Chiari Malformation Community
Chiari 1 and Elhers Danlos
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Chiari 1 and Elhers Danlos

I have Elhers Danlos Syndrom (syndrome) and Chiari 1.  I have been told they go hand and hand is this true?  I have tried to go back to work but it seems I miss more work then go to work lately. I get sick really easy.  Somedays it s difficult for me to go from my bedroom to the kitchen.  Somedays it is all I can do is to get to work.  I get migrains were I loose my speach, my vision and they last up to 4 to 5 days.  when they happen I end up having to go and get  shot from my doctor to break the cycle.  no meds seem to help and believe me I have tried most of them.  Is this just something I am just going to have to deal with.
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620923_tn?1405964489
Hi and welcome to the Chiari forum.

I too have both....I am approaching my 1 yr anniversary of my PFD.....how long since u had urs?

Have u been to a rheumatoid dr that specializes in EDS?

I had the same issues that u mention but it was all prior to my surgery....and it went on for yrs like that and got progressively worse.I have not gone back to work since my surgery as I was told I still am not able to drive, and need 2 more surgeries for stinosis and tethered cord.

Have u been checked for other issues like a syrinx or TC?

We r happy to have u join our little family here, so sorry for the reason u had to seek us out.
Below is a link to the ehlers danlos group here on MedHelp.

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417?camp=msc&personal_page_id=1393327

"selma"
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1285653_tn?1288362229
These are all symptoms for me too. Learning to deal with them is very hard.

I DO miss more work then go to work lately. I get sick really easy.  Somedays it s difficult for me to go from my bedroom to the kitchen.  Somedays it is all I can do is to get to work.
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