Recently Diagnosed (╯︵╰,)

[JayCS]

its a method to show how you tolerate pain - every one tolerates pain diffenty - If I tolerate pain less then I need less pain medication if I don't tolerate it then I need more pain medication - it is near impossible to describe your pain to another because they overlay or liken their pain to youirs even thro they are totally different. - how many tines have you heard I feel your pain or I know what your pain is like those two sayings are an impossiblilty. The best we can get is a tolerance level untill some thing better comes along
but actually that shows "sensitivity", and not really "tolerance""
is not sensitivity not the same as tolerance? and I do not believe that there is a "normal" level of pain be it tolerance or sensitivity. The effect of pain on a pereson is a personel subjecticity to a 6 year old who stubs her toe the pain would be 10 to a 76 year old who stubs his toe the pain may not even register.

Hi John -

Well I seem very different to you... - in that...

• my pain tolerance is always high, pain scales don't show that at all, they show changing pain levels.
• despite severe fibro & severe MCAS & more, I do without all pain medication, wouldn't tolerate it...
• I find it just as easy or hard to describe to others as any emotional feeling I have...same listening.
• "feel my pain" to me means that people have empathy, and that's great.
• I experience many ways for people to liken pain experiences to one another, despite our differences.
• I see a big difference between pain sensitivity (mine is medium) and pain tolerance (mine is high).
• "normal" pain I said & meant as normal to me, which you will likely allow me to believe. To me it's the base level of "severe Ache" I have most of the time, which used to be 4, now more 2 or 1, because of pacing well. That doesn't include regular fluctuation up to 5 or 6 from overdoing it or any local pains should they flare, which at the moment is mainly bladder, esophagus blocks and would you believe my finger tips, esp. right thumb, but can also be others.
• "your" 76 year old would have no pain sensitivity, but that says nothing about his pain tolerance,
• when I stub my toe in certain ways (e.g. toenails involved) it's excruciating, 7 to 8. I can gasp, shout, whine or suppress all audible utterance, as I wish/is needed. But my tolerance is still high, and I can increase it willfully with various pain management techniques, including in that sort of situation a kind of inner deflection of it. What I can't directly influence is the exhaustion that it and its after-Ache causes. That's exactly my main problem, not the pain/Ache. I can only influence/shorten this by intensifying my rest time, e.g. with Yoga Nidra.

As said I can well imagine that we are very different in experiences in these respects.
But I think I wasn't able to distinguish these types of experience at the beginning of fibro, so believe it has developed strongly over my 3+ years of severe fibro, because I realized that closely analyzing my pain experiences and their triggers was my main chance of improving the pain amount, as well as my tolerance / coping, which I succeeded with by doing so (I know 90% why anything hurts & what I can do for it, and am continually learning).

 

[johnsalmon]

my introduction to fibremyalgia was pain to the extent that I could not see any reason to live - on change of doctor with new medications I have basically a normal life with irregual flares from my Hasitmoto's and "fibrromyalgia" those flares are painfall etc but I now know they will not last so I can tolerate them (to me about a 4-5) whether its tolerance of sensitivity it does not really matter - it is a method for me to tell the doctor what my pain level is nolthing more nothing less a level of 10 to me may be a level of 6 to others but again that is irrevelnt because the index is not designed to match your pain to mine

 

[JayCS]

my introduction to fibremyalgia was pain to the extent that I could not see any reason to live - on change of doctor with new medications I have basically a normal life with irregual flares from my Hasitmoto's and "fibrromyalgia" those flares are painfall etc but I now know they will not last so I can tolerate them (to me about a 4-5) whether its tolerance of sensitivity it does not really matter - it is a method for me to tell the doctor what my pain level is nolthing more nothing less a level of 10 to me may be a level of 6 to others but again that is irrevelnt because the index is not designed to match your pain to mine

Agreed the scales are about the development of personal pain levels/amounts, like we said above.

However it does very much matter if we can increase our tolerance of pain, despite unchanged pain level.
Your dire distress at a high amount of pain would seem to serve as an example of low pain tolerance.
Your meds have lowered the pain levels & length by hopefully reducing some of the causes, praps suppressing them. If pain gets less that doesn't mean the pain tolerance has increased.
A high pain tolerance is when we continue to have a high amount of pain, but we don't mind, it doesn't get to us, we don't listen to it, it doesn't make us unhappy, let alone lose interest in life.
This may seem a closed book to people who've never tried, or unsuccessfully so.

Pain tolerance is how well we mentally cope with pain, whether we can decrease its level or not.
We may be blessed with a higher pain tolerance, but we can also increase it mentally using techniques like radical acceptance / ACT, which includes mindfulness and changing our approach to it.
We can also increase it physically with mental & physical relaxation, by decreasing tension. This may also decrease the pain sensation / level / amount, but doesn't do so necessarily.

Another example might be going to the dentist (where I've just come from): People with low pain tolerance are more likely to get in a panic about even slight pain levels, people with high pain tolerance can feel a high pain level but know / have learnt to tolerate it easily. I used Yoga Nidra and for the first time twist-stretching my legs to either side, which in that combination was brilliant, I've never felt that relaxed during and after. I think that's the last bastion of (lack of) social courage to fall, after I sit twist-stretched on the floor at my new pratictitioner's and lie down, half or fully, on a mat at the back of church when I need that.

It's great when we're able to reduce our pain levels, but increasing our pain tolerance can add to that.
And if we can't reduce them (any more), it's all we have to improve our quality of life.

 

[JayCS]

I'm now considering "pain tolerance" vs. "cold tolerance" and thinking up the image of "fatigue tolerance".

Previously, I suggested pain tolerance is our mental coping with pain. However cold tolerance is not our mental coping with the cold it's how much physically the cold causes pain. So similarly we could praps say pain tolerance is how much the physical pain causes mental pain. Fatigue tolerance might then be how much physical fatigue causes mental pain, praps also mental fatigue = brain fog.
I would then say I also have a high fatigue tolerance, because I have so much I can mentally do when I'm physically fatigued, that I thoroughly enjoy myself, even with only 5% energy and not able to move.
Whilst my cold tolerance depends, for short sharp burst of cool it's OK, but soon turns into pain.

Alternatively, that's what I'm now thinking some/you mean, pain tolerance could be understood as the amount of pain which a certain set stimulus sets off. Then it'd be more physical. E.g. a tender point pressure of 4 kiloponds on some days may cause a pain of 5, on others a pain of 1 or 0.
Here though, I'd contend that this should be termed the amount of pain sensitivity. It's not the tolerance (not minding it) of the pain that is better or worse, it's the threshold (not feeling any pain) and the sensitivity (level).

Cold tolerance in the sense of not minding a short sharp shock it I can also influence, e.g. by breath exercises shortly before the shock comes. What I can't influence mentally is the amount of pain the cold causes, altho a certain supp worsened it for a time. Also practice helps me get used to it, improving
my mental cold tolerance, my physical cold tolerance and my cold sensitivity.

As said if we can't see the difference we can't improve it.
To improve it we need to find ways of distinguishing these, which isn't easy and needs thought & practice.

 

[johnsalmon]

Your dire distress at a high amount of pain would seem to serve as an example of low pain tolerance.

so some one gets run over with a tractor and has servre pain leading to death would point to a possible low tolerance of pain.!! my distress pointed to servre pain not a low tolerance if however I got a splitner in the finger and came to the point that I could not see any reason to keep living because of the pain from the splinter would point to a very low pain tolerance
you tend to look at the pain index the wrong way - it is simply a way to describe your pain level to some one else. paramedics down here use a index to decribe heart pain - is it like a dog sitting on the chest is it like a horse sitting on the chest or is it like an elephant sitting on your chest - it is simple used to allow the paramedics know how servre the pain is - nothing more nothing less.
"fatigue tolerance". if you have fatique your body will respond to it and either sit, sleep or snooze can you have a tolerance to fatigue - debatable if you are fatigue then your body wants to rest and recover if you tolerate it then it can lead to further more serious events.

You know we could go on talking about pain levels and tolerance to the cows come home however it is all irrelevant as pain is a private personal thing that differs between people.

 

[JayCS]

so some one gets run over with a tractor and has servre pain leading to death would point to a possible low tolerance of pain.!! my distress pointed to servre pain not a low tolerance

I don't want to disqualify how severe your pain was in any way, that's not what I intended.
As you used it as your example to try to show that pain level and pain tolerance is the same, I was trying to explain what I see as an important difference.
Being run over by a tractor is life-threatening, something that can hardly compare, however.
Some people in continually severe chronic pain without relief (usually kinds that lead to death) do want to end their life, others wish their life would end somehow, again others radically accept even that, they can make their peace with the pain, even knowing they are going to die and don't want to die.
Things that make it harder to accept the severe pain are being stuck in the grief stages of denial, anger/opposition or depression, or feeling cheated by life etc.
This doesn't help in that situation, it just makes it worse. So it's good to live each of the grief stages intensely if necessary, to pass on to the acceptance of it.
But our severe pain doesn't lead to physical death, "just" the death of our previous active life.
So it's also good to grieve, and even better to come thru to an acceptance that motivates us to actively do something about it.

I don't know of course how mentally pain tolerant you are. But if you aren't aware of the difference between pain level and pain tolerance, it's possible that yours is lower than it could be.

if however I got a splitner in the finger and came to the point that I could not see any reason to keep living because of the pain from the splinter would point to a very low pain tolerance

Well the pain from a splinter can of course sometimes be excruciating, can make even adults shout, cry and moan, so the level can be high. The example is (like a stubbed toe) not quite fitting, because of the time factor. If that acute pain would remain at exactly the same level (which it doesn't of course) but become chronic, however not life threatening, then we'd have a better example, because we'd be talking about our tolerance to ("acceptance of") severe chronic pain.

But sticking to your example all the same: maybe it does help you see that pain level and pain tolerance is not the same?

you tend to look at the pain index the wrong way - it is simply a way to describe your pain level to some

No, we've been completely agreed all along in this point. Just you also called that a measure of pain tolerance, instead of only for pain levels, and that I see as missing a crucial point.

"fatigue tolerance". if you have fatique your body will respond to it and either sit, sleep or snooze can you have a tolerance to fatigue - debatable if you are fatigue then your body wants to rest and recover if you tolerate it then it can lead to further more serious events.

Again you're focusing on the physical side, while I'm talking about the mental side.
Definitely agreed when I'm fatigued I need to give my body rest (which I usually do).
Secondly, I do want to add: if I am able to push thru it because I want or need to,
then that could also be called 'fatigue tolerance', which I however do not mean.
Thirdly, there are a few types of fatigue, where I know I can push thru a bit without harm.
Lastly, what I actually mean is that I do not mind or worry about being fatigued = tolerate it, because I welcome the rest and the things I can do online, so very easy for me to accept.

You know we could go on talking about pain levels and tolerance to the cows come home however it is all irrelevant as pain is a private personal thing that differs between people.

As long as you don't see the difference, it'll continue to be irrelevant to you.
But I still see a crucial difference for everyone, because we are able to improve our pain tolerance and that can help cope with all pain levels, mild, moderate and severe.
It actually has nothing to do with the pain level, it's even the case that the tolerance proves it self when the pain is severest, not when we don't feel it.
The man with the axe in his head that the pain expert Lorimer Moseley gives as one example for how pain works does not feel the pain, he can talk and joke around, so his pain level is zero, or close to it, his body does not transfer the sensation. That in no way means he is pain tolerant though.
(My wife & friends call me very pain tolerant, because I never complain, inside or outside, although they can see the severity of my pain; I can feel it, and do not suppress it, but fully embrace it, and then can freely work on improving the pain level whenever I feel like it.)

So I think it's vital to continue to try to explain it, more so if others don't (even if that's probably unpopular with those people who think relaxation, therapy and radical acceptance etc. are useless for coping and improving our lives).

To say "we can talk until the cows come home, but I'm right" is - among other things - not convincing....
I'm trying to listen, think, understand, learn and help myself and others in this complex matter of ours.
I think you may mean some more physical definition of pain tolerance, and after thinking it through there seem to be several possibilities, but up to now I was of the impression that mental tolerance / acceptance is what most people here mean with it. If that's not the case then maybe it'll help if I call mine "mental pain tolerance".

 

[johnsalmon]

the easiest way to work this out is to survey all members asking them who feels the same pain as me - its an impossibility as pain is an abstract that depends on a single individual I might say my pain is 10 and some one else states that their pain is also 10 but that does not mean we have the same pain intensity just that we feel pain differently - factors that make that difference are many one could be quality of life. Pain is an abstract the index is a means for a doctor to determine at what level your perceived pain is or how that pain impinges on your quality of life. not how much you tolerate pain

 

[JayCS]

asking them who feels the same pain as me - its an impossibility as pain is an abstract that depends on a single

As said I'm fully agreed with you about what pain levels are. But you're still missing my point that I still think that pain tolerance means something different... whether mental pain tolerance or physical.

A "survey" about mental pain tolerance could ask all members something like if they are "troubled" more if their pain level is a 6 than if their pain level is 2. Or if they are "scared" that pain will increase from doing something. Or that they feel the need to "complain" about it. Or physically moan. And actually, longer pain questionnaires at the docs and in an ACT course do ask exactly this, to find out how much someone is mentally suffering from their pain suffering, i.e. if they may have an anxiety or depression issue, or anger or feeling cheated.
There is one aspect to pain tolerance where people who are used to pain get used to it, increasing pain tolerance (I'd suggest mentally), but another side where the pain pathways over-react, decreasing pain tolerance (I'd say physically). I've had pain all my life, so have become used to it and to not complain, but in a neuralgia I once had, my face pain could be stopped if I took a small aspirin in the mornings beforehand, if I didn't, it increased and big pain killers couldn't touch it at all.

A survey about physical pain tolerance could (and does) test how long people can keep their hands in ice water. Experiments with this show that gender, company, ethnicity, hormones, inflammation and stress and chronic mood disorders as well as depression make a lot of difference, whilst age doesn't. The least pain tolerance is found in studies in people with depression and that combination can lead to thoughts about ending life.
People get a higher pain threshold with age, the point at which pain can be felt, but there is no evidence that pain tolerance changes. Threshold is influenced by genes, age (as said) and like tolerance also gender, both lower in "females". Threshold doesn't vary as much as tolerance between people.

(To make sure of common definitions etc. I'm using websites. However I don't think that even pain experts fully see all the distinctions as well as someone who self-analyzes a lot, see the tender points test now being considered out-of-date, but still used, because docs don't understand pain well. I believe it shows a whole mixture of: pain levels, mental pain tolerance, physical pain tolerance, pain threshold and more.)

 

[johnsalmon]

I will agree with you Jaycs that doctors in general do not understand pain even specialist can have a problem with it - I attended a pain clinic at our district hospital - basically I was told that I had pain becasue I was guilty of having pain and was sold a book on Zen - this may work for say a motorcycle rider that crashes by his own fault and is thus guilty that he caused his pain. needless to say the pain clinic closed down. My new doctor who is a young lady and not affaid to admit that she needs to do some research before the next visit - however she talks about my quality of life and treats me based on my response she can see when I walk down to the room and how I sit down etc that I am in pain - this young lady has turned my life about with fibromyalgia and is about to start on the Hastimoto's I also have essential tremour and am on the max dosage for that so I manage it as best I can (use dragon naturally speaking to write these posts and use a web camera head movement software to move the cursor)

"There is one aspect to pain tolerance where people who are used to pain get used to it"
I do not think that any one gets used to chronic pain they just get depressed and close down

 

[JayCS]

I will agree with you Jaycs that doctors in general do not understand pain even specialist can have a problem with it - I attended a pain clinic at our district hospital - basically I was told that I had pain becasue I was guilty of having pain and was sold a book on Zen - this may work for say a motorcycle rider that crashes by his own fault and is thus guilty that he caused his pain. needless to say the pain clinic closed down.

Yes, it's so dangerous for our health if docs with their seeming expertise claim we are somehow "wrong". While it is difficult to convey that it will help us cope/tolerate if we change our attitude to our pain, but that will only to a small extent actually reduce the pain, but docs often don't take care how they express it.
Another similar and more fibro-relevant example is people (often docs) who claim fibro is only caused by stress or trauma, sometimes implying that we are fault for self-made stress or getting into trauma situations, and my pet peeve is people (even sufferers) claiming it's because we have a so-called "A-type personality". Even worse is when people then claim / conclude that we only have to work on our stress, trauma, personality and then we'll no longer have pain.
Working on stress and mental injuries improves my quality of life, but it wasn't that that reduced my pain.

also have essential tremour and am on the max dosage for that so I manage it as best I can (use dragon naturally speaking to write these posts and use a web camera head movement software to move the cursor)

Wow, my respect!

"There is one aspect to pain tolerance where people who are used to pain get used to it"
I do not think that any one gets used to chronic pain they just get depressed and close down

Hmm, so how would you explain I have got used to my pain, without getting a depression and without closing down, then?
My wife would say that I often don't take note I'm in pain etc. Because it doesn't matter to me, apart from then knowing that I ought to go slow or rest more, to prevent it and fatigue from building up. So to be able to she often has to tell me that I'm in severe pain. Table tennis is the main activity where I've recently started to take note when pain starts, and what type, because that allows me to calculate better how long I can manage without backlash - rational, unemotional, high tolerance even in high pain.
I used to believe that my stiffness after being in a posture for 5-10' is not in any way painful, only last year did I realize it is.

 

[johnsalmon]

"Hmm, so how would you explain I have got used to my pain, without getting a depression and without closing down, then?" we are all; different.
"Table tennis is the main activity "
there is no way I could play table tennis - if my partner simply pats me on the arm then that creates pain

"she often has to tell me that I'm in severe pain"
My partner seems to know when I am in pain but then thats probably due tgo the length of time we have been together I know what her medical problems are and she is learning about my medical problems. You know I have hjad servre spinal problems since my young days and several complex ops so I still have periods of spinal pain I have never got used to it I just live with it as I sasy to my partner I don't mind getting old I just hate all the things that happen in old age. My catch phrase is when people ask me how I am - is "I'll survive"

But I really did not want fibromyalgia at my age!!

 

[cookiebaker]

But I really did not want fibromyalgia at my age!!

I dont think any of us wanted to get fibro, at any age... but yeah, i get it.. with so many other parts giving out on us, this is kind of like being kicked while down.
But, we do our best to get through it, day by day.

 

[hope23]

Bit late to the convo but man the description of saying people with fibro have a low pain tolerance/threshold really pisses me off, the shit and pain we deal with daily and still power through and live, are you friggin kidding me!!!

My one and only experience with a rheumatologist was a cursory examination being told 'yip youve got pain in many places' and being discharged from the service. I think 'thanks genius i couldve bloody told you that, in fact I DID' sums that one up. Tolerance is a frustrating and subjective term and personally i feel your pain Tolerance(from living with this) is f###ing impressive, we just have more and stronger pain signals than your average Joe, to put it in the context of 'you have a low ability of coping or tolerating pain' almost sounds like your weak and cant deal with pain. To which my response is 'swap and then tell me i have a low pain threshold or tolerance'

 

[Overcomer]

This conversation is so interesting I agree with so many points being made and it’s actually helped me to understand how to explain my pain and how I cope with it. I can now differentiate between how I have pain tolerance v pain sensitivity. I am mentally strong and cope with a lot. Yet my pain levels are high and I’m super sensitive I can’t even stand certain clothes or people touching me in certain ways. I have also experienced how patronising and condescending medical professionals can be in the way they speak. I love how you describe it @hope23 I would say you are spot on.

 

[JayCS]

"Hmm, so how would you explain I have got used to my pain, ... then?" we are all; different.

Ah, then we're agreed, that's what I was thinking.

there is no way I could play table tennis - if my partner simply pats me on the arm then that creates pain

I can imagine, had both. But I don't know if the grass is greener over here, if that's what you're thinking....
You may be able to do quite a few things physically that I can't....
Table tennis is one of the few things I can still do, cos I've been doing it most days for 15+ years, I don't have to move around much, and no longer pick up the ball, use energy (or my wrong hand).
But I like to count my blessings and make my grass as green as can be.... - so maybe that makes it greener?

You know I have had severe spinal problems since my young days and several complex ops so I still have periods of spinal pain I have never got used to it I just live with it

Spinal pain since young me too, but under control with daily exercising without fail.
I have certain intensely yucky sensations in my lower spine which would be hard to get used to if I could do nothing about it. But since I've realized I can reduce it by cold showering it doesn't disturb sleep etc. too much. And if that didn't/doesn't help I just do nice things to distract. If all else fails causing myself a short pain somewhere else helps a little bit. But if I couldn't do anything about it, and it got more frequent and worse, it would be dreadful and make me miserable.... So I can relate.
I'm not quite sure what the difference is between "getting used to it" and "living with it", I'll be thinking about that....

as I say to my partner I don't mind getting old I just hate all the things that happen in old age.

Or young age for that matter... I was lucky that I could get the problems of my young age down more and more till 50, but a few years later these fibro cropped up all the same, and MCAS added. Neither feels like old age, so I may often move like an old person, but not at other times, so I know it's not that directly.
But of course with old age quite a few things add up and worsen.... I hope I can keep those things at bay by keeping moving as much as I can.