This forum is a goldmine

[Sarah Tee]

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.

[Stardust]

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.

[Pistol]

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. 

[Sea otter]

@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.  

[Stardust]

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, 💜

[Sea otter]

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. 🤗

[MaineDoug]

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! 🤣

[Stardust]

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?" 😂

[MaineDoug]

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!

[Stardust]

@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.

[MaineDoug]

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.

 

[MaineDoug]

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!

[Stardust]

@MaineDoug Thank you!! 💙 Hoping I'll be blessed with the latter lol

[Birdlady]

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.

 

[MaineDoug]

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?

[Birdlady]

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.

[MaineDoug]

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! 😅

[MikeO]

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.

[Pistol]

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!

[Birdlady]

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! 

[Sarah Tee]

@Pistol, I think I will ask my doctor to try me on Plaquenil as an experiment. I don’t have achey joints, but, who knows, if steroids work on me, maybe Plaquenil will too. I suspect that my mum had Sjogren’s syndrome. I may have it too but it hasn’t made itself known yet (except perhaps that it is manifesting initially as autonomic symptoms).

I heard recently that 50% of Sjogren’s patients have autonomic symptoms as well. Not sure of the other way round – the big POTS survey showed 3% of people with POTS also had Sjogren’s.

Did it take long to have an effect?

[Pistol]

11 minutes ago, Sarah Tee said:

Did it take long to have an effect?

Yes, I had to take it for many weeks before I could tell a difference. Beware that it can cause problems wiht your vision, and you should have a special eye exam before you start the medication as well as annually. 

[Sarah Tee]

@Pistol, thank you. I have added it to my list of “items to action”. As it takes some weeks to see an effect, I might wait until I see a rheumatologist, which is in August, and ask him. Better to start it after any testing he might want to do if I do try it.

Did your autonomic specialist prescribe the Placquenil?

[Pistol]

8 hours ago, Sarah Tee said:

Did your autonomic specialist prescribe the Placquenil?

Yes, he did. I had been seeing a rheumatologist for the joint pains but he said there was no sign of auto-immune problems. My specialist explained that plaquenil has helped many of his POTS patients, and at that time they were just exploring the Innate immune system connection to POTS. He prescribed it for POTS but it was not covered for that by my insurance, so I pay for it myself. After a few months the joint pains were gone! 

Although I am sero-negative ( only elevated lab is ESR ) I do see a correlation between inflammation and my symptoms. I was told that most rheumos only look at the auto-immune system, not the innate immunity. This would be lymphocytes and our first response to invading germs. 

Read more here https://www.ncbi.nlm.nih.gov/books/NBK279396/#:~:text=The innate immune system is,the "nonspecific" immune system.

[Sarah Tee]

@Pistol, I remember you telling me about the innate immune system.

I wonder whether my autonomic specialist or the rheumatologist will have any thoughts on this. Not holding my breath!

I also plan to see an immunologist if I can get a referral. Unusually he looks at a wide range of things. Here’s his bio:

https://www.cabrini.com.au/find-a-doctor/drjeremymccomish/

He mentions auto-inflammatory – yay!

Thanks for the link. I will have a good read of it tomorrow.