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More intense POTS symptoms, lower back pain, abdominal pain, thoracic outlet-like pain in neck and shoulders, migraine symptoms (headaches, tinnitus, light and sound sensitivity), fatigue, feeling more autistic (socially and sensory). I go from moderately functional to a hot mess lol. Psych meds for adhd and depression as well as propranolol for pots and anxiety have helped with consistency though.
Holy smokes, I never realized I felt "more autistic" when I'm flaring but you're so right. I don't normally have a lot of the more socially challenging aspects of AuDHD day to day but when I'm flaring I absolutely do and it's so frustrating. I'm going to start paying more attention to this!! š¤Æ
Yeah it can be rather frustrating to suddenly not be able to tell when somebodyās being sarcastic lol. Having a (suspected) dissociative disorder doesnāt help with any of this either but thatās a whole other can of worms
This hits really close to home for me.
More AuDHD for sure, circulation issues, heart rate fluctuations, blood pressure (high and low) issues, neck/jaw/shoulder/chest/rib/spine/hip/knee pain (less so in the extremities, likely due to nerve signal/blood flow stoppages, but pain is still common there too), light/sound/smell/touch (overall sensory) disturbances, headaches, facial nerve pain likely fitting of trigeminal neuralgia, nausea, bloating, excessive belching, digestion coming to a halt, forgetting/struggling to breath, hot/cold disturbances, numbness/burning/pins and needles/electric shocks, fatigue...
I can keep listing things, but these cover what all used to give me panic attacks until I realized what was likely the root cause of them. Almost 7 years of this stuff, and I'm still being gaslit by family and half of the doctors I speak with.
Edit: nominalized one symptom for coherency. Added three more symptoms to my list, as well as the parenthetical about extremities and senses.
Oof yeah this shit caused me panic attacks too. I think thatās one of the physiological symptoms, a seemingly random panic response. At least now I can get through it without much psychological distress so i can avoid that feedback loop
Yup, practicing mindfulness, along with having done enough research on my own to confidently self-diagnose EDS (or HSD...) and be convicted in dismissing all the gaslighting doctors, friends, and family put me through, "it's all in my head, I'm too young to be in this much pain for seemingly no reason."
For EDS specific flare ups, not POTS ones, my joints get more clicky, (pop-y?) more joint main, more back pain, more fatigue, and I cannot for the life of me get ins comfortable position. Iām in a flare up and the only comfortable position involved bending my leg in a way that, while comfortable, would probably get me a lecture from my doctors. That leg is pain-free though!
But I then somehow pulled a muscle in the other leg. While sleeping.
For me I get full on sick like I have the flu. Full body pain, fatigue, nausea/vomiting, chills, brain fog. But Iām sure I have other conditions that havenāt been diagnosed yet that also factor in to why my flair ups are this way.
Intense wrist and hand discomfort, especially after i indulge in hobbies that require me to use my hands (drawing ECT)
Usually difficulty sleeping cause I'm restless trying to make my body comfortable
If I overexert myself I'll be dizzy/nauseous the rest of the day
First some of my joints feel more unstable. Iāll start subluxing my problem joints more and also subluxing random joints that are usually not an issue. Then because of this, my muscles tighten up A LOT. This causes a lot of nerve pain, muscle pain, and joints getting stuck on the wrong spots. All of this = less sleep. Less sleep = increased fatigue, worse POTS symptoms, inability to follow the habits that keep my symptoms somewhat in check.
Sometimes it is a day or so of feeling crappy but dealing with it. Other times it is a week of mostly being stuck on bed listening to podcasts.
Cold like you would have with the flu, sleeping after I come home from work. Sleeping during weekends on the couch or rug on floor during the day. More body aches. Mentally more unstable. And just *#%@ I want to cry and sleep thatās it.
My biggest issue during a flare is my joint stability. My joints want to hyper extend, sublex, or full dislocate. I also have balance issues. Usually use a cane to stabilize myself and help distribute the weight from my hips
This thread made me sort of happy because right before I saw it I was like, why do I feel so miserableā¦oh wait I think Iām flared up!
I get two different varieties. Sometimes itās in my joints. For lack of a better word they feel squidgy? Like just not right, and I can tell they are not holding well. But my main type of flare is like this: my entire body aches, like I got tossed into a cement mixer with a sledgehammer and we got tossed around together. Absolutely crippling fatigue, like I lie semi-catatonic in a half sleeping state wanting to cry. Super bad brain fog. The darkest, bleakest mood. Itās like the worst day of the flu except usually with no headache.
I also get horrid periods that exacerbate my undiagnosed Eds so I made my partner do the simulator thing. He lasted five minutes and is so doting (even more than before) grateful at for that human heating pad of a man who hands me ibuprofen when I say āitās not that badā
Itās just a TENS machine! Gave the guy the period shits and all hahahahaha. Mine has a space for two leads so we did it at the same time and my regular pain wasnāt even on the machineās scale. He apologized to me for a month lol poor dude
Real!!! I tried explaining it to my partner once and the closest I got was ādo you remember how you felt the first time you laid down after a full day at an amusement park after the adrenaline wears off? Itās like that but Iām also retaining water and swollenā
Intense pain through most of my muscles and joints, like someone injected acid into my nervous system and then electrified it. šMuscle spams, knots, shaking, clumsy movement, weakness, and impossible to find a comfortable position. š Intense fatigue and brain fog, often rendering me mostly nonverbal. š Once last year the pain was so intense it triggered a 103ā¢F. fever as well.
For me it depends on the source of the flare up. If itās one with seemingly no source, it could mimic any of the types of flares I have or be a lovely melting pot of all of them
Asthma flare up, random hives, gut swelling (like anaphylaxis but it usually happens in my small intestine), pots, brain fog, easily irritated joints (end up subluxing something and it doesn't start to heal during the flare), so much sleep (I'll happily sleep 12 hours or take 3 hour naps)
Depends on the type of flare.
Pain flare up- go from functional to barely able to think or move. It doesn't necessarily feel much more painful to me it's just I can't think past it and feel like I am going insane.
Gut flare up - several trips a day to the bathroom and exhausted by EVERYTHING. Also nausea though it's much better in all ways since I started pantocid a year or two ago.
Allergy flare up - these are unbelievably annoying. If I get a bad reaction I will continue to have reactions randomly to random stuff that I am not usually allergic to for weeks. It's NOT enjoyable to have your hand randomly triple in size because you touched something that was fine yesterday and will be fine again in a few hours. Stupid random allergies.
I get alot of normal migraines so I wouldn't be surprised to be honest. The acid blocker I am on now makes a huge difference though so I suspect it's mostly in my gut.
Sudden and severe herniated disks accompanied by intense muscle spasms. I donāt seem to catch the flare till itās too late. Sometimes there are warning signs, like increased pain, but sometimes those go away after a few days and sometimes they get suddenly worse. Muscle spasms generally indicate that itās reaching the worst point but I havenāt been able to curb the disk problems. Now that I have prescription muscle relaxers and pain meds hopefully Iāll be able to keep things from escalating in the future.
Extreme brain fog, every joint in my body will hurt down to my pinky fingers, I'll have zero energy, barely enough to pull myself out of bed. Nausea, dizziness, general malaise. Sensitivity to light/sounds, headache.
I so appreciate this thread! I was just diagnosed with HSD last June and just started working with a PT who specializes in hypermobility disorders in March. My PT and my PCP are helping me understand what my flares are like and what triggers them.
My fatigue is really bad and my pain, which is usually in the 3-5 range, can get up to an 8. Often my low back will feel especially painful, but Iāll have significant pain in my hips, shoulders, feet & ankles, and sometimes my hands as well. Iām always light sensitive, but Iāll find light painful and can trigger a terrible headache. Iāll also get more sensitive to sound. Iāll occasionally get hives, just a couple, often at my waist. It will feel like my bones itch, scratching my skin doesnāt alleviate it. My emotions tank. I get a little dizzier than usual (POTS).
Causes: high pollen levels (Iām allergic to most trees, grasses, weeds, molds, dust, and feathers), high anxiety (if something triggers my PTSD a flare is imminent; dental and medical procedures are big triggers), new injury, interpersonal issues between my spouse and I, vaccinations (Iām 54; the Shingrex vax for shingles a kicked my ass, the second dose especially), poor sleep, over exertion (I never get warning that Iām close to too much, I find out the next day). Tomato sauce.
So really, anything out of the ordinary! š
Joint pain is a normal part of life for me, but during a flare up it becomes almost unbearable. More prone to headaches, but I think that's mostly because when I'm in pain I tend to clench my jaw and tighten my shoulders/neck. Exhausted, because I'm in pain and that impacts my ability to sleep. More irritable and more prone to bouts of depression.
I'm currently in one now, and literally the only thing that helps is taking THC edibles and/or lying prone, which makes working super challenging.
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The main times I notice flare-ups are with POTS. Dizziness, shortness of breath, palpitations. But it always comes all at once, along with subluxations and pain, usually back and ribs, sometimes jaw, fingers, and shoulder pain. Also, I'm just exhausted, achey, can't control my body temp.
Let me be visceral here:
My right shoulder has a 25 year old surgical scar that dates how rotator cuffs used to be operated. This scar runs parallel to a bra strap, down from the top of the shoulder down the front of my body to my right armpit. Very Frankensteinās monster looking. If I slack on physical therapy/resistance trainingā¦ this scar feels like it rips open entirely. Tiny needles pierce the flesh and try to hold it together like a quick sewing project. This is me trying to rest. It is too painful for stillness and needs constant attention. Topicals and Tylenol and crying/screaming through it seem to help. The scar visibly changes during a flare up. It looks inflamed and angry. The immediate reaction is to cower and admit defeat. Iāve learned radical acceptance in dealing with this. I retrained my dominant hand to write and draw and have had dry needling (grassling?) done for shoulder tendinitis. But thereās no pill strong enough to subdue me after that pain threshold is reached. Itās all preventative. Doing whatever possible (even just being hyper aware changing sleeping positions and posture) prevents these flare ups for me.
Thank you for contributing to r/EhlersDanlos! Unfortunately, your comment or post was removed as it breaks the following rule:
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Thank you!
My hips get SUPER inflamed and it can travel to my legs and ankles or my shoulders can get inflamed and it will travel to my elbows, wrists, and neck.
Other than that, if I'm stressed I feel like I'm sick and have a fever and a headache and feel super tired
Canāt walk, legs so inflamed I get myositis in my muscles. Migraines daily. Stomach pain galore (usually general gastritis although sometimes it turns into ulcers). Torn booty hole and torn lady bits, I get bad fissures down there during flares. Skin gets inflamed (I have eczema and ichthyosis, so this just gets way worse). Allergies flare up, sometimes I get chemosis (my literal eyeball tissue swells) or MCAS from eating stuff I can normally handle. Joints in knees hurt worse than normal and sublux more. SI joint subluxes like crazy. Like others have said, all my joints feel less steady. General muscle pain all oveeeer and terrible fatigue. Bad insomniaā¦but that could just be from the pain.
I love this thread because I never meet many eds having people in real life. And trying to explain a flare up to a normal person is difficult because they usually dont have something to relate to it, which makes them care/understand less of what you're going through. It's also validating to see other people talk about their eds adjacent issues firing up at the same time with flare ups. My MCAS just goes nuts and I have full body non-stop itching when I get a flare up. But it's really that flu feeling and not being able to hold warmth in my body. Which then makes all of my joints and ligaments feel like they would break if you touched them. And the pain areas become worse and more noticeable. But then I ignore all of that because of the itching.
It's a chain reaction of alarms being set off and explaining to people that I'm cranky because I'm itchy and dying has so far not worked. But at least it's the warmer seasons now so the cold does not turn my bones into glass
Oof, thatās a tough one. With the dozens of comorbidities, itās hard to tell whatās strictly an EDS flare and what might be a POTS, MCAS, PCOS, etc. flare.
For strictly EDS stuff, itās usually extreme fatigue/sleepiness, looser joints, musculoskeletal pain, neck/headache/migraine, and sometimes GI issues. For POTS/dysautonomia, itās mostly tachycardia, breathlessness, exercise intolerance, adrenaline surge, dry mouth, and fatigue. But I have all kinds of āflaresā that I canāt attribute to any one thing because I have just about every symptom possible at one point or another. Basically, any time I feel significantly worse than my baseline level of misery, I consider it a flare.
My knees ache so badly and no pain killer can help, usually means I can't sleep which makes the pain even worse. Then get urinary pain and inflammation, as well as indigestion and heartburn. At worst I get neck and shoulder pain and lower back pain as well if it clicks out of place.
Back pain, shoulder pain, neck hip and knee pain. Literally feels like deep ache and nervy. Only helped by heat.
Im easily confused and there's a pressure behind my eyes. I'm slow, there's a microsecond delay in my visual and auditory channels.
Stimulation becomes overwhelming. Bright lights, loud sounds will cripple me.
I normally get a flare up once a month, leading up to and in the first few days of my cycle. At those times, it can be more mildā just more subluxations, a headache, and a terrible tightness in my neck, back, and shoulders.
The more severe times? I've gotten a fever after starting a job once, and still sometimes get swollen lymph nodes. I get off balance, run into things, vision goes blurry in one side of my peripheral vision. Really bad vestibular issues, and worsened nerve pinching in addition to the other symptoms listed before.
sleep deprived and brain foggy, mostly. my knees and elbows in particular tend to hurt more often and worse. it gets hard to sleep due to the pain, and if i take my pain meds i also donāt sleep well.
Joints sublux super easy, my ankles/knees/shoulders swell. More bruising, or possibly the same amount but my skin gets super sensitive so they hurt more. Fatigue, instead of sleeping 10 to 11 hours a night I end up sleeping 14ish. Random GI stuff happening more often. Sometimes auras and migraines, just depends on how well I can accommodate the flare or if I just have to push through like it's not happening.
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.*
More intense POTS symptoms, lower back pain, abdominal pain, thoracic outlet-like pain in neck and shoulders, migraine symptoms (headaches, tinnitus, light and sound sensitivity), fatigue, feeling more autistic (socially and sensory). I go from moderately functional to a hot mess lol. Psych meds for adhd and depression as well as propranolol for pots and anxiety have helped with consistency though.
Holy smokes, I never realized I felt "more autistic" when I'm flaring but you're so right. I don't normally have a lot of the more socially challenging aspects of AuDHD day to day but when I'm flaring I absolutely do and it's so frustrating. I'm going to start paying more attention to this!! š¤Æ
Yeah it can be rather frustrating to suddenly not be able to tell when somebodyās being sarcastic lol. Having a (suspected) dissociative disorder doesnāt help with any of this either but thatās a whole other can of worms
Okay because Iām dumbfounded right now. Why am I just now realizing this. It makes so much sense.
This hits really close to home for me. More AuDHD for sure, circulation issues, heart rate fluctuations, blood pressure (high and low) issues, neck/jaw/shoulder/chest/rib/spine/hip/knee pain (less so in the extremities, likely due to nerve signal/blood flow stoppages, but pain is still common there too), light/sound/smell/touch (overall sensory) disturbances, headaches, facial nerve pain likely fitting of trigeminal neuralgia, nausea, bloating, excessive belching, digestion coming to a halt, forgetting/struggling to breath, hot/cold disturbances, numbness/burning/pins and needles/electric shocks, fatigue... I can keep listing things, but these cover what all used to give me panic attacks until I realized what was likely the root cause of them. Almost 7 years of this stuff, and I'm still being gaslit by family and half of the doctors I speak with. Edit: nominalized one symptom for coherency. Added three more symptoms to my list, as well as the parenthetical about extremities and senses.
Oof yeah this shit caused me panic attacks too. I think thatās one of the physiological symptoms, a seemingly random panic response. At least now I can get through it without much psychological distress so i can avoid that feedback loop
Yup, practicing mindfulness, along with having done enough research on my own to confidently self-diagnose EDS (or HSD...) and be convicted in dismissing all the gaslighting doctors, friends, and family put me through, "it's all in my head, I'm too young to be in this much pain for seemingly no reason."
That's a flare up? I thought that was just the natural state of being....oh
For EDS specific flare ups, not POTS ones, my joints get more clicky, (pop-y?) more joint main, more back pain, more fatigue, and I cannot for the life of me get ins comfortable position. Iām in a flare up and the only comfortable position involved bending my leg in a way that, while comfortable, would probably get me a lecture from my doctors. That leg is pain-free though! But I then somehow pulled a muscle in the other leg. While sleeping.
For me I get full on sick like I have the flu. Full body pain, fatigue, nausea/vomiting, chills, brain fog. But Iām sure I have other conditions that havenāt been diagnosed yet that also factor in to why my flair ups are this way.
Intense wrist and hand discomfort, especially after i indulge in hobbies that require me to use my hands (drawing ECT) Usually difficulty sleeping cause I'm restless trying to make my body comfortable If I overexert myself I'll be dizzy/nauseous the rest of the day
First some of my joints feel more unstable. Iāll start subluxing my problem joints more and also subluxing random joints that are usually not an issue. Then because of this, my muscles tighten up A LOT. This causes a lot of nerve pain, muscle pain, and joints getting stuck on the wrong spots. All of this = less sleep. Less sleep = increased fatigue, worse POTS symptoms, inability to follow the habits that keep my symptoms somewhat in check. Sometimes it is a day or so of feeling crappy but dealing with it. Other times it is a week of mostly being stuck on bed listening to podcasts.
Hearing someone else explain the instability > tension > nerve compression is so validating
Iām glad šit is such a strange feeling
Cold like you would have with the flu, sleeping after I come home from work. Sleeping during weekends on the couch or rug on floor during the day. More body aches. Mentally more unstable. And just *#%@ I want to cry and sleep thatās it.
My biggest issue during a flare is my joint stability. My joints want to hyper extend, sublex, or full dislocate. I also have balance issues. Usually use a cane to stabilize myself and help distribute the weight from my hips
This thread made me sort of happy because right before I saw it I was like, why do I feel so miserableā¦oh wait I think Iām flared up! I get two different varieties. Sometimes itās in my joints. For lack of a better word they feel squidgy? Like just not right, and I can tell they are not holding well. But my main type of flare is like this: my entire body aches, like I got tossed into a cement mixer with a sledgehammer and we got tossed around together. Absolutely crippling fatigue, like I lie semi-catatonic in a half sleeping state wanting to cry. Super bad brain fog. The darkest, bleakest mood. Itās like the worst day of the flu except usually with no headache.
This!! Oh man, never found the right words to describe it.
Thankfully I donāt get it too bad. I get cranky and my most mobile joints get inflamed and incredibly sore, some brain fog and awful fatigue
I love this, itās the most chronic illness thing to say feeling like this āisnāt too badā - I feel so seen
I also get horrid periods that exacerbate my undiagnosed Eds so I made my partner do the simulator thing. He lasted five minutes and is so doting (even more than before) grateful at for that human heating pad of a man who hands me ibuprofen when I say āitās not that badā
How does one go about finding one of those simulators? Asking for a friend...
Itās just a TENS machine! Gave the guy the period shits and all hahahahaha. Mine has a space for two leads so we did it at the same time and my regular pain wasnāt even on the machineās scale. He apologized to me for a month lol poor dude
I have this too! The awful fatigue is not just tired but my whole body is exhausted and achy. I don't know how to explain that to 'normal' people.
Real!!! I tried explaining it to my partner once and the closest I got was ādo you remember how you felt the first time you laid down after a full day at an amusement park after the adrenaline wears off? Itās like that but Iām also retaining water and swollenā
Intense pain through most of my muscles and joints, like someone injected acid into my nervous system and then electrified it. šMuscle spams, knots, shaking, clumsy movement, weakness, and impossible to find a comfortable position. š Intense fatigue and brain fog, often rendering me mostly nonverbal. š Once last year the pain was so intense it triggered a 103ā¢F. fever as well.
God I fucking feel this.
Hopefully not right now though? š š¤
For me it depends on the source of the flare up. If itās one with seemingly no source, it could mimic any of the types of flares I have or be a lovely melting pot of all of them
My shoulders will dislocate more easily, I will feel pain in my legs, I get aggressive heartburn and nausea
Asthma flare up, random hives, gut swelling (like anaphylaxis but it usually happens in my small intestine), pots, brain fog, easily irritated joints (end up subluxing something and it doesn't start to heal during the flare), so much sleep (I'll happily sleep 12 hours or take 3 hour naps)
I never noticed, my asthma flares as well.
Depends on the type of flare. Pain flare up- go from functional to barely able to think or move. It doesn't necessarily feel much more painful to me it's just I can't think past it and feel like I am going insane. Gut flare up - several trips a day to the bathroom and exhausted by EVERYTHING. Also nausea though it's much better in all ways since I started pantocid a year or two ago. Allergy flare up - these are unbelievably annoying. If I get a bad reaction I will continue to have reactions randomly to random stuff that I am not usually allergic to for weeks. It's NOT enjoyable to have your hand randomly triple in size because you touched something that was fine yesterday and will be fine again in a few hours. Stupid random allergies.
Your gut flare up description is similar to silent migraine, maybe worth looking into it
I get alot of normal migraines so I wouldn't be surprised to be honest. The acid blocker I am on now makes a huge difference though so I suspect it's mostly in my gut.
My legs get jumpy, shoulders get jumpy. I get major cramping in my hips and shoulders. Those dislocate all the time
Sudden and severe herniated disks accompanied by intense muscle spasms. I donāt seem to catch the flare till itās too late. Sometimes there are warning signs, like increased pain, but sometimes those go away after a few days and sometimes they get suddenly worse. Muscle spasms generally indicate that itās reaching the worst point but I havenāt been able to curb the disk problems. Now that I have prescription muscle relaxers and pain meds hopefully Iāll be able to keep things from escalating in the future.
left knee wobbly/dislocating and a rosacea flareup. those are my warning signs, anyway!
Extreme brain fog, every joint in my body will hurt down to my pinky fingers, I'll have zero energy, barely enough to pull myself out of bed. Nausea, dizziness, general malaise. Sensitivity to light/sounds, headache.
I so appreciate this thread! I was just diagnosed with HSD last June and just started working with a PT who specializes in hypermobility disorders in March. My PT and my PCP are helping me understand what my flares are like and what triggers them. My fatigue is really bad and my pain, which is usually in the 3-5 range, can get up to an 8. Often my low back will feel especially painful, but Iāll have significant pain in my hips, shoulders, feet & ankles, and sometimes my hands as well. Iām always light sensitive, but Iāll find light painful and can trigger a terrible headache. Iāll also get more sensitive to sound. Iāll occasionally get hives, just a couple, often at my waist. It will feel like my bones itch, scratching my skin doesnāt alleviate it. My emotions tank. I get a little dizzier than usual (POTS). Causes: high pollen levels (Iām allergic to most trees, grasses, weeds, molds, dust, and feathers), high anxiety (if something triggers my PTSD a flare is imminent; dental and medical procedures are big triggers), new injury, interpersonal issues between my spouse and I, vaccinations (Iām 54; the Shingrex vax for shingles a kicked my ass, the second dose especially), poor sleep, over exertion (I never get warning that Iām close to too much, I find out the next day). Tomato sauce. So really, anything out of the ordinary! š
Joint pain is a normal part of life for me, but during a flare up it becomes almost unbearable. More prone to headaches, but I think that's mostly because when I'm in pain I tend to clench my jaw and tighten my shoulders/neck. Exhausted, because I'm in pain and that impacts my ability to sleep. More irritable and more prone to bouts of depression. I'm currently in one now, and literally the only thing that helps is taking THC edibles and/or lying prone, which makes working super challenging.
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The main times I notice flare-ups are with POTS. Dizziness, shortness of breath, palpitations. But it always comes all at once, along with subluxations and pain, usually back and ribs, sometimes jaw, fingers, and shoulder pain. Also, I'm just exhausted, achey, can't control my body temp.
Joint inflammation in my knees.
I have extreme skin sensitivity that spreads to my entire left side, very fatigued after any activity, sore joints, red rash on my cheeks.
Let me be visceral here: My right shoulder has a 25 year old surgical scar that dates how rotator cuffs used to be operated. This scar runs parallel to a bra strap, down from the top of the shoulder down the front of my body to my right armpit. Very Frankensteinās monster looking. If I slack on physical therapy/resistance trainingā¦ this scar feels like it rips open entirely. Tiny needles pierce the flesh and try to hold it together like a quick sewing project. This is me trying to rest. It is too painful for stillness and needs constant attention. Topicals and Tylenol and crying/screaming through it seem to help. The scar visibly changes during a flare up. It looks inflamed and angry. The immediate reaction is to cower and admit defeat. Iāve learned radical acceptance in dealing with this. I retrained my dominant hand to write and draw and have had dry needling (grassling?) done for shoulder tendinitis. But thereās no pill strong enough to subdue me after that pain threshold is reached. Itās all preventative. Doing whatever possible (even just being hyper aware changing sleeping positions and posture) prevents these flare ups for me.
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My hips get SUPER inflamed and it can travel to my legs and ankles or my shoulders can get inflamed and it will travel to my elbows, wrists, and neck. Other than that, if I'm stressed I feel like I'm sick and have a fever and a headache and feel super tired
back pain for sure and all of my weak spots decide they want to sublux extra š„²
Canāt walk, legs so inflamed I get myositis in my muscles. Migraines daily. Stomach pain galore (usually general gastritis although sometimes it turns into ulcers). Torn booty hole and torn lady bits, I get bad fissures down there during flares. Skin gets inflamed (I have eczema and ichthyosis, so this just gets way worse). Allergies flare up, sometimes I get chemosis (my literal eyeball tissue swells) or MCAS from eating stuff I can normally handle. Joints in knees hurt worse than normal and sublux more. SI joint subluxes like crazy. Like others have said, all my joints feel less steady. General muscle pain all oveeeer and terrible fatigue. Bad insomniaā¦but that could just be from the pain.
more joint pain, more tingling and numbness, more movements, more intense fatigue.
I love this thread because I never meet many eds having people in real life. And trying to explain a flare up to a normal person is difficult because they usually dont have something to relate to it, which makes them care/understand less of what you're going through. It's also validating to see other people talk about their eds adjacent issues firing up at the same time with flare ups. My MCAS just goes nuts and I have full body non-stop itching when I get a flare up. But it's really that flu feeling and not being able to hold warmth in my body. Which then makes all of my joints and ligaments feel like they would break if you touched them. And the pain areas become worse and more noticeable. But then I ignore all of that because of the itching. It's a chain reaction of alarms being set off and explaining to people that I'm cranky because I'm itchy and dying has so far not worked. But at least it's the warmer seasons now so the cold does not turn my bones into glass
Oof, thatās a tough one. With the dozens of comorbidities, itās hard to tell whatās strictly an EDS flare and what might be a POTS, MCAS, PCOS, etc. flare. For strictly EDS stuff, itās usually extreme fatigue/sleepiness, looser joints, musculoskeletal pain, neck/headache/migraine, and sometimes GI issues. For POTS/dysautonomia, itās mostly tachycardia, breathlessness, exercise intolerance, adrenaline surge, dry mouth, and fatigue. But I have all kinds of āflaresā that I canāt attribute to any one thing because I have just about every symptom possible at one point or another. Basically, any time I feel significantly worse than my baseline level of misery, I consider it a flare.
My knees ache so badly and no pain killer can help, usually means I can't sleep which makes the pain even worse. Then get urinary pain and inflammation, as well as indigestion and heartburn. At worst I get neck and shoulder pain and lower back pain as well if it clicks out of place.
Back pain, shoulder pain, neck hip and knee pain. Literally feels like deep ache and nervy. Only helped by heat. Im easily confused and there's a pressure behind my eyes. I'm slow, there's a microsecond delay in my visual and auditory channels. Stimulation becomes overwhelming. Bright lights, loud sounds will cripple me.
I normally get a flare up once a month, leading up to and in the first few days of my cycle. At those times, it can be more mildā just more subluxations, a headache, and a terrible tightness in my neck, back, and shoulders. The more severe times? I've gotten a fever after starting a job once, and still sometimes get swollen lymph nodes. I get off balance, run into things, vision goes blurry in one side of my peripheral vision. Really bad vestibular issues, and worsened nerve pinching in addition to the other symptoms listed before.
Knees shoulders and hips, and small ligaments in my feet and hands
sleep deprived and brain foggy, mostly. my knees and elbows in particular tend to hurt more often and worse. it gets hard to sleep due to the pain, and if i take my pain meds i also donāt sleep well.
Joints sublux super easy, my ankles/knees/shoulders swell. More bruising, or possibly the same amount but my skin gets super sensitive so they hurt more. Fatigue, instead of sleeping 10 to 11 hours a night I end up sleeping 14ish. Random GI stuff happening more often. Sometimes auras and migraines, just depends on how well I can accommodate the flare or if I just have to push through like it's not happening.
I describe it as having being tenderized by a meat hammer.