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Could my symptoms be Dysautonomia?
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Could my symptoms be Dysautonomia?

Hi all, I'm new here and desperately searching for answers. Any help would be hugely appreciated.

I had a really bad gastro virus 4 years ago, and I've been ill ever since. My main symptoms are chronic nausea (unrelated to stress or food), headaches, tiredness and more recently, dry retching (I retched in my sleep last night which made me wake up very shocked).

I have also had a lot of joint symptoms which was suspected Rheumatoid Arthritis but it was found not to be. I've had blood tests, stool tests, ultrasound, barium swallow and all sorts and nothing has helped. I have periods of depression and anxiety too (though was going through some tricky personal stuff at the time) but the main thing that I struggle with is the nausea. I have Bowen therapy which can alleviate the symptoms for a while but then they come back worse than ever. I have lost a stone and a half in the last few years and my appetite is terrible - sometimes I don't eat till 2pm.

I've looked all round for answers to my illness, as the doctors and specialists have just said it's maybe still the virus from 4 years ago or IBS (I don't have any real IBS symptoms!). Frankly, they are baffled and I am slowly going out of my mind, I'm crying typing this because it is having such a damaging affect on my life.

I also sometimes go a bit shaky (just a few times then nothing for months) and have tingling feelings in my hands on rare occasions. The symptoms for Dysautonomia seem to resonate with me. I just want an answer to this ongoing issue as it affects my ability to work and concentrate. I have also been getting pains in my hip this week and in my shoulder.

I'm only 35, but sometimes feel like I'm aging before my time!

Do these symptoms sound like they might be Dysautonomia? I have another appointment with my doctor next week and feel I nbeed ideas to take to him as he can't suggest anything else to me!

Please please help if you can.

Thank you in advance,

Louise
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Louise,

First off, sorry you are having such problems.  Many of your symptoms are the same as my sons and he has been diagnosed with POTS.  He, too, has nausea daily, all day but varying in severity.

Do you have a blood pressure cuff?  If so, you could give yourself the 'Poor Man's Tilt Table Test'.  This is where you take your heart rate/bp while lying down, again when standing up and again after standing for 3 minutes.  If your heart rate goes up 30 or more this would be an indication of POTS.  Though, I should say my son's doesn't always go up 30.  

They have found my son's nausea to be neurological not GI related, even though he had GI issues (gastropareisis-which he no longer has).  As for your joint pains, are you hypermobile?  My daughter (19) was just told by her PT that she is hypermobile in her knees and elbows and we never knew it.  She also has joint pain, with some symptoms of POTS but much milder than my sons.

Christy
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Hi Louise!

You mention you have had blood tests- does that include auto-immune related blood testing, thyroid function, fasting blood sugar, ferritin & iron and for celiac disease?  Did they also check to see if you have gastroparesis with your GI testing, such as with a gastric emptying study and also were there any signs of acid reflux with the barium swallow?  When they ruled out rheumatoid arthritis, did they also check for positive trigger points to see if you might have fibromyalgia?  If you wake up with headache and tiredness each morning, have they done a sleep apnea test on you?

Please see private message for more info.
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