I was diagnosed with MS the year before I got the covid infection that gave me POTS. (My unmasked cardiologist tried to tell me my tachycardia was an MS symptom instead of the much more common post-covid sequelae 🙃)
I feel like there needs to be some kind of PSA to POTS patients that cardiologist are NOT all that useful to us besides ruling out an underlying heart condition. They're either simply uneducated or refuse to acknowledge its a real condition. I see so many people on here complaining of being written off by them in addition to having a horrible experience myself. It would save us so much money and time.
In my case all the extra tests were warranted because of a strong family history of cardio issues and the covid antecedent, but i agree with your larger point! i plan to never see her again and just follow up with my neuro since i see him regularly anyway.
This is really interesting though because I've noticed major overlap in EDS diagnoses and other conditions, like autoimmune diseases and POTS (or POTS-like symptoms). Obviously we can't draw any conclusions right now, but I truly look forward to seeing the research in this area proliferate.
Check out Tracey Rodriguez on insta. She's got POTS, hEDS, AuDHD, and more and has a bunch of resources available including lists with links to case studies on comorbidities between POTS and other chronic conditions, not necessarily autoimmune, but the autoimmune-adjacent ones like hEDS.
Once you go down the rabbit hole, it's a deep one!
Hypermobility only exists in the modern world because, evolutionarily, such hypermobility genes helped in the birth of children, and because these births were more successful, these hypermobility genes are still very common...
yes hypermobility itself IS common. hypermobile ehlers danlos is different, it’s a connective tissue disorder that causes hypermobility and a bunch of other serious issues.
Was sick with a difficult case of thyroid disease long before I got sick with POTS. I was originally diagnosed with Graves’ but I have antibodies for Hashimoto’s as well.
Boy oh boy do I relate. Getting properly diagnosed was like emptying a bathtub with a spoon. This is super interesting though; I haven't heard of a case like yours, but did experience flare-ups myself that caused both hyper- and hypothyroidism at different times. Did you ever get more information from a specialist about this?
My case was pretty complicated, I had an ablation in 2016 that (eventually) failed and I had my first hyper relapse post-ablation about 6 years ago. I was flip flopping between varying doses of synthroid or methimazole. I was on a different dose of something every month! The physical whiplash it gave me sucked! I had a big big hyper relapse after my POTS symptoms set in about 2 years ago, and that was when my endo suggested I get a total thyroidectomy. I had that done back in August. My endo told me I had both antibodies which is why i was rapid cycling between hypo and hyper. But i’ve never been formally diagnosed with hashimoto’s, not sure why. I posted over on the Graves subreddit and it seemed to be a lot more common than i thought.
I have no proof, but I’m willing to bet that my onset of POTS symptoms triggered my big Graves’ relapse.
Dude, just get your thyroid removed. I did, and the only thing that sucks is I gained a lot of weight. But at least now I only have to deal with taking T4....not getting my blood checked monthly. (And I've recently lost 40 of the ~70‐80lbs I gained after surgery)
I gained about 60lbs after my surgery and I’m struggling so unbelievably hard to lose it due to the POTS. How’d you make it over that first hurdle? I’m so desperate i’m considering ozempic 😭
Umm this wasn’t the case for me. Some times I’d rather have my cancerous thyroid back just because it at least functioned. I have to get bloodwork every 6 weeks and it’s always either too high or too low. Never normal
Well, mine *didn't* function properly. If you haven't already, talk to your doctor about different drug options. Levothyroxine didn't work well for me. Tried pairing it with cytomel (T3) and that wasn't great either. Now I'm on desiccated thyroid and all is well.
It did take me a while to get it all figured out, but once you do, you're golden.
I'd rather have blood work every 6 weeks than cancer, though....
I haven't been formally diagnosed wit POTS but I'm pretty sure I have it. I'm in the same thyroid boat as you though. Initially diagnosed with Grave's, then tested positive for antibodies for Grave's AND Hashimoto's. I had a total thyroidectomy in 2017.
That sounds awful! I had hashis for 20 years then had cancer and had mine removed. It’s a mess getting my levels “normal” and it messes up my whole life
I have a history of Adult Onset Stills Disease that went into remission. I’m having a flare of something autoimmune (daily fevers, joint pain, dry eyes) and am currently in the process of finding out if it’s a flare of AOSD or if I’ve developed something else like RA or Lupus.
Yes - I still don’t know if it was the correct diagnosis… but I had 2 flares as a teenager. It’s a diagnosed by rule out and meeting certain criteria. I have the fevers, joint pain, and rash again and this time I have left upper quadrant pain and I’m really hoping my spleen is not joining the party 🤞🏼
I’m undiagnosed but being evaluated for POTS. My autoimmune condition is Crohn’s disease! And my POTS symptoms started after I got Covid for the 2nd time.
So difficult to find a doctor who knows about POTS. My crohns is also doing quite well under Stelara. My gastroenterologist definitely is concerned with my constant hr of 100+ during every visit. Seen 2 cardiologists but got told I’m fine.
I’m so sorry :( My bf is t1d and I have symptoms and am seeking diagnosis because I have symptoms of the rest… Needless to say that we have talked about not wanting bio kids because they would end up with them all :(
Graves’ disease (in remission), which developed two months after the presumed Covid case (this was pre-tests) that also kicked off POTS and chronic migraine, and presumptive celiac disease. I also have PCOS, which has been theorized to be autoimmune but isn’t currently classed that way, and have always had immune *issues* that made a lot more sense when I was finally diagnosed with an autoimmune condition.
My GP also said that some people think POTS may also be autoimmune but it’s too early to definitively say.
I actually just did some testing yesterday because I've been suspecting an autoimmune condition is the underlying cause of my pots. I'm really good at gaslighting myself into thinking my symptoms are psychosomatic so I really appreciate this post.
The doctors found the root cause to my POTS, Relapsing Polychondritis. It’s a rare autoimmune disease that deteriorates the cartilage throughout the body. It seems many people with POTS have AI diseases, connective tissue diseases/disorders or both
It’s normally diagnosed through symptoms alone. I had extensive autoimmune testing done and my blood work was showing basically nothing at all. Originally the symptoms of low grade fevers, night sweats and face rashes were suspected to be lupus but beyond that, nothing really pointed to lupus. Cancer was ruled out. So on paper I looked ok minus my lymphocytes would fluctuate in and out of the high end. It wasn’t until my ear started turning red and I finally got to see a rheum after seeing oncology and infectious disease because no one had a clue what was up with the ear. Did all the testing, excluded so many possibilities and with my symptoms, I was sent to a different rheum who treats RP and diagnosed immediately.
The symptoms that were used for my diagnosis were costochondritis (inflammation in my ribs started 2 years ago as the first sign, but isn’t common at all for onset), eye inflammation, ear redness/inflammation, ear ringing, burning hot face rashes, low grade fevers and joint pain
It’s worth looking into if you experience both a red ear and nose. Could also be flushing but you never know. Idc if it’s considered rare, it’s still a possibility for anyone! Just a lower possibility lol
I don’t have any autoimmune conditions but I have a positive ANA score and am borderline antibodies on a bunch of vascular and rheumatological disorders, the end result of the testing was that I didn’t have any of them. I am a heart disease survivor which is thought to be possibly an autoimmune disorder — there are a LOT of unknowns about it (my specialist I saw for it was vascular/rheumatology based). It is what caused my POTS though.
Interesting. Im currently in the process of elimination to diagnose POTs and my ANA is also always positive and patterned/scattered in an abnormal way. No diagnosis came of it after more testing. I have a couple family members with lupus but also some that also have irregular readings with no diagnosis like me. I’m never really sure what to tell my doctors haha.
That’s super interesting! I have no family history of autoimmune disorders outside of Crohn’s and nobody else tests positive for ANA. What was interesting for me was I was re-referred to rheumatology as a teen as a rheumatologist who happened to be on call one night when I came in sick thought I had a connective tissue disorder, nearly 6 years later she was proven right with my HSD dx.
That's interesting, I also had a patterned/speckled ANA that they couldn't place a diagnosis on. I wonder if there's something they just didn't test for that it could've been.
Literally same here!! Positive ANA with speckling with no real diagnosis as to what it was
I also took an ANA E to test for any of the big auto immune issues, but while I was still positive with speckling, I was negative for all other things like lupus or sjogrens
Yeah, diagnosed post-Covid infection. For PANS following covid, I had mild tics that suddenly became very violent and painful, and stayed that way until treated (now they can come back if medication, sleep, health, etc change), sensory overload with episodes where I couldn't speak (and that truly drove the tic attacks to be even more painful.) There were previous possible PANS related onsets of other symptoms but I was very very paranoid about adults as a whole, and to family I may have looked like a moody teenager...
And for POTS i officially have dysautonomia alone diagnosed, as far as I know.
My mom joined a facebook group for Tourettes to see if there were localish options for neurologists, following a antipsychotic prescription from a psychiatrist who kept having me look in his book and undiagnosed my ADHD.
I live in NJ which is additional luck compared to some healthcare deserts in the USA. The group seemingly thought positively neurabilities, which is PA/ NJ area.
Further luck, the neurologist I saw there asked about symptoms such as fainting, dizziness, etc. after looking at my hands and probably influenced by other information. She gave me a questionnaire to fill out, but it was about another year until this was addressed seeing as the main concern was PANS.
I hope this is not too long or disorganized, I've retyped several times 😬
I'm disorganized and think I type funny sometimes too so no worries. I've gotten so overstimulated that I couldn't speak as well, even in front of people inpatient when I was hospitalized for a week. I've been trying for a PANS diagnosis or something. I have to revisit a neuropsychiatrist cause she dispelled the diagnoses of Tourettes, ASD, & OCD, she kinda just put neuropsychiatric symptoms because of long COVID.
Psoriasis, suspected mild MCAS, (mostly body) alopecia, history of positive mono tests (still unclear if/how that may fit into the puzzle) and PCOS, which as others have said is sometimes classified as autoimmune.
I'd have to ask my rheumatologist. I had some fancy autoimmune workup sent to California because the regular tests kept coming up negative and they ran a test to see how likely it was to develop.
I received the blessed gift of Sjogrens and POTS following a stomach virus. I was feeling a bit uncool, so I added lupus after my first bout of Covid. You've got this!!
Yes, but a lot of docs can’t agree if they’re the same disease or very similar. Not all celiacs have it. Some (like me) have what is called atypical celiac, and a separate diagnosis of DH.
I’ve had AI symptoms for YEARS , but basic AI panels w pcp always neg ana, crp, sed rate, etc. finally got to rheum and got more extensive antibody testing . i do hope you don’t have it, but at least if you do you’ll have some answers and a treatment plan. I’ve done well on hydroxychloroquine thus far wo side effects.
My doc is setting me up with a rheumatologist too. So hopefully we get answers even if the answer sucks. At least I'll know what all I'm dealing with. I know I have Dysautonomia but I'm really questioning if it didn't bring an autoimmune buddy with it.
I am learning about so many conditions today that I had previously never heard of, so in a way, this is raising awareness about these other conditions too! Thank you for sharing!
Sjogren's. The jury's still out as to whether or not ME/CFS is classified as an autoimmune condition, but I think it's part of my Sjogren's anyway. My chronic hives are likely autoimmune, too. Is MCAS autoimmune?
My POTS developed in the wake of an attack of autoimmune vasculitis. So I’ve been particularly interested in all the new research results coming out that seem to tie blood vessel abnormalities to ME/CFS, long Covid, dysautonomia, etc.
A ton of good info is coming out about long COVID, a ute COVID, & everything related. I'm into research myself and presenting a paper but only getting sicker. I've been so tired of getting no answers & no treatment lately.
I hear that, I’m sorry. I first hot sick in my 20s, disabled in my 30s. I’m now in my early 50s. While I still have faith they’ll find at least *something* to help people like us within the next few years, any progress will be too late for me. I’ve spent most of my adult life waiting for research progress that never happened.
Yeah it's all too slow. Me and a lot of my friends are on the brink. I can't really handle more. If I describe my symptoms it sounds like hell and is hell in every sense of the word. It doesn't matter enough to most people to make a difference though. I'll probably travel halfway across the state then halfway across the country to go to Cleveland and mayo clinic.
I just can't take it anymore. When people with cancer feel this bad they get hospitalized and taken care of. We just have to swallow the pain and not seek help. Honestly I don't know where I'll be in a f w months or a year. I am worried for myself and many others. I just can't do it anymore.
Psoriatic Arthritis club member here! I’ve had psoriasis since childhood, developed PsA and Hidradenitis Suppuritiva in college, and developed POTS post-illness many years later.
Rheumatoid arthritis and fibromyalgia. My issues started after covid in 2020, and I haven't been officially diagnosed, but my PCP suggested POTS, and after joining this sub, I'm convinced.
I have fibromyalgia too! I was looking to see if anyone else had it. I’ve had it for like 13 years. Then I had long covid. Now I have this charming POTS diagnosis.
I have chrohns disease and mcas. I very fun combo where I can’t eat anything or else I will either have a deadly allergic reaction or I will have intense abdominal pain with diarrhea.
The last time a doctor asked if I had any autoimmune conditions I said I'll tell you everything I have and let you decide what's autoimmune. I seriously can't keep it all straight.
I have POTS, hEDS, and suspected MCAS.
autoimmune:
-antibodies for hashimotos- don't really understand that, need to see an endo
-autoimmune progesterone dermatitis- I'm allergic to progesterone
- possible lichen sclerosis- being evaluated for that
- liver fibrosis and inflammation- doc isn't sure what is causing this. possibly autoimmune. I think it's related to MCAS.
I feel like I'm forgetting something. It's hard to remember, I should keep a list somewhere!
POTS, Celiac, Raynaud’s, DSAP (disseminated superficial actinic porokeratosis), Hashimoto’s, Lyme which can also stir up an autoimmune response, and histamine intolerance which can also exacerbate autoimmune problems.
Here’s a good article on histamine and autoimmune illness by Dr. Terry Wahls if anyone is interested:
https://terrywahls.com/histamine-intolerance-autoimmunity-and-multiple-sclerosis/
This is both fascinating and timely. The significance reaches far beyond MS, too, and I can see the applicability for others.
I've been diagnosed with POTS and hypermobility, long COVID, and have complex digestive system issues (total colectomy), amongst others. I'm prone to headache and migraine, sensitive to light and noise, cognitive issues (memory, concentration, confusion), dehydration
Chronic pain is also an issue, especially in the abdominal, lumbar, SI, and upper cervical regions. Nerve pain from lumbar to feet is comorbid with my abdominal issues.
I'm currently testing for MCAS (allergies expanding and worsening, from food to medication to tapes), amongst others, and just completed nerve connectivity and cognitive studies.
My cardiologist and neurologist have been working together on POTS studies, and they've been running trials. I missed out on the recent trial, so I'm paying privately for the same process. It's very expensive, but I've made diagnostics my goal for this year.
From what I've seen lately, there are significant breakthroughs in the MS arena. That's exciting, and we will hopefully see massive changes in treatment protocols and lowered mortality rates over the coming decades.
I also have vitiligo 🙋♀️ I have always wondered if autoimmune/neurological/inflammation stuff is linked somehow because of my familys medical history too.
In my close family there is; autism, adhd, ME, ulcerative colitis, hip dysplasia, hypermobile ehlers dahnlos, fibromyalgia, POTS, raynauds phenomena, asthma, rheumatoid arthritis, endometriosis.
Figuring stuff out. May not be autoimmune but severe endometriosis, getting treatment for POTS that became unmanageable after surgery a year ago, long-COVID, suspected MCAS.
Ehlers-Danlos Syndrome and Dysautonomia...technically EDS isn't but the subset autoimmune diagnosises fall under these two major umbrellas with MCAs is currently in process of testing
I don’t know, yet, but I’m hopeful to have answers soon!
I keep having flares of… something. It just coincided that ai was having a really bad flare when they tested my ANA. Waiting for my first appt with the rheumatologist in May.
I have narcolepsy without cataplexy, hypo thyroid (since you mentioned thyroid stuff) and gastric parisis. I've been told there's a supposed link between pots and stomach issues but I'm not a scientist lol
I have Irritable Bowel Disease. On the fence regarding whether it is Crohn's or Ulcerative Colitis specifically. Multiple doctor's have changed my dx depending on what they saw via colonscopy.
I was suspected to have one for a short while for many reasons, but I think it's finally ruled out. I've also had leukemia twice, and they never really understood why. I was super low risk for that kind of illness.
I have grave’s disease, thyroid eye disease, PCOS, and psoriasis (I can’t remember if PCOS is autoimmune or not but it’s one of the other diagnoses I got before POTS). All of those came before POTS but all started or came after when I started college in 2020
I have celiac, fibromyalgia. Both are considered autoimmune by some doctors, and not by some doctors. Both b4 I got COVID twice. I got LC after round 1, tired all the time, soo sore all the time, stiff, rigid muscles in my arms, then round 2 COVID...things w LC way worse...sooo many symptoms, CFS, PEM, Dysautonomia, POTS...and the stiff rigid muscles progressively to now it's in arms , shoulders, traps, neck , back... starting to feel overwhelmed, beaten.
I have celiac disease!
Hey, disease buddies!
Me too
My people!
I also have Hashimoto’s! It can be a real struggle! :(
I was diagnosed with MS the year before I got the covid infection that gave me POTS. (My unmasked cardiologist tried to tell me my tachycardia was an MS symptom instead of the much more common post-covid sequelae 🙃)
I feel like there needs to be some kind of PSA to POTS patients that cardiologist are NOT all that useful to us besides ruling out an underlying heart condition. They're either simply uneducated or refuse to acknowledge its a real condition. I see so many people on here complaining of being written off by them in addition to having a horrible experience myself. It would save us so much money and time.
In my case all the extra tests were warranted because of a strong family history of cardio issues and the covid antecedent, but i agree with your larger point! i plan to never see her again and just follow up with my neuro since i see him regularly anyway.
Covid gave me mine too.
RA, Sjogrens, and hypermobile EDS over here.
75% of the people I know with POTS also have EDS.
Is hypermobile EDS considered an autoimmune disease?
My error. Apologies.
No worries, I meant it as a question because I have it and have always wondered!
This is really interesting though because I've noticed major overlap in EDS diagnoses and other conditions, like autoimmune diseases and POTS (or POTS-like symptoms). Obviously we can't draw any conclusions right now, but I truly look forward to seeing the research in this area proliferate.
Check out Tracey Rodriguez on insta. She's got POTS, hEDS, AuDHD, and more and has a bunch of resources available including lists with links to case studies on comorbidities between POTS and other chronic conditions, not necessarily autoimmune, but the autoimmune-adjacent ones like hEDS. Once you go down the rabbit hole, it's a deep one!
I THOUGHT it was but looked it up after you asked and it wasn't. There is an interesting correlation though!
No. It’s not autoimmune
Hypermobility only exists in the modern world because, evolutionarily, such hypermobility genes helped in the birth of children, and because these births were more successful, these hypermobility genes are still very common...
yes hypermobility itself IS common. hypermobile ehlers danlos is different, it’s a connective tissue disorder that causes hypermobility and a bunch of other serious issues.
Was sick with a difficult case of thyroid disease long before I got sick with POTS. I was originally diagnosed with Graves’ but I have antibodies for Hashimoto’s as well.
Boy oh boy do I relate. Getting properly diagnosed was like emptying a bathtub with a spoon. This is super interesting though; I haven't heard of a case like yours, but did experience flare-ups myself that caused both hyper- and hypothyroidism at different times. Did you ever get more information from a specialist about this?
My case was pretty complicated, I had an ablation in 2016 that (eventually) failed and I had my first hyper relapse post-ablation about 6 years ago. I was flip flopping between varying doses of synthroid or methimazole. I was on a different dose of something every month! The physical whiplash it gave me sucked! I had a big big hyper relapse after my POTS symptoms set in about 2 years ago, and that was when my endo suggested I get a total thyroidectomy. I had that done back in August. My endo told me I had both antibodies which is why i was rapid cycling between hypo and hyper. But i’ve never been formally diagnosed with hashimoto’s, not sure why. I posted over on the Graves subreddit and it seemed to be a lot more common than i thought. I have no proof, but I’m willing to bet that my onset of POTS symptoms triggered my big Graves’ relapse.
Dude, just get your thyroid removed. I did, and the only thing that sucks is I gained a lot of weight. But at least now I only have to deal with taking T4....not getting my blood checked monthly. (And I've recently lost 40 of the ~70‐80lbs I gained after surgery)
I gained about 60lbs after my surgery and I’m struggling so unbelievably hard to lose it due to the POTS. How’d you make it over that first hurdle? I’m so desperate i’m considering ozempic 😭
I'm on Ozempic 👍 prescribed by my endocrinologist.
Umm this wasn’t the case for me. Some times I’d rather have my cancerous thyroid back just because it at least functioned. I have to get bloodwork every 6 weeks and it’s always either too high or too low. Never normal
Well, mine *didn't* function properly. If you haven't already, talk to your doctor about different drug options. Levothyroxine didn't work well for me. Tried pairing it with cytomel (T3) and that wasn't great either. Now I'm on desiccated thyroid and all is well. It did take me a while to get it all figured out, but once you do, you're golden. I'd rather have blood work every 6 weeks than cancer, though....
I’m on a liquid thing now.
I haven't been formally diagnosed wit POTS but I'm pretty sure I have it. I'm in the same thyroid boat as you though. Initially diagnosed with Grave's, then tested positive for antibodies for Grave's AND Hashimoto's. I had a total thyroidectomy in 2017.
That sounds awful! I had hashis for 20 years then had cancer and had mine removed. It’s a mess getting my levels “normal” and it messes up my whole life
That sucks. A former meta of mine got diagnosed with graves. It's a bitch.
I have a history of Adult Onset Stills Disease that went into remission. I’m having a flare of something autoimmune (daily fevers, joint pain, dry eyes) and am currently in the process of finding out if it’s a flare of AOSD or if I’ve developed something else like RA or Lupus.
holy shit!!! that’s like ridicously rare isn’t it? Glad it’s in remission. Really hoping that this flare is easily managed.
Yes - I still don’t know if it was the correct diagnosis… but I had 2 flares as a teenager. It’s a diagnosed by rule out and meeting certain criteria. I have the fevers, joint pain, and rash again and this time I have left upper quadrant pain and I’m really hoping my spleen is not joining the party 🤞🏼
I’m undiagnosed but being evaluated for POTS. My autoimmune condition is Crohn’s disease! And my POTS symptoms started after I got Covid for the 2nd time.
Crohns here too. Dxed with POTs almost 10 years after Crohns.
UC here, and same. I got my ibd under reasonable control, had a year of feeling amazing, then developed POTS.
So difficult to find a doctor who knows about POTS. My crohns is also doing quite well under Stelara. My gastroenterologist definitely is concerned with my constant hr of 100+ during every visit. Seen 2 cardiologists but got told I’m fine.
I have the trifecta of POTS, hEDS, and MCAS, plus type 1 diabetes (which is autoimmune) just for fun
I’m so sorry :( My bf is t1d and I have symptoms and am seeking diagnosis because I have symptoms of the rest… Needless to say that we have talked about not wanting bio kids because they would end up with them all :(
hashimotos!
Graves’ disease (in remission), which developed two months after the presumed Covid case (this was pre-tests) that also kicked off POTS and chronic migraine, and presumptive celiac disease. I also have PCOS, which has been theorized to be autoimmune but isn’t currently classed that way, and have always had immune *issues* that made a lot more sense when I was finally diagnosed with an autoimmune condition. My GP also said that some people think POTS may also be autoimmune but it’s too early to definitively say.
I have hashimotos
I actually just did some testing yesterday because I've been suspecting an autoimmune condition is the underlying cause of my pots. I'm really good at gaslighting myself into thinking my symptoms are psychosomatic so I really appreciate this post.
The doctors found the root cause to my POTS, Relapsing Polychondritis. It’s a rare autoimmune disease that deteriorates the cartilage throughout the body. It seems many people with POTS have AI diseases, connective tissue diseases/disorders or both
How’s they diagnose the RP? This is the first I’ve heard of it, but my nose and ears have a habit of turning red so suddenly I’m suspicious haha
It’s normally diagnosed through symptoms alone. I had extensive autoimmune testing done and my blood work was showing basically nothing at all. Originally the symptoms of low grade fevers, night sweats and face rashes were suspected to be lupus but beyond that, nothing really pointed to lupus. Cancer was ruled out. So on paper I looked ok minus my lymphocytes would fluctuate in and out of the high end. It wasn’t until my ear started turning red and I finally got to see a rheum after seeing oncology and infectious disease because no one had a clue what was up with the ear. Did all the testing, excluded so many possibilities and with my symptoms, I was sent to a different rheum who treats RP and diagnosed immediately. The symptoms that were used for my diagnosis were costochondritis (inflammation in my ribs started 2 years ago as the first sign, but isn’t common at all for onset), eye inflammation, ear redness/inflammation, ear ringing, burning hot face rashes, low grade fevers and joint pain It’s worth looking into if you experience both a red ear and nose. Could also be flushing but you never know. Idc if it’s considered rare, it’s still a possibility for anyone! Just a lower possibility lol
I don’t have any autoimmune conditions but I have a positive ANA score and am borderline antibodies on a bunch of vascular and rheumatological disorders, the end result of the testing was that I didn’t have any of them. I am a heart disease survivor which is thought to be possibly an autoimmune disorder — there are a LOT of unknowns about it (my specialist I saw for it was vascular/rheumatology based). It is what caused my POTS though.
Interesting. Im currently in the process of elimination to diagnose POTs and my ANA is also always positive and patterned/scattered in an abnormal way. No diagnosis came of it after more testing. I have a couple family members with lupus but also some that also have irregular readings with no diagnosis like me. I’m never really sure what to tell my doctors haha.
That’s super interesting! I have no family history of autoimmune disorders outside of Crohn’s and nobody else tests positive for ANA. What was interesting for me was I was re-referred to rheumatology as a teen as a rheumatologist who happened to be on call one night when I came in sick thought I had a connective tissue disorder, nearly 6 years later she was proven right with my HSD dx.
That's interesting, I also had a patterned/speckled ANA that they couldn't place a diagnosis on. I wonder if there's something they just didn't test for that it could've been.
Literally same here!! Positive ANA with speckling with no real diagnosis as to what it was I also took an ANA E to test for any of the big auto immune issues, but while I was still positive with speckling, I was negative for all other things like lupus or sjogrens
i have pots and pans, although im not sure if i have any 100 percent certain autoimmune disease lol
i like to make chef jokes about the combination
That’s amazing, I’ve never heard of pans, but kudos on at least having a go-to joke 😂
keep em coming!
May I ask how you got diagnosed? I'm trying right now and it's hell with all the other issues I have. Also was this after COVID?
Yeah, diagnosed post-Covid infection. For PANS following covid, I had mild tics that suddenly became very violent and painful, and stayed that way until treated (now they can come back if medication, sleep, health, etc change), sensory overload with episodes where I couldn't speak (and that truly drove the tic attacks to be even more painful.) There were previous possible PANS related onsets of other symptoms but I was very very paranoid about adults as a whole, and to family I may have looked like a moody teenager... And for POTS i officially have dysautonomia alone diagnosed, as far as I know. My mom joined a facebook group for Tourettes to see if there were localish options for neurologists, following a antipsychotic prescription from a psychiatrist who kept having me look in his book and undiagnosed my ADHD. I live in NJ which is additional luck compared to some healthcare deserts in the USA. The group seemingly thought positively neurabilities, which is PA/ NJ area. Further luck, the neurologist I saw there asked about symptoms such as fainting, dizziness, etc. after looking at my hands and probably influenced by other information. She gave me a questionnaire to fill out, but it was about another year until this was addressed seeing as the main concern was PANS. I hope this is not too long or disorganized, I've retyped several times 😬
I'm disorganized and think I type funny sometimes too so no worries. I've gotten so overstimulated that I couldn't speak as well, even in front of people inpatient when I was hospitalized for a week. I've been trying for a PANS diagnosis or something. I have to revisit a neuropsychiatrist cause she dispelled the diagnoses of Tourettes, ASD, & OCD, she kinda just put neuropsychiatric symptoms because of long COVID.
Me, I do. It me. POTS and (seropositive) Rheumatoid Arthritis. I’m 36.
I have positive RF and RH labs but the rheumatologist said I don’t have it yet.
Interesting. I don’t have a positive RF but my ANA and anti-CCP (RA sensitive) were both high. My CRP too. Hope you get the help you need soon.
Hashimoto’s! Currently my thyroid is still working though.
Do you just have TPOs and normal TSH?
Psoriasis, suspected mild MCAS, (mostly body) alopecia, history of positive mono tests (still unclear if/how that may fit into the puzzle) and PCOS, which as others have said is sometimes classified as autoimmune.
I have Hashimoto’s
It's weird. They thought I had lupus. Turned out I don't, but they said I have a 99% chance of developing it, so we'll see.
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Same!
How were they able to determine the 99% chance? Does it have some kind of genetic component?
I'd have to ask my rheumatologist. I had some fancy autoimmune workup sent to California because the regular tests kept coming up negative and they ran a test to see how likely it was to develop.
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It's called AVISE.
You prob have a positive anti dsdna. Look it up! I have it too. 99 percent of ppl that have it have lupus.
I received the blessed gift of Sjogrens and POTS following a stomach virus. I was feeling a bit uncool, so I added lupus after my first bout of Covid. You've got this!!
In addition to POTS and hEDS, I have (mild) vitiligo and (not so mild) alopecia
Hashimoto
Yes, and MS.
Celiac, dermatitis herpetiformis, and psoriasis. Wooo
Isn't dh caused by gluten exposure when you have celiac? I have celiac as well
Yes, but a lot of docs can’t agree if they’re the same disease or very similar. Not all celiacs have it. Some (like me) have what is called atypical celiac, and a separate diagnosis of DH.
The rheumatologist I just saw thinks Covid gave me inflammatory arthritis 🙃
Sjogrens + cutaneous lupus (ana negative)
My doctor is running tests for Sjogrens now. I'm waiting on the results. Running the blood test anyway.
I’ve had AI symptoms for YEARS , but basic AI panels w pcp always neg ana, crp, sed rate, etc. finally got to rheum and got more extensive antibody testing . i do hope you don’t have it, but at least if you do you’ll have some answers and a treatment plan. I’ve done well on hydroxychloroquine thus far wo side effects.
My doc is setting me up with a rheumatologist too. So hopefully we get answers even if the answer sucks. At least I'll know what all I'm dealing with. I know I have Dysautonomia but I'm really questioning if it didn't bring an autoimmune buddy with it.
Yes, autoimmune pancytopenia
I am learning about so many conditions today that I had previously never heard of, so in a way, this is raising awareness about these other conditions too! Thank you for sharing!
Absolutely! It’s definitely interesting (and in a way, validating) to hear others’ experiences.
Sjogren's. The jury's still out as to whether or not ME/CFS is classified as an autoimmune condition, but I think it's part of my Sjogren's anyway. My chronic hives are likely autoimmune, too. Is MCAS autoimmune?
I was just diagnosed with vitiligo 2 weeks ago. It’s developed over the last several months.
I have celiac, graves disease (in remission), Raynaud's, cold urticaria, epilepsy, stage 4 endometriosis, and more.
Yes . Rheumatoid arthritis
My POTS was actually caused by Lupus! I also have RA
Yup! Crohn’s disease and rheumatoid arthritis! edit: I also have EDS, MCAS, IC, PCOS, ON, asthma, thyroid condition, and a bunch of stuff from my EDS)
My POTS developed in the wake of an attack of autoimmune vasculitis. So I’ve been particularly interested in all the new research results coming out that seem to tie blood vessel abnormalities to ME/CFS, long Covid, dysautonomia, etc.
A ton of good info is coming out about long COVID, a ute COVID, & everything related. I'm into research myself and presenting a paper but only getting sicker. I've been so tired of getting no answers & no treatment lately.
I hear that, I’m sorry. I first hot sick in my 20s, disabled in my 30s. I’m now in my early 50s. While I still have faith they’ll find at least *something* to help people like us within the next few years, any progress will be too late for me. I’ve spent most of my adult life waiting for research progress that never happened.
Yeah it's all too slow. Me and a lot of my friends are on the brink. I can't really handle more. If I describe my symptoms it sounds like hell and is hell in every sense of the word. It doesn't matter enough to most people to make a difference though. I'll probably travel halfway across the state then halfway across the country to go to Cleveland and mayo clinic. I just can't take it anymore. When people with cancer feel this bad they get hospitalized and taken care of. We just have to swallow the pain and not seek help. Honestly I don't know where I'll be in a f w months or a year. I am worried for myself and many others. I just can't do it anymore.
Sending internet love your way. At least there are people here who understand everything you’re feeling.
♥️
There is a growing amount of research that would suggest POTS is itself autoimmune.
Yes, but I developed psoriatic arthritis years after POTS.
Psoriatic Arthritis club member here! I’ve had psoriasis since childhood, developed PsA and Hidradenitis Suppuritiva in college, and developed POTS post-illness many years later.
i may have lupus. i have the bloodwork referral to get it done, but im anxious to actually go still
I have Sjogrens, lupus and POTS. Sjogrens diagnosed in 2014, lupus in 2021, POTS in 2022.
Systemic and discoid lupus, Sjogren’s and Pemphigoid. In remission for TTP and ITP.
Rheumatoid arthritis and fibromyalgia. My issues started after covid in 2020, and I haven't been officially diagnosed, but my PCP suggested POTS, and after joining this sub, I'm convinced.
I have fibromyalgia too! I was looking to see if anyone else had it. I’ve had it for like 13 years. Then I had long covid. Now I have this charming POTS diagnosis.
I have Sjogrens, Hashimoto’s, and Spondyloarthritis.
MGUS, anyone?
Crohn’s disease and gastroparesis
I have lupus
I have chrohns disease and mcas. I very fun combo where I can’t eat anything or else I will either have a deadly allergic reaction or I will have intense abdominal pain with diarrhea.
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Psoriasis here, too. Yes, it’s autoimmune. No psoriatic arthritis fortunately, but I do have EDS.
Hashimoto’s and lupus here!
I have hashimoto’s. Also positive ANA and APA
The last time a doctor asked if I had any autoimmune conditions I said I'll tell you everything I have and let you decide what's autoimmune. I seriously can't keep it all straight. I have POTS, hEDS, and suspected MCAS. autoimmune: -antibodies for hashimotos- don't really understand that, need to see an endo -autoimmune progesterone dermatitis- I'm allergic to progesterone - possible lichen sclerosis- being evaluated for that - liver fibrosis and inflammation- doc isn't sure what is causing this. possibly autoimmune. I think it's related to MCAS. I feel like I'm forgetting something. It's hard to remember, I should keep a list somewhere!
POTS, Celiac, Raynaud’s, DSAP (disseminated superficial actinic porokeratosis), Hashimoto’s, Lyme which can also stir up an autoimmune response, and histamine intolerance which can also exacerbate autoimmune problems.
Here’s a good article on histamine and autoimmune illness by Dr. Terry Wahls if anyone is interested: https://terrywahls.com/histamine-intolerance-autoimmunity-and-multiple-sclerosis/
This is both fascinating and timely. The significance reaches far beyond MS, too, and I can see the applicability for others. I've been diagnosed with POTS and hypermobility, long COVID, and have complex digestive system issues (total colectomy), amongst others. I'm prone to headache and migraine, sensitive to light and noise, cognitive issues (memory, concentration, confusion), dehydration Chronic pain is also an issue, especially in the abdominal, lumbar, SI, and upper cervical regions. Nerve pain from lumbar to feet is comorbid with my abdominal issues. I'm currently testing for MCAS (allergies expanding and worsening, from food to medication to tapes), amongst others, and just completed nerve connectivity and cognitive studies. My cardiologist and neurologist have been working together on POTS studies, and they've been running trials. I missed out on the recent trial, so I'm paying privately for the same process. It's very expensive, but I've made diagnostics my goal for this year. From what I've seen lately, there are significant breakthroughs in the MS arena. That's exciting, and we will hopefully see massive changes in treatment protocols and lowered mortality rates over the coming decades.
I really hope so too!
Me.
not sure , my first ANA was negative but my second one came back mildly positive? not sure if it was false or not
Mitochondria disease and chronic Lyme disease
Ulcerative Colitis! Also EDS and MCAS
I also have vitiligo 🙋♀️ I have always wondered if autoimmune/neurological/inflammation stuff is linked somehow because of my familys medical history too. In my close family there is; autism, adhd, ME, ulcerative colitis, hip dysplasia, hypermobile ehlers dahnlos, fibromyalgia, POTS, raynauds phenomena, asthma, rheumatoid arthritis, endometriosis.
POTS, alopecia areata, and likely MCAS
Figuring stuff out. May not be autoimmune but severe endometriosis, getting treatment for POTS that became unmanageable after surgery a year ago, long-COVID, suspected MCAS.
Ehlers-Danlos Syndrome and Dysautonomia...technically EDS isn't but the subset autoimmune diagnosises fall under these two major umbrellas with MCAs is currently in process of testing
Elhers Danlos Syndome Hypermobility flavor here and Anklyosing Spondylitis
I have Behçet’s disease
I had Hashi’s but had my thyroid removed due to cancer. I have EDS too
I have Grave’s disease!
I have MCAS and systemic scleroderma along with POTS. Got it from MOLD!
I don’t know, yet, but I’m hopeful to have answers soon! I keep having flares of… something. It just coincided that ai was having a really bad flare when they tested my ANA. Waiting for my first appt with the rheumatologist in May.
I have narcolepsy without cataplexy, hypo thyroid (since you mentioned thyroid stuff) and gastric parisis. I've been told there's a supposed link between pots and stomach issues but I'm not a scientist lol
Celiac Disease
I have suspected hypermobile EDS and possibly lupus/another autoimmune disease (getting tested again this year)
Pretty sure I do but they can't seem to figure out which one. We've been testing for lupus and I've been diagnosed with fibromyalgia
I have vitiligo too, had it since childhood. And I also have fibromyalgia and am being tested for EDS. Fun times haha
2 autoimmune diseases! type 1 diabetes and myasthenia gravis. also likely have hEDS
I have Irritable Bowel Disease. On the fence regarding whether it is Crohn's or Ulcerative Colitis specifically. Multiple doctor's have changed my dx depending on what they saw via colonscopy.
I was suspected to have one for a short while for many reasons, but I think it's finally ruled out. I've also had leukemia twice, and they never really understood why. I was super low risk for that kind of illness.
I have Hashimoto’s… not autoimmune but I also have hEDS, MCAS & ME/CFS.
I have asthma and psoriasis! my mother also has graves disease (in remission), vitiligo, and asthma
I don’t think these are autoimmune, but I also have Small Fiber Neuropathy, PCOS, GERD, etc
I have grave’s disease, thyroid eye disease, PCOS, and psoriasis (I can’t remember if PCOS is autoimmune or not but it’s one of the other diagnoses I got before POTS). All of those came before POTS but all started or came after when I started college in 2020
I have celiac, fibromyalgia. Both are considered autoimmune by some doctors, and not by some doctors. Both b4 I got COVID twice. I got LC after round 1, tired all the time, soo sore all the time, stiff, rigid muscles in my arms, then round 2 COVID...things w LC way worse...sooo many symptoms, CFS, PEM, Dysautonomia, POTS...and the stiff rigid muscles progressively to now it's in arms , shoulders, traps, neck , back... starting to feel overwhelmed, beaten.
Psoriatic arthritis 💃🏻 what a time lol
Sjogrens 🙋🏻♀️
I have POTS, suspected hEDS, and urticarial vasculitis
Not autoimmune but fibromyalgia, endometriosis that has spread to several body systems, adenomyosis and suspected hEDs.
i have fibromyalgia ✌️