How did you feel before your diagnosis?

Hi. I’ve been dealing with autoimmune disease for 26 years…I had a viral illness when I was 18 (mono) and then got really sick forever (it triggered my autoimmune disease). I have chronic fatigue syndrome and fibromyalgia. I also have premature ovarian insufficiency which is autoimmune. I’ve had times in life when it would get better and then it would come back (I’d have a relapse). Flares or relapses last different for everyone but if I could suggest something - right away to feel better, cut out gluten, dairy, soy, eggs, and sugar. I know that sounds NUTS but, it will help you in a week to reduce your symptoms. Look up autoimmune paleo diet or recipes. I hope you get diagnosed soon and on the right meds. Also, functional medicine and acupuncture help me a ton. Sometimes there’s things that Western medicine doesn’t understand that Eastern medicine can help with. ❤️

@Jill thank you! I really wish I knew what triggered things for me (I've felt terrible ever since I had my youngest but I don't know if it could've been there before just never noticed) I've thought about looking into more holistic ways of living but I'm honestly scared to make the change on my own. I'm scared to cut out gluten because part of me thinks I have something like pots because I need salt or else I feel weak and dizzy and I wouldn't know how to get that without carbs which usually means gluten 😩 I'll definitely look into seeing what I can cut out more of, I don't really eat a lot of eggs or soy that I know of and dairy is cut to a small amount because I'm lactose intolerant, sugar would be super hard for me to cut out too 😅

Hiii I have chronic fatigue syndrome & POTs (: happy to answer any questions ya got

@Parker 又 what are your symptoms with both of those?? My body just always feels like it's freaking out and I don't know why and of course I just keep getting told it's anxiety 🙃

@Annika I’ve had pots symptoms my entire life personally I never knew I what i experienced wasn’t just normal LOLOL until after I got a service dog for ptsd who naturally altered to my heart rate changing So I get really light headed if I change positions too fast, not even always just from standing up, I am constantly thirsty and constantly peeing, I get nausea spells (sometimes along side dizziness sometimes on its own) My body personally does require increased salt intake but not everyone does! I cannot tolerate the heat. Whatsoever; my brain likes the sun; my body cannot function. When I was younger it was always brushed off as anxiety, but really my body’s autonomic nervous system didn’t function right

https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots

I mainly self manage! I’ve never been on medications for managing symptoms but a lot of people get a lot of help out of them! I keep up with hydration & my salt intake & I just try really hard to listen to my body, it works for me because I’ve went my entire life believing it was just normal. Since learning it’s a real problem I have I’ve been able to be more consistent on the daily things that help. I’ve also added wearing compression socks into my daily fits to help out & I am not longer afraid to just sit down whenever I am

@Parker 又 this sounds a lot like some of my symptoms! This past year or so, I'm ALWAYS thirsty like I never have been before. I drink like a gallon of water everyday or I feel like a raisin the next 😅 I can't tolerate the heat AT ALL either, I feel sick and irritated and dizzy if it's over like 75 😅 for a few years I've felt like I've needed extra salt or else I feel really weak and dizzy so it's a possibility I have POTS on top of something else but I'm really hoping seeing the rheumatologist will help 😩

@Annika it def could be!! Honestly every specialist you see is one step closer to the diagnosis! In America they want to exhaust all other tests before they conclude it is infact POTs some friends in Canada & over seas have had an easier time with finding knowledgeable professionals

@Parker 又 I've had so many blood tests done looking for things and everything comes back "fine" so they never care to call or review anything after 🥴 but it's like my body clearly isn't fine but they just want more money around here 🫠

@Annika ultimately doing heart monitoring or a tilt table test is how they really decide if you have pots or not most the time, bloodwork doesn’t really show a whole lot; HOWEVER go get a D.O as your pcp instead of an M.D they will do blood work on hormonal levels & if there’s vitamin deficiencies which do not ever help chronic illnesses ahahah

If you have an Apple Watch you can try to be consistent about wearing it on your own, some ppl prefer getting an app like tachymon because it runs a bit more consistently than the built in heart rate tracking on Apple Watches; but having a log of your heart rate for several months will help any doctor or specialist take it more seriously as a concern at all (: 🫶🏼

@Parker 又 I have such bad anxiety with my heart rate because it's so high all the time or rapidly spikes and I have heart palpations all the time so I kind of avoid any smart watches that track heart rate 😅 I've had some tests for vitamin deficiency testing but mostly for my vitamin D because it'll get low out of nowhere and metabolic panels along with TSH panels and some stuff is on the low end of "normal" but apparently not enough for them to even follow up on things

@Annika yehhh I feel that entirely LOLOL everytime my blood pressure is taken by a lil machine I break it 🤣 like an error code reads out. I literally only tracked for 3 months for doctors to take me seriously and my vitamin d levels were at an 8 🫣 out of 100 LMFAOOOOOOO I also have the mthfr gene mutation

@Parker 又 mine was that low at one point too 😅😅 now I'm around a 20-25 which they're extremely happy with thankfully lmao my blood pressure is almost always like 110/86 or something like that and occasionally lower if I go right in the morning even through both my pregnancies it didn't budge 😂

@Annika yeh since the first blood workup I’ve made it to 22!! hahahah my doctor prefers spacing out the timeframe when they give me the prescription strength vitamin d to take to boost the level back up so it’s just taking time My blood pressure is naturally low; I just get so much anxiety when the action of it being taken is happening it breaks the machines LOLOL the nurse at my ob’s office was hilarious about it she was like break my machine I’ll be back to do it manually & tell you the numbers are ideal