Sunday, July 24, 2011

The Chronic Pain of CVS


Sculpture by O. Zadkine, Paris - photo by Green Eye

  CVS = Cyclic vomiting syndrome


Cyclic vomiting syndrome (US English) or cyclical vomiting syndrome (UK English) (CVS) is a condition whose symptoms are recurring attacks of intense nausea, vomiting and sometimes abdominal pain and/or headaches or migraines. Cyclic vomiting usually develops during childhood at ages 3–7; although it often remits during adolescence, it can persist into adult life. (Wikipedia definition, link below post)
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The young woman awakes, hoping for ‘normal’ but fearing the worst. Will there be more gut-wrenching pain that wraps around from the stomach to the back, and the unbidden nausea that is a chronic side effect? On a good day, she will be able to get up early or mid-morning and eat breakfast. If that poses no problem, then she may be able to do some household chores, or even work when that occurs. When it’s a bad day, everything squeals to a halt until the pain is attended to or runs its course for one to several days.


For relief and the ability to do the basic things, she has medications to help quell the effects of the CVS syndrome. There are pain medications prescribed including nose sprays or pills that melt in the mouth, hydration to replace the lost fluid, and nausea pills. Sometimes a combination of these will work and sometimes they won’t. As a last resort, the doctor’s office will administer a shot to stop the spasms of the stomach. Sleeping for several hours is usually needed to recover from an intense bout, or incidences that last longer than three days.

A mild attack of CVS will last one day, but the length of time can vary depending on other factors that come into play. Hormone fluctuation, stress, a lowered immune system due to a cold, lack of sleep/insomnia -- any of these can trigger the start of the pain spasms in the stomach. One doctor said we all get butterflies in our stomach, but a person with CVS gets “tigers” in their stomach.

There are websites for this rare condition, but no cure that this young woman has been able to find. Managing the disease may be an ongoing factor in her life, even though some believe that the frequency and intensity will reduce, if not disappear at certain ages, e.g., after puberty, in early adulthood, etc. That hasn’t happened yet. Various tests can be scheduled to check the condition of the stomach. Other tests which must be done in a hospital, such as scoping of the upper or lower digestive system, are sometimes required after other causes such as ulcers are ruled out.

All the basic mundane things that we have to do everyday become a real chore when the body fights itself, or causes intense pain. When that pain is internal and not visible like a wound, others can doubt its validity, forcing the person who is ill to be constantly on the defense.

CVS affects males and females, with more incidences occurring in the female gender. That may be due to the difficulty in diagnosing this rare condition that has symptoms common to several other diseases. The search will be ongoing to find better solutions, but finding support is difficult when costs are being cut in many health services. Researching several different mobile nursing services revealed that they aren’t prepared to take on-call requests for administering injections.
 
There are many voices in the cities that we don’t hear. This post is an attempt to promote understanding of this debilitating disease, by describing some of the challenges of the person coping with it. 

Sites to check for more detailed information:

Cyclic Vomiting Syndrome Association

Definition of the disease

National Digestive Diseases Information Clearinghouse (NDDIC) (US)

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Reference Post: The Parent, the Child and the Disability (a parent's viewpoint)


NOTE: The name of the person referred to in this post has been withheld for privacy.

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Mural in Vancouver, BC - photo by DGH

4 comments:

  1. I appreciate posts like this, promoting education and awareness. Good mix of personal (notes from the perspective of a person with this disease) and informative writing here!

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  2. Thanks, J. This post is an attempt to help inform others and direct those interested to the useful sites. It's one of those subtle diseases that many have never heard of.

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  3. Oh. My. Goodness. This is a horrible disease - I'd never heard of it. Though coincidentally, some of what I've been suffering is similar. My dear doctor doesn't give up until he finds a SOURCE of a set of symptoms, while he does treat the symptoms until that source is found. I really like that. I've had too many "take this pill and I'll see you later" doctors to last me a lifetime. My asthma, though we've long known is illness induced, this time has persisted on, and has manifested its longevity in what to me seemed like the return of whooping cough, which I had in 2010. I'd wake up to horrible coughing and vomiting spasms that would last about a 1/2 hour, and then I'd be spent for the day. Literally. No energy. In bed. No chance of anything else. This went on and on. Finally the doc connected my acid reflux (the med for it was no longer showing up on my miles long med list because it's now over the counter, so it wasn't in the front of his mind after 5 years of no prescriptions - I don't blame him for not thinking of this before, since I just kept saying, "It feels just like when I had whooping cough." Long story short (and sorry this is so long already) he's now treating the acid reflux much more aggressively, and that's what has finally helped me "turn the corner". I still have a long way to go. Please give this brave young patient my thoughts and prayers for healing and that someone in CO is thinking of them and wishing them the best in the midst of this struggle.
    D.J - thanks for coming by today and caring enough to share this with me. I appreciate you.
    Tina @ Life is Good
    http://kmdlifeisgood.blogspot.com/

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    Replies
    1. Connecting with others who understand an illness helps for those who must live with it. I will pass on the comments.

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