CFAPS- Anyone on here with a Chronic Functional Abdominal Pain Diagnosis?

I haven't even heard of CFAPS.


How was it diagnosed, PeppermintTea?

We hadn't heard of it either until last year.

Daughter was experiencing intense around-the-clock stomach pains (pain scale 6-7). Within 20 minutes of eating she would experience excruciating pain (pain scale 9+) and drop to the floor. She also around this time began to develop dermagraphia, fainting spells and more.

She was tested for everything under the sun (colonoscopy, endoscopy, hida scan, sibo, and tons of blood work). She was also removed from ABX during this time.

We finally were referred to Boston Children's Hospital under the care of Dr. Nurko. He, and his team, diagnosed her with Chronic Functional Abdominal Pain. Patients with this diagnosis do not show, via test, any reason for the pain. However many of them have POTS and hyperflexibility.

Treatment is an SSRI. She was given 20mg of Citalopram. Told to remove irritants from her diet and advised to take peppermint pills. Pain reduced to almost a zero in 2-3 weeks!

CFAPS is describes as poor programming between the gut and brain. Where the typical person does not experience the gut doing its normal functions and communicating with the brain a CFAPS patient has the radio turned up and senses everything.

My reasoning for querying this group is that my daughter has also been diagnosed and treated for Rocky Mountain Spotted Fever (known for its stomach issues) and is entering treatment again for the 3 B's (I know of the Bells Palsy of the Gut). I was curious if anyone else had both the CFAPS diagnosis and TBI's.

https://www.med.unc.edu/ibs/files/educational-gi-handouts/Antidepressants%20as%20IBS%20Treatment.pdf

Warmly -


Peppermint Tea

Girlie, she has had stomach aches since she was 3 or so. CFAPS really developed last year. I have an itching suspicion it was tick bite triggered.

Sabre, welcome to the forum! I'm so sorry to hear what you have been going through. I hope that someone here has insights for you that can help you get to a better baseline and resolve some issues.

CFAP is caused by something, probably something neurological, so I'm curious if anyone here has found a neurologist who has been helpful. Lyme and other infections can influence the nervous system so strongly, so people try a great many remedies for neurological health. Have you seen any improvement with the herbs, mind-body medicine, limbic system retraining, magnesium, or other treatments that people use for neurological symptoms?

What came to mind for me when reading your post was cannabis. I have read a lot about people with opioid dependency using cannabis to manage symptoms while treating the addiction. It's also a great option for insomnia and depression, depending on the strain. Do you live somewhere with legal recreational cannabis or medical cannabis? The right strain, or even just CBD, could be helpful. These days there are so many options in terms of strength, properties, and forms.

I was prescribed an antidepressant for migraines, and not only did it not help the migraines, it wrecked my gut, caused swift and intractable weight gain, triggered IBS, and took months to wean myself off of, during which time I had freaky "brain zaps." I don't mean to discourage you from trying an antidepressant if that is what you decide is your best option, but I like to point out that they can be a wildcard. The mechanism of action isn't well understood, and people react to them all differently. It can take months before you see a benefit, but if you find one that's a good fit for you, then maybe it can give your nervous system a break and help to facilitate your turn away from the neuronal pathway that's triggering the pain.

I look forward to reading more replies!

Sabre,

Welcome! So sorry for all you have been through. Did you recall anything around the time the pain began that might have triggered it? Have you had any hypotheses of how and why this occurred?

Those of us with Lyme have been through many things and have a wide range of collective knowledge because Lyme affects so many body organs and systems.

All,

This is my first forum experience and if I need critiques on my interactions with fellow forum participants, don’t be shy.

I’m hoping to learn more about my condition and possible treatments.

Thanks

Sabre

Duncan - I'm with you about the terminology and that attitude it comes from. Something is causing the pain, or something caused it originally and has created a neuronal pathway that perpetuates it erroneously now. Either way, that patient needs treatment, not dismissive physicians.

Sabre - I learned a lot from the chronic pain app Curable. Even if it does not all resonate, I recommend joining the app for a month or two and listening to their education podcasts. Some podcasts are available for free as well. It's a mind-body medicine app, and they explain right away the physiology of pain and the nervous system. It's fascinating, and it's science that many even in the medical field have zero clue about yet.

When in-person treatments are safe again, then another thing to try is embodiment therapy, if you can find a practitioner. I found a craniosacral therapist who also practices embodiment, and it helped me to resolve some mysterious chronic pain. (Craniosacral therapy itself also is the coolest.)

Sabre,

In 2015, my immune system fell off the cliff after a bout of bronchitis. It set off a chain of unexplained inflammation and pain that went on a long march from my head to my chest to my intestines. When it got to my intestines, it was like my intestines went into lockdown mode. Felt like they were being squeezed in a vice grip.

The pulmonologist PA sent me to a gastroenterologist for suspected “silent reflux.” By the time I got in to see the gastro, my bowels were starting to shut down. Had a bunch of different tests. Nothing was found except a little constipation. The gastro said “it’s functional.” Not knowing the medical definition of “functional,” I said I KNOW it’s functional. My intestines quit functioning!!! Then he said, “I think you have IBS.” No explanation whatsoever of what would cause my intestines to suddenly stop working.

That was my last attempt at getting help from a conventional doctor. I then went to a chiropractor who put me on an elimination diet and some supplements. After 6 months, I realized she didn’t know how to fix me. I then went to a Functional MD who did tests I had never had before and uncovered CIRS from mold and eventually Lyme disease. (I had a mystery illness that began in 2009. What happened in 2015 was the result of long term immune suppression from mold and Lyme/coinfections that sent me off the cliff.)

If you have not seen a Functional MD or environmental doctor (there’s a clinic in Charleston, SC), that would be my next step. They are more likely to get to the root cause(s) rather than slap on a label and push a pill. These doctors rarely take insurance and some of the testing they do may not be covered by insurance. They are light years ahead of conventional medicine, however.

If you come across someone who just wants to “try” elimination diets and various supplements, you will find yourself in a very long, expensive guinea pig project. I don’t mind being my own guinea pig, but I do mind being someone else’s!

Post Edited (WalkingbyFaith) : 10/23/2020 10:35:11 AM (GMT-6)

WalkingbyFaith,

Thanks for the tips and suggestions. My doc just had genetic/dna testing completed for me. Tests showed a partly missing strand of dna relating to inflammation suppression. Another strand was partly missing the dna responsible for secreting brain enzymes that help determine mood. These are overly simplistic definitions for a non-scientific mind, mine. Lol!

Now, what to do with these test results? My doc and I are still looking into that. As a start I’ve begun using cbd oil and a supplement called PEA. I’ve never used medicine that’s outside the box or been big on using supplements. That mindset has changed. I’ve used chiropractic medicine with little or no results, but I’ve had great success with massage therapy for motorcycle injuries. I’ve just begun my exploration of my options. Since finding this forum I’m guardedly optimistic about finding some relief.

Unfortunately my financial situation won’t allow me to explore some options that insurance won’t cover.

Thanks again for your reply.

Sabre

Tbine628,
I’m sorry to hear about your daughter. It’s terrible for anyone to be in chronic pain. It’s especially hard on a teen while going through a pandemic. I hope she finds relief soon. Please stay in touch and let us know what’s happening.
Sabre

To the forum,

After doing more research I thought I would provide additional details about my pain. In the beginning (8years ago) I tried eliminating everything from my diet I thought would adversely affect me. I tried to stop eating one food at a time in order to gauge my reaction. At one point I ate only baby food. Nothing helped. But I did learn that eating or drinking the following would literally send me to the emergency room.
1) Orange juice or oranges
2) Beer
3) Bacon
4) Any type of mint especially peppermint
5) Sometimes drinking a single glass of water first thing after waking up.

It’s strange that hot spice doesn’t cause a pain episode. As of today only the foods I’ve listed ever cause immediate pain. My day starts with pain every morning until my meds kick in. It’s unusual that the pain doesn’t interfere with sleep. I’ve been taking opioids for 8 years and I’m building a resistance to them and they aren’t regulating my pain as well.The last 4 years I have experienced an increase in my level of depression. My doctor recently asked me to start seeing a psychiatrist and a therapist. My experience so far hasn’t been positive. The psychiatrist insisted I try Wellbutrin even after I explained I had a previous negative experience.

I have plans to move to Florida soon and I’m more than worried about finding a doctor before I move. My current doctor has promised to talk with anyone I find personally and discuss my situation. Perhaps I can avoid the problems dealing with a new doctor and convincing them I’m not shopping for recreational drugs.? I’m also hopeful that a new doctor may have a new approach for diagnosis and treatment.

I hope and pray participants of this forum have continued good health.

Sabre