SIBO, The Missing Piece of  Chronic Pain Dysautonomia

SIBO, The Missing Piece of Chronic Pain Dysautonomia

by Suzanne B. Stewart

suzanne-burnett-stewart

Suzanne B. Stewart

One Summer day in 2002, a man ran through a red light and changed my life forever. I didn’t know what pain was until then, except for childbirth. After the MVA, I went through multiple surgeries, chronic intractable pain and then one medical issue/diagnosis after another. I now have an Autoimmune disease called “Combined Immune Deficiency”, which renders me unable to be a candidate for many surgical pain interventions. I have several pain illnesses such as:  Systemic/full Body RSD/CRPS, Arnold Chiari I, Polyneuropathy in Collagen Vascular Disease (which is similar to EDS type 4/Vascular), Degenerative Disc Disease, Autonomic Neuropathy, Scoliosis, Rheumatoid Arthritis,Dysautonomia/POTS, CFS, Gastroparesis, Chronic kidney disease II, Chronic Erosive Gastritis, and there are more. I won’t bore you with the rest of the list because you get the idea! Except for the latest diagnosis that I’ve been given, puts the puzzle together for me in some ways.

Are you a chronic pain patient who has had IBS (Irritable Bowel syndrome) and much trouble with your stomach and digestion? Have  you been diagnosed with Chronic fatigue? Do you have Fibromyalgia? How about Dysautonomia, POTS and EDS?  Well, it took me several Gastroenterologist’s to actually find one that would truly listen to me. One who had knowledge of such things as CRPS and Dysautonomia and ANS failure. We all need to visit specialist after specialist, until finding one who truly listens. Luckily, the GI Dr.that I’ve found, is knowledgeable about CRPS and many of the pain illnesses that I have. He did many blood tests, EGD, colonoscopy and gastric emptying test. He gave me the diagnosis of chronic erosive Gastritis. He said “Do you see the CRPS lesions on your hands and legs/feet? That is what the inside of your stomach looks like.” Then in giving me the diagnosis of  Gastroparesis he explained  how my  Dysautonomia most likely contributed to many things, including the next illness that I would be diagnosed with. I finally had answers and was so relieved to at least know what was going on inside of my body. But that was only part of the puzzle.

Next, he ordered a test for me, called a “SIBO” or “Small Intestinal Bacterial Overgrowth” test. In the end, it shows if you have a chronic small intestinal bacterial infection or not. Most people have this test and it can last up to 3 hours. Mine was positive after only 20 minutes, because the numbers tripled during that time! I was given a positive diagnosis for “SIBO”, and then a couple of medications; including an antibiotic. They printed out an information sheet and made me a  return visit appointment with the Dr. in a few weeks.

I actually rushed to my keyboards in order to share this information with my “pain friends” and the “pain community”. This is an important piece of the “puzzle” for many, I believe. I will try to explain this in the best way I know how, but you need to talk to your physician about it,  in case it could be part of your puzzle. You see, we all have the “normal” bacteria in our GI tract. The small intestine not only plays an important role in digestion and getting the nutrients from our food, but it also plays a very big role in our immune system and fighting infections. The “good” bacteria help with absorbing vitamins and nutrients such as Vitamin K, A and folate. They even help with the muscles that move food through our systems.

SIBO is essentially a chronic infection of the small intestine. They have found it shows up positive with many chronic conditions. It can lead to various IBS symptoms such as: bloating, abdominal pain/discomfort, Diarrhea, Constipation, Gas/belching and in more severe cases there can be weight loss and the symptoms related to the vitamin deficiencies. One of the biggest issues it causes is called “leaky gut.” But it can “mess with” our immune system as well. This in turn, may cause an increase in allergies, food sensitivities, fatigue, altered cognition or “brain fog”, pain and other neurological symptoms. SIBO is a bacterial infection but it is NOT contagious. It is very hard to treat because antibiotics are used, but in about half of all patients it returns within a year, maybe several times. Extended use of antibiotics is a risk factor for SIBO! It has been studied and most patients with Dysautonomia also suffer from SIBO! There are several publications out now, that find a strong connection between SIBO and Fibromyalgia as well.

So why am I telling you this? Mostly, because many people who have CRPS, EDS, FMS, CFS and other pain illnesses or ones which cause fatigue, also have Dysautonomia. Abnormal autonomic function can cause many varying symptoms, including: fatigue (*not just being tired, but a lack of energy so severe that has a huge impact on a patient’s life), sleep disturbances, altered cognitive function (*known also as brain fog), cold/heat intolerance, headaches (*headache upon waking up are common with ANS dysfunction), bladder/bowel dysfunction and stomach pain (*GI symptoms such as: bloating, early fullness are a part of ANS dysfunction as well). Digestion is a large part of the Autonomic nervous system. In addition, many people with EDS Hypertonicity/Spasticity or abnormal muscle tone have Dysautonomia; along with POTS (Postural Orthostatic Tachycardia Syndrome), visual disturbances and altered sweating.

Treating this small intestinal bacterial infection (SIBO) is very challenging. Treatment is more than just helping with IBS symptoms. SIBO, as I have discussed, is often present with many of the autoimmune or chronic inflammatory diseases. Getting rid of the “wrong” bacteria is most important. I was given an antibiotic and probiotics. But some patients, I’ve read, are given antimicobials, and pro kinetic agents such as low dose Naltrexone.

If you have any of the symptoms of SIBO that I’ve mentioned above, talk with your GP or see a Gastroenterologist, a specialist in digestion and motility disorders. For more information you can visit:

Suzanne suffers from full body CRPS and has lived in chronic pain since 1999. Before being disabled by chronic pain, she was an Interpreter for the Deaf at University of Michigan Hospitals and for several school districts, working with children.  Today she is a patient Health Advocate, guest writer, blogger and fundraiser for RSDSA and an Ambassador for U.S. Pain Foundation and creates Advocacy videos, and writes in her own blog “Tears of Truth” (suzydukettes.wordpress.com).

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Authored by: Suzanne Stewart

There are 13 comments for this article
  1. Suzanne B. Stewart at 10:48 pm

    Thank you for your kind comments! The best thing that can happen when I write an article is when it helps someone! Maureen, Cheri and Kristi, I’m happy to have helped you! You made my day! I had a note from one lady who’s been ill for 17 years! She’s been to the big hospitals etc. & nobody knew what was wrong! She said she even had a vey hugely expensive test for they thought she might have a stomach tumor! She read this article and took it to her Dr and they found out that she has SIBO and she got the antibiotics and is better! I cried as I was just so very deeply happy to have helped someone! Also thank you Dr Ibsen! Someone asked me what I eat or do for this. I can only say what helps me. I can eat frozen yogurt, Activa yogurt, blueberries, scrambled eggs & crackers, baked potatoes and I cannot eat nuts or much sugar, no fried or processed foods …thank you everyone for your kindness and It’s true that SIBO comes from another illness. My Neurocardiologist is head of Autonomic failure and EPS /Cardiology and he & my GI Dr (*it took me 5 GI Drs to get one to listen to me! One actually told my husband that “he should’ve left me bcz too much is wrong with me”! Needless to say, I wrote the medical director and later got a letter of apology) says that SIBO comes under the Dysautonomia “umbrella”! Also to the one person that said she has to keep taking antibiotics; sadly, that’s the nature of this illness called “S.I.B.O.”….I am given 3 scripts of antibiotics –1 for each month x 3 months. I see the GI Dr. every 3 months. He says that it’s a “chronic condition” and can come back monthly. He says I must take probiotics and drink protein drinks to help. But we become immune to antibiotics & thus, he’ll have to change up those every 3 months. Sadly though, what’s difficult for me is that I have several heart illnesses/issues (including: pho an M.I., Atrial Fibrillation, SSS, Coronary spasms, CAD High and low erratic BP & a pacemaker …etc..)– and I have “Long QT syndrome” and there are over approx 800-1,000+ meds that I cannot take (*many are antibiotics).. Thank you all so much! If anyone has any questions or wants to chat about this, don’t hesitate to message me here or my blog “Tears of Truth” (Suzydukettes.wordpress.com) you can reach me as it’s no problem!
    Remember what I say, that “HOPE is a Verb! You must DO something in order to have Hope & Positivity!”…sending love and prayers!

  2. Kristi M at 12:54 pm

    Angela,
    Does your daughter suffer from any medical condition? Usually SIBO is an underlying disease caused by a medical condition like IBS, Gastroparesis etc.

  3. Angela at 9:46 am

    My 13 year old daughter has been diagnosed with Sibo. It just keeps coming back with vengeance time after time when we treat it with antibiotics. We have a GI doctor but feel they really do nothing but treat it with antibiotics… and tell us nothing so we are being seen for a second opinion. I read up on home remedies, what foods to stay away from. Can you tell me what helps you?

  4. Kristi M at 2:23 pm

    Thank you so much for this article! I have EDS, Fibro, ME/CFS, Dercums Disease, Dysautonomia, IBS-Constipation, Gastroparesis and more. I’m going to bring this up to my Dr. because something has not been right with my digestion for years! Now off to research!

  5. Jean Price at 1:50 am

    Maureen…Thanks so much for your generous compliment! Ive had lots of years to look at pain and body stuff and life! Plus obviously I’m never at a loss for words, even with pain! You brightened my day with your comment. Glad you enjoyed it!

  6. David at 8:45 am

    As I read all the good replys I am thinking why I had my back surgery in 2002 and have had nothing but problems I also have had an auto immune problem and they dont know what it is so I really feal what your going thru and I have chronic small bowel obstructions its just as someone who gets hurt all these problems come on I hope you get well..

  7. Maureen at 9:05 pm

    Bravo Jean! So well, perfectly and understandably said! Thank you.

  8. Cheri Furr at 7:25 pm

    Wow! Thank you so much for your article! First of all, I only have CRPS from right hipbone down through the joint canal and down my leg and foot. Knowing the pain I suffer, I can’t tell you how much I admire you for all of your courage and what you must go through every day. To even be able to do fundraising for the RSDA is amazing. 16 years ago I had a teenaged daughter, a husband and a busy job that I all loved. I won a trip to the island of Nevis in August with my husband. But a month after returning, I couldn’t move from the couch as soon as I got home. After a couple of weeks I went to the doctor and was diagnosed with mono. After returning to work a few weeks later, I thought I had a few sniffles, had to fly to a one-day meeting in Chicago. By the time I got on the plane to return home, I used an entire package of tissues. I absolutely could not stop blowing my nose and coughing, embarrassingly. From there, I got a sinus infection, then an upper respiratory infection, and finally pneumonia in April. I had diarrhea the entire month of May and couldn’t eat anything. They ran a few tests and could find nothing wrong. Then I had the same issue for four straight months. I lost 60 pounds and couldn’t even tolerate broth or gelatin. I lived off of low-sugar gatorade while a GI ran every test known to man. I also had pain in my right side. He finally consulted a surgeon who told him he thought I had a rare carcinoid tumor, which usually lodges in your appendix or large bowel. Because he thought I might have a rupture, he rushed me into exploratory abdominal surgery the next day. No tumor was found, but he removed my appendix because it was stuck to my sacrum. THAT caused my CRPS, but I was slowly able to eat again. I had my gall bladder removed in 1980, and 7 months later had sudden sharp pain in the point of my rib cage, broke out into a severe sweat, and had pain running down my right arm. The diarrhea started right up again, but I had bloodwork as soon as someone could take me to the doctor. He called back right away and told me my liver enzymes were off the charts, which meant I had hepatitis. I had been vaccinated for A and B and had no risk for hep C. It was cholestatic hepatitis. I had a large stone in the bile duct which had broken off and was blocking my bile duct, completely blocking it. A billiary doctor at Duke did an endoscopy while I was pretty knocked out, removed large pieces and made an incision to slightly widen my bile duct. The diarrhea stopped, but it came back two years later and two years after that. It finally began happening every month. I went to three more GIs and then was referred to an oncologist/hematologist. He thought I might have a microscopic carcinoid, which he said could be in ANY organ of the body. I went to UNC and had a two-day radioactive octreoscan, $18,000, and it showed nothing. At a new GI, so dehydrated I had fainted twice, I was taken back to a bay to get IV fluids. He finally said everything else had been tested, and he believed I might have picked up a rare bacteria in Nevis that, when built up in my small intestine, would cause food to slide straight through like silk. Xifaxan solved the problem that time, but it does keep coming back. He has done neither of the tests you mentioned, though, and now I know which tests he should run. Thank you so much!

  9. Jean Price at 5:42 pm

    Pain can invade every part of our lives, so I guess it stands to reason it also can invade every system and every part of our bodies over time. Odd, really, how the SYMPYOM of pain can actually become the DISEASE of. pain…and then that disease can morph into so many ADDITIONAL disease conditions!! Yet, most of the time, bodies DO “make sense”…meaning there ARE answers. So the oddity of pain may just be because we don’t have all the answers yet! Then the hard part becomes finding our OWN answers and seeing how we can individualize our treatment plan/life style so we can EACH be our own PERSONAL best.

    Pain is definitely NOT a one-size-fits-all type of malady, therefore…neither is treatment. In each of us, pain is complex. I’ve found it’s impossible to make something complex into something simple! But it IS possible to break down the complexity into more easily understood parts and treat those. Plus, it’s possible to tune out the OTHER areas that are least burdensome at any one point…and just concentrate on the day’s biggest issue. (Which I think most of us routinely do without even realizing it!)

    Because such a hugh percentage of our immune system is actually housed in our intestines, and because our hypothamus registers EVERYTHING happening to us—inside and out!—and influences both our hormone system and our immune system—it’s really no wonder we see persistent pain creating so much havoc in so many functional parts of the body. There’s a book I read ages ago (pre-pain) that actually explains this. It’s called “Getting Well Again” by the Simetons, and was written to be a look at cancer and what role “stress” plays…and what to do about that! Stress is inevitable in life…whether you have pain or not. Even “good” things create stress!! And all stress causes biological changes at many levels in the body. Yet it isn’t the stress that’s the biggest factor in health problems, but rather how we learn to deal with it or live with it, how we work to help our bodies! The first half of the book explains all this really quite well. And then goes on to say what they did in working with terminally ill cancer patients. The main outcome was that almost ALL lived past their prognosis, time wise…yet the bigger issue was that they all lived MORE FUNCTIONALLY and MORE FULLY with the time they had!! Isn’t that all any of us truly want? We all know pain is a whole person disease…body, mind, spirit, and relationships…and it’s a family disease, too. Even probably a societal disease, since it does have an impact on our society, in more ways than just financial…like decreasing productivity and creativity! As a person who also has numerous health issues…some before, some after and some BECAUSE of daily, persistent pain, i think it’s so important to work on mentally and spiritually strengthening ourselves, when the physical isn’t doable. There’s no pill or no one true way to do this, because we are all so different. Yet, we do have the time to read and reflect and help ourselves toward living more healthily WITH our multiple system problems. And interacting with others can help too. Remembering we are NOT our pain, or our diseases, is important! And dealing with life a day at a time. That’s all ANYone gets anyway!!

  10. Mark Ibsen MD at 1:30 pm

    Great article.
    Dr Forrest Tennant has done a lot of work on this also

    The leaky guy can be helped with cannabis.

    Good luck.

  11. Tim Mason at 10:30 am

    The answer to a healthy digestive system is real buttermilk.
    That was a good one MichaelL. I see the same decline in Nuevo educated chemists.

  12. MichaelL at 8:50 am

    I bet he runs into the same type of critics I did. I might say, “What does a gastroenterologist know about dysautonomia?” I ran into “What does a general surgeon know about endocrinology?” I guess the graduate school education, with a minor in endocrinology must have helped. Add the majors in anatomy/gross anatomy it left me with a step up over classically educated physicians. It proves that the push for doctors to stay educated only causes trouble for those of us who take our science/profession seriously! It leaves the alchemist types governing over the true scientists. So many “medical” opinions seem to be emotional than based on scientific information. I prefer to have my people avoiding things governed by “old wives tales”and emotions! Follow the science and not the politics.

  13. Maureen at 8:23 am

    Suzanne, Thank you very much for this post and info.
    Aside from my chronic pain/spine issues…over the years I have been also diagnosed with most of what you wrote. I am immuno-challenged.
    In fact, I sit here right now with shingles brought on from stress over the past couple of months. 🙁
    In the past, I would research galore about my symptoms and then bring my info/thoughts to my previous primary doc and together, little by little, I learned all that was going on with myself!
    I was diagnosed with small bowel infection about 7 years ago via the test you mentioned, then treated with a strong antibiotic.
    As you know, the symptoms were painfully horrific, I couldn’t eat anything without bringing on pain and doubling over and screaming. I lost about 10lbs in a month due to it.
    This was the beginning of me ‘connecting the dots’ of what was going on with my immune system.
    I’ve learned to control it at best by diet…I mostly only eat chicken, veges, fruit, grains and probiotics. No sugar, no carbs etc.
    If I dare to throw my strict diet off..I suffer big time.
    It is comforting to know that all of my years of research have proven to be all that you have written, that I now know what ‘I am talking about’ and that I am not alone!
    We must stay vigilant about our own health, especially since the doctors simply don’t take the time to help us figure it out anymore. We learn to pay close attention to our bodies reactions etc.
    Then the challenge is to find a good doc who will listen and work with you….
    Be well, Maureen

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