New Diagnosis - If only I had known...

Brynmor
Brynmor Member Posts: 1,795
edited 4. Mar 2022, 12:54 in Living with arthritis

For a few weeks Versus Arthritis is shining a spotlight on those newly diagnosed with arthritis - of any type.

It's time for you to look forward - ask those first vital questions so you can begin to see your way forward to a life including arthritis.

For those who have been living with arthritis, this is also a chance look back to when you were first diagnosed.

What do you wish someone had told you when all this was new and maybe overwhelming?

Add to the Comments what you wish you had known on getting a diagnosis.

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Comments

  • Kats_kake60
    Kats_kake60 Member Posts: 7
    edited 6. Mar 2022, 13:23

    I had a good physio specialist called [Mod Edit - personal name removed. Guidelines - Brynmor Admin].

    She was understanding and explained that from the scans and x-rays I had she could see it was wear and tear over the years. I was 45 when I was diagnosed with Osteoarthritis. I liked her because she didn't automatically say it's your weight. She said it doesn't help and I totally agreed with her.

    I find it difficult to lose weight as I am on a budget and need help with healthy eating. I love chicken and fish. Sorry if you read this and are Vegetarian or Vegan but I do love veg dishes as well.

  • AndyT
    AndyT Member Posts: 46

    Good on you. I cut out processed/sugars/refined foods and eventually gluten early last year when I was waiting for Rheumatologist referral. It took a few months, but my symptoms did subside 90% , unfortunately I reintroduced gluten for the last few months of the year (should of just ate more veg fibre) some pain and inflammation came back and I started using ibuprofen, at Xmas I had 3 days of eating sugary treats puddings and beer, a few days later I began to feel the effects of tiredness and stiffness, the next 2 weeks inflammation and stiffness started building up in my fingers, which I still have now. Back to full anti inflammatory diet with no gluten or dairy, hoping to eliminate my symptoms again and stick with it.

    luckily I enjoy natural foods and it has been good to try some new things, and find you can enjoy baking your own cakes treats with things like coconut flours and oils, fruits and honey. Even ice cream made from just frozen bananas, strawberries and dessiccated coconut!)

  • jamieA
    jamieA Member Posts: 386

    I think the last 2 years since I first fell ill and the 16 months since being diagnosed with PsA has taught me that I need to be more assertive with the medical profession rather than passively accept things as 'they know best'. I've come to realise that not all in the medical sphere put their patients health and wellbeing first. I've also realised that any important communication I wish to make regarding treatment should be put in writing to ensure it is understood, acted upon and included in my medical records.

    Sorry if that sounds negative.

  • airwave
    airwave Member Posts: 563

    Certainly writing everything down is a good idea and stops you forgetting at an important time.

  • JenHB
    JenHB Member Posts: 79

    My diagnosis of rheumatoid arthritis was confirmed last month and had appointment with the methotrexate specialist nurse today which was very reassuring. She explained that although the medication will suppress the immune system it is to bring it back into 'normal' levels - and regular blood tests enables them to keep an eye on things and to check the medication is working well. I was also reassured that their aim to get me back to being able to do what I love (up until end of August I was very active and a keen runner).

  • JenHB
    JenHB Member Posts: 79

    also, in addition although I need to take methotrexate and folic acid (to stop some of the side effects of the methotrexate) this counts as 2 prescriptions. Fortunately, I asked for a FP57 form and am now sorting out a pre-payment certificate and can then claim back the last prescription. At no point in any of the appointments did anyone mention this!

  • Arthuritis
    Arthuritis Member Posts: 305

    @JenHB It is so true re nobody mentioning NHS Prepay anywhere. I only found out about it from a small private pharmacy. Should be a standing recommendation here as often we are not eligible for free Rx, (diabetics and i think over 60’s are).

    The important thing is to treat RA early and as aggressively as possible, or as they say in the creaky trade - hit it hard and fast. Unfortunately My NHS Rheumy told me he has never received a timely referral (NICE guideline is referral within 3weeks of symptoms onset). It’s great that you haven’t spent time ignoring the pain and “powering through” as I did (I was an idiot).

    Your ACCP & RF levels will indicate your prognosis. Those who have seronegative or low ACCP & RF have the best possible chance of remission, or at least reduction in drug dose. MTX works by interfering with rapidly multiplying cells, intended for cancer, but coincidentally also slows down T cell replication. This reduces the damage to your joints from the nightly marauding T cells, but makes you vulnerable to infection as your immune system can’t mount a vigorous response to infection as it normally would. It is also why vaccines are less effective while on mtx, and why we can’t take live vaccines eg nasal flu vax.

    Ask your nurse practitioner to take you through all the pros & cons of mtx, (its the best drug for RA for most sufferers at present). Knowing both sides will help you navigate the potholes on this journey without too many hard bumps.

    Some people also benefit from dietary changes, a lot depends on your genes. Like @AndyT , I did well out of cutting sugar (both T cells & cancer cells LOVE sugar), and there is a BMJ report on a large scale double blind controlled trial on the effects of Omega 3 & Vit D3 over a 5 year period worth a read. Short version - sunshine & vit D3 does the heavy lifting to reduce inflammation over 5 years. Omega 3 benefits flatten out after 3 years, I suspect that’s because by that time the pro inflammatory omega 6 has been largely flushed out (doesn’t mean it can’t return if you return to a junk diet!)


    Like you I was also a very active gym bunny & runner, but you need to make adjustments to not exceed the rate at which your body can repair joints, both your RA & impact exercise bashing them is not a good idea, and neither is being a couch potato. Everyone is different so talk to your NP about that too.

    Back in November at the height of my pain I was only able to sleep 1 hour at a time, and in constant agony which only gradually let up after months of MTX, and my ACCP & RF was so high (maxed out the lab upper limit) my rheumy’s eyes were like saucers when he saw the test results and he wanted me on a hefty dose of steroids & mtx immediately (scared of immune suppression during a pandemic). My mistake was delaying and only taking HCQ back then.

    I also find chill gel bandages on joints at night a great help, as they reduce inflammation. Rheumy said there’s something to it, as there have been studies done on anti inflammatory effects of cold based on some strange arctic habits of taking a freezing cold dip! (I tried cold shower on my knees & elbows - worked for hours!)

    Stay positive & aware!

  • LouisaG
    LouisaG Member Posts: 4

    Go you!!! I have a massive sweet tooth. Especially anything cream/pastry or penny sweet related..it has a massive affect on my joints. It's true what they say. Food can either hurt you or heal you! If you need motivation follow Dr Mark Hyman in Instagram..keeps me off the sugar crack

  • Arthuritis
    Arthuritis Member Posts: 305
    edited 14. Mar 2022, 20:07

    @LouisaG It takes about 14days to grow a new set of taste buds, and they “retrain” to your habits or your nomadic travels as our ancestors did. This means what might be plain now, eg iceberg lettuce and slightly sweet eg Waitrose dark choc, will if you are on a low GI diet, ie mainly fresh veg, then in 2 weeks lettuce will taste pleasantly sweet, the posh dark choc sickly sweet, and sultanas just unpalatably sweet, as will apples.

    You stop being hungry or having “munchies”, go off those delightful pastries as your previously dormant genes have started producing enzymes that sensitise your cells to insulin. The cravings vanish. Pity, as I did quite enjoy the “high” from fine pastries. Now I get my highs from looking at @frogmorton ’s brekkie pictures! 😂

    Oh and sustained weightloss with no hunger… I am old enough to remember the fall of the Berlin wall, and I am as skinny now within 3 months as I was then… dropping from 82-86Kg to 66Kg, all bloods related to weight normal, and my excercise regime is just a gentle walk now, and maybe hoiking the Henry vacuum. Nothing like precovid Gym days, where I would be in the gym everyday, bench pressing 200Kg. Now I barely manage to lift 10Kg. My joints & ligaments have recovered a bit, so I can now operate a manual can opener, which was impossible back in november, when I bought an electric and felt miserable. This is important, if you haven’t totally knackered your ligaments then given nutrition, good sleep & a few weeks some noticeable repair does happen.

    I will look up Mark Hyman. I mostly follow Prof Tim Spector for the science, and a cardiac surgeon (Dr Monica Aggarwal) for inspiration. She saved her surgical career despite RA, but with exactly the same symptoms as mine (except hers started after pregnancy).

    Even down to the weird behaviour such as buying lots of different shoes to find a pair that didn’t make my feet hurt so bad, wondering if the pair I bought online were genuine as the pain would not go away, until I double gel cushioned my feet. Little did I know that nature gave us natural self repairing gel, but when RA destroys it faster than your body can repair it, the nerve endings on the bones get exposed and excruciating pain like glass results. She described herself doing EXACTLY the same, with the entire sequence being identical.( Except for the pregnancy bit! )

    My cholesterol, blood pressure & all else are normal, which they were not before.

  • GalaxyA12
    GalaxyA12 Member Posts: 63

    Louise G and members i agree research always eg asking in a walking shop advice plantir fasciliiatus manager's father ex hill runner had it bad and used strobotherm double strike insoles which i bought great result. My physio tells me to harden my feet off reduce pampering and just use thin single impact insoles i have in a secondhand good pair off walk boots came supplied, due to osteo causing me to be skint i search repeatedly all charity shops great results a £200 pair soft top brand walk boots £15! i am always researching and learning this community is brilliant help and support. Thankyou all forum members.

  • airwave
    airwave Member Posts: 563

    A recent visit to hospital revealed pulmonary fibrosis with a cause linked to RA, I’m not surprised it’s been suggested to me a few times that I’m zero negative and I have been asking for blood tests over the last fifteen years.

    Does anyone have the same problem and can advise?

    it’s a grin, honest!

  • stickywicket
    stickywicket Member Posts: 27,223

    I'm sorry to read this, airwave. Some inflammatory forms of arthritis can be sero-negative . Psoriatic Arthritis is sero-negative and so is Ankylosing Spondylitis. R A is usually sero-positive but it can, sometimes, be sero-negative. Have you been referred to a rheumatologist? If not, ask your GP to refer you.

  • airwave
    airwave Member Posts: 563

    I’m awaiting a scan first then we’ll know more, my lungs are undersized and scarred, the prognosis isn’t wonderful. I expect to get a referral to the rheummy one day. Blimey, will I survive that long????

    I’m off for a ride and think about something else.

    its a grin, honest!

  • frogmorton
    frogmorton Member Posts: 28,211

    ((())) @airwave thinking of you. Enjoy your ride xx

  • JenHB
    JenHB Member Posts: 79

    A hint for others (as had my first routine blood tests today) - the blood test before treatment they really struggled to get the blood and had to use the baby 'butterfly' needle but had no problems today.

    The nurse gave me hints so it should be easy next time too - basically make sure you have drunk a lot of water/squash before coming and avoid tea/coffee that day

  • Topcat64
    Topcat64 Member Posts: 5

    i was diagnosed with RA in January 2022 ….. gosh I never knew how debilitating this could be ….. not been a tablet taker or Dr visitor up until this point and whowwww it his you like a bus ! I’m on MTX , Sulfasalazine and folic acid …… last 2 weeks of my steroids 😢😢 they were a godsend at the peak of the intake now reduced the pains are coming back …..

    my question to you have your changed your diet ? What impact has this had on your condition and what type of changes have you made with your food ?

  • Anna
    Anna Moderator Posts: 695

    Hello @Topcat64 and welcome to the online community,

    You’ve just been diagnosed with RA and it’s been understandably overwhelming for you, and you’re interested to know if anyone has made changes to their diet and what impact this has had. All our members live with arthritis, so I hope you get some useful responses. You might like to look further back at this thread - there’s an interesting discussion about diet and nutrition.

    Versus Arthritis website has also got a useful page on diet - I’ve linked to it below. It talks about whether changing your diet can help deal with the pain of arthritis:

    Do post any more questions you have, or have a look through the Living with Arthritis forum where you’ll see posts on all aspects of living with arthritis, including diet:

    I hope you enjoy being part of this friendly community

    Anna ( Mod)

  • I found that comments are mostly for RA but i have OA so not finding any info here

  • airwave
    airwave Member Posts: 563

    Surepass123,

    There is so much information on the forum, I’ve been on here for nearly twenty years, in that time I’ve known I had OA (since I was young) and never been short of help. If you want to find information you have to search for it not expect others to bring it to you. It is there. I’m sorry I’ve had to join the RA ers but that’s my problem🤪.

    its a grin, honest!