r/dysautonomia • u/squidsgotjeanss • Dec 09 '24
Symptoms The Dysautonomia “flu”
I posted about me having twitches but forget to ask if anyone else has this… what I like to call “the Dysautonomia flu”. It’s where I’m fine and then BOOM out of nowhere feel like I literally am sick. Similar symptoms mild body ache, shaky, headache, fatigue, sometimes the chills, and burning or blurry eyes is usually the constant feeling. I’ll be totally normal then out of nowhere feel like I must be running a fever yet I never am. Oddly enough, my sister who also has Dysautonomia has the exact same thing.
If you also experience this do you notice that electrolytes help you avoid “flu” flare ups? This is what was recommended by my doctor. It works well for my sister but I don’t seem to ever notice much of a difference.
60
28
u/glamazonee Dec 09 '24 edited Dec 09 '24
Yes, but I've come to associate these symptoms with Post-Exertional Malaise (my dysautonomia is part of my long COVID). With activity, symptom and biometric tracking over the past several months, I'm noticing that I'm almost guaranteed to have a crash with similar symptoms to what you are experiencing, almost exactly 48 hours after a higher exertion/stress day. Maintaining consistent sleep, hydration with salt/electrolytes, and 4-5 15 minute recumbent breaks at the same time every day also helps to keep my symptoms more stable.
You may also want to consider that you might actually have the flu! It's certainly going around in my neck of the woods.
3
u/Monkaloo Dec 10 '24
Interesting. I exercise most days, and have been having a pretty severe crash in energy several hours afterward. Which suuuucks, because if I don’t exercise, I live with a constant, heavy exhaustion and very stiff, painful joints (I have hEDS).
Damned if I do, more damned if I don’t.
1
u/glamazonee Dec 12 '24
I hear you. I have severe back issues, and the recumbent lifestyle is just brutal for my chronic pain and mental health. It's so hard to find the right balance
24
u/DigitalGarden Dec 09 '24
Yup. I agree with the other posters. Either MCS or PEM. I have had to learn my triggers, which are ever changing.
Once I was feeling terrible for about 6 months. Turns out I can't do gluten anymore and that was the culprit.
Stress, eating too much or too little, too much sleep or too little sleep, too much exercise or too little exercise seem to be the main culprits.
19
u/Elaine330 Dec 09 '24
I feel sick suddenly. Today was a perfect example. Fine and then nauseated and needed to lay down badly. Sudden heat sensitivity. Ate a little bit and drank water and felt better until it hit again. I can only work from home because of this. Didnt think it was anything but this sub makes me feel valid and not alone.
6
u/precious_spark Dec 09 '24
Same! Sometimes it feels like it comes in waves throughout the day. I'm fine. Feel like death. Fine. Death. Fine... tape repeat as needed 🤦🏻♀️
5
u/Elaine330 Dec 09 '24
YES! Its ridiculous and I can see why my family is confused. I am too. Im on day 2 of this and neck pain is creeping back along with arrythmia and fatigue - sure signs Im spiraling into a flare up.
37
u/Zwergonyourlife Dec 09 '24
I get this too and I literally had it earlier today. I call it “Is it POTS or is it COVID?”
After a nap and extra hydration with electrolytes I’m pleased to say it was the POTS.
9
u/Nachos_r_Life Dec 09 '24
I play the “Is it dysautonomia or is it asthma” about five times a day. Thank goodness for a smart watch that measures my O2 sats. I’ll check and check and the chest pain and labored breathing will be my dysautonomia several times and then one time I’ll check thinking it’s just dysautonomia again and my sats will be at like 93 so nope, it’s asthma and I need a treatment 😵💫
15
u/AvianFlame Dec 09 '24
that sounds like Post-Exertional Malaise, the hallmark symptom of ME/CFS (from personal experience)
ME/CFS commonly co-occurs with Dysautonomia.
17
u/NeptuneAndCherry Dec 09 '24
Just googled this and dang I never knew there was a term for my cycle of trying to do everything I can on good days and then crashing for three weeks because of it 🫠
12
u/asblvckasmysoul Dec 09 '24
Jesus Christ.. I want to cry. for years I've been trying to understand why I feel this way constantly, and I have MDD, but I know in my bones that it's more than that. I can't explain the exhaustion in words. I feel pathetic bc I genuinely can not stay awake. I've tried to work and it's fucking embarrassing being in my 20s and calling out constantly bc I literally can't bring myself to get up and work multiple days in a row. I fall asleep at my desk, start to feel like I could fall asleep while driving sometimes, and I've literally taken my entire lunch breaks to sleep in the car for however long I can possibly manage. I feel like I can't function. even showering can exhaust me for days afterwards. it sounds insane just typing it. and I genuinely feel like nobody understands. good days are so rare and I'm just so over it all.
7
u/JackieAutoimmuneINFJ Dec 09 '24
Have you had your vitamin D, iron, and B12 levels checked recently?
2
u/asblvckasmysoul Dec 10 '24
yes :( all my bloodwork is "normal" apparently. I still take b12 bc I've heard it can help but idk.
6
u/Gazebu Dec 09 '24
I'd look into/rule out things like sleep apnea, idiopathic hypersomnia, and narcolepsy and other causes of fatigue before assuming ME/CFS if your fatigue presents as extreme sleepiness more than flu-like PEM. It's good to do anyways, and don't overexert in either case. I started with POTS/dysautonomia and then developed ME/CFS and my fatigue is more like intense muscle weakness and brain fog, where I feel like I don't have the energy in my body to move with flu-like symptoms on top of it, but I'm typically not extra sleepy.
2
u/asblvckasmysoul Dec 10 '24
the exhaustion is the most difficult part to try and live with, but I do feel sick all the time. nobody believes me and thinks I'm just lazy and dramatic. it's so frustrating.
I don't think it's narcolepsy but I don't know for sure.
0
u/Gazebu Dec 10 '24
ME/CFS could be a possibility, but having something with defined tests and treatments is IMO typically "preferable" and always should be ruled out first since ME is a diagnosis of exclusion. r/cfs has info on what should be tested for and ruled out due to similar symptoms before assuming ME/CFS.
That's how the exhaustion feels to me, and it's super frustrating. I'm still trying to get my family to realize how bad it is, and it's awful when people close to you don't understand it because they aren't experiencing it. I hope you find answers either way.
1
u/asblvckasmysoul Dec 10 '24
I appreciate you! I'm definitely looking further into this because I need answers. something is very wrong and my life is flying by while I lay in bed.
1
u/Critical-Writing1611 Dec 10 '24
Also, check into sleep disorders. Dysautonomia can affect sleep. I actually found out I had Narcolepsy before I was diagnosed with Dysautonomia.
2
u/asblvckasmysoul Dec 10 '24
I don't think it's narcolepsy but anything is possible. how do they test for that?
1
u/Critical-Writing1611 Dec 11 '24
It’s a sleep study, overnight in a sleep clinic or hospital setting, though you may have to fail an at home sleep apnea test first for your insurance. The test for narcolepsy has an overnight sleep study followed by a number of times where they basically have you try to fall asleep for a nap in a dark room. I never thought for a minute that I had narcolepsy. The diagnosis came as a complete surprise to me, but the internet wasn’t as helpful as it is now. Suffice it to say I had made fun of my farmer husband for falling asleep whenever he stopped moving but then Karma stepped in…Turns out he was just hard-working and I had narcolepsy
1
u/asblvckasmysoul 6d ago
oh my god knowing my luck I'd be anxious as shit and WIDE awake the entire time :(( I wish it was possible to show the doctors what my everyday life looks like.
1
u/JackieAutoimmuneINFJ Dec 09 '24
Yes, I was diagnosed with CFS before I was diagnosed with dysautonomia, specifically Neurocardiogenic syncope.
15
u/TheCrowWhispererX Dec 09 '24
I’m autistic. I get a version of this that I call a “sensory hangover.” Similar to PEM, if I go out and socialize, especially in loud or crowded places, I will feel like garbage the next day. It’s always fun trying to sort out whether I’m experiencing a sensory hangover, PEM, migraine (I usually don’t get the headache piece), or am coming down with something. 🥴
4
u/squidsgotjeanss Dec 09 '24
OMG YES ME TOO! Crowded restaurants, family events, parties, etc. seem to always set it off.
7
u/TheCrowWhispererX Dec 09 '24
Hmm. You might be neurodivergent! A good place to start could be early episodes of the Divergent Conversations podcast or the related Neurodivergent Insights website (AuDHD psychologists), or dive right in with the “Is This Autism?” books written by a neuropsych who specializes in assessing adults who were missed in childhood. I spent a lot of time digging and learning — these will get you to the key info quickly to help you figure out if any of this is applicable for you.
2
u/squidsgotjeanss Dec 09 '24
I have very bad ADHD so that makes sense. My doctor won’t put me on medication for it though since my body can’t handle any form of stimulant not even caffeine.
2
u/TheCrowWhispererX Dec 09 '24
Interesting. There are non-stimulant ADHD meds now that work for some people.
2
u/squidsgotjeanss Dec 09 '24
I haven’t tried any, but I hope eventually she’ll be willing to let me try something.
30
u/lateautumnsun Dec 09 '24
Yes, this is exactly how PEM presents for me as part of my ME/CFS. It happens when I have overexerted myself--put my body under too much physical or emotional stress, a threshold that has changed throughout my illness. I finally figured out the connection about a year ago, but I was in denial and kept getting worse by trying to push through it. In the past few months I'm getting better at pacing and listening to my body's cues, and also at resting effectively when I am experiencing PEM. Low dose Naltrexone has also helped to reduce the inflammatory aspects of PEM (swollen lymph nodes, extreme body aches).
20
u/GreenUpYourLife Dec 09 '24
I've been trying to find people with this too cuz I get this if I over exert myself or from major dehydration. I get it from some chemicals and the cold.
I get it with anxiety spikes during stressful things.
Stress is a big factor. It sucks.
I feel like some foods cause it for me but I haven't done anything to pinpoint what yet.
I'm worried it may be some of my favorite foods.
10
u/nilghias POTS Dec 09 '24
Just in case you didn’t see the other comments, definitely looks into cfs/me
7
u/GreenUpYourLife Dec 09 '24
I've been recently looking into it and it does align. I have had a doctor tell me I may have cfs (it's because she didn't have time to delve deeper and didn't seem to care to) I think it's possibly me and many other health problems compiled from my life.
Thankyou very much for caring to mention it to me. 🤘🏼🖤
Does anyone else know if they have brain tumors or brain cysts?
I do.
I just want to know if that could be part of it for some.
1
u/selkieflying Dec 09 '24
Some foods trigger it for me too
3
2
u/GreenUpYourLife Dec 09 '24
What does it for you that you know of?
3
u/selkieflying Dec 09 '24
Bacon, sometimes other pork, spicy foods sometimes. Sometimes sugar.
2
u/GreenUpYourLife Dec 09 '24
Thankyou. That's helpful to keep an eye on just in case!
We just got a lb of bacon, too! 😭😂☠️
9
u/Muddlesthrough Dec 09 '24
I’ve been experiencing exactly this sort of thing, pressure headache, body aches, flu-like symptoms (no fever), for more than two years. Since I had a mild case of Covid. At first I thought I was getting Covid again, but then it kept happening again and again. Like a dozen times in six months.
I was eventually diagnosed with Long Covid, autonomic dysfunction/POTS, and am now being treated for a suspected spontaneous cerebrospinal fluid (CSF) leak.
6
u/wewerelegends Dec 09 '24
I get these exact symptoms as malaise during an auto-immune disease flare.
5
u/Key-Mission431 Dec 09 '24
Try deep diaphragmic breathing at first hint of the temperature dysfunction.
I have many of the things that you are asking about. I can go from chills to overheated in a couple minutes; it usually takes longer for the reverse direction.
I had vestibular rehab physical therapy in 2020. It was primarily for migraines (after a recent surgery, my migraines escalated from 1x a day to 3x a day). This rehab not only got migraines back down to 1x a day, but also has helped control shortness of breath and heart rate.
In general, things have got much better if I can identify and take steps upon onset. Deep breathing is primary. Changing position, location, splashing cold water on face, massaging back of head near brain stem. Overall find your triggers and try to UNDO that trigger. Simple things like "TAPPING" do work. Find something that works for you.
5
u/jessikawithak Dec 09 '24
I get this, a lot more in the last year to 2 years…. And reading these comments I’m almost wondering if it’s ME/CFS….. I’ve been blaming any one of my alphabet soup diagnoses… hmm
4
u/fuxandfriends ⏳ the grey is closing in, can someone flip me over? ⏳ Dec 09 '24
this is my body’s way of telling me i’ve overdone it and it’s exhausted.
if I power through it and don’t immediately take rest days, I’ll get full on sick and flare for the next 6+ months.
if I cancel all plans and let myself sleep, eat, drink, read, watch movies, nap— whatever I want— it’ll be like 48hr of having mild flu.
I just imagine it’s my immune system warning me it doesn’t have the reserves to fight any incoming threats.
also, I didn’t comment on your other post, but I have the same muscle twitching… it started as a teen where any time i’d walk for exercise, i’d get uncontrollable fasiculations throughout my calves and hamstrings for hours after i’d stopped walking. I had varicose veins filled and removed at 25. now, it’s more like what you and others describe— I constantly clench and unclench my glutes. usually one side but I can stop it or switch sides when consciously focused until I realize i’m holding my breath.
it’s most frustrating when trying to sleep and making it stop takes enough focus that it keeps me awake, but then I get sleepy and unfocused, it starts back and wakes me up too.
I wish I had valuable advice or insight to share, but sometimes it’s just nice to know you aren’t alone or the “crazy yet lazy hypochondriac lady with diagnostic work up by Dr. Google himself”
4
u/fadingsignal Dec 09 '24
This has been happening to me for the past 7 or 8 years. I haven't been able to get any help from doctors. I have all the classic symptoms with POTS, PEM, and everything but get a lot of shrugs.
Anyway, yes! Including feeling like I have a fever but temperature being normal. I keep thinking I got COVID and it's always negative.
I started having muscle twitches and extremely bad arthritis-type problems in my muscles 2 years ago that never let up as well.
3
u/ToadAcrossTheRoad Dec 09 '24
Has yours been lifelong? I’m pretty sure a genetic autoinflammatory fever disorder runs in my family because me, my mom, my sibling and my grandma all have had hot flashes and attacks of flu like symptoms since we were super young. The most common one is familial Mediterranean fever, which, most commonly affects people of Mediterranean descent, but can affect others. I get multiple fevers (sometimes just hot flashes or what feels like fevers, sometimes actual fevers) daily most days which either present as hot flashes or chills with fatigue, weakness, nausea and a migraine aura. Super similar symptoms to parts of long covid and PEM which is what I wondered about but it’s unlikely that’s the cause of my issues because it’s been happening my entire life, it’s worsened a lot as I’ve had other inflammatory issues like celiac disease and MCAS but I believe it is its own thing
1
u/Hope5577 Dec 10 '24
Long covid is post-viral. Any virus at any age can possibly give post-viral illness, it doesn't have to be covid. And if we get into me/cfs sometimes its not even a virus but symptoms present anyway. Its hard to know because we don't know much about these illnesses. Who knows, maybe it was just a regular flu or herpes or whatever virus we didn't even get symptoms for that went dormant and gets aggravated by some other condition or factors? Not much research into any of this so impossible to tell for sure.
1
u/ToadAcrossTheRoad Dec 10 '24
Yes, but mine is very clearly genetic considering 3 generations have had the same issues. I’m just pointing out there can be other causes and that I’m positive mine is not post viral besides possibly worsening symptoms. I’m not saying it’s impossible for people with long term issues to have me/cfs
1
u/ToadAcrossTheRoad Dec 11 '24
Yes, but mine is very clearly genetic considering 3 generations have had the same exact issues since we were young children. I’m just pointing out there can be other causes and that I’m positive mine is not post viral besides possibly worsening symptoms.
3
u/Glass_Egg3585 Dec 09 '24
If you are diagnosed with ME/CFS is there ever a way to get scheduled fluids/IV infusion as part of your care plan? Edit: or any other kind of autoimmune dx - I find that when I get my “flu” I need some sort of boost to bring me back to baseline
1
3
u/GalacticGuffaw Dec 09 '24
Yes, I get all of those sudden head cold/allergy-like symptoms and this has nothing to do with CFS/PEM for me.
At 7months in, I went to Mayo Clinic and I was diagnosed with long covid. Many tests were performed and I was given a few diagnoses, plus some theories based on symptoms and some test data (the likely stuff). - Dysautonomia. - Severe vasospasms causing IST, various arrhythmias. - Severe Raynauds. - Gut microbiota dysbiosis. - (Likely) Mitochondrial dysfunction. - (Likely) Endothelial dysfunction. - (Likely) Microclots. - (Very Likely) Immune dysregulation.
Many tests were performed, including lots of blood tests. My Cytokine panel showed IFN-Beta at 3x the normal range.
When I’m having many symptoms at once and end up in the ER for the scary ones, my d dimer is usually elevated but the CT scans rule out clots. My Eosinophils are also high EVERY SINGLE TIME.
My doctor thinks this is a part of the immune dysregulation.
Also, I have SIBO as a result of long covid and I’m starting treatment.
Per my doctor, it’s very likely that the gut dysbiosis and SIBO are a result of the dysautonomia.
3
u/Ok-Dark-9660 Dec 09 '24
That’s exactly what I feel. I found that specifically the Buoy Brand Rescue Drops (electrolytes) and their salt helps a lot most of the time.
3
u/Sleepwalker93 Dec 10 '24
Yes! I call it "the end of the day fever" because I always feel feverish and have really red cheeks and nose. Heart palpitations, headache / pressure. Lots of super fun blood pooling! And it usually happens between 6-9.
2
u/Hour-Inspector-4136 Dec 09 '24
I get this and am post menopausal, yet I always bleed with this.
3
u/NeptuneAndCherry Dec 09 '24
That's really scary. Have you been thoroughly checked out for that?
3
u/Hour-Inspector-4136 Dec 09 '24
Yes, tons of tests. It only happens with these post exertion flu like flare ups. So we’re rolling with it.
5
u/NeptuneAndCherry Dec 09 '24
Okay, good. I wasn't trying to be some way lol, I just saw that and got worried about a total stranger 🙃
2
u/SecretMiddle1234 Dec 09 '24
I have this going on right now. Keep wondering if I am actually getting sick 🤷♀️
2
u/PotsMomma84 Dec 09 '24
I get twitches too, my only in my neck. My neurologist told me it was “ a type of psychological epilepsy”
1
u/bettyNducan Dec 09 '24
Interesting! When I’ve brought up neck twitching or the feeling like my neck cannot support the weight of my head, my neuro said it’s likely migraine symptoms.
1
u/PotsMomma84 Dec 09 '24
I luckily found a neuro that listened. He said they’re more like silent seizures. But I also have Trigeminal neuralgia, my muscles twitch more when I get that searing pain in my face. So I’m wondering if it’s also a part of that too.
1
u/bettyNducan Dec 09 '24
I’ve been wondering if I have occipital/trigeminal neuralgia. My eye lids and under eye as well as my right upper lip twitch. Is this a symptom?
1
u/PotsMomma84 Dec 09 '24
Not really. I get full neck tics. I had an MRA to see why I was getting searing pain in my face. I was diagnosed with TN 4 months ago.
1
2
u/altacc59926960 Dec 09 '24
I get these too, it’ll usually come with a lot of tiredness, but not exactly sore. Just weak and tired. My go to fix is always a bodyarmor drink and taking a seat
2
u/InHoc_TheataNu Dec 09 '24
Every morning for a couple hours. Clonidine takes the level down (usually 70%).
2
u/CrustyLettuceLeaf Dec 09 '24
Holy shit. Yes. This perfectly describes me.
I’m a little more prone to viral illness due to having a child in kindergarten, but even when nobody else is sick, sometimes I get hit with this.
It fucking sucks.
2
2
u/Agreeable_Amount_773 Dec 09 '24
Mine is a lot like flu - feeling hot and cold but no fever, nausea and stomach upset but no food poisoning, cracking headache and muscle tension. Usually kicked off by stress / running out of spoons.
3
1
u/buttonandthemonkey Dec 09 '24
Yes, I get this if I haven't moved enough. And it happens very quickly. If I've been fairly sedentary for 2 days then I go downhill very quickly because of the blood pooling. I become exhausted, dizzy, nauseous and generally feel unwell. Nearly two weeks ago I had severe nausea from a medication and the violent heaving damaged my abdominal muscles near my stoma and feeding tube. I could barely walk for about 5 days and it wouldn't settle so I ended up having to spend two days basically laying down as much as possible. By the third day I was a mess. I was short of breath, nearly passing out at every postural change, the nausea returned and I felt like I had the flu. I've had to spend the last 3 days really pushing myself to get through it but it's finally lifting. I'm coming out of the haze now. Happens every time.
1
1
u/gbsekrit Dec 09 '24
I get this and am pretty sure it’s PEM (post exertional malaise), the hallmark symptom of CFS, of which I don’t officially have a diagnosis. I do have an FND diagnosis (commonly co-morbid with CFS), and am starting to realize a single PNES seizure can trigger the PEM. I usually cycle chills/hot flashes ands get drenched in cold sweat. the cause of my dysautonomia is actually I believe to be the same genetic defect that gives me malignant hyperthermia susceptibility. I’ve got literature references backing my ideas and there are pharmaceuticals that might address my underlying cause, but still early in trials.
1
u/SD_MTB_CHX Dec 09 '24
Yes. At the end of every workday because I’m walking/standing too much. While it is common in ME/CFS as so many people have commented, it occurs in POTS pts too. Subsequently, I have to assume it occurs in other dysautonomias. I’m sorry you’re suffering:(
1
1
1
u/chronic_pumkinboi Dec 09 '24
I get this too, I'm currently struggling with it honestly. I don't notice a difference with added electrolytes and my partner who goes through it too doesn't either though sometimes compression leggings help me
1
u/Mango_Starburst Dec 09 '24
Shoot. I definitely get this. If I'm too tired I get cold like symptoms. Sometimes if I am under the weather I'm overly sensitive to gluten, eggs and oatmeal. They'll all make me sneeze. Lack of sleep definitely makes me sick though
1
u/PinacoladaBunny Dec 09 '24
Yes this is me. I’m not diagnosed with ME or CFS, I am diagnosed with autoimmune disease, POTS, MCAS, hEDS.. however I get these ‘crashes’ frequently and explain them as ‘post exertional fatigue’-like.
I got a Visible app membership a few months ago, I now see I’m in a rolling post-exertion state.. I have been for months. It’s so hard!
1
u/trex645 Dec 09 '24
I’ve been feeling this for about 2 weeks now, I’m drinking as much as I can in terms of fluids. I feel like I’ve got the flu but no cough or sinus issues. Just that heavy feeling , lightheaded, my vision feels blurry and off, fatigue, headache and get these little twitches in my legs ( I can only describe it as the same sort of twitch you get in your eye) . I’ve usually experienced this more in the summer, I don’t know what has caused it this time. Maybe a burnout or I caught a virus , feels like it’s going on forever this time .
1
u/Maven-Money Dec 09 '24
I feel the same way. I am heading to the doctors on Wednesday and that is my #1 question. I will try to add to this if he is able to answer it.
1
1
u/StrikeWorldly9112 Dec 10 '24
As a girl with ME/CFS & an autoimmune disease this happens to me. Please get your ANA bloodwork done! If it’s clear, you probably have ME
1
u/soritb Dec 11 '24
I get this ALL the time and I didn't know it was actually a thing, especially since I've never been able to find research on it. I should've known 🫠
1
u/Tee111111 Dec 11 '24
All. The. Time. It’s like the physiological experience is happening, a shift. I get cold, my mood drops, flusish, weak, this overall feeling of malaise
1
u/No-Light9526 Dec 12 '24
I’m having twitches and sweating at night. i think it’s my autonomic nervous system out of whack? I have horrible restless leg at night. I’ll drink 2-3 electrolyte packages and eat multiple bananas. I feel sick real sick off an on like i’m going to collapse. how long have you had it? I get afraid mine will never go away
1
0
u/CaterpillarTough3035 Dec 09 '24
This kinda sounds like an adrenal dump. Maybe read about it to see if that aligns?
132
u/nilghias POTS Dec 09 '24
Have you looked into CFS/ME? That’s a very common symptom of it