Surviving and Thriving with Chronic Illness

My Symptoms - Part 2

Dr. Diana, as Patient, continues to explain what it feels like to have Ehlers-Danlos, dysautonomia, CCSVI and some symptoms of MS. She discusses her progression over the last 7 years.

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Dear Doc
I was just released from the hospital yesterday after a week long battery of tests. I also have classical EDS. I was diagnosised at Vanderbilt in 2004. Since moving to Texas I have found no EDS doctor. Call me lazy. I spoke to your husband a year ago after I heard about you. I have been instructed by the hospital internal medicine doctor to make an appointment in the next week at your eye clinic to get an exam for eye disturbances. I often feel drunk without drinking. I get nausa and the blackout if you can call it that, but it is so exhausting to have these eposides. I can relate to most of you symptoms. I am so tired sometimes. I still work full time but I am so much slower than I used to be. I sometimes just stare at my desk. I just want to say thank you!

Your website is great!!! I appreciate your time and efforts.

Hi Tamara,
Wow, you are still able to work. I know what an incredible effort that takes. You rock. I think we’re making some progress on the exhaustion. (‘fatigue’, my arse).  Hang in and thanks for watching! Big hug,

Hi Michelle,
Thank you, Sweetie, for your encouraging words. They keep me going (along with my 17 meds and supplements. ha).
I’m so glad the site helps you!

Yes, yes, yes. It’s bizarre to hear so many of my symptoms (many of which I have never seen in EDS information resources) be described by you. I thought that hearing your pulse in your ears was normal (when my heart is racing it’s so loud I can’t focus on anything else)...and seeing/feeling the pulse in your abdomen… I have so many symptoms of classic type, but I have been in pain daily, for as long as I can remember, so what you say about hypermobility type really resonates. Can you believe I haven’t been diagnosed? ugh! I wanted to ask about subluxation of joints. I don’t think that I’ve had that, but if it’s possible to be subtle and not extra painful, maybe I just don’t notice? I can no longer sleep on my sides, because my shoulders collapse in towards each other, and it’s incredibly painful when I wake up. I get my shoulders back into place, but it hurts pretty bad and there is a lot of crunching and popping, but I don’t know if it’s subluxation? The points where my ribs meet my sternum feel like each spot has a knife stuck in it. I did want to say that I took your advice and got a soft cervical collar, which I have been wearing all day since I bought it, and it has already helped relieve the immense burning ache in my cervical spine area! I’ll try it tonight for sleeping.  Bless you Dr. Diana!


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