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I am writing to ask all of you a favour. I live in a south coast of UK. I was diagnosed with chiari in 2014, because I was pssed out and being taken in A&E, I have never blamed my health care professionals team but myself, I have been suffering from neck, back, anckle, shoulder pain, I also have lots of chrnic fatigue syndrome from over 15 years..my gps told me that I was suffering from FM (Firbromyalgya) they asked me to slow down, accept my condition, but me being workoholic and being executive hqave lots of team and enjoyed my role so much I just take no notice..I alwys think to myself that FM or sickness is ''a state of mind'' and mostly what I call as a lazyness..so I keep forcing and strhrving myself..until last year.2014..when I became houebound and have to give I up my job completely..as I could not put up with the pain..so I was given so many medication..but none of them were really helping..so..when i MET my health care team either GP/s NEUROLOGIST/S OR NS/s I said to them..Look: '' I would rather die..!!! then being living like this..what can you do to help me?? please..I was crying,...I said,,,,please..please help me..you suppose to cure me..I come to you..so that you can make me better..?!!!..just honestly tell me..how can I HELP YOU..TO HELP ME????, I DONT WANT TO LIVE LIKE THIS... i LIVE LIKE VEGETABLE..., AND GUESS WHAT THEY SAY? : well to be honest with you.. we do our best to help you..we try to managing your pain..chiari can't be cured the only thing we can do is to operate you..but the main goal is only to relieve the pressure of the CFS flow...so that you would not have the headache..if you have any other condition that might..you can think qbout it..have several opinions and decide if you like to go ahead with the operation...some people never come back they carry on with their quality of life, some peope might come back..so..they explained it to me very honestly..basically..they were very honest..inside and out giving me also the pros and contras, benefit and risk etc..etc....
SO I HAVE THE CONCLUSION THAT IN ALL HONESTY IN MY AREA THE HEALTH CARE PROFESSIONALS LIKE THEY TOLD ME..HAVE A LITTLE KNOWLEDGE ABOUT THE CHIARI IT SELF.
For this reason..I would be grateful would you mind to share with me..would you like to post me a message..what would you expect from a health care professional in your point of you should do in term of our condition? because I am going to meet up with them and let them know what should they do to increase the level of awareness of chiari and what is our expectation as chiarian.
I know we might not benefit it, but others who might suffer like us from this area or perhaps other area (health care professionals do move around) might benefit from their undersstanding.
I valued your feed back and support.
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