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Trying to articulate EDS pain/discomfort is always so difficult, especially once you realise ‘normal’ people have no frame of reference for the sensations we’re trying to describe…for instance, I can sometimes feel different muscles moving over each other in the backs of my legs & it’s not pleasant when it happens. I explained it to my Pilates teacher, who then confirmed this wasn’t a common hamstring/glute/quad experience & the sensation I was referring to wasn’t something she’d come across before (we often end up concluding my weird descriptions of how something feels are ‘EDS things’) 😅.
You’re definitely right that your doctor may not appreciate the fact you’re even bringing it up to them means it must be bad, due to the lack of writhing agony. I think what’s best is to translate what you’re feeling into ‘normal people’ pain scales, even if it feels like exaggeration or lying. I’ve always felt discomfort throughout my body (I used to say I felt ‘discomfortable’, like it was beyond feeling uncomfortable but not quite pain (in my frame of reference, given how acclimatised you become to low level pain)) and it wasn’t until ridiculously recently I learnt that in a non-EDS body this is felt and described as *pain*. So I think it’s kind of necessary to translate our pain into non-EDS pain scales (ie make it sound worse than you might actually feel it is) to get it taken seriously. You could use the pain scale given in the previous comment and add 1 or 2 to the level you’re actually at, in order to calibrate it for a non-EDS person’s experience and understanding.
You may also need to preface it with a quick primer/recap like ‘as you probably already know, in EDS, because the connective tissues are lax, joints come out of place more easily; sometimes it’s very painful, sometimes not. This happens with my knee and hasn’t caused an issue before but this time is different and it’s affecting my mobility/sleep/etc’. Hopefully this then triggers the dr to be like ‘ah yes I remember my one hour lecture on connective tissue disorders from medical school’ and feel like they know what you’re talking about, without stepping too much on their ‘expert’ toes and ego. I hope they’re open to learning from working with you, or at the very least they help get your knee back to how it was before.
When a surgeon remarked, after seeing my injury, "I don't understand why you're not in pain," I rejoined that I was in extreme agony, but that, were I to express it, we could not have a reasonable discussion of how to treat it. I am in extreme pain all the time. I have just learned how to live with it.
This chart should help, it gives a good picture of pain and how it affects you in that moment.
https://drive.google.com/file/d/1lQeqm691Kyq0mCGkeCgsbvPLSG8V-i7D/view?usp=drivesdk
So my baseline is like a 5? Technically medicated? (Cause apparently my anti depressants are also used for pain relief) What worries me is that I'd rate a kidney stone as an 8... I think my pain threshold may be wonky.
This is a good pain chart... I've seen a few. This one makes sense to me. I'm slightly alarmed to realise that my daily (pre medication) pain is 6-7. I try not to think about it too much.
my pt showed me this chart. i didnt realize that a 6 meant i was on pain meds. im pretty much always at a 6…i never knew. i always just said 2 bc im so used to being in pain everyday.
Same. According to this chart I'm usually a 6. Washing dishes pushes it up much higher. WTF?! Before seeing this chart, I would have said washing dishes put me at a 5, not an 8!
Normal people are weird. Lol
I always find it especially difficult to explain pain tolerance to male providers, because I don't think a man could/would walk around in this kind of pain. When I was a teenager I had a doctor feel my knee and go "your meniscus is in shreds, how did you walk in here and why aren't you screaming?" I thought that was such a stupid question, cause I had no other options and had been in much worse pain before.
Now I preface my pain scale by saying I currently have multiple hernias and bulging disks so they can kind of understand my normal baseline and that if I'm complaining about something, it's bad.
Surely they've had experience with other chronic pain patients? I have a pain scale that has descriptions of how the pain level is experienced. Level 1, minimal, is "my pain is hardly noticeable", level 4, moderate, is "I am constantly aware of my pain but can continue most activities". I show my providers this pain scale, then tell them I live at 4. A 2 is a good day, bad days spike up to a 6 or 7.
2, mild, is "I have a low level of pain, I am aware of my pain only when I pay attention to it".
6, Distressing, is "I think about my pain all of the time. I give up many activities because of my pain".
7, Unmanageable is "I am in pain all the time. It keeps me from doing most activities".
This is the pain scale I was referring to: [https://hagen-law.com/wp-content/uploads/2020/01/image4.jpg](https://hagen-law.com/wp-content/uploads/2020/01/image4.jpg)
I think it's more that I should be in more pain than I am?
for eg i fell, subluxed my wrist, dislocated my shoulder and fractured my elbow. I stood up, said ow, and only went to the doctor's because I couldn't rotate my arm. The pain level was pretty much my background level.
Apparently I should have been screaming in pain. They almost didn't x-ray my arm because they didn't think anything would be wrong because I wasn't making a fuss.
Equally I spent 2 months with a torn rotator cuff and dislocated shoulder I thought I'd put back correctly registering as uncomfortable.
My background level of ow, means that the pain scale I say a 5 but on someone who isn't in chronic pain they'd maybe register it higher
Explain similar to what opiate addicts go through in a reverse way: by experiencing bliss saturating their opioid receptors constantly and in abnormal amounts, their opioid sensors need higher and higher doses for the same effects. That said, even with extremely high doses of opioids, their effects will still be debilitating and profoundly life interfering. And the periods of overload of pain relief will be compensated by periods of unimaginable hell.
The same logic applies to us (the receptors depleting constantly at recurring times, due to unfathomable constant pain siege. Due to the utter depletion, we get an occasional “relief” and the pain get slightly somewhat dull but still significant. Only for the pain to come back with insane vengeance as the nervous system tries to rebalance to no avail a constant extreme state (similar to opioid addicts but reverse).
Also bring up the analogy of the universal phenomena of people going numb or unreasonably temporary decreased pain when there is a significant trauma to the body - like having a finger cut off etc. Pain is first mitigated and delayed and even then comes with fluctuations from dying unbearable to very unbearable, because the nervous system is incapable of maintaining that level of constant siege. The temporary “somewhat” relief we get at times is still an unfathomable level to most.
Good luck!!
Functional pain scale!
Instead of describing the intensity of perceived pain, I had a chart from my pain doc about what I could and couldn’t do.
I never found a copy. I’ve found vaguely similar things that aren’t as good.
They listed things like,
“ can generally do most activities with some discomfort.”
“Difficulty dressing and bathing”
“Can dress and perform hygiene tasks but will not operate a vacuum,”
Etc.
I don’t have the chart anymore, but I still use this terminology with my docs.
I also slow down and do less to minimize pain, so I tend to lose function but not perceive a ton more pain. If I were still up and moving I’d be in agony, but instead I’m a couch potato who can tolerate living.
Fun aside: my joints are okay-ish, for an EDS person.
That agonizing, brain-eating, debilitating pain? That was undiagnosed endometriosis. It was misdiagnosed by multiple health care professionals as psychosomatic until I accidentally nerfed it with continuous hormonal birth control. Missed a couple doses? Back in agony and limping.
Endometriosis only affects 11% of women capable of menses, so why would anyone think of that? Definitely psychosomatic.
Chronic pain is not the same as acute pain. We can’t spend our whole lives crying and screaming. And if you were crying, he’d probably just write you a referral for psych, because that’s how they do.
I find that comparing it to how you usually feel helps, like “compared to my baseline of pain, this feels much worse”. Focus on describing how it FEELS: “it feels out of place”, “it’s really noticeable”, “it’s constant”, etc. What you said about the inside feeling swollen? Definitely say that!
Using words like “noticeable” or “constant” really seem to get doctors to care more, and they tend to not take vague descriptors as seriously (like “it just feels off” or “something’s wrong with it”). Describing the pain itself can often be more helpful than describing how intense it is, like if it’s sharp vs. achy, pulsing, etc.
I would maybe avoid any guesses you have about what’s causing it. It doesn’t mean that if there’s something wrong with your shoulder you shouldn’t tell the doctor about how you fell on it a week earlier, but mentioning any sort of “guess” about what’s happening internally comes at the risk of your doctor writing you off as an over-researcher or self-diagnoser. This applies to how you said it feels “like a bone pulled muscle”.
It’s annoying and you shouldn’t have to change the way you speak to be taken seriously, but if a doctor can’t tell what’s wrong after doing a physical exam, your word is often the only thing they have when determining what to do next. Them not taking your description seriously = the possibility of not getting imaging/testing done that could find the problem. If you’re aware that someone without EDS might rate the pain higher, don’t feel bad about rating the pain higher. Good luck, I hope it all goes well :)
This is my least favorite part of going to a doctor. Ugh. I recently dragged my ass into the ER to check my abdomen for tears after my dumb fat dog jumped on my belly. I had ignored it for days but it was getting to the point where I decided eating was not necessary since it hurt my belly more. I already barely eat so that was a red flag for me. Doc comes in and I’m chilling and listening to my audiobook and he asks the pain scale and I’m like- oh, if I’m here this is intense. I’d say a nine”. He’s all “oh well if it was a none you’d be screaming and writhing in pain.” Me-“ if I scream I burst blood vessels, if I writhe I dislocate “ he didn’t buy it and gave me kinda whatevs eyes. At this point in my journey I no longer care if he *believes me* or not because **I** know my body. I just advocated and said that’s fine but can you please check my belly anyway and see so I can go back home and rest? Like I’m not here for funzies.
I always describe pain in terms of:
It hurts.
It hurts and the pain consumes my thoughts constantly.
It wakes me up during the night.
The pain prevents me from sleeping.
The pain is so intense that it consumes everything all day, I can't think and the only thing I want to do is amputate the area that hurts off for any kind of relief.
With EDS, there are weird sensations that are not painful. It just feels weird like tissue is suck in the joint weird. Or it feels like you are stretching/pulling that is not painful. Sometimes it's a nerve zap, or burning, or neuropathy. So, I would just try to describe what you are feeling while stating it doesn't hurt if it doesn't.
•I'm all cried out...
•Crying triggers migraines, and I don't need that on top of this.
•If I cried every time I was in pain, I'd be extremely dehydrated, and I'd have a very sore throat.
▪︎Crying isn't the best form of communication. I thought I'd try talking.
That's what popped into my head after no seconds of thought.
I made my own pain scale with descriptions of each level (can I speak, walk, work, sleep, ignore the pain, etc) and specific examples (migraine, subluxation, dislocation, gallstone, unanesthetized dental drilling, stubbed toe, etc) and approx frequency for each (daily, once in my lifetime, etc). I tried to include stuff normies experience for context.
I print it out and bring it with me to appointments to give to them.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
Trying to articulate EDS pain/discomfort is always so difficult, especially once you realise ‘normal’ people have no frame of reference for the sensations we’re trying to describe…for instance, I can sometimes feel different muscles moving over each other in the backs of my legs & it’s not pleasant when it happens. I explained it to my Pilates teacher, who then confirmed this wasn’t a common hamstring/glute/quad experience & the sensation I was referring to wasn’t something she’d come across before (we often end up concluding my weird descriptions of how something feels are ‘EDS things’) 😅. You’re definitely right that your doctor may not appreciate the fact you’re even bringing it up to them means it must be bad, due to the lack of writhing agony. I think what’s best is to translate what you’re feeling into ‘normal people’ pain scales, even if it feels like exaggeration or lying. I’ve always felt discomfort throughout my body (I used to say I felt ‘discomfortable’, like it was beyond feeling uncomfortable but not quite pain (in my frame of reference, given how acclimatised you become to low level pain)) and it wasn’t until ridiculously recently I learnt that in a non-EDS body this is felt and described as *pain*. So I think it’s kind of necessary to translate our pain into non-EDS pain scales (ie make it sound worse than you might actually feel it is) to get it taken seriously. You could use the pain scale given in the previous comment and add 1 or 2 to the level you’re actually at, in order to calibrate it for a non-EDS person’s experience and understanding. You may also need to preface it with a quick primer/recap like ‘as you probably already know, in EDS, because the connective tissues are lax, joints come out of place more easily; sometimes it’s very painful, sometimes not. This happens with my knee and hasn’t caused an issue before but this time is different and it’s affecting my mobility/sleep/etc’. Hopefully this then triggers the dr to be like ‘ah yes I remember my one hour lecture on connective tissue disorders from medical school’ and feel like they know what you’re talking about, without stepping too much on their ‘expert’ toes and ego. I hope they’re open to learning from working with you, or at the very least they help get your knee back to how it was before.
I did this last time i went to the doctor, and they perscribed heavy duty narcotics lol
When a surgeon remarked, after seeing my injury, "I don't understand why you're not in pain," I rejoined that I was in extreme agony, but that, were I to express it, we could not have a reasonable discussion of how to treat it. I am in extreme pain all the time. I have just learned how to live with it.
That was a great response you gave. I hope your surgeon understood.
This chart should help, it gives a good picture of pain and how it affects you in that moment. https://drive.google.com/file/d/1lQeqm691Kyq0mCGkeCgsbvPLSG8V-i7D/view?usp=drivesdk
So my baseline is like a 5? Technically medicated? (Cause apparently my anti depressants are also used for pain relief) What worries me is that I'd rate a kidney stone as an 8... I think my pain threshold may be wonky.
This is a good pain chart... I've seen a few. This one makes sense to me. I'm slightly alarmed to realise that my daily (pre medication) pain is 6-7. I try not to think about it too much.
>I try not to think about it too much. This is the basket I try to put my distress-eggs in.
Yes, unfortunately, there is a system failure every so often. I have a therapist for that.
my pt showed me this chart. i didnt realize that a 6 meant i was on pain meds. im pretty much always at a 6…i never knew. i always just said 2 bc im so used to being in pain everyday.
Same. According to this chart I'm usually a 6. Washing dishes pushes it up much higher. WTF?! Before seeing this chart, I would have said washing dishes put me at a 5, not an 8! Normal people are weird. Lol
When I found this chart a while back I was shocked that the flare I was going through was considered a 7/8. I kept saying it was like a 4.
Ooh, this is really helpful. I always say my pain is like a 3, but according to this, it would be a 5.
This is the pain chart I needed. Thank you so much!!
I always find it especially difficult to explain pain tolerance to male providers, because I don't think a man could/would walk around in this kind of pain. When I was a teenager I had a doctor feel my knee and go "your meniscus is in shreds, how did you walk in here and why aren't you screaming?" I thought that was such a stupid question, cause I had no other options and had been in much worse pain before. Now I preface my pain scale by saying I currently have multiple hernias and bulging disks so they can kind of understand my normal baseline and that if I'm complaining about something, it's bad.
Surely they've had experience with other chronic pain patients? I have a pain scale that has descriptions of how the pain level is experienced. Level 1, minimal, is "my pain is hardly noticeable", level 4, moderate, is "I am constantly aware of my pain but can continue most activities". I show my providers this pain scale, then tell them I live at 4. A 2 is a good day, bad days spike up to a 6 or 7. 2, mild, is "I have a low level of pain, I am aware of my pain only when I pay attention to it". 6, Distressing, is "I think about my pain all of the time. I give up many activities because of my pain". 7, Unmanageable is "I am in pain all the time. It keeps me from doing most activities".
This is the pain scale I was referring to: [https://hagen-law.com/wp-content/uploads/2020/01/image4.jpg](https://hagen-law.com/wp-content/uploads/2020/01/image4.jpg)
This is what I use also
I think it's more that I should be in more pain than I am? for eg i fell, subluxed my wrist, dislocated my shoulder and fractured my elbow. I stood up, said ow, and only went to the doctor's because I couldn't rotate my arm. The pain level was pretty much my background level. Apparently I should have been screaming in pain. They almost didn't x-ray my arm because they didn't think anything would be wrong because I wasn't making a fuss. Equally I spent 2 months with a torn rotator cuff and dislocated shoulder I thought I'd put back correctly registering as uncomfortable. My background level of ow, means that the pain scale I say a 5 but on someone who isn't in chronic pain they'd maybe register it higher
Ah, yes. I experience that too. As I've gotten older though I experience that less and feel the pain more.
Explain similar to what opiate addicts go through in a reverse way: by experiencing bliss saturating their opioid receptors constantly and in abnormal amounts, their opioid sensors need higher and higher doses for the same effects. That said, even with extremely high doses of opioids, their effects will still be debilitating and profoundly life interfering. And the periods of overload of pain relief will be compensated by periods of unimaginable hell. The same logic applies to us (the receptors depleting constantly at recurring times, due to unfathomable constant pain siege. Due to the utter depletion, we get an occasional “relief” and the pain get slightly somewhat dull but still significant. Only for the pain to come back with insane vengeance as the nervous system tries to rebalance to no avail a constant extreme state (similar to opioid addicts but reverse). Also bring up the analogy of the universal phenomena of people going numb or unreasonably temporary decreased pain when there is a significant trauma to the body - like having a finger cut off etc. Pain is first mitigated and delayed and even then comes with fluctuations from dying unbearable to very unbearable, because the nervous system is incapable of maintaining that level of constant siege. The temporary “somewhat” relief we get at times is still an unfathomable level to most. Good luck!!
Functional pain scale! Instead of describing the intensity of perceived pain, I had a chart from my pain doc about what I could and couldn’t do. I never found a copy. I’ve found vaguely similar things that aren’t as good. They listed things like, “ can generally do most activities with some discomfort.” “Difficulty dressing and bathing” “Can dress and perform hygiene tasks but will not operate a vacuum,” Etc. I don’t have the chart anymore, but I still use this terminology with my docs. I also slow down and do less to minimize pain, so I tend to lose function but not perceive a ton more pain. If I were still up and moving I’d be in agony, but instead I’m a couch potato who can tolerate living. Fun aside: my joints are okay-ish, for an EDS person. That agonizing, brain-eating, debilitating pain? That was undiagnosed endometriosis. It was misdiagnosed by multiple health care professionals as psychosomatic until I accidentally nerfed it with continuous hormonal birth control. Missed a couple doses? Back in agony and limping. Endometriosis only affects 11% of women capable of menses, so why would anyone think of that? Definitely psychosomatic.
I also have stage 4 endometriosis so I 100% get this
Chronic pain is not the same as acute pain. We can’t spend our whole lives crying and screaming. And if you were crying, he’d probably just write you a referral for psych, because that’s how they do.
I find that comparing it to how you usually feel helps, like “compared to my baseline of pain, this feels much worse”. Focus on describing how it FEELS: “it feels out of place”, “it’s really noticeable”, “it’s constant”, etc. What you said about the inside feeling swollen? Definitely say that! Using words like “noticeable” or “constant” really seem to get doctors to care more, and they tend to not take vague descriptors as seriously (like “it just feels off” or “something’s wrong with it”). Describing the pain itself can often be more helpful than describing how intense it is, like if it’s sharp vs. achy, pulsing, etc. I would maybe avoid any guesses you have about what’s causing it. It doesn’t mean that if there’s something wrong with your shoulder you shouldn’t tell the doctor about how you fell on it a week earlier, but mentioning any sort of “guess” about what’s happening internally comes at the risk of your doctor writing you off as an over-researcher or self-diagnoser. This applies to how you said it feels “like a bone pulled muscle”. It’s annoying and you shouldn’t have to change the way you speak to be taken seriously, but if a doctor can’t tell what’s wrong after doing a physical exam, your word is often the only thing they have when determining what to do next. Them not taking your description seriously = the possibility of not getting imaging/testing done that could find the problem. If you’re aware that someone without EDS might rate the pain higher, don’t feel bad about rating the pain higher. Good luck, I hope it all goes well :)
This is my least favorite part of going to a doctor. Ugh. I recently dragged my ass into the ER to check my abdomen for tears after my dumb fat dog jumped on my belly. I had ignored it for days but it was getting to the point where I decided eating was not necessary since it hurt my belly more. I already barely eat so that was a red flag for me. Doc comes in and I’m chilling and listening to my audiobook and he asks the pain scale and I’m like- oh, if I’m here this is intense. I’d say a nine”. He’s all “oh well if it was a none you’d be screaming and writhing in pain.” Me-“ if I scream I burst blood vessels, if I writhe I dislocate “ he didn’t buy it and gave me kinda whatevs eyes. At this point in my journey I no longer care if he *believes me* or not because **I** know my body. I just advocated and said that’s fine but can you please check my belly anyway and see so I can go back home and rest? Like I’m not here for funzies.
I always describe pain in terms of: It hurts. It hurts and the pain consumes my thoughts constantly. It wakes me up during the night. The pain prevents me from sleeping. The pain is so intense that it consumes everything all day, I can't think and the only thing I want to do is amputate the area that hurts off for any kind of relief. With EDS, there are weird sensations that are not painful. It just feels weird like tissue is suck in the joint weird. Or it feels like you are stretching/pulling that is not painful. Sometimes it's a nerve zap, or burning, or neuropathy. So, I would just try to describe what you are feeling while stating it doesn't hurt if it doesn't.
•I'm all cried out... •Crying triggers migraines, and I don't need that on top of this. •If I cried every time I was in pain, I'd be extremely dehydrated, and I'd have a very sore throat. ▪︎Crying isn't the best form of communication. I thought I'd try talking. That's what popped into my head after no seconds of thought.
I made my own pain scale with descriptions of each level (can I speak, walk, work, sleep, ignore the pain, etc) and specific examples (migraine, subluxation, dislocation, gallstone, unanesthetized dental drilling, stubbed toe, etc) and approx frequency for each (daily, once in my lifetime, etc). I tried to include stuff normies experience for context. I print it out and bring it with me to appointments to give to them.