warning! I'm about to bang on about my relative lack of pain and allegedly 'high pain threshold' which I can easily imagine might be quite offensive to those of you who cope so very well with awful pain on a daily basis .... but I'll try to explain!
Have just seen the Rheumy nurse. My appointment was right at the end of the day which made it impossible to cover everything I'd wanted to bring up especially as she'd forgotten her promise to get x-rays of my hands & had to suddenly leap up & arrange them pronto before the Radiologists went home.
But she did take a good look at my feet - first time anyone's bothered to do that. She agreed that they looked as if RA (or whatever) had been having a go at them for a good long while, considerably longer than the 2 years since diagnosis. She said that several of my toes look as if I have Dactylitis which I think raises the spectre of PsA. I've now had both feet & hands x-rayed.
That led on to the fact that I have little pain or at least nothing that I can't kind of switch off. She said that that makes me a very fortunate person in some ways but that it has hidden dangers. My mum was like me, possibly, an apparent whinger who nonetheless managed to carry on up until the point that serious illness manifested itself. In other words she honestly didn't know that something was up until it was too late.
My DAS score is in the high 5s - can't remember exactly - & ESR spiralling. So apparently if things are the same after another 12 weeks on mtx & Sulfa then the process for starting Biologics will kick in.
I find it very confusing. Time was I'd have been so grateful to hear that Biologics were on the cards but I'm too far down the road for such a clear-cut response. Looking around the waiting room, stuffed full of people who were really struggling, I almost felt like apologising for my presence & going home. I was easily the most bouncy person there. I have a husband who enjoys his work & doesn't mind supporting both of us pretty much so I can pace myself & that really suits me - my life is full & I wake up most days raring to go. I had to do that 0 - 10 thing about how well I feel & pointed out that if I was still working full time I'd probably have to give it a 10. But settled on 5. Even that felt like a lie - I just don't know how to assess my well-being or lack of it because I feel good but know that bad things are happening & it's an ongoing .... not 'nightmare' exactly ... but a weird dream perhaps. `
Please forgive me for going on a bit. The liver seems to be holding up so I have had a couple of glasses of wine. My experience just doesn't seem to tally with that of most people here though this site is a fantastic source of support & I'm so grateful. I just seem to be getting worse but don't feel it, it's very strange. And I do worry that at some point the birds will come home to roost, sort of thing.
If I do have a high pain threshold it's certainly nothing to do with strength of character - just a few days of constant pain & I'd be crying out for the strongest drugs going! It must be my neurons - no sense, no feeling, perhaps!
God, what a long blog! I'll regret it in the morning!
oh gosh.. not the longest blog.. think with das score biologics prob needed. they often give less side effects than some of the dmards?? ,IM Probably wimpy with pain but how do we know.. there always people lot worse you are right, but when in agony, nothing gets in the way of the pain.., there are also people a lot better...
actually its wink quite a long blog.. have you been on that advanced blogging / bookwritng course x?
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Never mind me, what happened with you today??? (And no, no training, sadly long-windedness comes naturally!)
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And also, I did solace myself on the long drive home with the thought that Biologics are meant to put less of a strain on the body than DMARDs ... but they just seem like a BIG THING ...
Luce I can relate to how you feel about this. The great thing is that you have a proper rheumy team who can identify your DAS and treat accordingly without paying too much heed to your own pain responses. This means that you are unlikely to have a similar experience to you mother's. And it is comforting to think that we don't feel pain as others do perhaps but it's also quite frightening I feel. It messes with your head.
Hope the biologics work and it's good that you don't have to go through some horrible form of torture to get them as others do at least. Tilda xx
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Yes, 'messes with your head' is it in a nutshell. Will be relatively un-messed up by tomorrow but meanwhile your understanding is much appreciated!
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Hi Woolly,
I was going to suggest you spoke to Tilda to form an 'impervious to pain but totally messy head club' but I see you have already been drawn to each other like a magnet. xx
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Anyone can join! The door is open - or maybe just unhinged!
I think we all try to get on with our lives - that's the big one isn't it? I do get aches & pains though, just nothing that stands out - insufficient alarm bells. And went to hairdresser yesterday - sat in front of that damn mirror I got that sinking feeling - I looked grey & feel like that too.
But just getting on with it is the only thing to do now - I'm going to try & ignore it all as best I can. Thanks John - you put into words not what I've been doing but what I intend to!
Luce, it's quite refreshing to hear someone else talk about their high pain threshold. I too have quite a high threshold to pain to the point where I walked around on a fractured hip and it wasn't until I had an xray some 8 weeks later I was told that it had healed itself! I've had JRA from the age of 2 and was always told to 'keep going' as long as possible before getting the next joint replacement! So this is what I do, now I get told off for not taking care of myself, and like you have been told I'm more ill than I think!
But this is the way I am now, I can't change the habit of a life time! Everybody is different though and have different thresholds to pain. I did feel better when I was on biologics though. I had to stop them due to a bone infection. I'm hoping I'll get them back soon. When I was put on it I do remember thinking 'I must have been ill' because I felt so much better on them. So you never know it may be a good thing to go on them.
I'm very pleased to hear from you too! It's such a relief to hear that others have similar experiences - thanks so much. I also can relate to what you say about retrospectively realising how bad things were - that's happened to me a few times.
They say that I'll get Biologics if I fail on Sulfa but I doubt it would be that simple somehow! But if it does come to that then I'll give them a go. At the moment I feel that my Rheumy & the nurse don't think the DMARDs will work (I want them to, though)) and because of the NICE guidelines I'm sort of parked on the Mtx / Sulfa combo for 3 months. I'm sure this happens to tons of people.
I'm sorry to hear that you've had to stop the Biologics & a bone infection sounds nasty. Hope you are able to resume the treatment soon.
I also think there's something in what you said about how you'd feel if you were still working full time, as it's not just about dealing with pain but also about having to deal with everything else too. You can cope with either, but not both. When I was still working I was a mess, and the constant exhaustion was dragging me further and further down. Since I've stopped working full time, I have the flexibility to manage how I feel and it has just just turned things around hugely. I'm still on the same triple drugs, and my DAS is pretty much the same as still gets periods when it's around 5'ish (ie just below biologic threshold!) but I feel like a rejuvenated person.
the other thing I've started realising recently is that changes are fairly slow and subtle. My rheumy has been on maternity leave, so when I last saw her it was the first time for over a year. And that made me realise that I had got worse, and that actually my degree of pain was worse too. Although I had been bumbling along thinking I was pretty stable, as no great difference week on week, Actually it wasn't like that. And since I'm hoping for at least another 25 years, then that's actually more important to think about than whether today's pain is good, bad or indifferent. So don't knock the idea of more full on treatment... Polly
I do think there's a very fine line between putting the disease to the back of your mind when possible, in order to get on with life and keeping sufficiently vigilant to take action if needed. It's quite a balancing act & I'm nowhere near getting it right.
If I understand you correctly then you are saying that being aware of change is more important than focusing on pain, from the point of view of having the best life possible for as long as possible anyway. I do agree with that & my overriding aim is to slow the disease down so yes, more full on treatment if necessary.
But I think the way I personally keep it together is by falling apart now & then. And that's what happened yesterday - I keep thinking I'm up to speed with reality only to be shocked when confronted with it - certain things just hit me in the gut. I'm hoping to get wiser!
Yes I feel you're right it's a very fine line. Putting the disease to the back of my mind is difficult in itself, but then when i find I'm 'getting on with things' the disease comes back and bites me on the bum (putting it nicely) then when I notice somethings wrong it's usually pretty drastic!
Again it's so refreshing hearing you say 'the way I personally keep it together is by falling apart now and then' because this is exactly what I do! I personally am finding the older I get the harder this disease is, but then I have been battling it for nearly 40 years!
I even had confused & angry dreams last night to complete the misery good & proper & woke up feeling fine so definitely works for me ..... though maybe not always.
40 years is such a long time - time was I'd have wanted to ask 'how do you cope?' but I've had this disease just long enough to assume that we all cope somehow but nobody copes as well as they'd like to ....
I suppose that acceptance or at least more deep-seated acknowledgement of things like irreversible damage happens in time? I'm becoming so aware of the tricks my mind plays on me! 'Yes this is happening' and 'no it isn't' coexist quite easily!
I'm not sure I do cope Luce! Because I've had this disease a long time I've been left with alot of joint damage so I get damage pain and rheumy pain, it is very difficult to separate the 2 when asked by the rheumy specialist. Everything you say Luce sounds so familiar and it's nice to hear someone else say it. I have never accepted this disease, because for me accepting it is to give into it and this is how I get through each day. Plus I have a Counsellor which really helps me! All I can say to you is trust your rheumy team but also listen to your body as no-one knows it better than you! I told my knee surgeon I had an infection because I knew my body. He said it wasn't and guess who was right!
It blows my mind how much input we need to provide into our own care with this disease. Friends keep saying that I've 'gone very medical'. I try to explain that it is not because I suddenly love illness and everything illness related but that because even a smidgeon of what I know now might have prevented some of the damage I sustained while doctors were busy testing my flipping thyroid etc. & telling me that if it was RA it would take years for anything lasting to happen.
I hesitated to use the word 'acceptance' in replying because I know it suggests giving in. I think I probably take a similar approach to you. I don't like the phrase 'fighting it' either - I know what people mean of course & it's just words - but it does suggest daily fisticuffs with an invisible foe! Exhausting! But I do punch the air and shout at 'it' sometimes!
it is quite amazing how it can just suddenly get to you. Most of the time I'm fine, or even more than fine, and then the whole idea of this damn thing just overwhelms me. What seems to be helping right now is allowing myself to be v indulgent on weds mornings (I take MTX on Tues night) and a bit solitary and then I can cope the rest of the week. But if you find a box of wiseness anywhere that helps, then please share.
And yes, I try to concentrate on my overall state rather than each bit that hurts. But then my pain is manageable, so no idea how I'd cope with the sort of pain others describe. Px
I'm beginning to realise that some routines have become quite important to me - any changes of the drug regime really throws me & all the snow we've got hasn't helped because that's knocked things out of sync too. I can see that it helps to be quite definite about how you organise your life - it's a bit of control as well as building in time to chill etc. All this is rather new!
This is such an interesting blog although I'm sorry that you've had to go into a kind of meltdown and for the cause too of course. I feel that its a real problem of this site when pain becomes the measure of disease activity for everyone.
I recall bouncing into see my GP last year (May) feeling quite certain that I was in remission - with only a vaguely aching ankle to indicate any problem had ever been. It wasn't even in my joint and felt more like a slight twist rather than the searing pain of my wrists previously. My GP seemed pleased too and we discussed writing to the rheumy to talk about reducing doses again. When I phoned from down in Bristol where I was staying for work - I learned my ESR was 62. I was completely baffled but then after a few weeks of travelling I had proper abd debilitating pain in my ankle and knees. But once again I decided that it was all because I hadn't been doing my daily exercises what with travelling. I seem to go into meltdown when there's no pain at all which is completely daft I know - but I need the pain to reassure me that I do actually need to take these meds. I think we need reminding that for some pain and active disease don't always equate just as for some inflamnatory markers or bloods and disease don't equate either.
I would feel exactly as you do about starting biologics but really do think you should trust rheumy team. In fact I'm really envious and impressed that you have such a good team. I strongly suspect that if you lived here you would be abandoned for lack of pain and only have your high DAS observed or treated when it was far too late. The biologics are meant to be brilliant and hopefully if you do get them you will feel like a new, less grey woman very quickly. Tilda x
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I'm quite gobsmacked by the fact that the Rheumy team seem to be so proactive all of a sudden and aren't letting my lack of pain cloud the other issues. It's only now starting to sink in. I have been quite forceful though, nearly bust a gut trying to communicate clearly to them instead of going off on my usual tangents! I'm impressed by them too.
I'm sure they do cut some corners - I had blood taken at the GP surgery before the appt. and the very knowledgeable Practice Nurse was adamant that the hospital should have given me an MRI scan ages ago. She told me to tell them that from her - I didn't though, just pleased to get x-rays.
I think we all need to know what's happening to us - some of us may want more information than others but it's a basic human need to feel we understand what is going on. I have experienced severe discomfort with this disease and never want to again - but it did lead me to a simple equation 'can't stand this! Need drugs!'
Without that spur it's possibly even more difficult to come to terms with the prospect of needing such serious drugs long-term. The daft thing is I seem to tolerate them quite well! I'm sure we all get scared sometimes.
Hi Luce. Yes scared is the word! Although I'm sorry its an ongoing issue for you I'm really grateful to you for raising this matter of pain thresholds in the open forum for discussion. I'm going to blog about how this has influenced/ affected me and what action I've decided on now. Tilda xx
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Hi Tilda,
I'll look out for the blog but, like you feel that as pain is so subjective, it shouldn't be used as the measure for treatment - although it is more often than not used by us as a guide for when to seek further help.
Given that inflammatory activity is an indicator for potential joint damage it would seem that the optimum time for treatment would be at the higher activity but pre-pain levels. Maybe we should be having more frequent blood tests. I must say, I'm a bit rubbish at remembering to book mine in regularly and frequently have to be reminded by the rheumy team. Not a good example for managing my own disease.
Judy xx
ps loved your blog about your party. Also loved the dress. x
Thanks Judy - you're a love but it wasn't a dress it was a semi transparent checked shirt with a tie up front - cost loads but with a black vest and black skinny jeans and boots it meant I could dance all night without roasting! Xxx
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Methotrexate is making my life hell!!!!!!
What to do? What to say?
RA, PSA, lupus or what?!
