End of the Road

Normally on the top of my game & 24 years into this RA fixture - really struggling .

Last 12 months remission is a thing of the past and last 6 months has been jumping through the NHS hoops & increasing medication ( 20mg metojet) , steroid injections etc etc & uphill battle as bloods do not reflect inflammation . ( private consultant said it was very unfortunate !) Benepali prescribed when another joint destroyed by RA in last 12 months .

NHS mix up meant that instead of being on Benepali now it is delayed to end of Nov when back from an overseas trip ( husband's big birthday πŸŽ‚) they felt it was unwise to start 2 weeks before I go .

So last 4 weeks I have had continual flu symptoms, dreadful headaches which means to me my RA is flaring & active .

So Each day is fake it till I make it - do something , lie down .....repeat . Now hip joint is so painful ( never had pain there )

So fearing the worst .

At a low ebb - due steroid Friday & thinking to ring & bring it forward .

I am not depressed just so exhausted now I really do not want to have another day like this . If another person says to me you look so well ..........

Tired to my bones .

Think I have officially lost the plot ! πŸ™ˆ

Skip

Featured Content

What’s your health story?

We're sharing inspiring health stories of some of our members

Watch John's story

Featured by HealthUnlocked

14 Replies

oldest β€’ newest
  • Hi there, sorry to hear you are having a rough time of it. Is this going to be the first time you have been prescribed a Biologic ? I'm still new to all this. and on the Methotrexate /hydroxychloroquine combination ( except for the last 6 weeks when i've had to take a break because of infections) It can all become overwhelming can't it when things aren't going well.

  • Yes it is Izzyowl ( such a sweet name) - but will not start until beginning of Dec . So another month of feeling rubbish . Bizarrely I can cope with pain but not this interminable headache as I cannot function . So def Feel I have dropped the ball .

    How are you getting on ? and how long since diagnosis ?

    I do hope you have turned the corner and you are responding well to treatment πŸ˜€

  • .

    Maybe not be "the end of the road" πŸ›£ , MAHGS? πŸ€”

    Maybe more like hitting a 'bumpy stretch' γ€°γ€°γ€° ? πŸ˜” 😌

    .

    If you scroll down ⬇️ toward bottom of (2-year old) post 'Rheumatoid Arthritis' ( healthunlocked.com/nras/pos... ) to view bodunchar's comment, I think you'll get a long-view perspective of the unfolding of a typical (normal/ standard) experience. πŸ˜”

    .

    Accurate, concise, bell-clang clear. πŸ””

    .

    (Kindly, a mere 'supplemental perspective' for your consideration. πŸ™)

    My heart πŸ’“ goes out to you, MAHGS. πŸ™ 😌

    Wishing you blessed relief. πŸ™ πŸ€ 🌺 🌞

    Hoping you'll never having to experience 'losing the plot' again. 😌 πŸ™

    .

  • I'm sorry you are in a flare. I hope they can get it under control. I'm still waiting for them to get mine under control. Waiting, not very patiently. Tired to my bones, well put.

    I hope you can get approved for your biologic. My mom did Remicade for years and it gave her life back. Until it didn't anymore (she became allergic after about a decade). She's only taking hydroxychloroquine now, she hasn't had a bad flare since a biologic (that gave her sinusitis for 2 years), she's hoping the hydroxychloroquine keeps flares at bay. She had a small flareup between the last biologic and hydroxychloroquine, that was when she realized she had to go back on something.

  • I am approved & will start beginning of Dec .

    We all know the knowledge but sometimes it is just overwhelming . Good news that your mother has benefited from the biologic( sinusitis aside ) .

    This chronic disease is like baking a cake - do everything you are supposed to and sometimes it just doesn't work .

    Sorry I was very gloomy last night - not much better today but at least sun is shining πŸ˜€

  • Thanks for the support Izzy owl chescat & kai πŸ˜€

    Think I have just got so run down with it all .

    Flu symptoms have made it so hard to think clearly & after a month of pounding headaches & feeling unwell it has ground me down . No point going to gp as she does not have skill set to deal with this

    So yes have lost perspective. Normally always like to give optimistic, upbeat advice on this forum and am very resilient but I guess I am human! πŸ™ˆ

    Sun is shining today so hopeful it will be a better day x

  • .

    See if Zarathustra 🐈 or Simon's Cat 🐱 videos πŸ“Ή bring a smile 😌 , MAHGS: healthunlocked.com/nras/pos....

    Maybe even jumpstarting (tickling you into a giggle 😊 😁 ) toward a better day β˜€οΈ .

    .

    πŸ™ πŸ€ 🌺 🌞

    .

  • Oh, I hear you!! I am the same way. Chronic illness can grind you down. I hope you are feeling better soon. The meds hold so much promise and hope but don’t always work, which is very hard, mentally, to deal with. ❀️

  • And I totally agree. Going to the GP is hardly ever worth it, they really aren’t equipped to deal with us.

  • I’m sending you lots of care and healing vibes !

    I hope Things improve quickly for you - no wonder you feel down- when things are uncontrolled and bad, it seems like it slowly drains the life from your body and soul!!

    Take care of yourself MAHGS and chin up.

    Marie

  • Thank you for the kind words - a path none of us want to be on sadly 😁

    I know I will get better or be in a better place .fingerscrossed

  • Exactly - I went for an RA review with my gp & only thing she told me was to go to a nutritionist . Already have that sorted as I am dairy free,gluten free

    . No answer to any of my questions re RA .

    Bizarre!

  • Hi. Mags, I am in the same position as you. 22yrs into RA. Struggled working for the first 14yrs and been retired for the last 8..Methotrexate and sulphasalazine have been the main treatments. But a few weeks ago all my fingers swelled and couldn't do anything. Then had dreadful colds. So stopped the methoject 25 and sulphasalazine. Feel better with no. Nausea headaches anxiety heartburn, light-headedness... But feel the joint pains creeping up. Dreading going back on the meds. And dreading going to see the nurse. If I come out of their care then fear what might happen. Takes a good 12 months even to see a RA doctor. Reading this forum helps because at least I know I am not on my own. Hope you get sorted out.

  • We all have to be stoical which of course is easier said than done!

    I do think the drugs can stop working after many years & I ( in my wisdom ) thought that my flu symptoms were a consequence of being immune suppressed. Came off methotrexate periodically to get over β€˜the flu β€˜

    Transpired that was the disease flaring up & I was making it worse . How stupid was I ! But my bloods did not reflect this

    So worth getting it double checked .

    Might invest in a divining rod as so hard to know when we are doing the right thing πŸ˜₯

You may also like...