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mancmm19

Daily Malaise And A General Unwell Feeling- Dysautonomia Symptom?

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Hi again! Since coming down with a bad virus in the beginning of October, I have seemingly been on a major flare since. Although my POTS and Dysautonomia symptoms have definitely gotten worse, I'm also currently undergoing testing to find out whether I have an autoimmune disease (all blood work as of now points to yes, although it is being considered an unspecified autoimmune as it does not fall into a major category like Lupus, Sjogrens, MS, etc.)

Now to my question...One of my chief complaints is the daily fatigue and malaise that I feel, even while resting and my blood pressure is okay. After having POTS/ Dysautonimia for so many years, I can pretty much recognize the daily symptoms, triggers, and episode symptoms but am curious if anyone else has a daily malaise and feeling of just being unwell? I am trying to determine if this symptom is from the autoimmune or is actually a dysautonomia symptom. It has gotten significantly worse since October (I cannot work and have basically been house-bound) but the fact that I feel this way when my blood pressure seems okay sometimes has me wondering. I cannot even fully describe it but for a majority of the day every day, I have little energy and just feel like something is wrong inside. I don't feel like my healthy, normal self. If you can relate or have any advice, it would be very comforting to me if you can briefly share! Thank you :)

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Hi Michele,
I feel your pain…I actually came down sick in October too, and ever since been struggling with pretty much EXACTLY what you're describing with the tiredness and something being "off" beyond the regular POTS stuff. I'd be very curious to know what tests you've had so far for it, and what they found.
I don't know…it's always such a tough question figuring out what's coming from dysautonomia and what isn't. I've certainly had it where getting killer POTS symptoms with perfectly reasonable heart rates and blood pressure, but on the other side, I've never had this kind of malaise and tiredness with POTS before either. Hopefully whoever you're seeing for the autoimmune blood work can give you more detailed answers and a better picture of what may be going on soon. I know autoimmune stuff can be frustratingly difficult to track down :/
Sorry I don't have more useful thoughts (maybe someone else on here will have more insight), but for what it's worth, I can DEFINITELY relate. Hang in there, and hope you get some answers and relief very soon

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Hey Michele, like you I had a daily generalized malaise/ brain fog as a symptom typically it's at lower levels so I have just gotten used to it, but other days like this past weekend I just felt mentally tired all day as if I had gotten no sleep even though I had been sleeping fine. It could be quite bad at times where I don't feel like I should go out because it feels like I'm pushing against this tired, drowsey, out of it feeling, but I just try to keep eating, rest on the days it's really bad and try and take advantage during the days it is better. Not sure if its a dysautonomia symptom as I have other neurological disorders but I think we all get this at least from time to time.

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Hi Michele,

Sorry you aren't feeling well. I attribute this feeling to my pots... I try describing it to my doctors as feeling like I have the flu every single day. It's a terrible feeling of just not feeling good.

Sorry that you've got all this going on.. I hope you start to get some answers soon from all the testing your going through!

Sarah

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Hi Michele,

I can totally relate and have the same questions. I actually have had very few "normal" days since this started 5 years ago when I got sick from EBV (lost 37 pounds in 6 weeks kind of sick). Before the diagnosis of POTS, I thought it was just chronic EBV with some crazy unexplained episodes to go with it. Once I realized I had POTS, I could also figure out most of my triggers for the episodes but not the everyday "unwell" feeling. While my doctor felt it was part of POTS she did continue to test and found that I was severely anemic. I recently had a series of IV iron infusions with B12 and mega D. While this has helped some, I still haven't gotten back to anything I would consider "normal". It is very difficult to figure out what is POTS related and what isn't. I hate to assume that it is all POTS because what if it isn't related and we can do something to fix a different problem that could make us feel better? Craziness.

I hope you are feeling better soon!

Trisha

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Trisha, . Did you have any side effects from the iron infusions?

Michele, just out of curiosity, are your hemoglobin and hematocrit levels normal? Being anemic makes you feel terrible, also.

All my best everybody,

Sarah

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Hi Michele,

I am sorry you are feeling so crummy. I have Sjogren's, and before I was treated for it I felt the way you are feeling for two years. I still get that feeling when I flare but in general it is gone. I take Plaquenil and it takes about 6 months to really work. I can say for sure that mine is not POTS because my POTS has gotten more severe and more regular during the last year but the malaise has not come back. Many autoimmune connective-tissue diseases are treated with the same drugs (DMARDs). Some are relatively cheap and reasonably safe. If I were you I would explain to your doctor how you feel and how this is limiting your activities and your quality of life. They can use low-dose Prenisone as a bridge treatment and that might help, too. I know for me I also get depressed whenever I have that crummy flu-feeling. Many people are treated for autoimmunity before a definitive diagnosis. In fact mine is a working diagnosis. I am thankful to have a doc who is willing to treat even though she is not 100% sure of my exact dx. This is because these diseases are closely related, and many symptoms are caused by teh same thing (inflammation).

Take care of yourself and keep seeking help!

hugs,

Nicole

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Hello Sarah.

Not sure if the injections have the same effects as the IV infusions. I had 2 hour IVs once a week for 4 weeks. I was told that I wouldn't notice a difference until at least the 3rd or 4th one because my numbers were pretty low. Unfortunately after the 2nd week I started to feel terrible. It took a few days for me to think about taking my BP (duh) and realized that I was running in the 80s/60s (normally 110/70 and thankfully doesn't vary much). I was told by the nurse and EP that Hypotension can be a side effect (hematologist disagreed). It took about 10 days for my BP to settle down. This was the only problem that I had with it. Not sure what side effects they are concerned about in your case, but I would push to clear up the anemia - let them figure it out when you feel better! Lol. Good luck!

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