Dysautonomia question

[soxfan]

I am trying to figure out if I have Dysautonomia....and have been doing alot of reading on this. From what I have read...you don't have to have POTS as there are different forms of dysautonomia. I know I don't have POTS as I had the tilt test last summer and wore a Holter montor as well.

But I have so many symptoms of Dysautonomia that I am thinking this could be my major problem. I have had most of the symptoms listed off and on for years but the ones that are constant are the chronic fatigue...unrefreshing sleep...heart palps really intense. By heart palps I mean I am accutely aware of my heart beat and it feels like it pounds out of my chest (mostly at night). I sometimes think it is fast but in reality it beats around 50-55 while in bed at night.
I also have diminished mental stamina as when I work it exhausts me terribly. I get very mentally overstimulated by the time I get home which leads to an awful physical exhaustion where my body pounds with fatigue.

I am able to do much more physically than most here which I am very grateful for but the fatigue is the disabling factor for me. If not for that I could lead a pretty normal life. My other constant symptom is neuropathic pain and muscle twitching in my calf which I have had for years. That also never goes away.

I also will overheat to the point that my glasses will fog up...I have sleep issues...blurred vision at times...chills at night...feeling off balance...easily over stimulated...feeling full quickly...feeling wired...I could go on as there are many more.

My doctor wants to keep treating me with abx as he feels these problems are from Bartonella but I don't feel as though that will do much good. I was just tested again but don't have the results.

I feel as though I am at the very end of my rope here and hoping someone has some imput. There are days when I am so tired by 2pm I am basically done and I haven't even done anything! But other days I can go shopping for hours and feel somewhat okay although tired. Also I can exercise pretty much everyday inspite of the fatigue. I know that is strange and I think so too but even if I feel very tired I can get on the treadmill and walk.

As everyone here knows it is very depressing and makes me anxious not knowing how I am going to feel from one day to the next. I have never been offically diagnosed with CFS as I don't fit into the "criteria"....help anyone?

 

[SOC]

Have you read this PR article? http://phoenixrising.me/treating-cfs-chronic-fatigue-syndrome-me/problems-standing

It's only about OI, not all dysautonomia, but if you follow the links, you can read about some different types of OI and something might right a bell. Also, if your tilt table test was only done for 10 mins or so, it could have missed delayed OI which can take longer to develop.
HTH

 

[Sea]

Those symptoms you mention could have numerous causes. Only proper testing would rule dysautonomia in or out

 

[soxfan]

My tilt test was 30 minutes and I was hooked up to a blood pressure monitor the entire time.. I will read about OI again but didn't think it fit me...thanks for the suggestion.

Gonna talk to my doctor about it next visit in Feb...

Problem is I have been having these symptoms for 8 years and been tested for everything you can imagine...I have even been to the great Dr. K in Boston who couldn't give me a diagnosis of CFS or anything for that matter.

I wanted to also say that another prominent symptom is feeling as though there is an electrical current running through my body especially at night when I wake up...almost like a vibration but the length of my torso especially behind my chest area.

 

[Sparrow]

Can I inquire how do you not fit the criteria for CFS? Have you looked at the Canadian Consensus Criteria chart for ME? I'm sure you probably have, but from here it looks like it covers a lot of what you've mentioned... In fact, a lot of what you're describing sounds like pretty textbook ME to me. There are lots of other conditions that overlap with parts of what we have, so of course we can't say for sure. But I'm unclear on why that diagnosis has been ruled out for you. Is it because you don't feel particularly "viral"? If you could give some more detail, that might help.

I've been diagnosed with ME, and recognize pretty much all of what you're describing. I do also have POTS, but I don't believe it's my POTS that is involved in the symptoms you've mentioned. POTS for me brings on itchy red feet when I stand, high heart rate, dizziness when standing, sharply increased cognitive issues when sitting or standing too long, etc. The twitchy muscles, sweats, vibrations, double vision, poor sleep, palpitations, fatigue, overheating, pain, balance issues, low threshold for activity, overstimulation, etc. seem to just be side effects of the ME itself (or other imbalances brought on by it - I've been able to stop a lot of these symptoms through changes in supplements or lifestyle).

That feeling of being wiped out some days but not others may be how the post exertional malaise is manifesting for you. I know there was a phase where I was capable of exercise (though it felt HARD), and hadn't yet been hit with the super bad aftereffects. Continuing to push that did eventually make me much, much worse, though.

 

[soxfan]

I went to see Dr. K in Boston a couple years ago and he did a full evaluation on me including lots of blood work. In a letter I received from him a few weeks later he stated that he could not definately diagnose me with CFS...his words were "From the physical examination and laboratory findings, I cannot make an absolutely definate diagnosis of CFS.

I feel that he said that was because I didn't meet the CDC criteria as I don't have 4 of the 8 common symptoms listed. That is the only reason I can think of.
In some ways I do feel as though I have CFS although the only disabling factor for me is the fatigue and nothing else. Although I know it is not a normal fatigue as rest does not relieve it...just helps me manage it better.

It is true that could be how PEM manifests for me but I have much more difficulty with the mental exertion. That is what truly wipes me out.
I am not saying I don't have CFS but I have never in 8 years been actually given that as a diagnosis by any of the doctors I have ever seen.

 

[taniaaust1]

I personally think this illness may manifest all kinds of ways and in all kinds of degrees eg my ME was on and off for the irst year.. sudden bouts of flu like symptoms and then getting completely well again.. all that on and off over and over. My sister thou who's got sick too (after drinking out of my glass) she's manifested completely differently and more a CFS case.. but over time she's developing more symptoms thou still dont have many eg she doesnt get insomina or viral symptoms like I do.

Those diagnostic symptoms that they picked to diagnose this illness with.. who knows if they are the best symptoms to be doing so with. Maybe something like alcohol intollerence or a different group of symptoms may end up proving to be more accurate for diagnoses or maybe there is a ME or CFS "lite" group.

 

[soxfan]

The first two years were the worse for me...but over the years it is almost as if I have a completely different illness as now I have different symptoms then when I first became sick. I still have the two original which are chronic fatigue and nerve pain and muscle twitching in ONLY my left calf. But along the years more problems have cropped up.

I started off with a 24 hour flu and completely recovered. My symptoms didn't really start until 3 weeks later and I haven't been the same since. I believe I have CFS but mine manifests inself in different way for me. I have many of the same symptoms as alot of the people here only mine seem to revolve around mental exhaustion and my total inablility to handle stress. If I am having a bad day I can't control my emotions and will cry on and of for hours which leads to an unbelievable exhaustion lasting into the next day.

Where as I can go on vacations and be as active as I want for a week or 2 and have no repercussions at all...for example I went to Hawaii in September for 2 weeks and was able to snorkel...swim...hike... and even eat dinner out and had no problems with overstimulation...or exhaustion. It was as if I were well again and it was a blissful 2 weeks.

I feel as though I am always in the flight or fight mode and my body is in a war with itself constantly.....

I know that I totally relate to almost everything that people write on here and it is nice to read a story and know someone else is going through the same thing....i just wish my family and friends would understand.