What is control?

I don't know if I've already asked this, but I'd like to know. I was thinking about what my rheumy said, that I have less joints involved and less swelling, and I looked through my journal. She's right, I'm in less pain than I was. It only rarely wakes me up at night, and while it flares up with the weather I'm not always that bad. Is this control? Because if it is, I'm still not very happy. It hurts to play piano. I've been playing for forty years now, and it hurts. It hurts to walk. It hurts to type. Is this my life now? Is this what we've been working towards?

I know that I should just be happy that it's not as miserable, and sometimes I manage that. I just thought that 'better' would be...well...more better :P Upping the mtx definitely increased my energy, and cooler weather has been kind to my joints. Is this it, then? I think of Jack Nicolas and say 'is this as good as it gets?'


the teary

22 Replies

  • I have an appointment in Sept & that is my question too. Have a hug, as I know exactly what you mean, RAinK

  • Hello Bats

    Now had my PSA for over thirty years now and I have been informed i am in a period of respite. Also I am unable to take DMARDS and have been discharged as there is nothing they can do,????? Now I really wish they could tell my joints that as they do not know I am in respite

    My condition now affects my mental Health and I have been told at sixty five, will not get any better, So I will chew over my options and will just grin and bare it as my body is telling me that the sciatica I suffer in both legs is telling me I make a good limper

    So I really feel for you and I understand that RA will not get any better as we get older, it is the acceptance of our conditions that has to become more positive.

    Good Luck


    Ps Sorry I am so negative.

  • Hi Bob, please don't feel the need to apologize for how you feel. It sounds like you have good reason. I'm wondering when my joints will catch up with my rheumy's assessment, too...but I feel less negative today. I have a peer support group on Mondays and letting some of that negative off gives me room again to try for optimism. I feel less like life is picking on me today, more like this is just another life-lesson. It's a sucky one, but it's still part of my life, not the entirety of it.

    Good luck to you, too,

    Mary za Bat

  • Does your rheumy say that your RA is now well-controlled? And also, what is the reason for the difficulty playing the piano, walking, typing? Is it active RA or damage caused by RA? To my mind, if RA is still disrupting your life to that extent, it is not well-controlled.

    I would want to know what my inflammatory markers were looking like and whether I had any damage that's not going to respond to RA meds. My rheumy thinks my PsA is now well-controlled and I agree with him. I have some pain and occasional awkwardness doing tasks because of secondary osteoarthritis but PsA pain and disability are minimal, virtually non-existent for much of the time.

    I do have other stuff going on before you start hating me too much .... if psoriasis can cause insanity I'll soon be in a straitjacket .... but the well-controlled nature of the joint disease is very apparent. My feeling is that when it's under control, you'll know! I hope you get there before too long.

  • hi postle, first off I couldn't hate you if I tried :) My rheumy didn't say it was controlled, only that it was better, so I'm probably jumping the gun a bit. I have some experience with being brushed off by specialists, so I think a lot of what I'm feeling is simply fear that I'll be ignored. I see her again in six weeks, and she's going to do an ultrasound of my hands then. My dx was in November, but prior to that my hands had been achy and sensitive to cold and heat. This feels quite different from that, and it hurts whether I move them or not. I know I have osteo in my left knee as well as RD, so quite probably that's going to hurt no matter what. I'm feeling much less panicked today, and I'm going for an adaptive hike tomorrow (I'll take pictures). I went out on Sunday as well, and walked most of it.

    I'll ask her about my bloodwork when next I see her, and just try to take it a day at a time. Oh, and if you do need a straightjacket, there's a store in Edmonton (my home of origin) that sells shiny red ones. *grin*


  • Thank you for the heads up, I do like red.

    Have a great day tomorrow!

  • I've had 2 periods that I would say counted as 'well controlled'. The first was after I started on my first DMARD - hydroxychloroquine - and lasted about 2 years. The second was after I first started on MTX - after the hydroxy wasn't working so well any more - and that also lasted about 2 years. During both these spells I took no painkillers, had no stiffness and could pretty much do as I pleased. Life was great!

    So that amounts to about 4 years of 'good control' out of more than 10 years with a diagnosis of auto-immune disease. (My initial diagnosis, when I started the hydroxy, was lupus.) Add in the 2 remissions I had prior to any sort of diagnosis and you arrive at about 5 1/2 years of wellness out of 25 years of illness. Not great.....

    My disease doesn't rage for the most part - it grumbles - and I suppose I should be a bit grateful for this. I tend not to have sudden, incapacitating, happenings - just slowly, gradually feeling less and less well, dragging on for months at a time. I don't think of this as being 'well controlled' since not a day goes by without me being aware of the impact of RD on my life. I know that the drugs have got me to a much better place at times in the past, I'm just not so sure now if they can again. From your description, it doesn't sound as though you feel 'well controlled' either - more like just a bit better than you were.

    Doctors here define things by your disease activity score. Below a certain score, which escapes me just now, they conclude that you have low/negligible disease activity. Unfortunately for those whose presentation is not absolutely classical, the DAS score is heavily dependent on what your hands are doing. Even if it's all going on in your feet, you will still tend to fall into that low activity bracket.

    I think the patient should have a very big say in all of this. If you can't do what you want to do & that isn't because of irreversible damage, then I have to agree with Postie - that's not well controlled.

  • Thanks Livingston, I appreciate your perspective. We upped my mtx last shot, and my energy is so much better, which helps my mood, too. It's not a long interval until I see the rheumy again, so she's clearly not done with me yet :P I didn't tell her that activities still hurt me, I focused on my list of joints that hurt without being specific. I find it hard to know what information is useful to her, because she doesn't seem to find pain a particularly useful diagnostic tool. *shrug* It's a disease, I've got it. I will find my way because I always do.


  • I don't think pain is always the best guide to disease activity. But it is a guide to how hard it is to live with this at any given time. I try to talk about what I can't do, or what I struggle to do. That gets things moving every time I come round to saying I'm struggling to go to work. :P Glad to hear you have a bit more energy - that helps with most things. And maybe your rheumatologist will have a new plan when you see her again.

  • Yes, there's a big difference between pain from damage done, and pain from active disease. Both hurt pretty much the same, but try to work out which is which. I kept asking my rheumy that Jack Nicholson question, and saying I was prepared to try anything to get it under control, and she did respond by tweaking my drugs until we got to a better place. And now control to me means being able to forget about having RA a lot of the time.

    (And before you hate me, my hands & feet do hurt permanently from damage done, plus osteoarthritis in knees and 4 knackered vertebrae. So life's not perfect, but it's stable and I can live a life around the RA without having to think about it all the time.)

  • Hi helix, couldn't hate you either :) I like that definition of control, and that's what I've been hoping for. I don't know when or if we'll achieve it, but from everything I've read it's too early for me to assume this is it. Stability would be awesome, currently it still feels like any given day can see any level of functionality and pain. Still, a lot of how I'm going to cope with this has to do with how I think about it. I want it all fixed, and yesterday, but I'm simply going to have to be more patient than that.


  • Well, I wouldn't accept that as 'under control'. As you are fairly recently diagnosed, it's unlikely to be damage done from RD, but active disease, even if slightly better controlled than it was. Thankfully, I only have a little damage and secondary OA. But I can tell the difference. If it's RD, it can flare everywhere at the same time, and everywhere and I feel generally unwell and exhausted ( as now😪 That is not to diminish the pain of OA, but I find it more predictable and tolerable.

    I wonder if you see a registrar or a consultant. I know that the registrars I have seen are eager for me to be 'successes' . My consultant is rather more critical. Well, that's how it seems to me. But what do I know; I'm just a patient!😸

  • I'm not sure what the difference is between the two. I see a doctor of rheumatology, if that clarifies it? I don't think this is controlled either, but she's going to do an ultrasound of my hands next visit, so hopefully that will give her more information both about possible damage and current disease activity. We mere patients can only tell them what we experience :P I hope you're feeling better soon, my friend.

    Good mevening :)

  • Hi Bats- great question and it seems that there are as many answers as there are people with RA unfortunately. The main thing is to keep on looking for solutions that work for you to deal with the pain and functional limitations.... I have started focusing on what I can do, not what I can't do. Keep on playing! Cheers Doreen

  • What brilliant replies to the eternal (and beautifully expressed as always) question so many of us ask. I can find nothing to add but just want to agree with every single response you've received here. Don't just accept pain until you have no choice but to accept it. Twitchy x

  • It feels like it darling. I can't imagine being in pain for the rest of my life,but i can't see anything changing with me either. Hugs darling.xxxx

  • I felt just like you so I kept a diary and showed it to my rheumatologist. I also explained exactly what it was like to have pain every day. She reduced my steroids, I then qualified for Biologics and the result was amazing. I would suggest 'telling how it is' and ask what can be done. We often paint a better picture of how we are feeling, I know I did but constant pain is horrible. Very best wishes, I hope you are feeling better soon.

  • I'm with you Bats. If this is the absolute new normal...well it sucks! I don't have any words of wisdom, but I can send gentle hugs to you.

  • Is this as good as it gets?...I hope not...This is the same question I have asked my rhuemy. He increased my drugs and I still am waiting to be normal again....I wonder if we are expecting too much of these drugs? I hope not...

    Take care


  • Livingston's response just freaked me out. I would say that my disease is currently "controlled". I have been about 10 months now without NSAIDs. Previously I went 11 months without need of NSAIDs. In between was a year of flare. I really hope that this is my new "normal" and that it remains controlled for much longer! 5 good years of 25 sounds extremely disheartening.

    Bats, in my experience, the rheumies only really know what our swollen joint count and blood labs tell them. WE KNOW HOW WE FEEL. So, yes, take heart what you read in your journal, that yes it is better, but KNOW that it's not "all better". Controlled doesn't mean all better, but it would be nice to know if what you're experience is the "new normal" or if it can get even better. Since you are apparently doing somewhat better, why don't you take some comfort that maybe you've reached the top of this sh*t roller coaster and are now heading down to a better existence. I feel like as soon as I told myself I was getting better last Fall, I actually started to get better. One day I just told myself, I don't think I need my Melioxicam any more. I halved it for 2 weeks, then stopped, and have never looked back. I don't think you can make yourself better just by telling yourself you're ready to be better, but perhaps shifting your attitude from utter despair to the teensiest glimmer of hope can actually help you to start feeling better.

    When we're in pain, we're just not ourselves. I don't know if misery loves company (I wanted to be ALONE when miserable!), but misery certainly loves misery. Happily tell yourself and anyone you'd like that your rheumy is full of it, but do take comfort if your journal shows that you're doing better.

    I've been feeling soreness on the bottoms of my feet first thing in the morning and when I made a fist this morning, my left middle finger complained just a little bit. Part of me started wondering if the good times were coming to an end. But then I managed to (sorry guys!) rip off the end of the tampon wrapper with just one hand "like I used to" before RA and I remembered that last year I couldn't do that. Perspective is a beautiful thing (and I really need to get to bed at a decent time!).

    Gentle hugs.

  • Thanks Karen, I'm feeling considerably calmer and more positive today. One of the things I know about myself is that it is far too easy to tip my mood towards despair and anxiety. I'm crawling out of that pit now, and looking around (thanks in no small part to the responses here). Yes, it is improved. I'm not going to hold my breath for 'all better', that sounds like a good way to turn blue and pass out. But I will take 'better' and worry less about controlled, I think. If I'm not flexible this disease gets way too much power in my life. I don't think my rheumy is full of it, I'm just afraid I'll be dismissed as too difficult.

    Perspective has been very important in how I've dealt with all the other crap in my life, so it makes sense that it would be equally important here. Thanks for the reminder! :)


  • Keep fighting for better control of your disease if you don't feel its good enough. I know it can get to the point where damage done is irreversible, but if it doesn't feel good enough control to you, then it probably isn't. If your rheumatologist isn't being helpful with suggestions for new treatment, ask them if it would be worth seeing a different rheumatologist to see if they could cast a fresh eye over your treatment and suggest a different way to approach it.

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