Can RA be active without any pain?

Mat48 · 29. Nov 2013, 05:21

Following on from Anna's (Boomer's) thread about active disease I was reading something yesterday for a presentation I'm to give next year - and spotted a paragraph saying that for some people RA went away after a few months or years. This isn't the usual information I've been given but it was a reputable site and made me wonder. One of my GPs has said a few times that she hopes my RA will go away once my hormones settle down after menopause.

It's hard to reconcile myself to having something chronic and long term when there are these big glimmers of hope. And just now all the pain and most of the stiffness has gone away a week after I started Hydroxichloraquine again - so I'm wondering if anyone reading this has had experience of being pain free for a while and then the disease returns. I'm trying to just enjoy the present and get lots done but I have a CBT assessment next week so I'm also trying to work things out a bit in advance of this talking therapy.

I know there can be drug induced remission but I've had four months off injectable Methotrexate now and my flares since coming off have been pretty subtle on the pain front and I have sustained no erosions yet. I can't see that Hydroxy could possibly work this quickly - it says 3-6 months on the sheet? I do still have icy white toes often and my legs are always a little numb and wet feeling and I have facial hives on and off so I am not 100% well - but I'm sleeping much better and not waking with pain anymore or hobbling at all. I know it's early days and trying not to let myself get too excited as I've been here before - but I did just wonder if anyone knows of anybody for whom RA has upped and left in the way described?

suzygirl · 29. Nov 2013, 06:12

I can't answer your post as I don't know enough about RA. However I wanted to say that one of the hardest things to come to terms with is the unpredictable nature of these illnesses. I was in denial for some time and told myself each time I had a good day that it had gone and didn't accept the nature of the beast for a couple of years. Mentally and emotionally it caused me great problems. Then I came a across a book called Coping with Lupus and it covered all the emotions you feel with a chronic illness.

The chapter on flares and denial was me to a 't'. It said if you accept the fact you are on a roller coaster of ups and downs you will cope better and it is true. I now live day to day and am thankful. I am not saying this is you, but I really hope the CBT helps you as you seem to be struggling.

Chronic illnesses challenge us in huge ways our perceptions of illness and disability change, our limitations and expectations change. It is hard. I wish you well and hope you have understand what I am trying to say and haven't come across patronising.

Kittkat · 29. Nov 2013, 06:57

Hello I have heard it can yes I don't have any scientific explanation for that I am afraid x

Mat48 · 29. Nov 2013, 07:04

Suzygirl I really could not feel less patronised by your reply. You are very right that the unpredicabiliy of these conditions is very bewildering. I just feel such a fraud at the moment - but I always have times when I feel like this. Its just that I read of so much pain and suffering on here and it makes me feel guilty for even posting :oops: . But then I read something like that statement about RA going away for some - and my GP says stuff about hormones - and I wonder if I should be letting myself hope or not? If I expect the pain to come back and it never does then I might have been stopping my natural sense of optimism in its tracks for no good reason?

This must sound self indulgent to those who are constantly in pain but I think perhaps the variability of my RA messes with the head a lot and it helps to get a reality check every so often from those in similar circumstances. Yes hope CBT works well and gives me a better way of dealing with the rollercoaster than I am doing presently. Thanks Suzygirl x

stickywicket · 29. Nov 2013, 07:07

Mat, Mat, Mat, what are we going to do with you

You have RA. Really. It can wax and wane independently of the meds but, as you've just resumed hydroxy, I'd guess it's mainly waning because of that. Don't analyse it. Just enjoy it

Suzygirl is spot on. It's not the despair, it's the hope that drags us down, always chasing rainbows, trying to be other than where we are. Just find the good bits of where you are. After 6 months or so, if the signs are consistently good, talk to your consultant about trying to reduce your meds very, very slowly.

I've felt pretty good for some years now. (Mind you, with replaced hips and knees and fused ankles and wrists I ought to

) So I asked my consultant, when I last saw him, if I could reduce the meth from 15mgs. He was reluctant as my CRP markers were high but let me try for 12.5mgs. I've just sorted out returning to the higher dose as one shoulder and elbow are not happy on 12.5. I was 'better' because the meth was working not because I'd gone into remission.

In my early years I had good times and bad but I still had RA. Please do 'enjoy the present' but please don't 'get lots done'. It's not an either/or situation: it's a both/and.

As for the CBT, I've never had any and really know nothing about it but I'd have thought the point of it was to just relax and let spontaneous thoughts surface, not to work out precisely in advance what one will say.

I know it's hard but I really think you'd be happier if you just accepted you have RA, sometimes better and sometimes worse, and that you need the meds for it and, if you start to feel better, that's a good thing but not a reason to begin doubting the diagnosis.

Mat48 · 29. Nov 2013, 08:03

It's not the despair, it's the hope that drags us down, always chasing rainbows, trying to be other than where we are

This is so true SW. I read your pull-your -hair -out -with-this -woman first sentence and laughed out loud because that's sort of how I feel about myself too! :roll:

Last night at choir practice I had a moment or two when my wrist suddenly started burning as I held the music (a huge book of carols!) and my heart thumped in terror. But it went away so I obviously imagined it.

I think the stuff that plays with my head is the way my RA (see SW I'm not saying I don't have it - just wondering if it might have gone away!) had arrived so suddenly and excruciatingly with no warning or triggers and then tortured me to pulp - caught in town unable to drive home or get down the stairs - before heading back off or trying some other part of me. Its been so swift and brutal in this way before that part of me tries to anticipate it but the other part (growing bigger as time passes) says this was all a freaky happening and won't repeat because it's gone away now.

The bit in between is just like you SW and gives myself a round telling off for being so black and white when things are far more subtle and complex in fact. I accept I've had some form of arthritis and that my autoimmune system has been involved - but as the interval of time passes between now and last torture episode (7 months ago) I start gathering the lethal dose of hope again. :roll:. 'Tis tragic I know but there it is

Ironically the CBT assessment lies on the tenth anniversary of my dad's sudden death. He had loads of huge health issues (much bigger than mine) and was very like me in the way he dealt or didn't deal with them. At least I've put myself forward for this CBT - he would never have dreamt of such a thing!

Kittkat · 29. Nov 2013, 09:16

Hello
I say just enjoy the good times when they are here. Early on in the disease I feel there is a lot of anger,stress and worry. It does get easier. I think you are 'lucky' that you are getting some relief. I'd just take each day as it comes.
I didn't think I would accept having arthritis. But I feel much better now that I have. I never used to be even able to read about it without getting angry.
I think some people's RA can go into remission or go away completely and no one knows the future.Hopefully it remains calm for a long time for you. I hope you feel better soon. Good luck with the CBT. x

Mat48 · 29. Nov 2013, 10:12

Thank you Kittkat. X

barbara12 · 29. Nov 2013, 11:03

Sorry I cant offer any help..but I do think that most illnesses can go into remission..ooh wouldn't that be good...hope things improve for you very soon Mat..((())xx

Toots · 29. Nov 2013, 11:58

New to all this, but wanted to throw in my tuppence-worth. None of it is reassuring, as such, but I read a lot of hope in your posts here and while I would never be one to throw hope out of the window, I think a realistic approach may mean a better level of acceptance.

As I understand it, RA will never 'go away'. It's a chronic condition meaning there is (at present) no cure.

It can often be managed into remission with appropriate medications. Likewise, medications sometimes do not result in remission.

The Oxford Dictionary definition of remission is a temporary diminution of the severity of disease or pain

Now please don't get me wrong Mat. New to this as I am, I'm ever hopeful that this will all just go away. I have days where I think 'huh, I'm actually not sore today, I'm a total fraud' and then I start second guessing myself. But the other days, like today, when my toes and ankles are killing me and I don't know how the bills will be paid because I haven't been working as much as I need to, yeah, those days make me despair. I know some of the facts as highlighted above - it doesn't mean that I personally have accepted them any better than you have. Sucks, doesn't it? Enjoy your respite while you have it x

Hugs!

dreamdaisy · 29. Nov 2013, 12:18

Your RA will differ compared to the others on here with the same label because yours is unique to you, as is the way you adjust to it, cope with it, deal with it and live with it. DD

Mat48 · 29. Nov 2013, 12:24

Thanks DD - don't mind me I was just sneaking in with my stupid doubts while I thought you were too busy packing :roll: xx

Boomer13 · 29. Nov 2013, 12:39

I really think this is tough for you. A bad kind of torture where you never know when/where it's going to flare up again. After 8 years with my illness, I still dread the mornings that I wake up and feel reasonable because I leap mentally with the hope that maybe it's getting better. After 8 years! I have thought a lot about it, and though I don't think I have dealt with it, I know these things:

* Humans have a natural tendency to optimism (as a strategy for self-preservation) when they are under stress, so it's very natural to have this hopeful reaction. So don't beat yourself up for having it.

* These diseases have a strong genetic component, making it more likely that you are just in a period of low disease activity.

Also, the fact that you are having Raynaud's-type episodes regularly plus your recent bout of autoimmune hives make it less likely your RA has completely remitted. There is also the palindromic type of RA. (I fit that pattern for a while, back when my doc thought it was RA that I had).

My first GP always said I would get better with good self-care, no stress (ha! is this even possible?), etc. It didn't happen, and I think he did me a real disservice by planting that seed of hope in my mind. He turned it around when I got worse and said he'd "never seen anyone not get better before" Which is like saying it was my fault I didn't get better. This messed me up for a long time. I'd be very sceptical of your GP hinting you are healed of your RA.

I think back on my life before I had strongly identifiably joint pain and I realise I have had symptoms for my whole life: long periods of unexplainable unwellness, unreasonable fatigue, back pain from age 17, and other problems that were so vague they were not worth mentioning to a doctor. I also had joint pain as a young person which our family doc put down to growing pains. Knowing what I know now, I think these were minor flares with long periods of feeling ok in between.

Some may say I'm making too much of this, however, it helps me see my current problems as part of a long-term illness, and I deal with my current situation better as a result.

Sometimes I wake up and have this feeling of complete disbelief that this is happening to me. It's because I worked so hard at always eating properly and was extremely fit for, and from, my job and hobbies. So how could I possibly have become this ill? For me, just saying "deal with it, you have a chronic illness" doesn't help much. I'm still figuring it out and because I've lost career, hobbies and other things that were dear to me, I expect it will take a few more years to fully deal with those losses.

Maybe something in my note above is helpful for you? I hope so, and thank you, it's a helpful discussion.

xxAnna

Mat48 · 29. Nov 2013, 13:00

I thinks its such a relief to have others like yourself to share these hopes (false usually) and doubts with Anna - I'm glad you feel the same way although sorry that your suffering is so great just now of course.

A young woman at the AC self management course I attended last week told me she had suffered RA since she was 15. She had tried Sulpha (severe reaction) and Hydroxy but hadn't tried MTX yet because of wanting to conceive. She had already had knee replacements and a hip and was needing a shoulder op now. I was slightly shocked at how little she had seen of the rheumy. She said that she had been so excited when she started the Hydroxy because her ESR had dropped from 60s to 20s within a week and the boils/ hives on her neck and scalp had dwindled to nothing at last. But she had to quit after 3 weeks because of extreme muscle pain bad stomach issues. So I'm thinking, as she knew nothing about the meds really - perhaps the Hydroxy is very effective for some of us straight away. Certainly last time I was on it my joint pain went away for a month or so where I had been taking MTX alone for six months and was still flaring. I thought this was the combination but perhaps not?

This woman also told me that the other rheumy - now gone - had said she might not even have RA and she had been reduced to tears by this comment. He seemed baffled by this but I can understand it. We have a deep need to know what is going on and if we've accepted something and then get told, almost incidentally, that it might be something else, its unaccountably difficult to take on board? Xx

Can RA be active without any pain?

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