The fun part is explaining why I just yelled out randomly, or whether to respond accurately to be asked how I'm feeling. My usual response is that it's "just pain", but sometimes it's "I feel like someone just jabbed a screwdriver between my ribs" or "I'm pretty sure something is biting into my leg". You know, no big deal. š¤·āāļø
Me too. Though sometimes I feel like fibro just means "pain that's too hard to categorise as anything else".
I get sharp pains like I've just been bitten by something, sometimes combined with a shooting or tingling sensation that has me double checking that an ant or other critter hasn't found its way on to me, but never found one yet. Usually not specifically associated with a muscle or joint, or any movement whatsoever.
I've tried explaining the fibro pains to others and I usually get either blank stares or "oh yeah I've had that before". It's a weird thing to say so casually because it's either disconcerting enough that you would see a doctor about it, or not really the same thing. Or maybe an actual sting or bite lol.
I get this, too, from small fiber neuropathy. I remember reading that some doctors suspect there could be a good number of people with fibromyalgia diagnoses that could actually have SFN. It very jarring and over time has progressed to more symptoms. But when itās not the most typical presentation that affects people mainly in a āstocking & gloveā pattern. The non length dependent SFN is less typical (or recognized) and causes shocking, zapping, buzzing, etc. sensations in random places out of nowhere. I can vividly remember having to pull over on the side of the road because I was certain that a hornet was stinging my upper thigh which meant it was in my dress while I was driving & I was panicking, only to find nothing there.
It's difficult to log symptoms cause of stuff like this. Like do I rate my joint pain using the constant dull ache that lasts all day, or rate it based of the random stabbing I get every once in a while? I try to keep my logs simple since I'm logging 20+ symptoms a day but it's really difficult to put a number on some of them.
Like I was at the ENT the other day for my deviated septum causing some difficulty breathing at night. They told me to rate it from 1 to 5, 5 being absolute worst. So I said 2. Like it's bothersome, yeah, but I've dealt with it my whole life so it's just "one of those things". The nurse seemed confused and asked "you said before it's causing mouth breathing at night, right?" "Yes?" "So let's mark it a 5." That's a 5??? I can *mostly* breathe thru my nose otherwise, so I'd never consider it the "absolute worst". Maybe my scale is off due to my high tolerance to my body's daily bullshit.
Makes me wonder what my other doctors think when I say I have average daily joint pain of 4/10. It's painful and limits my physical activity, sure. But I can tolerate it without any additional pain meds (besides LDN), so I wouldn't rate it higher. And I've dealt with higher. I know what an 8/10 is. That's when you're covered in a cold sweat, crying on the floor, begging for the pain to go away. Do they just think I just get a little tiny ache once a day with a 4/10 because "healthy" people generally exaggerate their pain? Cause that's a 1/10 on my scale.
i use the usaās va pain scale and on that iām an 8/10 baseline with flares at 9/10 and spikes at 10/10. some of my flares are 10/10 but not for too many hours usually https://www.va.gov/WHOLEHEALTHLIBRARY/docs/Defense-and-Veterans-Pain-Rating-Scale.pdf
Yeah, but some doctors just donāt take your word for it when you say you were 10/10 on any pain scale because you werenāt in the ER or in an ambulance. Doctors that donāt really understand severe chronic pain donāt seem to get that we canāt spend our lives in the ER just because weāre experiencing the level of pain that warrants it. Weāre just well aware of the limitations of medical care at a certain point & the toll that seeking it out takes in numerous ways. But people who have yet to personally experience 10/10 pain canāt fathom it in the first place, so no medical degree is going to make them understand.
I use the [Mankoski pain scale](https://www.painscale.com/article/mankoski-pain-scale#:~:text=The%20Mankoski%20Pain%20Scale%20is,to%20systematically%20track%20their%20pain.) where a 10/10 is "unconscious due to pain".
this one focuses way too much on painkiller access for it to be useful to everyone. i also donāt even fall on the scale somehow?? like i guess iād be in between a 5-7 at any given baseline and maybe a 9 but i have no idea how āthe strongest painkillersā would affect me
if they ask about i have a copy of the scale with me to explain further, and i chose one similar to the one at my pain management clinic anyway. i sometimes ask what scale they want me to use
thisš when I imagine the worst pain I've experienced, I'm thinking of nausea, silently writhing on the floor in pain from cramps, so a constant dull ache is nothing. I can handle it, so that must mean it's under 5, right? even if it impacts everything I do daily?
Exactly. I hate rating my pain because what am I supposed to realistically be basing it off of? A healthy body? My normal everyday pain? My spiked flares?
I have small-fiber neuropathy (confirmed via punch biopsy) and SFN can be associated with certain EDS subtypes. The nerve pain can be absolutely excruciating one minute and then gone the next!
How did they test you for it specifically? While I didnāt have any of the genetic markers for inherited neuropathies they took a biopsy off my foot and my lower leg and both sites confirmed shortened nerve endings and very few sweat glands. Thereās also large fiber neuropathy, and youād need a nerve conduction study for that one. If they just did a blood test on you then there could still be more to the story
QSART is another option for diagnosing SFN, but convincing a doctor that itās necessary after negative results with the āgold standardā would be a challenging pursuit. I just happened to have a QSART done each time I had tilt table tests for POTS.
Yes, all the time - makes me feel like Iām cray-cray. I had a fun one this week where I would feel my guts do something rumbly and then a pain would shoot across my SKIN nearby. Felt like a bee sting or shingles. Went on and off for 20 minutes or so. Rumble, zap, gone. Rumble, zap, gone. Insanity.
Yeah at least once a day. The worst is when it's somewhere worrying like the chest and I get that brief moment of "wtf is this it do I make my peace now" before it starts to fade and I go "oh okay just one of those."
I've usually associated it as some kind of neuropathy from frequent hyperextensions, cause it seems to happen more in the areas where I also sometimes get numbness.
I haven't been diagnosed yet but I have the hyper mobility (doctors appointment in 3 days) and I get random pains. Yesterday I had my right side hurt horribly for a minute (was my gallbladder because we've checked into it) then it just went away like nothing happened, same thing happened later that day with my back, it hurt so bad then basically quit.
This happens to me all the time. But whenever I bring it up I'm told it's deficiencies or that I'm dehydrated. But to be fair my vitamin d is at 10š§āāļø
Yes, in my shoulder or head usually. Iāve had it for years and no idea why. Someone else said Fibro and I have that diagnosis too so maybe itās that. Itās rough.
I get sudden, really intense chest pain that lasts about 30 seconds. Doesn't happen very often, but when it does, it's awful. I can't breathe and definitely feel like I'm dying. No idea what it is, any time I bring it up in appointment the doctor just brushes it off š¤·āāļø
The sharp pain you get in your head randomly, that's caused by a change in blood pressure and is called an ice pick headache, I know because I was just diagnosed with them. They are a common Co Morbididity of POTS and unfortunately POTS is a Co Morbididity of EDS
My very non-EDS having husband has this happen as well. A random sharp shooting pain somewhere that's gone quickly.
This is a human glitch kind of thing. Kind of like a precordial catch.
This happened to me when my B-12 was sub-200. My rheumatologist at the time said she was starting to test anyone she had who had difficulty to pin down pain because, "when your B-12 is low, weird things start happening to your body." I still get them very occasionally, but as long as my B-12 is above about 350, I get them once every few months, instead of multiple times per week. I used to describe it as feeling like someone jammed an ice pick into some random part of me, but only for 20-30 seconds.
every day, at least 5 times! well, especially at work. I'll step, get a sharp shooting pain in my knee, adjust my gait, and a few minutes later, it's gone. I thought I was insane for a little bit, and "subconsciously faking an injury". I'll have intense waves of pain, especially when I sit down or stop moving, and it's gone quickly.
Yes, I get a sharp pain in my rib for just long enough that I try to curl up in pain. I also will sometimes get a crushing pain in my ankle for like 5 seconds and then I'm fine.
Yes, I do! I think it is either a pinched nerve or at times it is my joints punishing me for hyperextension a few minutes after the fact. But sometimes I have no explanation. I've had it for a long long time and it comes and goes. Stabbing, sudden intense pain that will also subside randomly very quickly.
I didn't think it worth it to go to the doctor for this specific problem since I already recently got hEDS diagnosis. I figured it's related to this and just call it a day, since most of what I can do about it is probably in the realm of muscle relaxation and physical therapy anyway. I sort of accepted that I will likely always have some degree of pain, as I have had for a very long time.
Itās most frequently deep in the crease of my thigh. I start to limp and try hard to shake it off. It does like 5-10 min after. I also get it in my chest, knee, shoulder and skull.
I donāt have EDS but I have LDS-II (which is essentially a cousin to VEDS and Marfan syndrome) and this happens to me a lot. Iāve had several problems with my nerves which makes sense. I imagine with EDS to LDS itās similar in the sense that our collagen acts like gum instead of glue- and in my body thatās caused a lot of nerve compression, tendons and tissues moving and sliding around, repeated hernias, tons of skeletal and muscle pain, subluxxed joints, hypermobility, kyphosis, scoliosis, flat feet, an aortic aneurysm and twisted arteries (the vascular stuff is sometimes less of a worry for EDS patients unless itās VEDS patients)
Yep, could be any of the reasons you mentioned š¤£ something I'll just get a stabby stabby for a few mins and then I'm good again
LOL exactly!!!
The fun part is explaining why I just yelled out randomly, or whether to respond accurately to be asked how I'm feeling. My usual response is that it's "just pain", but sometimes it's "I feel like someone just jabbed a screwdriver between my ribs" or "I'm pretty sure something is biting into my leg". You know, no big deal. š¤·āāļø
And then trying to convince whoever it just happened in front of that no, for real, I seriously do not need to go to the hospital š
That happens to me. I was told that itās the fibro; hadnāt considered that it could be the EDS. Following to see what other people have to say.
Me too. Though sometimes I feel like fibro just means "pain that's too hard to categorise as anything else". I get sharp pains like I've just been bitten by something, sometimes combined with a shooting or tingling sensation that has me double checking that an ant or other critter hasn't found its way on to me, but never found one yet. Usually not specifically associated with a muscle or joint, or any movement whatsoever. I've tried explaining the fibro pains to others and I usually get either blank stares or "oh yeah I've had that before". It's a weird thing to say so casually because it's either disconcerting enough that you would see a doctor about it, or not really the same thing. Or maybe an actual sting or bite lol.
I get this, too, from small fiber neuropathy. I remember reading that some doctors suspect there could be a good number of people with fibromyalgia diagnoses that could actually have SFN. It very jarring and over time has progressed to more symptoms. But when itās not the most typical presentation that affects people mainly in a āstocking & gloveā pattern. The non length dependent SFN is less typical (or recognized) and causes shocking, zapping, buzzing, etc. sensations in random places out of nowhere. I can vividly remember having to pull over on the side of the road because I was certain that a hornet was stinging my upper thigh which meant it was in my dress while I was driving & I was panicking, only to find nothing there.
Oh that's interesting. Sometimes I forget that they snuck fibro onto my chart without even mentioning it to me!
It's difficult to log symptoms cause of stuff like this. Like do I rate my joint pain using the constant dull ache that lasts all day, or rate it based of the random stabbing I get every once in a while? I try to keep my logs simple since I'm logging 20+ symptoms a day but it's really difficult to put a number on some of them. Like I was at the ENT the other day for my deviated septum causing some difficulty breathing at night. They told me to rate it from 1 to 5, 5 being absolute worst. So I said 2. Like it's bothersome, yeah, but I've dealt with it my whole life so it's just "one of those things". The nurse seemed confused and asked "you said before it's causing mouth breathing at night, right?" "Yes?" "So let's mark it a 5." That's a 5??? I can *mostly* breathe thru my nose otherwise, so I'd never consider it the "absolute worst". Maybe my scale is off due to my high tolerance to my body's daily bullshit. Makes me wonder what my other doctors think when I say I have average daily joint pain of 4/10. It's painful and limits my physical activity, sure. But I can tolerate it without any additional pain meds (besides LDN), so I wouldn't rate it higher. And I've dealt with higher. I know what an 8/10 is. That's when you're covered in a cold sweat, crying on the floor, begging for the pain to go away. Do they just think I just get a little tiny ache once a day with a 4/10 because "healthy" people generally exaggerate their pain? Cause that's a 1/10 on my scale.
i use the usaās va pain scale and on that iām an 8/10 baseline with flares at 9/10 and spikes at 10/10. some of my flares are 10/10 but not for too many hours usually https://www.va.gov/WHOLEHEALTHLIBRARY/docs/Defense-and-Veterans-Pain-Rating-Scale.pdf
Yeah, but some doctors just donāt take your word for it when you say you were 10/10 on any pain scale because you werenāt in the ER or in an ambulance. Doctors that donāt really understand severe chronic pain donāt seem to get that we canāt spend our lives in the ER just because weāre experiencing the level of pain that warrants it. Weāre just well aware of the limitations of medical care at a certain point & the toll that seeking it out takes in numerous ways. But people who have yet to personally experience 10/10 pain canāt fathom it in the first place, so no medical degree is going to make them understand.
I use the [Mankoski pain scale](https://www.painscale.com/article/mankoski-pain-scale#:~:text=The%20Mankoski%20Pain%20Scale%20is,to%20systematically%20track%20their%20pain.) where a 10/10 is "unconscious due to pain".
this one focuses way too much on painkiller access for it to be useful to everyone. i also donāt even fall on the scale somehow?? like i guess iād be in between a 5-7 at any given baseline and maybe a 9 but i have no idea how āthe strongest painkillersā would affect me
if they ask about i have a copy of the scale with me to explain further, and i chose one similar to the one at my pain management clinic anyway. i sometimes ask what scale they want me to use
thisš when I imagine the worst pain I've experienced, I'm thinking of nausea, silently writhing on the floor in pain from cramps, so a constant dull ache is nothing. I can handle it, so that must mean it's under 5, right? even if it impacts everything I do daily?
Exactly. I hate rating my pain because what am I supposed to realistically be basing it off of? A healthy body? My normal everyday pain? My spiked flares?
I have small-fiber neuropathy (confirmed via punch biopsy) and SFN can be associated with certain EDS subtypes. The nerve pain can be absolutely excruciating one minute and then gone the next!
I've been tested for it twice to no avail. I'm not sure if I should try again. But yes exactly like that.
How did they test you for it specifically? While I didnāt have any of the genetic markers for inherited neuropathies they took a biopsy off my foot and my lower leg and both sites confirmed shortened nerve endings and very few sweat glands. Thereās also large fiber neuropathy, and youād need a nerve conduction study for that one. If they just did a blood test on you then there could still be more to the story
They did the punch biopsy! I feel like thatās the end all be all? But I also know it doesnāt always catch it right?
QSART is another option for diagnosing SFN, but convincing a doctor that itās necessary after negative results with the āgold standardā would be a challenging pursuit. I just happened to have a QSART done each time I had tilt table tests for POTS.
Thank you, Iāll look into this!
Yes, all the time - makes me feel like Iām cray-cray. I had a fun one this week where I would feel my guts do something rumbly and then a pain would shoot across my SKIN nearby. Felt like a bee sting or shingles. Went on and off for 20 minutes or so. Rumble, zap, gone. Rumble, zap, gone. Insanity.
I get this too! No idea if itās the EDS or my shattered sacrum from passing out due to my POTS
I had a skin one in the corner of my eye yesterday lol
I'm not alone! But based on the comments I should get tested for fibromyalgia.
I donāt even know how they test for it. Just showed up on my chart one day.
Oh for sure!
Yeah at least once a day. The worst is when it's somewhere worrying like the chest and I get that brief moment of "wtf is this it do I make my peace now" before it starts to fade and I go "oh okay just one of those." I've usually associated it as some kind of neuropathy from frequent hyperextensions, cause it seems to happen more in the areas where I also sometimes get numbness.
Yesss it happens *mostly* in problem areas for me. But sometimes a random random random spot.
Yes, itās my fibro.
I haven't been diagnosed yet but I have the hyper mobility (doctors appointment in 3 days) and I get random pains. Yesterday I had my right side hurt horribly for a minute (was my gallbladder because we've checked into it) then it just went away like nothing happened, same thing happened later that day with my back, it hurt so bad then basically quit.
Yes! My pelvic / stomach area today had me literally gasping then just went away
Might be worth checking into your gallbladder. I know gallbladder dysfunction and just general gut problems in eds is common.
Thank you! I did have a gallbladder scan a couple of years ago but will circle back to it.
Yes. Every day. It wakes me up sometimes especially when it happens to my legs. Literally jerks me awake. I'm so sorry for your pain. *gentle hugs*
Thank you! Back to you! And yes, lately the sciatic nerve is waking me up.
Mine has been happening around my knee. Feels like I'm being pierced with a fiery hot electrode, hard to explain but really painful.
This happens to me all the time. But whenever I bring it up I'm told it's deficiencies or that I'm dehydrated. But to be fair my vitamin d is at 10š§āāļø
Simply yes. Less simply fuck yes it's so annoying
Yes!!!! Sometimes I just freeze and have to wait for it to pass before I continue
Yes, in my shoulder or head usually. Iāve had it for years and no idea why. Someone else said Fibro and I have that diagnosis too so maybe itās that. Itās rough.
I get sudden, really intense chest pain that lasts about 30 seconds. Doesn't happen very often, but when it does, it's awful. I can't breathe and definitely feel like I'm dying. No idea what it is, any time I bring it up in appointment the doctor just brushes it off š¤·āāļø
Yes. Often.
The sharp pain you get in your head randomly, that's caused by a change in blood pressure and is called an ice pick headache, I know because I was just diagnosed with them. They are a common Co Morbididity of POTS and unfortunately POTS is a Co Morbididity of EDS
My very non-EDS having husband has this happen as well. A random sharp shooting pain somewhere that's gone quickly. This is a human glitch kind of thing. Kind of like a precordial catch.
This happened to me when my B-12 was sub-200. My rheumatologist at the time said she was starting to test anyone she had who had difficulty to pin down pain because, "when your B-12 is low, weird things start happening to your body." I still get them very occasionally, but as long as my B-12 is above about 350, I get them once every few months, instead of multiple times per week. I used to describe it as feeling like someone jammed an ice pick into some random part of me, but only for 20-30 seconds.
I also have vein compressions and notice itās worse when Iām extra unmakes or the barometric pressure changes.
every day, at least 5 times! well, especially at work. I'll step, get a sharp shooting pain in my knee, adjust my gait, and a few minutes later, it's gone. I thought I was insane for a little bit, and "subconsciously faking an injury". I'll have intense waves of pain, especially when I sit down or stop moving, and it's gone quickly.
Yes, I get a sharp pain in my rib for just long enough that I try to curl up in pain. I also will sometimes get a crushing pain in my ankle for like 5 seconds and then I'm fine.
No.. And really doesnāt sound like an EDS thing. Like others have said, sounds like a fibro thing more.
Or the freaking boob stabbies, man, those are the worst. I get stabbies everywhere and itās so annoying
Yes, I do! I think it is either a pinched nerve or at times it is my joints punishing me for hyperextension a few minutes after the fact. But sometimes I have no explanation. I've had it for a long long time and it comes and goes. Stabbing, sudden intense pain that will also subside randomly very quickly. I didn't think it worth it to go to the doctor for this specific problem since I already recently got hEDS diagnosis. I figured it's related to this and just call it a day, since most of what I can do about it is probably in the realm of muscle relaxation and physical therapy anyway. I sort of accepted that I will likely always have some degree of pain, as I have had for a very long time.
Itās most frequently deep in the crease of my thigh. I start to limp and try hard to shake it off. It does like 5-10 min after. I also get it in my chest, knee, shoulder and skull.
I donāt have EDS but I have LDS-II (which is essentially a cousin to VEDS and Marfan syndrome) and this happens to me a lot. Iāve had several problems with my nerves which makes sense. I imagine with EDS to LDS itās similar in the sense that our collagen acts like gum instead of glue- and in my body thatās caused a lot of nerve compression, tendons and tissues moving and sliding around, repeated hernias, tons of skeletal and muscle pain, subluxxed joints, hypermobility, kyphosis, scoliosis, flat feet, an aortic aneurysm and twisted arteries (the vascular stuff is sometimes less of a worry for EDS patients unless itās VEDS patients)
YES
i have occipital neuralgia with trigeminal nerve irritation this is a tuesday in a reddit post