Reactive Arthritis

markcass
markcass Member Posts: 1
edited 22. Dec 2023, 17:11 in Living with arthritis

I've just been diagnosed with Reactive Arthritis, but on a recent paper i read it effects 2.7 people in every 10,000. I'm guessing there's not to many on here, but if anyone is I'd be keen to learn what experiences you've had, and what you might advise.

I would say i have severe RA. I'm currently on tablet form painkillers and anti-inflammatory meds.

I've gone from coaching kids football last week to not being able to walk, so quite scary/concerning.

Comments

  • Chris_R
    Chris_R Moderator Posts: 785
    edited 22. Dec 2023, 18:28

    Hi @markcass

    Welcome to the online community,great to see you posting

    Its always scary when you get diagnosed with anything that takes away your ability to live your life as you want to thats what got me when i was diagnosed with arthritis, to find a new way of doing things everyone is different and therefore find different ways of coping.Everyone on this forum has some form of arthritis so we all understand what you are going through,please continue to chat to others it often helps.

    Above is a link that may help you.

    take care and lets us know how you get on

    All the best Christine

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm

  • Baloo
    Baloo Member Posts: 381
    edited 24. Dec 2023, 00:59

    @markcass some folks, like myself, seem to get a first arthritis attack where its quite severe and gradually eases off. It seems to be the one time where the conscious system really needs to take charge, and help out the automatic system as much as it can. The automatic system is going to be a real pain.

    Taking the painkillers and nursing the hot spots seems to be an important one, as it allows the rest of the system to stay strong and get on with normal life. I found it's quite an effort to get there.

  • Ellen
    Ellen Moderator Posts: 1,565

    Merry Christmas @markcass

    We seem to get a lot here who are diagnosed with ReA (Reactive Arthritis)

    I did a quick search for you:

    I don't expect many are posting just now with it being Christmas, but we do have a few here who have or have had it.

    Best wishes

    Ellen.

  • Giro
    Giro Member Posts: 4

    Hi there! I went through a very severe bout of reactive arthritis last year and would be happy to share my experience with you if you are still looking for info! I know how hard it is to come by given how rare it is... please reach out if you still need to! Hope you are doing a little better.

    Paula

  • @Giro hi , may I ask about your ReA experience.

    I'm 3.5yrs into my so called "only reactive arthritis that's self resolves after 4 months"

  • mosborn11
    mosborn11 Member Posts: 22

    Hi I'm currently working with a consultant to try and determine if I have Reactive Arthritis or Rheumatoid Arthritis and they seem to be kind of similar. For me I came down with flu like symptoms and it turned into arthritis. I too am in too much pain to walk despite medications.

  • @mosborn11 I hope at least your pain is being taken serious. Its mind blowing how so many health care staff dismiss reactive arthritis despite the incredible pain.


    How are you getting on

  • mosborn11
    mosborn11 Member Posts: 22

    I'm actually quite lucky as my consultant really believes my pain and if anything is more than happy to give me more medications than I want to take (I'm cautious about side effects). She's not dismissive which is helpful, but it is difficult because it's hard when no one really knows exactly what it is. She has been honest with me saying it's likely to last a minimum of about 3 years, even if it's not Rheumatic.

  • Arthuritis
    Arthuritis Member Posts: 440

    @mosborn11 @Hairobsessed123 Do you know what your ReA trigger is/was? Mine seems to be a bacterium which was treated with antibiotics but sometimes it returns and I need it “retreated”. The pain is indeed extreme and debilitating, but changing your diet might help you navigate a new path to a reduced pain state.

    While we are all different and in my case I am convinced it was bad gut bacteria that damaged my gut and made it leaky, I did find that changing diet has allowed me to stay MTX & pain free damage free (hosp verified by ultrasound).

    Here is my diet map… start with fasting (& a “clear out”).

    My RA flare avoidance & prevention foods - Dos & Donts 



    Don’ts


    Fish 

    chicken 

    eggs 

    whey proteins 

    peanut butter

    Cheese


    Fructose & Invert Sugar corn syrup - factory baked products panettone, biscuits, absolute no no unless made at home. Small pieces of mango & papaya maybe 


    Beans total no no. No chilli con carne as lectins dissolved in sauce survive and result in tendon & ligament pain 


    Potatoes: Limit or avoid. Causes ligament weakening 


    Do’s:

    Green salad smoothies

    Green salads. (No onions specific to an additional condition I have).

    Limited Beef 

    Mushroom risotto 

    Rice

    Veg sushi

    Limited Bread, despite gluten, tolerated 

    Dark choc Lindt 90%

    Limited chips & potatoes

    Carrots

    Wellcome Foundation aubergine salad


    Strangely enough…

    McDonald’s Big Mac Meal with fries & Diet Coke perfectly ok!!!


    I hope you are pain free soon, with or without meds.

  • mosborn11
    mosborn11 Member Posts: 22

    I don't know what my RA trigger would have been. My wife had a chest infection back in October, and I got a mild cold with body aches and then the body aches turned into joint pain!

  • jamieA
    jamieA Member Posts: 657

    Hi @mosborn11

    I had what the medics think was covid in March 2020 and then suffered recurring chest infections before my joints joined in in September 2020. I was diagnosed with psoriatic arthritis in October 2020 and then diagnosed with pneumonia in November 2020. The rheumatology staff said that the PsA could have been triggered by covid, the chest infections or possibly even the high number of antibiotics I was given at the time. I know the internet is a rabbit hole at times but if you stick to properly peer reviewed medical and scientific papers there are recorded instances of inflammatory arthritis being triggered by all of these other conditions. Sadly I don't think there is enough research done to find the causes of inflammatory arthritis in patients.

    1. I think a big stressful event
    2. And I had trauma when I had tooth op and many doses of antibiotics! I think those 2 in close events triggered mine ! And the antibiotics I had March of last year has sent my PSA into remission, I have been doing slimming works but I don’t eat rice pasta or potatoes but I do eat plenty of lean meats veggies and fruits ! I have lost nearly 2 stone and I think this helps taking pressure of my joints as well .