SIBO, The Missing Piece of Chronic Pain Dysautonomia


 

Difficult question

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: https://autonomicspecialists.com/symptoms/, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/, http://www.thedysautonomiaproject.org/‎, https://draxe.com/sibo-symptoms/, http://www.mitoaction.org/files/Dysautonomia.pdf, https://autonomicspecialists.com/small-intestine-bacterial-overgrowth-sibo/

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I want to add that SIBO is just another painful part of  living with Chronic Pain illnesses. The diagnosis of Combined Immune Deficiency disease,  makes me one of those persons who needs access to Opioid pain medications. Due to risk of infections and an even higher risk of paralysis; I’m one of many pain patients  who are not candidates for SCS or a pain pump. We need to be heard and to keep our voices going strong. Continue to reach out to our Government representatives, regarding the error in  labeling us as “addicts”.  A grossly incorrect label given to those of us living with chronic daily pain but who require Opioid pain medications. The majority of Chronic Pain patients take these medicines responsibly. We should not be lumped together with Heroin addicts and those persons who abuse drugs. I/We do NOT get a high, nor do I/we crave our pain medications. We require them just as a diabetic needs insulin. In my own life, the Opioids help my CRPS, the horrible burning nerve pain & give me a reprieve. In the same way that other medicines help people with different specific illnesses. If the diabetic or the person with high blood pressure stops their medications quickly, they will get very sick and could even die. Why can’t the CDC, DEA, PROP Dr.’s and our Government see this?  That I too, can digress, get very ill and even could have seizures or a heart attack if I am abruptly removed from my Opioid pain medications? The exact pain medications that I have been prescribed and have been taking  at the same or lowered dosage since that auto accident in 2002.

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Scars To Your Beautiful, An ASL Cover


Hello Luvs,

I did this song in an ASL cover for you to let you know whether you are carrying scars that show or ones that we cannot see, you are beautiful! Anorexia is the plight to be perfect and the hunger gives strength, or so I thought at one time. I thought it made me stronger than my parents and brother who were trying to call me horrible names and act abusive towards me as I got weighed weekly and given Ipecac if someone did feed me when I was growing up. When I got older I got better and worse depending on the stressfulness of a situation in my life.  I guess it was my “coping mechanism” too , later on. But a car accident changed that and I stopped and I cured myself of that and those thoughts. I had to get better and try to feel better. I had to eat to take the medications that I needed to survive the pain from the multiple injuries and surgeries. It’s a very long story, but many people have long stories. This one is for us, all of us who have a “story”. We are beautiful no matter what anyone else says. Beauty comes from underneath the surface. It is deep inside the core of us. Sending love, I hope you enjoy this ASL cover song “Scars to your Beautiful”

I Need An EarthQuake


This ought to pick you up today, because it sure did me! I used to be an Interpreter for the Deaf and taught sign language to parents of deaf pre-school children. I was an Interpreter at a major University hospital and at several schools. I loved my career which I went to the University for and graduated with honors. But in 2002, I was hit by a man who ran a red light and never got to do that again. Also as ironic as it might sound, I suffered a TBI and now I have 2 hearing aids and I am hearing impaired. I live with several chronic pain illnesses including : full body CRPS, CKDII, Arnold Chiari I, Polyneuropathy in Collagen Vascular disease (similar to EDS type 4 vascular), degenerative disc disease, mutltiple herniated /bulging discs in my lumbar and cervical spine, long thoracic nerve neuropathy, Gastroparesis, chronic erosive gastritis, SIBO (a small intestine infection/chronic), and more. I stil tried to find a way to use my 2nd language that I’ve learned since i was 11 yrs old and then went to school for. I love ASL, PSE, all sign language but mostly I love the Deaf culture and my friends who are Deaf and HH and HI like me. It is a cultural identity and not a HC. But sadly the pain is a HC for me and so many others. I just hope my signing still can at least cheer some people up. I do a variety of songs which are hip hop,Christian, Christian rock , holiday and more….any suggestions? just visit me at either instagram at: ASLSuzyQ or on my facebook page too at http://www.facebook.com/ILuvASL OR at my you tube pages:  go to you tube and search “ASLSuzyQ” or at my advocacy page with a few Songs at http://www.youtube.com/suzydukettes

Pain, Awareness and Distraction!


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Hello Luvs,

Welcome to Complex Regional Pain Syndrome Awareness Month! It is November, known also as “KNOWvember” and “Nervember” by different pain support persons & groups.It’s that time of the year when chronic pain patients, Ambassadors, Delegates, pain warriors, and many people who live with this illness, try to reach out to friends, family, the rest of the pain community and the non-pain community;  to spread information and gain support of this horribly painful disease.

We post about the fire-like pain and debilitating symptoms of this nerve and neuro-autoimmune illness. I think that some of the others who are our “friends” on Social media get really tired of seeing post after post about pain, illness, and unrelenting symptoms that keep us from living life fully, as most of them get to do. We aren’t trying to take over Facebook or Instagram. We are trying to help others to understand what we are going through. Because nobody knows, unless they truly live with this tremendous amount of daily pain. We see your posts about where you are going and what you’re doing. The trips you take and the places you get to visit. We read about you in the car driving here, there and everywhere; or being at your child’s school events. We scroll down to see the many family members who never even speak to us or even know that we live in daily pain, nor do they ever ask about it or us. We notice the friends who seemed close at one time but after awhile they, too got tired of listening about our pain.

This month is for us! This is a time of teaching, preaching, tweeting and posting. Social media is a great avenue to speak about CRPS and this is a special time of year for those of us who live with this on a daily basis. We actually take this time, not to lament about being in chronic daily pain. We are not complaining or posting of our daily struggles with this “monster”.  NO…we are CELEBRATING ourselves because we can!  We are celebrating the color “ORANGE” as it is the awareness color of our illness. We will color our world orange by the end of the month and especially on November 7th, 2016; which is “Color the World Orange Day” in the USA and some places Internationally. If we are not “celebrating”, then we should be. For one reason or another we are affected by chronic pain. Nobody really knows why any of us were allowed to “get” this painful nerve disease.  It is OK to be sad about it sometimes. Take some time to be sad if you need to and then push that sadness aside and do something to help yourself and others.  Actually, helping others is a great way to feel better about things in your own life.

There are so many things that we can use as distractions from our own chronic pain on a daily basis. The more you sit and do nothing, the more you whither away into the dark abyss of pain, sadness and nothingness. The more you try, the more you do and the more you can be positive; the better life you will have.  Honestly, sometimes I admit that I overdo it and then I “pay” for it later, with much higher pain.  I’m not saying to do what I do. That’s actually going too much the other way at times and honestly, I don’t want that for anyone one either. But there’s a “happy medium” someplace in between laying on the bed and/or couch all day and going, going and doing too much until you are in tears because you’re exhausted.  This month we are a bit more “busy” chatting and posting about CRPS awareness, but then the rest of the year we should try to do some other things to help ourselves to be happier. Of course, I’m not saying STOP advocating, spreading awareness and doing events, fundraisers etc. for CRPS or any other chronic pain illness that you live with. I’m just saying that we need to have a life outside of illness, chronic pain and CRPS.

There are things that we can do to distract ourselves from the gnawing, burning, aching and throbbing of this “thing” called Chronic pain and/or CRPS.  It wants to take over our lives and it will if we allow that to happen. The worst thing that you can do for yourself,is to get in with a group of others living with chronic pain, that are negative, competing to be the sickest and who want to bring you down with them. Instead let’s bring them “UP”, cheer them and ourselves at the same time. Find something that you used to enjoy and modify it to a way that you can start doing it again. For example, I used to be an Interpreter for the Deaf at a major University hospital and several school districts. I lost that after the car accident and I went from Interpreter for the Deaf to Hearing Impaired with 2 hearing aids! I was in performance sign language groups and ASL was a huge part of my life! I thought it was over and gone. Now i make Artistic Sign Language videos on You Tube. I try to find uplifting songs with rallying lyrics and I learn the words first and then just sign the song as emotional as possible while taping it. If I choose the right song, it seems to really resonate with people. It makes them feel emotional in a good way. Sure, I have extra pain when I’m finished, but there are things that I can do to help myself.

Distractions are good if you just don’t overdo it! If you like to be artistic with painting or drawing, you can choose one of those awesome coloring books that they have now for adults too! I thought that I was unable to do that also. My hands hurt as the CRPS and the RA/OA has really gone to my hands and they hurt after just a little while of holding a pen or a pencil.  The remedy for that? Find the kind of crayons, markers or colored pencils that are very “chubby” and better for holding onto when you’re in pain. You could also get that “molding material” that is at the craft stores and put it around your favorite coloring utensils; this way making them as thick or thin as you need. There are also little rubber stoppers that you can buy at the school supplies section, to put around the markers or colored pencils.  If you like to be on the computer, but you have a hard time using your hands, try the “talk and text” option. You may even get a good laugh out of some things that pop up wrongly when you use it. You can that way fix just a few things instead of having to write everything that you wish to write. There are programs for your desktop or laptop, one in particular that I know about, called “Dragon”. It is much better at being precise and it’s not horribly expensive. If it is too much money for you, then ask for that as a gift from several people for Christmas or your Birthday present.

There are so many things that we can do to distract from the chronic nerve pain that we know is there and we feel every day. It will be there waiting for you when you are done, but for a little while it will be a bit more distant in your mind, instead of at the forefront. There are things such as:  knitting, crocheting, painting, drawing, writing, speaking, coloring, “playing” games on the computer, social media, reading and even something like photography.  You don’t have to be a professional photographer, but if you enjoy photos, like I do, there are so many free apps (pic collage, Rhonna Designs etc.) to download and “play” with your pictures. If you need relaxing, there are applications such as “Pacifica” that help you relax to different time allotments and music choices.  There are even photography apps where you get a prompt daily and you get to be creative in taking a picture and posting it to their website (500px, Little Moments). Some other things you can do might be to learn a language or at least a few new words in a language that interests you? You can do as much or as little as you are able to do and try to take a few moments each day to NOT think about your pain, illness and the next Dr. appointment coming up.

Advocacy, Opioids And Being the Change



I am guessing that pain sufferers all feel the way that I feel today, at one time or another. Today it feels as though things are piling up.

Not to me, I say. After all, I’m a Health Advocate, Awareness Warrior, Pain Warrior, Ambassador, Mentor, fundraiser, event planner, writer, fact finder and guest blogger. Of course, I’m also a chronic pain patient, but feel that I should have big shoulders, whether they hurt or not. That’s been my place in this not so new life, since 2002. The pain is not my choice, but how I choose to deal with it is up to me. I choose and have chosen to help myself and others. By advocating, fighting, writing, posting, protesting, tweeting, & attending conferences for all of us. Like Ghandi said “Be the Change you want to see in the world.” I say change starts with me! 

I try to listen. I don’t mean just “hear what is being said” but hear what’s not being said and try to make something good happen in all our lives. I like to make change that is good, even if it is only to put a smile on someone’s face for one day. I truly enjoy caring about other people and making them feel good or better about themselves or their situations. I remember one time, in one of my own support groups that I still moderate today; I got to do something extraordinary. One woman had a wheelchair that was too big for her. I found a man who had one that was too small for him. I got the two of them together and they swapped wheelchairs. The joy on their faces and the feeling of warmth that I got from that experience, was the best medicine that I could’ve ever had to help “me feel better.”

And yet it is suffering that is happening right now, today in many doctors’ offices, pharmacies, emergency rooms and patient homes. But I won’t allow us to suffer in silence. It’s happening and has happened to me. I’m not watching the “Opioid War” play out on a television show – I’m living it. My husband dropped off my legitimate prescription for opioid pain medication 6 days ago. He took it in 2 days early, as per our routine, to be filled on the 3rd day. This happens monthly, not only to me, but to many other chronic pain patients. After suffering for 3 days without my pain meds and being at the mercy of the Pharmacy/Pharmacist, I finally obtained my medication. It’s not safe to abruptly stop taking these meds for several days. I’m in a small subset of pain patients who are candidates for opioids for medical reasons because they do help to lessen the pain.

This is not an “Opioid War.” It’s a “war” being fought by chronic pain patients and some supportive physicians and organizations that stand tall with us. It is all of us against the mainstream media, PROP, addiction specialists (who only see dollar signs in our pain), the CDC, the DEA and some unfortunate people who’ve lost someone to an overdose, I’m afraid.

The reward for my advocacy work is inside my own heart and soul and gives me an inner happiness or peace that nothing material can top. It feels good in my heart and soul when I’ve helped another pain patient feel revived or even just a little bit better, less afraid, less alone.

But today, I am feeling sad. This is the harder part of my journey; along with the loneliness, stigma and then of course my own pain which echoes within me and vibrates like an earthquake. I know other pain patients feel that it seems insurmountable at times. I am a chronic pain patient just trying to survive one day at a time, like everybody else.

So, let’s remember this! These opioid pain medications are available, have low side effects and they are not expensive. People who need them and who get relief from daily chronic pain, should be able to have no problem getting these medications. A true chronic pain patient is not “addicted” but “dependent” on the opioids. We do not get a “high” and we do not “crave them.” We take our medications responsibly.

These opioids help many of us who’d suffer in pain daily without them. My favorite advocate, Helen Keller, once said “I am only one, but I am still one. I cannot do everything, but still I can do something. And because I cannot do everything I will not refuse to do the something that I can do.” I will continue fighting for our cause as long as I can breathe.

We must fight because we cannot afford to lose.