Sarah Tee Posted March 7 Report Share Posted March 7 I know you all know it already, but I continue to be amazed at the useful information a person can dig up here. Time after time, I have a thought or start to follow a lead, then find a great discussion of the very topic here on DINET from ten or twenty years ago. Or I luck onto a discussion here, and it leads me to something useful to bring up with my specialist. Quote Link to comment Share on other sites More sharing options...
Stardust Posted March 15 Report Share Posted March 15 I haven't been diagnosed yet but I'm noticing this right now too. I see things mentioned that I experience that I always thought were just weird things I have for no reason are common in/related to dysautonomia. It's helping me compile a list of symptoms that I have but might not have thought would be related. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 16 Report Share Posted March 16 11 hours ago, Stardust said: I haven't been diagnosed yet but I'm noticing this right now too. I see things mentioned that I experience that I always thought were just weird things I have for no reason are common in/related to dysautonomia. It's helping me compile a list of symptoms that I have but might not have thought would be related. @Stardust When i saw my autonomic specialist for the first time he gave me a paper with a long list of symptoms, then he asked me which ones I experience daily. I had to admit that I had all of the symptoms almost every day. His remark was : "that's what they all say". It was the first time I realized that it was NOT all in my head, or that I made things worse, or that maybe I could just snap out of it. It was oddly reassuring, to know that I am "normal" within the POTS category, Lol! I later realized that I had typical symptoms of POTS all of my life, but that I always had dismissed it as something that was just me. Craving salt, crossing my legs all of the time, feeling faint easily, being easily overwhelmed, racing heart, stomach issues --- in retrospect I noticed that all of these are symptoms of POTS, or rather a compensation mechanism. So it is a very good idea to write down your symptoms, even if there are a lot. Sure, some docs will do the eyeroll when a patient walks in with a long list of unexplained and vague symptoms, but a good doctor will address them and try to help you find a treatment AND find a cause. Be brave, and know that your symptoms are real. Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 16 Report Share Posted March 16 @Pistol I am so glad you mentioned a long list of symptoms. Because I have so many symptoms... In my country we don't have specialists, only few doctors know something about it, and we are pretty much on our own as patients. We are searching alone for all information and trying to raise awareness. Unfortunately, there are no results yet. It is very discouraging to suffer from this awful condition, and on top of that carry the burden of raising awareness and educating people/medical staff in order to change something. Quote Link to comment Share on other sites More sharing options...
Stardust Posted March 16 Report Share Posted March 16 5 hours ago, Pistol said: I later realized that I had typical symptoms of POTS all of my life, but that I always had dismissed it as something that was just me. Craving salt, crossing my legs all of the time, feeling faint easily, being easily overwhelmed, racing heart, stomach issues --- in retrospect I noticed that all of these are symptoms of POTS, or rather a compensation mechanism. So it is a very good idea to write down your symptoms, even if there are a lot. Sure, some docs will do the eyeroll when a patient walks in with a long list of unexplained and vague symptoms, but a good doctor will address them and try to help you find a treatment AND find a cause. Be brave, and know that your symptoms are real. Craving salt and crossing legs all the time are related too? Another thing to add to the "apparently I've always had been this way" list. I do have a ton of symptoms but I was going to try to make it slightly less overwhelming by putting them in a bullet-pointed list by category. lol Thank you so much for the advice and encouragement. It really helps to hear from others that it's not all in my head, 💜 Quote Link to comment Share on other sites More sharing options...
Sea otter Posted March 16 Report Share Posted March 16 26 minutes ago, Stardust said: Craving salt and crossing legs all the time are related too? Another thing to add to the "apparently I've always had been this way" list. I do have a ton of symptoms but I was going to try to make it slightly less overwhelming by putting them in a bullet-pointed list by category. lol Thank you so much for the advice and encouragement. It really helps to hear from others that it's not all in my head, 💜 It is not in your head. You know your own body, whatever you have it's real, don't ever doubt that. 🤗 Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 16 Report Share Posted March 16 LOL! I was lying in bed this morning, thinking about listing my symptoms (for the 100’th time). I’m going down to see a Neuro doc at Columbia University in NYC next week. Anyway, I realized that it would save me a lot of time to just cut and paste the whole “signs and symptoms” section from a good website, then delete the 2-3 symptoms I don’t have, add the 2-3 strange ones that only I have and, EASY PEASY, done! 🤣 Quote Link to comment Share on other sites More sharing options...
Stardust Posted March 16 Report Share Posted March 16 1 hour ago, Sea otter said: It is not in your head. You know your own body, whatever you have it's real, don't ever doubt that. 🤗 Thank you so much!! 🥰 That means a lot. 3 minutes ago, MaineDoug said: LOL! I was lying in bed this morning, thinking about listing my symptoms (for the 100’th time). I’m going down to see a Neuro doc at Columbia University in NYC next week. Anyway, I realized that it would save me a lot of time to just cut and paste the whole “signs and symptoms” section from a good website, then delete the 2-3 symptoms I don’t have, add the 2-3 strange ones that only I have and, EASY PEASY, done! 🤣 lol that's a great idea! Easier to say "What symptom don't I have?" 😂 Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 16 Report Share Posted March 16 So true! My first big break in cracking my POTS case came about 3 years ago, when I realized that I could reliably, 100% of the time “create” an “attack” with sweating, flushing, tachycardia and crazy BP anytime I “wanted” to! 🤪For those docs who wouldn’t listen, I’d limp around their clinic for 2 minutes until I looked like I needed an ambulance! It was kinda funny to watch their faces as my HR passed 200! And I couldn’t agree with Sea Otter more. If it’s real to you, then it is real, and should be taken seriously and addressed! Quote Link to comment Share on other sites More sharing options...
Stardust Posted March 16 Report Share Posted March 16 @MaineDoug That must have made things so much easier after that point, lol "Look what I can do!" I'm a little worried about symptoms not showing up while being tested to be honest - they're better or worse depending on the day. Sometimes they're awful and sometimes I'm okayish. Wish they could just follow me around. lol But I'm taking the advice of another user to get a blood pressure/HR cuff and keep a log! Thank you so much! Again, I really appreciate the validation from you guys. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 16 Report Share Posted March 16 1 hour ago, Stardust said: @MaineDoug That must have made things so much easier after that point, lol "Look what I can do!" I'm a little worried about symptoms not showing up while being tested to be honest - they're better or worse depending on the day. Sometimes they're awful and sometimes I'm okayish. Wish they could just follow me around. lol But I'm taking the advice of another user to get a blood pressure/HR cuff and keep a log! Thank you so much! Again, I really appreciate the validation from you guys. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 16 Report Share Posted March 16 Oops! I think many of us have that fear that our symptoms won’t “show” just when we see the docs! And it happens. But believe in your body and what it tells you. I must say that I’ve found it to be much more important to find a doc who is knowledgeable rather than worry about the test results. In my experience a bad doc will miss or dismiss the most glaring test results, while a skilled expert in the field will see through the fog and find the truth! The validation goes both ways! Thank you for contributing! Quote Link to comment Share on other sites More sharing options...
Stardust Posted March 17 Report Share Posted March 17 @MaineDoug Thank you!! 💙 Hoping I'll be blessed with the latter lol Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 18 Report Share Posted March 18 Sarah I totally agree. This forum is incredible. Even though I've been on here a long time, there's so much information already here that can be found through the search function. I was curious if anyone else had numb hands when they wake up in the morning and sure enough found someone talking about it too! haha On 3/6/2023 at 10:36 PM, Sarah Tee said: I know you all know it already, but I continue to be amazed at the useful information a person can dig up here. Time after time, I have a thought or start to follow a lead, then find a great discussion of the very topic here on DINET from ten or twenty years ago. Or I luck onto a discussion here, and it leads me to something useful to bring up with my specialist. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 18 Report Share Posted March 18 Hi Birdlady, my hands get numb, not particularly in the morning though. I find it happens in the afternoon or especially if I’m stressed. Of course with our Biologic clocks all messed up, do our bodies know when “morning” is? Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 18 Report Share Posted March 18 54 minutes ago, MaineDoug said: Hi Birdlady, my hands get numb, not particularly in the morning though. I find it happens in the afternoon or especially if I’m stressed. Of course with our Biologic clocks all messed up, do our bodies know when “morning” is? Mine is immediately upon waking. My hands are numb and have no strength in them. I have terrible back pain and stiffness. Both usually resolve about the same time after I get up. May not be POTS related. Quote Link to comment Share on other sites More sharing options...
MaineDoug Posted March 18 Report Share Posted March 18 Well, I was being specific to the hands. In general I feel terrible in the mornings. Pain, brain fog, extreme fatigue, ugh! I used to be a morning person, waking up at 4 AM and into work by 5. Then RA and POTS got to me. Now I wake up at 9 and I can function at a low level from 1 to 3 in the afternoon. Then the PM pain and fatigue sets in. But I’m grateful for what I get! If I remember to hydrate at night, getting up every 2 hours and drinking at least 16 ounces. It helps me tremendously! And the need to relieve myself is my cue for my drinking! 😅 Quote Link to comment Share on other sites More sharing options...
MikeO Posted March 18 Report Share Posted March 18 I sometimes wake up a bit stiff. Lazy chair at times will numb up the one arm so i just get up and shake it off. Quote Link to comment Share on other sites More sharing options...
Pistol Posted March 19 Report Share Posted March 19 15 hours ago, Birdlady said: Mine is immediately upon waking. My hands are numb and have no strength in them. I have terrible back pain and stiffness. Both usually resolve about the same time after I get up. May not be POTS related. @Birdlady I developed generalized joint pain at the same time as my POTS became disabling and my autonomic specialist said that many POTS patients complain baout this symptom. My joints felt horrible every morning and remained stiff throughout the day. It would only get better if I moved. I was put on Plaquenil and after a few months of taking it I no longer have these joint problems! Quote Link to comment Share on other sites More sharing options...
Birdlady Posted March 19 Report Share Posted March 19 5 hours ago, Pistol said: @Birdlady I developed generalized joint pain at the same time as my POTS became disabling and my autonomic specialist said that many POTS patients complain baout this symptom. My joints felt horrible every morning and remained stiff throughout the day. It would only get better if I moved. I was put on Plaquenil and after a few months of taking it I no longer have these joint problems! Thank you for this info. As I'm getting older, my back and hips are definitely hurting more especially while I sleep. Ugh! Quote Link to comment Share on other sites More sharing options...
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