritis. I suffered for several years, (knarled joints, awful pain, steroids, splints, morphine, etc, etc.)
To trim the tale to a digestible size, in spite of the relentless symptoms I felt worse some days than others. The old man,who believes that we are each responsible for our own health and that doctors admit that they are only `practicing`decided to log everything I ate, drank and did as well as, 1-9, how I felt each day to see if there were any patterns. He set up a spreadsheet with daily entries many of which amounted to ticks in a box, and over a period of a couple of weeks some patterns emerged.
The key items pointed strongly toward what I ate rather than what I did.
Specifically (for me) that bread, pastry, cakes and the like had a worsening effect on my symptoms. Specific allurgy testing via the GP showed no indicators. Still no better with GP/specialist advice we went our own way and eliminated those foods and within 7 - 10 days the symptoms and pain disappeared as if by magic. Obvious coincidental remission says the specialist. However in the 8 1/2 years since, if I avoid wheat & gluten in my diet I get no pain or other symptoms of RA, If I eat so much as a `normal` doughnut the joint pain begins again within the hour! For the record if I unkowingly eat wheat or gluten the same is true. eg friends go to the trouble of getting GF bread and other foods and the add flour to a sauce or what have you.
I now live a normal life and the knarly knuckles have largely recovered. Managing the food is nowt compared to suffering pain.
All the best
bitsinabag

DewdBro

There are a couple phone apps whose sole impose is to track symptoms and possible triggers (diet, etc.).

mySymptoms is one...Symple is another. They are both on iOS but are likely available on Android as well.

MissKat

I tried the Paleo diet a couple of years ago, I did feel better in myself, however I still had flares [emoji1361]

Do you rate the apps Dewdbro? Might be interesting to see... doubt I'll have the time with two kiddos to chase after all day though! (Ps welcome to the forum!)


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DewdBro

MissKat wrote:

I tried the Paleo diet a couple of years ago, I did feel better in myself, however I still had flares [emoji1361]

Do you rate the apps Dewdbro? Might be interesting to see... doubt I'll have the time with two kiddos to chase after all day though! (Ps welcome to the forum!)


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Yeah, I've been Paleo for the past 12 months and managed to get off meds but recently had a flare. That may or may not be related to me slipping up on my Paleo lifestyle.

I haven't used the apps myself other than looking them over. If I were diligent and patient, I'm confident they would identify triggers over time.