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BrieAllen

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Hi my name is Brie and I was diagnosed with cvs in Oct.2016. I’m now having these complications and I’m wondering if they’re related. I have chronic cystitis,on and off again migraines, night sweats/chills, and pain in my neck/back. I’m also wondering if sex is a trigger for episodes? Has anyone been told the cvs comes from something either hormonal or neurological? Just trying to make the best of what is now my new normal
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ginny

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Hi Brie, I am sorry you are having a struggle with CVS.  I don't know of a relationship with cystitis although there are some kidney disorders with symptoms similar to CVS.  One is UPJ disorder, discussed in the Empiric Guidelines (on the CVSA web page).  Migraines have a relationship to CVS for many.  Night sweats and chills could be a symptom if these are around the time of an episode but otherwise a hallmark of CVS is to be well in between episodes. 

I think the doctors are leaning toward a neuro mitochondrial connection as the cause of CVS or at least pediatric onset CVS.  Many do have hormones as a trigger but just as many have weather changes, allergies, stress, foods, and just life in general as a trigger.  

Neck pain and back pain can have many causes. Do you now if the problem is more muscular, or nerve based or disk related? I am not aware of these areas being related to CVS but you could do some damage with vomiting, and if you are so sick you cannot get enough Vitamin D you might have some bone pain from low D.  A blood test will help with the D.  

If you have not had an u/s of your kidneys you might request one.  There are certain tests suggested as best done during a cycle, and others can be done in between cycles.

Please let us know how you are doing.  If your doctor approves you might do well on the CVS supplements (pinned to the Main Message Board forum).  

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ginny CVSA Moderator
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