Chronic Fatigue/POTS/IBD & the Gut-Neck Axis

“I worked with a chiropractor prior to my orthopedic neck surgery. As I described my FM/CFS symptoms, he said, “What did you do to your neck?” I mentioned I’d been in a serious car accident 10 years earlier, sustaining a whiplash injury. He said he had yet to meet a patient with CFS who didn’t have a history of neck trauma. He said there was a theory that any sort of injury to the cervical spinal column either released a component that led to the disease, or allowed one to enter the spinal fluid.”

 

The quote above was lifted from the comments section in a 2007 article on chronic fatigue, which is interesting in its own light, as it discusses a viral hypothesis for CFS/ME. Rather than going into this now, which is plausible to me based on the positive impact of FMT on CFS, considering a healthy microbiota is likely to be inherently anti-viral, I’d rather stick with a discussion of the biomechanical overlap between IBD/CFS-ME/POTS, and then relate that to gut ecology.

I suffer from CFS/ME in addition to ulcerative colitis, asthma, and other inflammatory conditions. I also, as many of you know, have a history of neck trauma, caused in a traffic accident years ago. For me, the neck injury acted as a trigger for most of my health issues, so I have recently suspected vagal nerve damage as a possible root problem. The VN mediates inflammation and immunity in the body, to a large extent, and controls heart rate/BP, hormonal output (adrenals, chief among them), organ function, including gut transport (suggesting constipation, GERD may be related to VN damage), so it’s easy to see where a wide range of symptoms could have this common thread.

I’ve dubbed it the “Gut-Neck Axis” because I’ve found healthy alterations to my gut flora are just as curative (or at the least, beneficial) as achieving proper alignment of my neck! Either will provide relief, whether it’s a glass of home-brewed kefir, a chiropractic adjustment, or a manipulation I can do on my own.

Why would this be? Does an adjustment of my neck release electrical “noise” in my central nervous system, a bottled up energy produced by pathogenic or translocated gut flora (SIBO), or is it simply taking pressure off my vagal nerve, which could allow it to engage more bandwidth in performing its tasks?

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My guess is both are true, because the neck is the physical fuse box between the brain and the enteric nervous system, the “gut brain”.

When hyperadrenergic POTS kicks in for me, my blood pressure and heart rate accelerate, I get obvious tinnitus, a stuffy nose, my gut stops moving, and I get very heat-intolerant. Much to my amazement, in recent days the use of a posture pump will stop all these symptoms, and quickly. Right away, I can feel peristalsis occurring, my nose opens up and I can feel my blood pressure dropping.

If I’m in the car and don’t have access to the device, often times just relaxing my neck, jutting my lower jaw forward a bit, and tilting my head back slightly will do the same. I’ve found it’s important to also try to elongate my neck as much as I can, by using muscles that extend it, whilst I simultaneously try to keep it limber, not stiff. At other times I get relief from just gently pushing in on my lower jaw (while it’s very relaxed), which seems to realign upper cervical vertebrae. There’s a zen to achieving this posture. It has taken practice, but luckily I get instant feedback when I’m doing it right, so I’ve made good progress.

By the way, it should be noted since we’re all different, I’m not recommending anyone try what works for me. This is not medical advice, and anyone reading along should consult their physician before attempting anything described herein.

The third leg of the stool, in this Axis, is active stress reduction. In any situation where I feel a high sympathetic state coming on, calming my mind, paying attention to breathing ( in for a count of 3, out for a count of 4) will act as a brake, and slow things down. For me, CFS/ME feels like a cardiovascular issue. I notice when hyperadrenergic POTS symptoms are flaring, I find it exhausting to stand; with my neck aligned properly I have much more energy.

One theory regarding a trigger for CFS is a vagal nerve infection, and I am not discounting this, but what if it’s also an impinged nerve, a transient impairment, that can be corrected with a spinal adjustment? It’s pretty clear to me my health issues have multiple avenues for healing, and there’s likely to be more than one root cause.

So to my broader point: in an attempt to simply feel as good as possible, I’ll continue to do each and every thing I’ve learned is having a positive impact on symptoms, whether it’s biomechanical or more related to gut flora. Since we know it’s a feedback loop, my theory is a neck injury can create a pro-inflammatory state in the gut that discourages the growth of vital gut flora. Stress can, too. Each of these, in turn, creates an inflamed gut that further discourages a healthy microbiome. It’s a vicious cycle. But by adding in cultured foods, probiotics, FMT, perhaps this reduces the electrical “noise” in the CNS, which makes mechanical manipulations less important.

I do know when I’ve done FMT a few times, it’s as if I’ve been seeing a chiropractor regularly. It’s all about relaxation, tilting over into a more parasympathetic-dominant mode, and a happy neck creates a happy gut, creates a happy brain. Furthermore, getting back to CFS, I notice FMT gives me a lot more energy. I can see where in the study cited above they may have had a much higher response rate with CFS/ME if the participants had simply done FMT for a longer period of time, say 6 to 8 weeks, rather than merely two to three days. I’d love to see another FMT study where participants were also given gentle chiropractic adjustments with an activator tool, massage therapy, and participated in guided meditation.

In the comments section I’d appreciate hearing from you. What are your own coping methods for cooling off the gut brain, staying in a more parasympathetic (restful/restorative/digesting) state? Also, if you have identified a neck-related trigger for IBD or CFS, which biomechanical approaches help the most? Have any of you had cervical spinal (neck) surgery? If so, what results have you had? I figure someone out there with IBD (ulcerative colitis or crohn’s) has had cervical spinal surgery and I’m very curious if this may have alleviated or improved the IBD.

 

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18 thoughts on “Chronic Fatigue/POTS/IBD & the Gut-Neck Axis

  1. Saturday, July 19, 2014

    Interesting. I had physical therapy for cervical neck pain about a 2 years ago. There are neck movements, such as forward head tilt, also traction that helps create space to alleviate pressure on nerves. I haven’t associated this with pots symptoms and will give PT a try. I think I’ve had pots probably since I was young. But, the life changing pots crash took place following a very stressful year, then a fall off my horse. However, I have no memory of the fall – only the impact flat on my back. So, I don’t know if pots caused me to faint and fall, or the fall caused pots. I appreciate your article.

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  2. Thursday, July 25, 2014

    On Tuesday evening, I restarted my physical therapy exercises for my neck. As is my pattern, I over did it. I was bound and determined to stretch cervical spine a good inch. Anyway, I was pretty sore afterwards, and at 11:30 pm, my POTS symptoms were over the top horrible. This lasted for 36 hours – body tremors, significant weakness in the entire left side of my body, bugs crawling and stabbing me all over with hot needles, blurred vision – you name it, it was happening. Then, yesterday I felt stronger than I’d been. Today, I went to the gym, and was on the recumbent bike and my heart rate was over 100 for 15 minutes. I had absolutely no chest pain or breathing problems. I went on to do a basic weight machine routine. I came home and did a more gentle version of my neck therapy exercises. I am relaxed and tired, but I do not feel sick.

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      • hi, Rachel — i have had advice from both a neurologist and a chiropractor on neck exercises, and they were in agreement. i do isometric exercises using my right hand pushing gently against the side of my head, as i flex my neck to meet that pressure. http://en.wikipedia.org/wiki/Isometric_exercise it’s not strictly isometric, in that i do flex my neck a bit. everything is done very gently, because it’s about improving flexibility as well as strength. too vigorous, and it can cause setbacks. here’s a video with similar movements i found on youtube: https://www.youtube.com/watch?v=w7Zn2tZ1goY

        i also use a posture pump (see link on blog in “a bit about me” section), which was recommended by my chiropractor. the neurologist approved, so everyone’s on board with the device, and for me it’s made a big difference. i get bad tinnitus, heat intolerance and my gut is at a standstill when my neck needs to be manipulated (gently). using the pump gets my nose to open up, and i feel my blood pressure dropping (to a normal range) within a minute or so. i usually do it every other day, for about 10 minutes at night before bed, and the isometrics are on those same days in the AM.

        i do think at some point i’ll have to have surgery, and this is not a happy thought. one unexpected consequence is if i’ve got metal plates fusing vertebrae, i won’t be able to do the same sorts of movements to get relief. i also don’t tolerate antibiotics, and would be concerned about any surgery-related infection.

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  3. I don’t feel like a sick person again today. If pots was caused by my neck injuries, I’m going to flip! I had lots of physical therapy for my neck 2 years ago and have lots if instructions and gadgets to continue at home. Oh, I so much want better days ahead. If this is the beginning of better days…words cannot express. 😉

    PS. I took my regular beta blocker dosage today. I started to feel bad, and took my bp & hr. My hr is in the low 40’s. I take a beta blocker for tachycardia, so it looks like it’s time to reduce my dosage. Warning – if you start feeling better, be sure to check your bp and hr, before taking meds.

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    • Christina == thank you so much for sharing your story! It sounds like you should check in with your dr. and possibly add a new neurologist to the mix who can help unravel the mystery of your neck, and its connection to POTS. i will certainly be doing the same! cheers to you, and congrats on all the progress!

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  4. Interesting article, I do think our health in an incredibly complex issue, and I personally believe there is strong links between a traumatic event / injury and enduring health issues that impact our whole body. Mine stemmed from a lower back injury. Maybe the injury causes some sort of mental/ physical cross-wiring , or maybe the extended use of pain-killers has some impact, or maybe it is just our personal sensitivity to trauma that makes us react differently to cause this long term chronic pain or illness, I honestly don’t know. What I do believe is that everyone is different, and we all have to begin a voyage of discovery to get to the bottom of our own unique set of circumstance. I also believe that anything broken can be fixed -yes a bit of a sweeping statement 🙂 Here is a link to an article on my blog about my own sensitivity. http://steppingoutofpain.com/2014/05/13/fibromyalgia-are-suffers-just-sensitive-souls/
    I also suffer a huge amount of food intolerance, cause of my problems or effect of my problems? I don’t have an answer, but my diet plays a massive role in how well, and how much pain I feel. I have a lot of articles on my blog about this also, and would appreciate you comments and feedback.

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  5. Wow, what an interesting read! I’ve been diagnosed with Ehlers-Danlos Syndrome and Fibromyalgia, and I’ve found out on my own that I am gluten and dairy intolerant. Not until I’ve practiced parasympathetic nervous system practices, and cut gluten, dairy, and sugar from my diet, have I been able to start feeling better.

    But you hit the nail on the head: It’s all about maintaining that Zen-like state. You asked how do I go about maintaining this state? By a daily practice of yoga. Every morning. It must be a DAILY practice.

    I also practice an esoteric teaching of mindfulness, something I can go into more detail if you’d like. Mindfulness is key.

    So strange that I came across your article right now, as I am currently suffering neck pain. Pain that came on from not being able to keep my nervous system in check (had to spend time out with visiting family.)

    EDSers also often suffer from something called Chiari-1 malformation. Don’t know if you are aware of such a thing? Might be worth a looksie?

    I’m not trying to post “my page” here, but I do run a fairly decent yoga page for people in chronic pain: https://www.facebook.com/YogaForEhlersDanlosSyndrome
    Come jump aboard for some yoga inspiration!

    From my experience, you can activate your vagus nerve through yoga and certain breathing techniques. I share my experience of such a transformation in my Spiritual Journey of Healing: http://yoga4eds.tumblr.com/

    Keep in touch if you’d like! I’m on wordpress, too, so I’ll follow ya right now!

    Thanks for sharing,

    The Gluten Free Yogi

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    • hey, thanks so much for stopping by, The Gluten Free Yogi — i really appreciate the feedback. i’m not a very flexible person, which is probably EVERY reason i’d benefit from doing gentle yoga. i do notice when i massage tight muscles, for example my right calf sometimes knots up, or if i gently twist my midsection from side to side and open up my thoracic spine, this gets my gut moving in a healthy way. by extension, i’d think any release of muscular tension could activate parasympathetic activity, which in turn would probably create healthier gut flora, and initiate a virtuous circle. 🙂

      i hope you come back often, and i’ll be reading your blog as well!

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      • I’m sorry, I also most likely have POTS, but haven’t been diagnosed.

        I just happened to start poking around a little bit about Chiari-1 malformation, “Chiari Malformation Type I is a neurological disorder where part of the brain, the cerebellum, descends out of the skull into the spinal area. This results in compression of parts of the brain and spinal cord, and disrupts the normal flow of cerebrospinal fluid.”

        What I didn’t now until now, is that many Chiari-1 malformed- sufferers believe malnutrition has a lot to do with the malformation. In the past, people contributed Chiari to genetics. The same with EDS, genetics.

        As many of us know, gluten destroys the gut lining and prevents us from absorbing nutrients, that is, while our guts are still damaged. Inflammation-causing foods should be avoided: that be the foods I mentioned before, as well as other trigger foods, and possibly even things like carrageenan!

        Other things I have found to be extremely beneficial are: tension relieving techniques, like using a tennis ball, a foam roller, and something like the Theracane. My doctor explained to me that our muscle tension constricts our veins, arteries, and nerves, causing pain and circulation problems.

        If you suffer from fatigue, I have been SO LUCKY to have found something that works: d-ribose powder. It’s a simple sugar, instant ATP, 2 scoops a day, fatigue gone away.

        Yeah, I’ll check your blog out even more! Found ya through Gina Cromarty, Stepping Out of Pain’s re-post. See ya around!

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  6. I have had CFS for nearly 3 decades, and I’m not fitting in to a neck injury, then problems. It’s the other way, which brought me here, as I was slammed by a vehicle, in my vehicle. I have now, a neck injury. It so far, has not been imaged, I have had P.T. 12 times, and the therapist has said, “C6 and I have whiplash.” The therapy kind of seemed to take some pain down, only to seem to reveal, bring out the core injury, my neck is killing me! It’s been maybe 5 months since injured. I got to thinking about many things, one being that I’d seen many times, CFS and that area of the neck, the fluid,etc…and wondered exactly what I’d seen on the subject.Wondered about facts, or anything recognized when a CFS patient, compared to a healthy individual,when injured,any differences between the two people,etc.? Has anyone ever been hit, and disabled with CFS,ended up in a catch 22, a paradox? I cannot fit into the “box,” big insurance has for criteria…and that’s meeting things as if a CFS patient is able to “suddenly be healthy,” with injuries now too,to receive compensation from them. I am really with my hair on fire, it’s hard to explain, but, how is it, or am I just hallucinating, that I have an illness that is dismissed, and I feel discriminated against as a disabled person…and I will be penalized, either way-any way-no matter what I can or cannot do. It’s “simply complicated,” and I’m not seeing anything that covers this…I am going to get burned for being disabled! I “have,” to “perform,” things that “are to get me back to where I was.” (Never mind this is triggering the CFS, because it’s more than I could do before I was injured!) So I’m having to fight the CFS, which means I WILL pay for that,alone of course,yet still goes on as over looked on settlement value,according to calculations criteria set…all only has me of “no value.” No work hours lost,injuries valid, but hardly compensate what I’m going through-hurting myself to heal myself? And “pain and suffering,” is the grey area where insurances hand you five bucks…after all, the CFS injured didn’t do anything anyhow to begin with…I am a invalid=in valid. I know I’m off topic, I am in a hell I did not have before slammed, yet I cannot find a thing on a situation like this! There isn’t enough compensation for what this is really like for someone with CFS! Where/how do I get justice? I feel it’s like when we are the only authority on our pain, and that’s not enough to be legitimate to the liable ones. They don’t live it, and don’t see it…I only do. Does anyone get what I’m overwhelmed with here? A paradox. Not taken seriously. We will be “shit on,” one more time.I am disturbed about this and cannot figure it out. It’s kinda similar to, “How do you call the cops on the cops?” I feel doomed.

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    • Andrea, i wouldn’t lose hope! i have a friend who is in his 60s who was bitten by a dog, and badly. when seeking a judgement against the dog owner, his lawyer rightfully increased the punitive damages because his is not a young man’s body. he has arthritis, and various other conditions, that made getting bitten far worse than if he’d been in his 20s. the same is true for you. i think you just need to find a good lawyer. also consider contacting your state bar association, plus patients’ rights advocacy groups. make sure drs document the harm you’ve sustained and include in their medical records how the trauma could be compounded by your CFS. i am glad you found this site, and i wish you good luck!

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    • I WAS HIT AT 50MPH SEVEN YEARS AGO. SHE LIED RE: HER INSURANCE. I DID HAVE UNINSURED MOTORIST COVERAGE, WITH DOUBLE WHIPLASH AND WITH THE ADVICE OF MY PI ATTORNEY IN LOS ANGELES I ONLY WENT FOR BRAIN INJURY CLAIM. NEVER SPOKE OF HAVING ME/CFS. IT TOOK TWO YEARS OF TESTING (UCLA) MRI’S ETC. I OF COURSE BECAME MUCH SICKER WITH DAMAGE TO TEETH, RIBS, VISION,WRITING, IQ, I CAME OUT JUST AS WELL AS COULD BE EXPECTED UNDER THE CIRCUMSTANCES. MY INSURANCE COVERED ME AS THE GIRL WHO HIT ME WAS NO WHERE TO BE FOUND. I AM CONFUSED WITH WHAT YOU ARE SAYING, FOR WITH THE RIGHT ATTORNEY AND INSURANCE IT SHOULD BE IN YOUR FAVOR. WITH THE WRONG ATTORNEY FORGET IT. I JUST RE-READ YOUR POST. I DO NOT UNDERSTAND WHY THIS IS A PROBLEM?????????? BY THE WAY I HAVE BEEN ILL WITH ME FOR OVER 20PLS YEARS. MOSTLY BEDBOUND AND ALONE.

      .

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      • Hi, Lynn – I’m not sure I understand your comment. My post is all about a possible physical link between neck injury and CFS/ME, and also IBD (gut inflammation) due to vagal nerve damage. My focus is not the legal implications of neck injury. My accident was also caused by a hit-and-run driver, by the way. I hope you can find some healing.

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  7. Last week was really rough. I contacted my cardiologist who instructed me to further reduce my beta blocker dosage. I noticed last night that my heart rate was still low. Since resuming physical therapy exercises for my neck, I have reduced my metoprolol to 25 mg per day (I was up to 100 mg). My tachycardia and brain fog are gone. The tingling/pin pricks throught feet, legs, hands, a and head still exists. Progress! I am smiling this morning 🙂

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