Pain thresholds - how do we know if we have a very hi... - NRAS

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Pain thresholds - how do we know if we have a very high threshold or are simply not in much pain?

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If disease activity is assessed on how much pain we are in then what happens if we are apparently not in much pain but have high inflammatory markers? I wish I could lend my body to the consultant and let him be the judge - but then I guess that would only work if he borrowed my brain as well?!

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Thanks Scouser! I am the opposite and often wonder where my pain is coming from when it wakes me in the night - and then it will take me ages to work out. Or when the GP tried to locate a vein and shoves the needle in a bit more and I wonder why she just doesn't try the other arm instead but just carry on chatting politely so she asks me "most patients would be yelling at me with the pain of what I just did but you just sat there calmly hardly flinching?" - I think I take pain for granted, having had a lot of it during my lifetime, although the exception for this is toothache which I really hate and believe I am oversensitive about.

I ask because I'm trying to fill in this arthritis assessment for my rheumy telemed clinic on Tuesday and it asks me to indicate how much pain I have at present by indicating it on the scale provided which conisists of a horizontal line with "no pain" at one end and "worst possible pain" on the other end. When I think hard about it I realise that I'm always in some pain in some joints but rarely register it now. I've tried explaining this to my GP but he just doesn't seem to understand that I find it almost impossible to assess? I wonder if others feel like this too? It only really concerns me so much because I fret now that I might have much more active RA than my pain represents.

If this assessment is so that my LA can know what services to provide for patients with musculoskeletal conditions then I'm not too bothered because I've accessed them myself with the help of my GP already. If however, it's to leave me waiting to see any of my rheumatology team apart from my GP for another 6-12 months then I will answer more strategically!

Tilda x

Mel_ profile image
Mel_

Brilliant question, interesting and makes one think. I have wondered if I have a high or low pain barrier. I often think that the consultant must think I am making it up as he does not seem to care if you say for example I'm 8/10 on the pain scale; he only goes on the bloos and does not care about anything else.

That's interesting Mel - I hate being made to feel like a hypochondriac so tend to err on playing things down and not making a fuss about my symptoms just in case he thinks I'm exagerating. My rheumy seems to be more guided by symptoms and by visible swelling but then I haven't seen him since I was diagnosed - and as I am always confused about symptoms and rarely have visible swelling but always have a fairly elevated/ high ESR (currently at 62) I would prefer him to go by bloods in my case! TTx

helixhelix profile image
helixhelix

For me it depends on where it is! I whimper v quickly at ear aches/ tooth aches and things near my head. And sharp pains get to me. But I seem to be able to tolerate quite a bit of aching pains, especially in arms and legs. So quite often don't even bother to take painkillers for my feet, as I'd only have to take more in a few hours time. And I also think that we do get a bit used to it. Typing this I'm realising that my feet hurt, my back hurts, I've got a stiff neck and several sore fingers. But if you'd asked me how I was a few minutes ago I'd have said I was fine at the moment!

But as far as filling in forms goes, I'd put your gloomy hat on and describe the worst day, not the best! I think it's a bit like writing job applications where you're expected to puff things positively - but in reverse. Go for the strategic approach, and a bit of artistic licence too. Px

hello Tilda (and Scouser, Mel and Polly!)

I get asked this every time I visit RA nurse or Consultant, My Consultant mentioned last time that it's something he's required to ask but also this is used to calculate a DAS score; I agree with Polly, put down your worst day.

Like Polly, I can tolerate certain pain but not toothache, feeling sick and paper cuts will have me in a whimper :) x

Judi profile image
Judi

Hi Tilda, filling in that questionnaire regarding how much pain I'm in - difficult as I'm permanently on tramadol and have steroid injections so have to guess what pain I would be in if I wasn't on those so I reckon it would be somewhere between 8 and 10.

Can manage most pains & aches without any noise but I give out an 'Oh' or 'Ouch' when it's a sudden stabbing pain (have been known to swear sometimes)

Last appointment wih rheumy nurse I was asked if the last rituximab infusion I had helped at all - could only ask rheumy nurse to look at my bloods as with tramadol and steroid injection I really don't know which one was helping me. Having next infusion tomorrow (Tuesday)

I think I had a high pain threshold years ago as after having our youngest daughter (she's 32) I was asked if I was always that patient (apparently I didn't make much noise) but nowadays with more constant pain and old age I may not be quite so patient.

Judi

cathie profile image
cathie

Will you be able to tell consultant that you have high pain threshold to help them interpret your answers? Good luck tomorrow

C xx

Hi Cathie - hey guess what THEY HAVE FOUND MY PASSPORT!! It was in the airport lost property this morning so all I have to do now is write a cheque for £13 and send it to them and they will post it back to me! Then I have to void the lost or stolen passport form when it arrives so no blips come up when I was to travel. I'm so pleased as hated the thought of someone making off with my passport and my identity. I was so cross with myself for letting this happen but am now feeling quite sympathetic to myself because I was really hardly able to walk and quite distraught so not surprising that this mishap occoured really!

Annoying also is that I've just trundled down the hill to see my GP only to be told that there's no record of my making an apt ten days ago - but luckily I can go back at 11am and see him then. So I rushed home to sort out this passport business hooray! Only got bloods at 11am and a rheumy apt on a video screen to get through now!! TTX

Belle76 profile image
Belle76

Hi when I saw a surgeon about a wrist fusion, he was pressing and poking my wrist etc my husband said is that hurting, I said yes it is, my husband replied well tell him. The surgeon replied to my husband people with chronic pain get use to the pain so build a high pain threshold. They get use to the pain and it just becomes a natural feeling of their body.

Yes this is exactly what I've just tried to explain to my GP but he didn't seem to understand what I meant. I told him that having grown up in a lot of pain with eczema all over I find it really difficult to quantify pain now but he just shrugged as if to say if the disease is active then you will be in a lot of pain and if it isn't then you won't simple as that.

I asked him if the MTX could be masking the pain and he said no it's not a pain killer so it is supposed to work by suppressing the disease not the pain - although pain should go as an indirect consequence of taking it. I am none the wiser for showing him the arthritis assessment - which he said was a way for the local NHS to keep the sequential process of monitoring the disease activity. He said it's a bit like the ESR - would only work if a pattern was picked up from frequent assessments/ ESR tests - one form was like a single high blood test - inconclusive and therefore not that useful.

So we will see what today's bloods reveal later on when I go to collect a print out. I feel a bit frustrated to be honest because last week I was in a lot of pain but my GP said to just go by the average which is very little pain - and it's not in my nature to exagerate. He didn't think it would make much difference to the way my treatment worked or the way I was monitored though so best just be honest and do as he suggests I guess. But the pain thing - now that continues to fascinate me because it's so subjective and yet so much seems to hang on it - for me at any rate! TTx

I've often wondered about this too.

I feel sure that I've learned to semi-disregard the pain I experience on a daily basis and that whilst my medication masks any new pain we get, I still know when it's arrived. If I concentrate on what hurts in my body I become a lot more aware of it and that the sliding scale measure would change accordingly.

I can only assume that the measure is for our general well-being and how we seem to cope with the pain levels rather than a measure of pain itself. They would then get a better idea of whether intervention is necessary.

So, if you stick a needle in one person's hand, who has developed coping strategies there may be no reaction. Someone without those strategies may scream the house down. Therefore, even though the level of pain its self is the same, the second person may be offered medication to help them.

I reckon that the effort it takes to suppress our pain is partly why we feel so knackered all the time and that we should allow ourselves some slack for that.

From now on I'm going to judge the scale on how much pain I can actually feel when I sit and concentrate on it and try and compare it to when I didn't have pain (hard one that). I think it would be a better indicator of how much it impedes on my life. - Oh God, We'll all be scoring 10.

Having said that, When I fell and dislocated my fingers my 26 year old skateboarding, surfing, martial arts dude reckoned I was 'hard core' and was boasting to all his friends about me. - That felt strangely gratifying.

Also - I guess it is better to rely as much as possible on non-medical pain relief if you can.

Hi Tilda, reading your question, you have hit a subject close to my heart. I am in the opposite situation, on abatacept, I have quite good blood readings, but am in pain and with bad mobility. I agree can we put our consultant ants into our shoes for just one day. It may be that you have a high pain threshold, but with RA, anything goes. I should listen to your consultant on this occasion, and don,t overdo things. I am relatively new to nars, but have loads of RA experience, I have found this site a godsend. Take care. Jennyx

Sorry you are in opposite situation to me Jenny - I would far rather be mobile and able to keep myself fit and active than be in terrible pain with poor mobility. I know this because last week my ankle was so bad I couldn't get my boot on it and a few days early it was my knee on the other side and had to be escorted onto the plane home as couldn't put any pressure on my left ankle at all without almost passing out.

When I got home and tried to walk the dog the next day after a couple of Naproxen, we only made it a mile or so before I had to sit down in the middle of a field as my ankle would take me no further. I did feel absolutely terrified that it would stay like that as walking keeps me sane.

On the other hand my ankle is always sore as if twisted now and I worry that they will just think "well she looks fine and she's not got any visible sign of pain or real mobility issues so let's just leave her on the current meds and see her in another 8 months to see how she's getting on". I think RA can be subtle for some people and just gnaw away without us really knowing what's happening until it's too late and the damage is done. That's my concern anyway which I've got to try and voice to the consultant on a video link later this afternoon.

Take care I agree with you 100% about the site. Hope the Abatacept works soon and you have less pain and better mobility shortly. Tilda x

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