[RSD ME]

The following article came for rsd hope research. It's about a possible connection between Cyclic Vomiting Syndrome, CRPS and DNA.

I'm not quite sure what CVS is but I am curious about it because I was bulimic when I was a teenager for a few years. (Something I am so not proud of.) I wonder if there is some relation between Bulimia and RSD. But I don't know if CVS is similar to Bulimia.
Just thought I'd post it and see if anyone else has ever heard of this. Well here is the article that was cut and pasted from RSD Hope:

Cyclic Vomiting Syndrome - Connection between CVS, CRPS Type I, and DNA? YES!
Some people had written in and asked us to clarify some terminology used in the research article described above, done at Children's hospital in Los Angeles. At the same time we thought it might be interesting for everyone to read about one of the many connections this has to our community and realize the possibilities it might hold for helping others in the future.

Some of you may have heard of a child being diagnosed, or even been diagnosed yourselves with CVS, aka Cyclic Vomiting Syndrome. You might not have known that there is a connection between CVS and CRPS, as well as

CYCLIC VOMITING SYNDROME - GENETICS HOME REFERENCE

This isn't a new article, since it was done in 2009, but I recently came across this on the NIH website, in the area devoted to Genetics. It describes what Cyclic Vomiting Syndrome is; what the genetic changes related to it are; and how people inherit it. Why is this important?

In the combined research grant described above, Doctor Boles investigated mitochondrial DNA.

and

Cyclic vomiting syndrome

Cyclic vomiting syndrome may be related to genetic changes in mitochondrial DNA. Some of these changes alter single DNA building blocks (nucleotides), whereas others rearrange larger segments of mitochondrial DNA. These changes likely impair the ability of mitochondria to produce energy. Defects in energy production may lead to symptoms during periods when the body requires more energy, such as when the immune system is fighting an infection. However, it remains unclear how changes in mitochondrial function are related to recurrent episodes of nausea and vomiting.

Also, there is this study;

conclusion? Overall, maternal inheritance is suggested in 86% of the families (in 65% strongly so). Disease manifestations in subjects and their affected matrilineal relatives are predominately intermittent and consistent with dysautonomia, including increased vital sign fluctuations. Body fluid metabolites and muscle biopsy findings are consistent with mitochondrial dysfunction in most cases tested. We conclude that mtDNA sequence variants are at least risk factors in the development of disease in most children at this "severe" end of the CVS spectrum, likely involving a maternally inherited propensity towards dysautonomia.

Many studies did link CVS and DNA and CRPS,

such as this one;

And others, such as this one which was also done at the Children's Hospital in Los Angeles, that showed a clear predisposition to CRPS Type I in children with certain mitochondrial DNA sequence variants. Here is the Abstract from this particular Study, but understand that there are many to choose from on the internet. The information is out there to find folks! Amazing Doctors have already done some great work, but much more is needed to be funded and done.

Abstract

OBJECTIVE: Complex regional pain syndrome type I (CRPS-I), previously known as reflex sympathetic dystrophy (RSD), is an idiopathic condition characterised by localised, abnormally intense and prolonged pain, allodynia and autonomic nervous system changes (ie, swelling, skin colour and temperature changes and altered perspiration) that usually appear following a "noxious" trigger such as trauma or surgery. The objective of this report is to demonstrate that children with CRPS-I can have additional dysautonomic conditions secondary to an underlying maternally inherited mitochondrial disease, an association not previously published.

METHODS: Medical records of about 500 patients seen by one paediatric metabolic geneticist were reviewed to identify children meeting established CRPS diagnostic criteria.

RESULTS: CRPS-I was present in eight children in seven families, each of which also had additional functional/dysautonomic conditions, the most common (> or = 4 cases per condition) being gastrointestinal dysmotility, migraine, cyclic vomiting and chronic fatigue. All seven probands studied met Nijmegen (2002) diagnostic criteria for definite mitochondrial disease on the basis of the clinical signs and symptoms and biochemical analyses. Six of the seven families met our pedigree-based criteria for probable maternal inheritance.

CONCLUSION: In one tertiary-care paediatric genetics practice, children meeting the CRPS-I diagnostic criteria frequently had additional autonomic-related conditions secondary to maternally inherited mitochondrial disease, suggesting that mitochondrial DNA sequence variants can predispose children towards the development ofCRPS-I and other dysautonomias. CRPS-I should be considered in patients with mitochondrial disease who complain of idiopathic pain. Maternally inherited mitochondrial disease may not be a rare cause of CRPS-I, especially in children who present with other manifestations of dysautonomia.

For more on this study

Why is that link important? Why is it important that there is a connection between CRPS and DNA?

Read further on DNA - CRPS CONNECTION? in the next section following this article.
copyright © 2013 American RSDHope
Complex regional pain syndrome, CRPS, reflex sympathetic dystrophy, RSD, what is crps?, RSDHope, nerve pain, ketamine, RSD Hope, nerve blocks, crps symptoms, mcgill pain index, crps treatment, crps research, national crps awareness, opiods, pain medication, pain support groups, four main symptoms of crps,

[RSD ME]

Originally Posted by RSD RENEE

The following article came for rsd hope research. It's about a possible connection between Cyclic Vomiting Syndrome, CRPS and DNA.

I'm not quite sure what CVS is but I am curious about it because I was bulimic when I was a teenager for a few years. (Something I am so not proud of.) I wonder if there is some relation between Bulimia and RSD. But I don't know if CVS is similar to Bulimia.
Just thought I'd post it and see if anyone else has ever heard of this. Well here is the article that was cut and pasted from RSD Hope:

Cyclic Vomiting Syndrome - Connection between CVS, CRPS Type I, and DNA? YES!
Some people had written in and asked us to clarify some terminology used in the research article described above, done at Children's hospital in Los Angeles. At the same time we thought it might be interesting for everyone to read about one of the many connections this has to our community and realize the possibilities it might hold for helping others in the future.

Some of you may have heard of a child being diagnosed, or even been diagnosed yourselves with CVS, aka Cyclic Vomiting Syndrome. You might not have known that there is a connection between CVS and CRPS, as well as

CYCLIC VOMITING SYNDROME - GENETICS HOME REFERENCE

This isn't a new article, since it was done in 2009, but I recently came across this on the NIH website, in the area devoted to Genetics. It describes what Cyclic Vomiting Syndrome is; what the genetic changes related to it are; and how people inherit it. Why is this important?

In the combined research grant described above, Doctor Boles investigated mitochondrial DNA.

and

Cyclic vomiting syndrome

Cyclic vomiting syndrome may be related to genetic changes in mitochondrial DNA. Some of these changes alter single DNA building blocks (nucleotides), whereas others rearrange larger segments of mitochondrial DNA. These changes likely impair the ability of mitochondria to produce energy. Defects in energy production may lead to symptoms during periods when the body requires more energy, such as when the immune system is fighting an infection. However, it remains unclear how changes in mitochondrial function are related to recurrent episodes of nausea and vomiting.

Also, there is this study;

conclusion? Overall, maternal inheritance is suggested in 86% of the families (in 65% strongly so). Disease manifestations in subjects and their affected matrilineal relatives are predominately intermittent and consistent with dysautonomia, including increased vital sign fluctuations. Body fluid metabolites and muscle biopsy findings are consistent with mitochondrial dysfunction in most cases tested. We conclude that mtDNA sequence variants are at least risk factors in the development of disease in most children at this "severe" end of the CVS spectrum, likely involving a maternally inherited propensity towards dysautonomia.

Many studies did link CVS and DNA and CRPS,

such as this one;

And others, such as this one which was also done at the Children's Hospital in Los Angeles, that showed a clear predisposition to CRPS Type I in children with certain mitochondrial DNA sequence variants. Here is the Abstract from this particular Study, but understand that there are many to choose from on the internet. The information is out there to find folks! Amazing Doctors have already done some great work, but much more is needed to be funded and done.

Abstract

OBJECTIVE: Complex regional pain syndrome type I (CRPS-I), previously known as reflex sympathetic dystrophy (RSD), is an idiopathic condition characterised by localised, abnormally intense and prolonged pain, allodynia and autonomic nervous system changes (ie, swelling, skin colour and temperature changes and altered perspiration) that usually appear following a "noxious" trigger such as trauma or surgery. The objective of this report is to demonstrate that children with CRPS-I can have additional dysautonomic conditions secondary to an underlying maternally inherited mitochondrial disease, an association not previously published.

METHODS: Medical records of about 500 patients seen by one paediatric metabolic geneticist were reviewed to identify children meeting established CRPS diagnostic criteria.

RESULTS: CRPS-I was present in eight children in seven families, each of which also had additional functional/dysautonomic conditions, the most common (> or = 4 cases per condition) being gastrointestinal dysmotility, migraine, cyclic vomiting and chronic fatigue. All seven probands studied met Nijmegen (2002) diagnostic criteria for definite mitochondrial disease on the basis of the clinical signs and symptoms and biochemical analyses. Six of the seven families met our pedigree-based criteria for probable maternal inheritance.

CONCLUSION: In one tertiary-care paediatric genetics practice, children meeting the CRPS-I diagnostic criteria frequently had additional autonomic-related conditions secondary to maternally inherited mitochondrial disease, suggesting that mitochondrial DNA sequence variants can predispose children towards the development ofCRPS-I and other dysautonomias. CRPS-I should be considered in patients with mitochondrial disease who complain of idiopathic pain. Maternally inherited mitochondrial disease may not be a rare cause of CRPS-I, especially in children who present with other manifestations of dysautonomia.

For more on this study

Why is that link important? Why is it important that there is a connection between CRPS and DNA?

Read further on DNA - CRPS CONNECTION? in the next section following this article.
copyright © 2013 American RSDHope
Complex regional pain syndrome, CRPS, reflex sympathetic dystrophy, RSD, what is crps?, RSDHope, nerve pain, ketamine, RSD Hope, nerve blocks, crps symptoms, mcgill pain index, crps treatment, crps research, national crps awareness, opiods, pain medication, pain support groups, four main symptoms of crps,

I hope I didn't gross you all out with this thread, but I keep hoping if someone can find a connection to rsd, then maybe we can find a cure sooner than later. (Even if it means exposing some parts of my life I'd rather forget.)
(Sorry if I made you feel uncomfortable.

[tos8]

CVS is typically in very young children. I actually have a friend and her child has it unfortunately, its a terrible condition! Typically they out grow from it between the ages 7-10yrs. More common in female then male. And it causes a really bad migraine and severe pain in the stomach, which the drs say its like the stomach has a migraine. I guess because your cycle just like chronic migraine suffers do. It usually causes a lot of admissions to the hospital because of pain and meds needing to be adjusted. Even though my friend child is very young, hes on typical drugs like adults with doses just as high, gabapentin, DHE, pain meds etc.. to try and stop a CVS cycle from happening.

[AintSoBad]

I get nauseated by the pain. Ask your doc for 'promethazine' a cheap medication that is given to cancer patients on their therapy. It works well for me.....
I wish you the best!

Pete
ASB

[tos8]

Same here! Its the only one that works for me.

Originally Posted by AintSoBad

I get nauseated by the pain. Ask your doc for 'promethazine' a cheap medication that is given to cancer patients on their therapy. It works well for me.....
I wish you the best!

Pete
ASB

[Rsdawareness123]

I am 2 months from eighteen years olds have had Cyclic vomiting syndrome since age eight and suspected before that as well. Cyclic vomiting syndrome is syndrome in which the sufferer vomits frequently episodes can last from 1 hour to 10 plus days. Causes horrible abominable pain, Nausea, vomiting, malnutrition, dehydration and more. Cvs is believed to be related to migraines. Cvs is not intentional whereas Bulimia is i.e. Cvs sufferers do not stick there hand down their throat and try to cause vomiting to lose weight. It is not a mental illness. I am sorry you sorry from rsd I have had it for nine it is horrible. I am sorry you had bulimia i am sure that must be horrible andd hard to treat i hope you are having a low pain day today.

[RSD ME]

I am sorry you have CVS. I realize that it is not the same as Bulimia. But I can't help but wonder if the constant vomiting (whether it be from CVS or Bulimia) relates to RSD somehow. And as for sticking one's hand down their throat to vomit, that is incorrect. It was just one finger. And after a while you don't even need that. You can vomit by just bending over a toilet and thinking about it. It's sad but very true. I am not comparing CVS and Bulimia for I know that CVS is not self induced and Bulimia is. I had Bulimia for a few years in high school when my Grandmother was dying. She lived with us all my life and was my best friend. She died after a long and gruesome death from rhuematoid arthritis. It was horrible to see and not be able to help her. I saw her when she passed in the hospital. Her one foot was so bad from the RA that it turned black from gangreen. I will never forget the way she looked that last time as I kissed her goodbye. Yes, Bulimia is a mental illness. It comes from not being able to control outside factors in our lives (like seeing my grandmother die from RA). Bulimia was a way of gaining control of something in my life, during a time where I had no control of helping my grandmother get better from RA. Bulimia is also a way of causing physical pain to oneself by vomiting, so that it distracts the person from the emotional pain they are going through (like me seeing my grandmother dying before my eyes.) I sought professional help and got control of it. I am no longer Bulimic, but my teeth have suffered from it. I have also suffered from clinical depression which is worse because of rsd. And though bulimia is self induced, it is sort of like being an alcoholic. You can't control it any more then an alcoholic can control their drinking. It is a form of clinical depression and OCD (obsessive compulsive disorder which I also have had since I was a kid). I am sorry you have CVS. It must be horrible to not be able to control it. But please understand that it is very hard to control bulimia without the proper professional help. I luckily got professional help but it took a long time to get control of it. It is a horrible illness to have. It's not like CVS which is a physical illness. But it is a mental illness that causes physical harm. I urge anyone who has bulimia to get professional help so that they don't die from it. Yes, it can be that serious. And I also urge anyone who has bulimia to not be embarrassed from it. It is a mental illness that comes from living through a traumatic event that we cannot control. It's not about loosing weight and looking good. It goes much deeper than that. I am sorry you have CVS on top of RSD and hope that you feel better soon too. I wish you a low pain day as well. Take care.

P.S. A health care provider may prescribe the following medications for both children and adults during the well phase to prevent cyclic vomiting syndrome episodes, lessen their severity, and reduce their frequency:
amitriptyline (Elavil)
propranolol (Inderal)
cyproheptadine (Periactin)
Maybe you can check with your doctor to see if these meds to help control your CVS. I hope that maybe they can help or maybe some other meds your dr can prescribe can help. Take care.

[Lottie]

Renee, I am so sorry you went through such a difficult time in your life. You are such a strong woman to seek help and overcome this potentially life-threatening disease. Thank you for the informative story. If it helps just one person it will be worth it. Thanks for being brave enough to share ~ Lottie

[RSD ME]

Thanks Lottie. It means alot to me that you care so much. It's not an easy thing to talk about, but I just want to try to let people know how awful it is and why people do it. It's not a proud moment in my life, but it happened to me while I was suffering emotionally at the sickness and loss of my grandmother. I just hope that if anyone has bulimia that they will get help asap. You can be cured, but it takes work and self love. You also have to learn how to deal with life's tragedies in better ways. Hurting one's self isn't the answer. I hope that I helped people who have it not to be embarrassed and to get help. And I hope that people who are thinking of doing it, don't. It's not the answer to your problems. Well, thanks again for listening and caring. I didn't mean to ramble about this subject, but I sometimes feel it misunderstood like rsd is, and I wanted to explain why people do it. My mother never understood and was ashamed of me. She didn't want to help me, she just called me crazy and avoided me. She did have me see a dr, but wouldn't go in with me and didn't want to talk about it afterwards. Appearances were more important to her then helping her child overcome such a serious illness. She still calls me crazy for what I did. She will probably never understand which perplexes me because she has had clinical depression and OCD all her life and my father was an alcoholic. I know she loves me in her own way, but she can't seem to understand what I was going through and my dad who also loved me in his own way, couldn't understand either. That's okay. I've moved on. But I want people to know that they are NOT crazy for doing it and shouldn't be ashamed. It's a mental illness that needs a professional dr to help them overcome it. If you are bulimic, you can overcome it and you have to overcome it or it could kill you. Stand strong and tall and be proud of who you are and get some help from a dr. Don't give up hope, it's out there, you just have to look for it. With love, Renee.

[Rsdawareness123]

Hey im sorry i hope i didn't offend you you shouldn't be ashamed i am so sorry about your grandma i hope life has less suffering in store for us i commend you for getting help for bulimia i know it must have not been easy sorry for the confusion i didn't mean a whole hand to make one sick i have tried all those meds for cvs with no luck but thanks for the suggestions it is a hard disease to treat as i am sure bulimia is i am so sorry your mom treats you that way i wish she was more accepting you are obviously very smart and brave and hope you have an easier road ahead