Diannna

Thanks for the post. I went ahead and did the survey. Everyone have as good weekend as much as possible.

I have never had COVID , but my D-dimer has been elevated for over 7years now and they say it's because of my fibromyalgia. Clots in my lungs over 20 years ago. None recently, but high d dimer. I just say well that is the weirdness of being me.

I just had that same conversation with my surgeon a couple days ago, and because of the incident during my surgery when my body bent an intubation tube, while I was under and I had an episode, I said to him that I was happy for that confirmation that it wasn't in my mind. He had to agree with me that it  is not, it is for real.  You still have those who refuse to acknowledge because they don't know how to treat what they don't understand.  

I happen to have the opposite, I drink constantly , but instead of peeing it out it just runs out my pores in the form of sweat. I start with the tingles, and I better quickly find a spot to sit because I am about to have an episode. My heart starts racing, I get weak, I am about to pass out ,water starts running out of my body in rivelets, I am having a hear attack yet not according to doctors, just an underlying medical condition. I get so sick of hearing those words. All test comes back normal yet they are seeing the physical symptoms but because there machines can't pick up what is happening, they don't know what to do. I just have to make sure that I keep hydrated, or things get so much worse. I have had that happen and I don't ever want to feel that way every again. The brain fog, shaking, nausea, vomiting, no thank you!  I will walk with as much liquid with electrolytes as possible to never feel that way every again! 

I'm but are ,I totally agree that my sweating is 24/7 .  You get hot then the chills , weakness like you are about to pass out, I also get the feeling that I have to go to the bathroom or I will be doing something on myself whether urine or #2. This is not a good life because you don't know when it will happen. I now wear incontentence pads for protection when I am going anywhere, as well as carry an extra t-shirt for when I soak the other one. That is how I have learned to get a handle on it. 

How do others respond.

I also have PAD and I had my veins in both legs taken care of. Some of them were closed off and the deep veins that were not flowing right still there because those they can't touch. Please have them checked to be sure that they are functioning properly.

I unfortunately have that problem. I can't take odors, I have to find them no matter how faint. I just always thought I was being finicky, I actually never thought it was from my condition. There are so many different things associated with it that I am learning just communicating with others who are going through this.

Same here. I have been learning to work around this as much as possible, but when the sweating comes I can feel it coming and if I am out and around people that is when it becomes a problem because they think I am having a heart attack, or that I have COVID.  Even when I go to my primary care doctor and I am checking in and I have an attack the receptionist start panicing, even when I say it is from my condition they want me to wait outside of the building until I am called. This gets really frustrating.

Mike O you said standard cardiologist what did you mean. I went to the dysautonomia clinic in NYC and they said they couldn't help me. So what kind of heart doctor are you talking about?

I so agree I can feel the heart fluttering ,but when they attach the monitor it does not suit it. It did it for 24 hour s but not for the month. I do the stress and they can see the physical results but the machine shows nothing. They know something is wrong but they don't have any thing on paper to prove it. And the cop out is that they don't have all the answers. This I already know. Don't look at me like I am crazy.

Cardiologist says nothing is wrong with my heart it is an underlying medical problem. So they keep shifting me from specialist to specialist in a merry go round. I am at my wits end at this point.

Yes  I do, I have tachycardia at those times like I am having a heart attack but not. Then my heart rate bottoms out after I come out of it.

Yes  I do, I have tachycardia at those times like I am having a heart attack but not. Then my heart rate bottoms out after I come out of it.

The sweating is very annoying for me since it happens with rhyme or reason, bringing with it dizziness, nausea, blasting headaches, feeling like your bodily functions is about to explode, can't move because you are afraid of passing out. Having this happen 2-3 times in the space of an hour and half all day and night very frustrating, because you can't sleep. Then you go from hot to chills.

Combine this with fibromyalgia, neck pain and lower back issues, knee issues all at the same time.

Can someone please tell me how to get some relief? Yes I am coping but would love some feedback!