jklass44

Hi there. I have this too. Basically the same areas as you as well... Neck, shoulders, fingers, knees, ankles, toes, hips... I have osteoporosis though I'm not sure if it has anything to do with it. I'm in my late 20s. I don't typically have any pain per say from these cracks and pops, so maybe if you're concerned you should see your GP? From my understanding EDS is quite common in those with dysautonomia. Not saying you have that but cracking/clicking can be a symptom.

Yes I feel this way a lot. Fatigue and weakness are some of my worst symptoms. If I do take the day off work, I alternate between napping, sitting and light walks around the house. It's a vicious cycle and can be quite difficult to find a good balance that works well for your body. If I sleep too much it makes my symptoms worse, but if I don't sleep enough it also makes my symptoms worse...

I had an event monitor just a few months ago. It also recorded any abnormal events and I could push the button to record something myself. However, mine stored many events. It was well over 200 my doctor said. I had a lot of PVCs, PACs, a bunch of episodes of sinus tachycardia, and one episode of ventricular tachycardia. Try not to stress or get anxiety over the beeping, it'll just make the event worse or prolonged. Of course, if you have other bothersome symptoms that accompany any cardiac events, please contact your doctor. You said they get sent off at the end of each day? I'm sure they would contact you if something was super serious Have you had a 48 hour holter? ECG? Echo?

@Pistol That's so interesting. I've always wondered if I have prinzmetal angina because the pain comes at such random times, often when I'm not doing anything, and it appears in cycles. My cardio said we'd consider an angiogram if it got worse. Yes ive had a couple echos and stress tests, also a cardiac MRI and a TEE. All came back relatively normal. I always tell myself I won't push through but then I do and screw myself over. But what you say is absolutely correct - it makes things way worse. I need to retrain my brain into realizing that pushing through always ends badly. Thanks for your replies everyone!!

Hello. For those of you that suffer from chest pain symptoms, do you take anything to relieve it or do you go and see your doctor or... I've always had chest pains as a symptom and when I'm in a flare it gets really bad. Previously I've gone to the ER when it becomes unbearable but there's really nothing they do that relieves it as my heart itself is healthy. I thought I would try and push through it today and I tried going to work... that didn't last long lol... Just curious as to what you guys do in this situation. Thanks in advance

I've always wondered this too! It doesn't matter what kind of insect bites me, I will always swell up like balloon, I get tachycardic and very dizzy. Last year I got bitten by a mosquito on my temple and I had to go to emergency because my entire face swelled up, eyelids glued shut and everything it was awful! I have never been tested for MCAS or autoimmune diseases but it's interesting that we both have similar symptom flares after insect exposure/bites! This is why I don't go outside 😂

I've had 3 treadmill stress tests, which were all normal except some random PVCs, and I had 1 stress echo which was abnormal. That one left me absolutely exhausted and short of breath If im not mistaken, most people with dysautonomia have fairly normal stress tests in terms of heart rhythm and BP.

I'm in the same boat as Pistol. I knew something was wrong and was constantly ill but I'm such a driven, goal oriented type of person that I kept pushing through my symptoms which inevitably made them worse. I too would start passing out at work and really had to cut back on my hours this year, which was upsetting for me. I finally got diagnosed with POTS just this summer and honestly it's still a struggle for me to accept. It's that fine line between knowing something is not right with your body but wanting to push through anyway because you don't want to be sick. I keep thinking to myself that medication alone will solve all my problems and lessen my symptoms, but I also know that I need to make some serious life style changes as well. I understand your frustration. The others have made some great suggestions here! Of course, surrounding yourself with good doctors and helpful family members is important too. Good luck with everything

Thanks for your replies everyone, I really appreciate it!! @firewatcher That's interesting about the high histamine triggers I never actually thought of that, I'll have to keep an eye on it for sure.

@KnickKnack I'm sorry to hear that you have to deal with these symptoms as well! It definitely sucks and very frustrating. I do feel tension running along my neck and shoulders for sure, but that's really nothing new for me. I'll keep that in mind though and maybe try some stretches or warm/cold packs.

Does anyone get headaches and/or migraines as a symptom? I get headaches to varying degrees multiple times per week, and then a migraine usually once every 2-3 months or so. The headaches run from the top of my head down to my neck and shoulders. The migraines leave me quite debilitated for a couple days. I have never been able to find a link to what's causing them. I'm not dehydrated, they don't link up to my time of month, and no amount of Advil or Tylenol will help (which is weird because I'm usually quite sensitive to medication). Anyone that's been able to combat these annoying symptoms id love to hear some tips or tricks! I'm about ready to just stick my head in the freezer and leave it there 😅

I have had this happen before when I'm eating. It happened quite frequently and would almost always be accompanied by palpitations. It happens less now that I eat smaller portions/snack throughout the day instead.

I have also read somewhere that POTS patients tend to be on the thinner side, although not always true. As a teen I would always bounce between slightly under weight to an ideal weight. Throughout my 20s and now in my later 20s I've lost a lot more and am considered underweight. My appetite definitely increases during my period, which I try to take advantage of and eat as much as I can at that time. Otherwise my stomach just doesn't seem to be able to hold a lot of food! I get nauseous and extremely bloated if I try and eat a "normal" meal. I agree with the above comment stating that GI involvement plays a role in this. Good luck. I hope you feel better soon!

Yes. My head, arms and legs. Haven't really given them much thought though because they only happen when I'm trying to fall asleep.

Last year, before I had my diagnosis of hyperPOTS, I was admitted to the ER for hypertension and I was in vtach. They did bloods, xrays, urine and it all came up clean so in the end they said well that's weird let's try some IV fluids... Worked like a charm. BP and HR came down and I felt so much better, more energy, etc. Im still trying to find a beta blocker that works for me because oddly enough they make my chest pains worse. But yes, this heat sucks and I wish I had access to IV fluids all the time because just drinking water doesn't help me 😂

I'm feeling awful due to the heat as well, been having lots of palpitations today. A fan and the AC is a good start. Cool cloths on your head and chest may help as well. Keep hydrated and keep moving around to a minimal if you can. Put on some music or maybe a show to help distract you... If anyone else has helpful tips I'd love to hear them too, but that's pretty much what I've been doing!

I had a wrist cuff one that I used to use but my cardiologist said those ones are not very accurate... I recently just bought an arm cuff one off Amazon for a decent price... I'll let you know how it is once I get it. Just make sure you search around, read the product details ( some only come in one size cuff) and skim through the reviews! Pharmacies have good ones as well and you can actually visualize them before purchasing, but they can be very expensive. Best of luck!

You are definitely in good company lol! I have low ferritin and my B12 is borderline deficient. I'm extremely sensitive to iron supplements so I just do my best to eat foods high in both... I'm also a vegan so it's something I'm always conscious of anyway. I get frequent bloodwork done to keep an eye on those levels and my latest one was trending up, yet I haven't exactly had more energy, so it's hard to say if it contributes to my POTS symptoms.

@Potsie1990 I can relate to the violent side effects. So far I've done terrible on beta blockers, but the cardio I saw today wants to try a beta/alpha blocker now... Well what have I got to lose at this point haha! Good luck with your research. Of course it goes without saying but make sure your sites are reliable! How often do you wear your compression stockings? I just got measurements and ordered some today. Got some funky colours to make me feel better 😅

@Pistol Thank you so much! That's all very helpful. I'll have to double check on the salt because at first she said it probably wasn't a good idea. Sounds like we have similar symptoms though so I'm all over that resting thing! @zerohours000 Thanks! Hope you are doing well. @Potsie1990 What a battle indeed. Have you started any sort of treatment or are you waiting to see which subtype you have?

@StayAtHomeMom Thank you! Yup that's basically the exact reaction I almost had 😂 But yeah I'll definitely do more research on it until I see my cardio again.

3 cardiologists, 1 internal medicine specialist and 1 neurologist later... I finally have a diagnosis of hyperPOTS. Is it wrong to say that I was actually relieved when the doctor told me? Lol. No more "Oh you just have anxiety" or "You're probably just lacking sleep". It almost feels validating in a way to know that I wasn't just crazy all those years. It sounds like getting a diagnosis is just half the battle though? I'm super sensitive to a lot of medications so that will most likely be some trail and error. I also need to continue making some (slow, subtle) lifestyle changes as well to try and beat this constant fatigue. Does anyone have any light exercise recommendations that I could start with? Preferably indoors as I don't do well in heat. Thank you in advance. Hope everyone has a great weekend

I get very frequent PACs and PVCs. I've tried Metoprolol, Propranolol and Diltiazem which have all helped lower my heart rate (I also get sinus tachycardia), but did nothing for my palpitations. I agree with StayAtHomeMom, everything seems to get worse a week or two leading up to my period. I usually have to take it really easy and not do too much during that time. Lots of naps... Oh and no I can't drink alcohol. I'm still fine with coffee though thank god.

Anyone else get full body rashes and/or hives when the weather is really warm? I break out all over my chest, back and face. It's more just concerning to look at than anything, not itchy or raised and goes away once the cooler temperatures come back. I also get the typical dizziness, brain fog, palpitations and crushing fatigue during heat waves. Sitting my butt in front of a fan with a giant bottle of water today that's for sure!

@ks42 You make some really good points! And I totally understand the feeling of being "passed off" to different specialties. I think I went into that neurology appointment having high hopes because of exactly what you said; ANS dysfunction technically falls under their category. Unfortunately the doctor I saw didn't specialize nor was he familiar with these sorts of syndromes or diseases. Hard to blame them when that's the case, but when you've seen so many doctors it just gets frustrating... I have heard about Dr. Raj and I'm about an 11-12 hour drive away. Wondering if it might be worth it to make the trip... @Pistol You've summarized that quite perfectly I must say! Thank you for laying that all out and putting my cluster of thoughts into words!