Hello - newly diagnosed inflammatory arthritis - looking for advice - what you wish you had done?

EmmaLa

Hi All,

I'm Emma, I am 50 years old and I am having a battle of a lifetime….or so it feels!

So I contracted the dreaded Covid in late January this year, which turned into what Drs thought was tendonitis in my wrists and then further complicated it all by getting Shingles and then PHN. It's pretty much been a roller coaster of pain this year!

So I finally found a GP that actually saw me and listened to what was going on. Lots of pain killers and blood tests and I was referred to Rheumatology as my inflammation markers were abnormal.

Last week I had my appointment he did an examination and an ultrasound on my wrists, wow, that was fascinating, actually seeing the inflammation on screen and also kind of validating - I was beginning to think my head was playing tricks on me!

Dr xxxxx ( doctor’s name deleted by Moderator) - very good Dr I like him, he made my pain go away 😃Has stated that it is inflammatory arthritis but we have to watch and wait to see if it is reactive (from covid) or rheumatoid. He gave me a steroid shot that should last for 4-6 weeks and guess what, more blood tests. I am pain free for the 1st time for most of this year, but I am absolutely terrified of the debilitating pain coming back again.

I'd love to hear your stories of what wish you had have known, any advice for me as go down this very painful road! What do wish you would have known on diagnosis?

jamieA

Hi @EmmaLa

I was 65 when I was diagnosed with inflammatory arthritis in late 2020 about 6 months after being told I'd probably had covid - they weren't testing then - and then suffering repeated chest infections. In my case it's psoriatic arthritis.

I can only suggest that you need to be as assertive as possible in dealing with medics - after all it's you who is suffering. If it helps take someone with you to your appointments or take a notepad and pen.

Anna

Hi @EmmaLa and welcome to the online community,

Wow, you certainly have had a lot to deal with in the last few months! It’s good to hear that you’re on the way to finding out your diagnosis and then you can start receiving the correct treatment. It can take a while for the right treatment to be sorted out for you as it’s such a personal think, and different for each person.

We don’t like to name medical professionals in our post ( whether good or bad experiences!) but it’s good to hear that you have confidence in him.

I’ve attached two links to information on rheumatoid and reactive arthritis that you might find useful to read, and please do ask any more questions you may have - many of our members have experience of inflammatory arthritis and are sure to respond.

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://www.versusarthritis.org/about-arthritis/conditions/reactive-arthritis/

Best wishes,

Anna ( Moderator)

Arthuritis

@EmmaLa I was diagnosed with RA shortly after covid too. The first alarming symptom was painful feet, I kept buying new shoes thinking that was the problem as I walked a lot. Then a sausage finger, and despite being on immune suppression the symptoms kept progressing, knuckles looked bruised, wrists, knees then elbows and finally hips. I would wrap each affected joint in freezer gel just to manage the pain. Barely able to walk. The immune suppression drugs (“DMARD” as they are euphemistically called, implying some kind of precision drug, it’s not, it’s a sledgehammer to your immune system )finally suppressed my immune system after 6 months and I got some relief. It was only following a flare up that I linked RA to diet, I’d only had 2 spoons of baked beans and within hours I’d gone from relative calm to RA full on flare. My drug dose had to be increased considerably, to max. Which eventually helped, but resulted in frequent infections and shingles. During one of the bouts of infection I was prescribed antibiotics during which I was told not to take the DMARD drugs. At the end of the 7 day treatment period I would normally be like an addict in pain wanting a fix, but there was no pain, so I waited… and waited… days turned into weeks, finally into 2 years until Jan 2025, when I ate something that flared me back into the RA club.

The take away is remove common flare agents from your diet, it takes 2-3 days for them to clear your gut. See if there is a change in pain levels.

Common flare agents (unfortunately it’s unique to everyone, you have to discover yours):

Soya (unfermented)

beans

Casein (milk products)

Nuts - walnuts, almonds, peanuts (not everyone)

Animal products from animals fed on cheap protein like soya (Becoming vegetarian suddenly becomes appealing). These are most farm animals. Includes eggs. Except ruminant animals, they ferment what they eat, including soya, and this destroys the offending defence proteins. We already know about the dangers of kidney beans improperly cooked.

Excess sugar & salt also affects some people.

Finally, those in the early very sensitised state, veggies called “nightshades” -bell peppers, potatoes, aubergines, tomatoes contain solanins, which like bean lectins seem to cause flares. This eventually calms down, but takes months.

Which of your joints were affected?

EmmaLa

@Arthuritis Thank You for your great response, so sorry that you had to go through all that but it's great that you have found what causes flare ups. I'm already sensitive to soya and wheat so I limit this anyway, it might actually be starch, I will certainly do some inclusion / exclusion diet experiments.

The main joints affected first were my wrists, then my hand swelled up with a pain I can only describe as like my hand being crushed in a vice, when the swelling subsided my fingers were deformed and I suddenly have Bouchard's and Heberden nodes on both hands. Then it was my neck which suddenly decided to not move and cause an world of pain when I did. Now it's also in my feet, mainly toes, a very progression from going to the gym weight lifting to sitting on the settee wondering what happened. It's controlled atm, I am hoping that it will stay that way.

@Anna Apologies for the medical professional mentioning. Thank you for the links I will have read today. Sounds like I am in for quite a journey, keep your fingers crossed I find a treatment that works early on :).

@jamieA Ohhh no, that must be really difficult to deal with, the more I read it does seem that I have been quite lucky to get referred quite quickly, I did have to keep bugging 111, urgent care and GPs for a while, there was a lot going on with the Shingles, PHN, Covid recovery. I took my hubby with me to the first Rheumatology appointment so that he could keep track of everything for me. I wrote everything down for him before the appointment he seemed to appreciate that. It's difficult isn't it to be firm with medics as I often feel that it's a difficult job, luckily my husband is quite stern and doesn't like to see me in pain - and will do the being firm bit for me!

Arthuritis

@EmmaLa We seem to have some things in common. In particular gym one day and shuffling the next.

I would also suggest considering a lengthy water fast, between 2 & 10 days, if you have sufficient body fat to sustain you.

This clears your gut of outside “intolerances” and time to calm down any gut inflammation. See if there is change in swelling & pain.

leafy green smoothies, no

Arthuritis

@EmmaLa continued… previous posted before finishing and won’t let me edit!

leafy greens no fruit.

Re Soya, - note that Soya and its derivatives are in virtually every manufactured food product, as is gluten. Gluten free is often not Soya free, or casein free, and manufacturers are not required to declare the amount if it’s below threshold, and get away with “May contain traces of…”

Pure starch is highly unlikely to cause a flare, unless table sugar causes you flares. However the SOURCE of the starch matters. Rice starch is unlikely to be a problem, potato starch could be in the early days of RA, when joints are still inflamed & swollen when you are hyper sensitive to solanins. You develop tolerance after a while. The reason why I say this is starches are simply sugar molecules strung together, so if you hold something starchy in your mouth for a few minutes, it will go from bland tasting to sweet, as the enzyme amylase in your mouth breaks the starch down into sugar molecules.

If you get sausage fingers you may be a good candidate for relief by dietary change.

I would also suggest getting house taps changed to lever type, and kitchen implements to help with grip on days when your hands or wrists are inflamed.

Finally, can I ask you check your eosinophil count? It will be in the FBC set.

It should be well below .2, ideally below .1. If it’s much above .2, you are likely eating something your immune system doesn’t like, and will result in swollen hot joints. (I had to give up cheese -casein 😟 and most farmed meat as it’s fed on soya). Gluten too, but the aroma of fresh baked bread is so tempting! I can however manage a little bit of genuine 48hr fermented sourdough bread. The fermentation breaks down the offending defence protein in wheat making it safer for me.

Keep sharing what you find!