Autonomic Dysfunction - Body pain and headaches?

Treatment and medication
1

Hello everyone.  I was diagnosed with AN last year, confirmed through a QSART test plus a multitude of symptoms.  I have almost every symptom known to the disease, unfortunately.  

For about the past 10 months or so I get episodes of total body pain.  In the late afternoon to early evening, I begin to feel very tired and achy as if I was coming down with the flu, but I have no other symptoms relative to a flu.  No temperature, digestive upset etc.  Just this deep painful ache.  It feels as if my entire skeleton hurts or my entire nervous system hurts.  When it attacks me, I can't do anything else except climb in bed, curl into covers and take a couple Tylenol pm.  I also get the chills, but no temp.  There is no pattern to the episodes either.  I can have these body pain attacks 3 times a week and sometimes I can go several weeks with no attacks.  It is so odd.  Sometimes I think one of the triggers is when I catch a chill in room temperature sudden change, but I'm not sure if that has anything to do with it.

A few days ago I had an intense headache.  No other pain, just a horrid headache.  It wasn't sinus pressure because I took a sinus med plus I am on a daily allergy med.

I saw a Rheumatologist a couple weeks ago.  He is doing a couple blood tests from a company called Avise.  Avise has a set of blood tests that are supposed to be more thorough and more sensitive than standard blood tests.  For example I was tested for Lupus but it was negative.  My doctor said the Avise test picks up things long before any other test does or can for the things it does test.

I have a feeling that these episodic bouts of body pain are part of my autonomic dysfunction disease.  Does anyone else deal with pain like I describe?  

2

Hi,

I have come to a diagnosis of Autonomic 

I have read headaches are typical of patients with Autonomic dysfunction such as POTs. I can relate to your description of fluey symptoms. For me it is usually accompanied with dizziness and fatigue. I find water and salt very helpful (with permission doc). 

 Are you getting investigations to get to bottom of what might be other underlying conditions. Pain has a way of effecting CNS and maybe it is vice versa the more tools we have at hand are better. I found some good practical resources on dysautonmia international org information. Good luck with things.

3

Hi, I am still trying to figure out what is happening to me.  My normal resting heartrate is 54ish.... For the past few months, my BP has been as high as 214/105 and as low as 105/42.  My heart rate has had sustained increases at 90 resting easily shoots up to 130 when walking slowly.  I have had extensive tesing on my heart and they keep suggesting anxiety;however I do not have an anxious personality, and mental health suggests that I do not have anxiety.  I am more so angry at the doctors diagnosis.  I am looking for a doctor who can evaluate for dysautonomia or POTS.  I also have chest tightness, throbbing sensations in my neck sometimes, cold limbs, palpitations when I get up too quickly, which result in prolonged increased heart rate.. My current heart rate at rest is 95ish and has been like this for 2 weeks now.  Does this sound similar to what you or any reader has heard of or dealt with?  

Thanks! 

Best Regards