Can anyone else relate to "feeling better" is worse?

I know this might initially sound strange but please bear with me.

After much time living with uncontrolled RA, in between 'flares', I still had symptoms of active RA. However, I'm finally settled with an anti TNF and 2 DMARDs. In between flares, I still live with chronic pain due to my joint erosions/damage but it's something I have come to accept.

When RA was in my life 24:7, it was horrendous but at least I knew what to expect. I live in constant fear of the unknown, waiting for the next flare to hit. In between flares, I forget what it's like to live, work and socialise with RA but it comes barreling back full force once every 3/4 weeks. I've accepted that even with all these medications, I will always live with RA to some degree. It's just so hard when I try to manage my life with my current level of disability and suddenly, I'm very unwell again and even less able.

Can anyone else relate to this?

10 Replies

  • Yes I can. The days you feel great is with the knowledge that in an hour you can be bad again. I think it's the uncertainty that's the problem xxx

  • Yes, the uncertainty is the problem, especially when you're trying to make plans!

  • Yes, its strange and others without RD would never understand. In fact I never say it outloud. But you're so right, i suppose its better the devil you know, its this erractic, no warning, out of nowhere devil that's tricky.

    but as my friend said its trying to switch your mind set rather than thinking whens the next flare up coming, it should be 'oh lovely I feel good today'. I don't manage it always but it does start your day on a positive not a negative.

    I'm off to try counselling this week to help me get my head round it, perhaps it might be something to think about?

    hope the gaps between flares get longer x

  • Thank you. I have had a lot of therapy, so not sure it would make much difference. I have a lot of support around me, I need to use it though. x

  • Totally understand where your coming from. Although your symptoms sound way worse than mine I can relate to your feelings.

    A couple of months ago I was having a flare & it just so happened it coincided with my rheumy appointment. He gave me a steroid injection & it was bliss, for 5 whole weeks I was almost the old me. Energetic enthusiastic full of plans it was great then wham back to earth.

    Pain stiffness extreme fatigue little point of planning. It was nice to be me again but I've found it hard to go back to how life is now. So I'm not sure that for me it was worth it but then I'm no where near as bad as many folk on here,I should think for many it's a lifeline. X

  • I'm sorry you understand but it's helpful to less alone and crazy in my head. If I get a chance, I might give the NRAS helpline a ring this week. :)

  • I can identify so much with this. A straight-line graph was easier than this roller coaster. What I do find helpful is mindfulness, even if only for a minute at a time. Http://

    I swear by it.

  • Yes, I can certainly agree - the unpredictability is so difficult to cope with. And i get so distressed when my nearest and dearest say "But you climbed that hill last weekend!" and they can't understand why I can't do anything but walk on the flat this week. On Sunday, I had an outburst of shouty crying because my partner just didn't understand why I now didn't want (read couldn't) to do what we had planned to do....

  • I can relate, crashdoll! Several weeks ago I had a bad flare that was really getting me down. Everything that I love to do seemed impossible. I finally called my doctor. Next thing you know, I am taking steroids and feeling great--doing yard work, walking, biking, bowling, etc. Well, now that I have almost completed my course of steroids, the old RA nemesis is on its way back. I have broken down in a good cry a few times lately because of the let down. You are right. This disease takes us on a roller coaster that is not much fun because in the end, we still have RA. If I could take steroids for the rest of my life, I would. But it is already affecting my skin and bones. Here's to hoping and praying for a cure.

  • As others have said - uncertainty is the hardest thing to cope with I find. I know that all diseases have an aspect of uncertainty - not least cancer - but somehow with autoimmune diseases, which can change direction and allow other AI diseases to join in the journey - creating havoc and pain on route - this is particularly hard on the human spirit I feel.

    Well expressed. I don't have the erosions you have and I was in my forties rather than 20s when this started - but it has been psychologically speaking the hardest thing I've ever had to deal with - and I've dealt with quite a lot in my time.

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