Conspiracies Against Wellness Radio Broadcast


Hello Luvs,

I was recently a guest on a radio show, “Conspiracies Against Wellness “. I was interviewed by Jonelle Elgaway and I spoke about the Opioid crisis. Please listen and answer my “call to action” plea at the end.

Please feel free to share this. I encourage you to share it so as many people as possible will learn about all that the chronic pain community is going through.

Here’s the link:

Thank you!

https://youtu.be/N8cBhUStCnA

We ARE In The Room



If you visit the Emergency rooms in Michigan, you see and feel many horror stories.  I don’t visit the ER and have not since 2007, when I was diagnosed with CRPS.  I had chronic pain even before that, from several chronic pain issues and illnesses stemming from a car accident and other reasons. But the last time that I went, I was treated like a pariah because I was taking pain medication.  They never asked me about all of the different therapies and non-Opioid medications that I’ve tried.  They don’t know all that I’ve been through.  They also don’t even ask me if I’ve ever been addicted to anything in my life.  The answer would be “NO”. I’ve never smoked anything and I don’t even drink “once in awhile” socially, not ever!  Yet, the Dr.’s and nurses treat people that take small amounts of pain meds as if we are someone to be scorned.  The amount has gone down but it’s not ever going up.  It works for me and for about 25% of the chronic pain population. Only 1% of  legitimate chronic pain patients ever become addicted to pain medications given to them by a pain management physician.  For some people this is what works after numerous other medications and therapies have failed.

I want to share with you just an overview of something I read in a Detroit Newspaper article yesterday (Link to Detroit news article  .  This is what is happening in Michigan in 2017. I’m praying for change and I’m going to advocate to help the legitimate chronic pain patients. I have already written to and gotten a response from the other letter that I wrote to the White House and Governor Chris Christie.  All that I got in return was a fancy form letter from “The White House”.   I can’t give up.  I refuse to give up hope, without hope, we have nothing left.  We must not give up and we need to keep hope alive.

This is just the summary of what actually happened to a family in Michigan.  I read in our Detroit, MI newspaper recently, and it is just a summary:   “Over on a gurney, a woman screams out writhing from pain. A Dr. stands idly by, just watching a monitor. He stood away from her as she was doubled up in pain, screaming about pain in her abdomen.  Her husband walked in and saw this and he new about his wife’s chronic pain condition(s), but had never seen anything like this from her.  The Dr. was expressionless, as if she was not even in the room and as though she was a non-feeling “thing”, a non-being person with feelings and a soul”. Imagine if it was his wife, his mother or child? Would he still feel the same?

So moving on, …”as the husband approached this so called “Dr.”,  the physician was startled and reached out his hand to introduce himself. He said to the husband, “yes she’s “complaining” about pain. He said “we will “try” to address it. Next, he said something horrifying, but not new to our American chronic pain communities.  He said “addicts often come to the emergency room looking for opioids”.  The woman’s husband knew about her medical condition and he knew enough to realize that something must’ve gone terribly wrong after the nerve block procedure she’d had done earlier that day, while he was at work.  They’d been to Cleveland and Mayo clinics and even to the U of MI hospital. This poor woman had gone through numerous medical procedures and attempted over 40 medications. They finally had found a regimen that worked to relieve enough of her pain so that she had some semblance of a life now and then. The only effective regimen was very complicated but it included Opioids”.  The way she was treated just recently, in 2017 is barbaric to say the least.

This is happening not only here in Michigan, but all over the USA.  Just today, 9-17-17, I read an article that was sent to me through my email. The article written by Julie Mack in “MLive”, discusses many statistics about Michigan deaths from “overdose of Opioids, including Heroin”. Opioids for legitimate and suffering chronic pain patients and Heroin, should not even be compared in the same sentence; let alone included together in the same article showing numbers of deaths.  The article even states that “these numbers are based on death certificates and list only deaths that specify “Opioid and/or heroin” as a factor”.  I want people to see the difference here. Legitimate chronic pain patients who’ve been doing well, taking opioids, after trying many other methods to relieve their pain; are not even in the same same category as heroin addicts.  Unfortunately, from the death certificate, they just lump everyone into one category and that’s hurting the pain patients.  We are suffering due to the ignorance of certain Government officials and the paralyzing fear that has been put into our legitimate and caring Pain management physicians.

In Michigan, a bill was recently introduced into the House of Rep.  This HB 4601 would put absolute limits on the dosages that chronic pain patients may receive. The patient’s medical history, illness(es) or lack of any proof of abuse or addiction are suddenly irrelevant. The Government would be mandating that “no doctor may prescribe opioids to a chronic pain patient exceeding 100 morphine milligram equivalents per day.” No matter what! Oh my goodness, everyone’s bodies are different and dosages can affect people differently.  If this bill goes into law,  legitimate pain patients will be bedridden and writhing in pain.  Please help us and learn about this side of HB 4601. Our Michigan Government needs to step in now, to help other government leaders and those in Washington D.C., to understand this huge gap between pain patients and drug addicts. There are two distinct groups included in HB 4601, but we are being “lumped together” as one.

In Oakland County Michigan, the Board of Commissioners has taken a stand against this historically old proposal. They unanimously passed a resolution stating that HB 4601 “infringes on a doctor’s ability to care for patients by substituting  the Legislature’s opinion for the opinion of individual medical professionals.” The board also advocated a balanced method “that specifically targets addiction and abuse while protecting the rights of patients for whom these prescriptions are medically necessary”.  Please help the chronic pain community. We are human beings and we deserve our rights and our lives protected by the state of Michigan and the USA government as well. Please don’t take the rights of our educated physicians away from the decision making process. Educate them more in the area of chronic pain management, but the doctor patient relationship should still stand.  Our Senators, Governors and even our President, need to be educated in this area.  They need to understand the differences between addiction and dependency; along with the difference between drug addicts versus legitimate chronic pain patients.

I implore you to help stop this in Michigan and everywhere. I understand that balance is hard, but we need to think of the real people that HB 4601 affects.  Slashing dosages of opioid pain medications or taking it completely away from people that it has been effectively helping is cruel and abusive. This is America! What is happening to us when the government steps in and takes away a doctors right to treat his patient effectively?  If we can focus more on the people, we would start tailoring laws to address societal harm and avoid legislative dragnets that sound good in headlines but bring danger and harm to too many  citizens. We need to do better for the legitimate chronic pain patients for whom all other methods have failed.

We ARE here, we ARE in the room.  Please join me in helping to make the government and elected official listen to our plea!

Excerpts taken from DetroitNews.com

9-12-17 “Opioids Treat Real Pain; Don’t Limit Drs”

Never Judge By Outward Appearances 




During this September 2017, we have been urged by the U.S. Pain Foundation, to share our story on social media.  I was reluctant to do this, but then I decided to share after a mini documentary that my husband & I were involved in was released.  Let me explain:

I was recently involved in a video on Social media, called “Becoming Incurable”, directed & produced by Victoria Suan.  I’ve had several people see that video, which shows only a minuscule piece, of one very small illness that I live with.  People saw me with a nebulizer and now think I have only Asthma.  Asthma isn’t fun even on its own. But between this and seeing me involved with the U.S. Pain Foundation during Pain Awareness Month especially;  many people are assuming things that shouldn’t be assumed.  None of us like being assessed by what we look like on the outside; with regards to Invisible illnesses.  Several persons have told me that they “wish they only had what I have”.  Others have said that “they wish they could do more & be involved more, like I am able to do “. 

My name is Suzanne and I have been disabled since 1999; 1st from PTSD and stage two chronic Kidney disease. In August 2002, I was in a motor vehicle accident which caused multiple injuries,including:   a Traumatic brain injury, hearing loss (I acquired 2 hearing aids), vision lessened & eye issues, many (approximately 8) surgeries, & 3 years of TBI rehab. I still suffer with short term memory loss and other effects from the TBI.  In 2003, I had to have a dual chamber pacemaker placed for “Sick Sinus Syndrome”  (it is a Bradycardia/Tachycardia Arrythmia), along with Dysautonomia/POTS.  After seven or eight surgeries and a pacemaker, I was diagnosed with” Complex Regional
Pain Syndrome”, in 2007. It started in my right foot after surgery and it spread over the years to both feet & knees.

 In 2005, I had an M. I. or heart attack. In 2006 after the heart attack, I was diagnosed with Atrial fibrillation and was put on Blood thinners. But, I suffered a CVA/stroke in 2006. I have Mitral valve prolapse, Tricuspid valve prolapse, mild Pulmonary Valve Hypertension, 

In 2013, I had to have pacemaker replacement surgery (my first pacemaker was placed in 2003). When the Heart Surgeon got inside of my chest, they found that the entire pectoral muscle had to be totally rebuilt. The old pacemaker had been placed in the muscle instead of inside of a bag near the muscle. Over 10 years, It wore a hole right through my pectoral muscle and then had to be rebuilt during a long surgery, which was a very painful recovery afterwards. The Dr. informed me that aside from the Systemic CRPS, the continuing post surgical pain and Lymphedema in my left arm, is similar to the pain that occurs after a mastectomy.  Though, I did not have a Mastectomy.  

 The surgeon, a Neurocardiologist, had researched RSD/CRPS & did an internal surgical wash of Bipvucaine to try and “head off”systemic CRPS, & prevent it from spreading. It ended up being unsuccessful and the CRPS progressed into “Severe, Systemic/Full body CRPS”. It’s spread everywhere including my eyes and my mouth.  

 I have a few other chronic pain illnesses, including: CKDII, Arnold Chiari Malformation I (with Chiari Migraines),
Degenerative Disc Disease, RA, OA, Gastroparesis, S.I.B.O., Chronic Erosive Gastritis, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease (EDS-4/vascular), multiple herniated & bulging discs (with L4-5 Radiculopathy) at L4,L5& S1 + C5,C6 & C7. CID (Combined Immunodeficiency Disease/an Autoimmune disease), Eczema, Prinzmetal Angina (aka “Coronary Spasms”), Lymphedema, Scoliosis, Asthma, CAD, Right Long Thoracic Nerve Neuropathy, Severe Dry Eye, and just too much to mention here today! But you get the idea!  

I’m not the only one! There are so many chronic pain warriors with a list as long or longer!  I’m not a candidate for a Spinal cord Stimulator or an Intrathecal pain pump, because of my “Combined Immune Deficiency Disease”. It could cause paralysis and/or infection in my Spinal cord. So I’m limited in what I can do for my chronic pain. I’m one in a group of chronic pain patients, who has had to resort to taking pain medications. But in doing this, I can have some semblance of a life outside of my bed or the sofa. Believe me, since 2002, I’ve tried many, many medications starting with Lyrica & Gabapentin. I went through 8 years of physical therapy. I had to go to TBI rehabilitation for 3 years. I’ve had many braces, therapies, tests, TENS unit (prior to the CRPS) and more! Depending on the day & how much I need to do; I have:  hand braces, arm sleeve covers, 2 knee braces,     2 AFO’s, a wheelchair, Motorized scooter, walker and a cane. Right now the pain medications are what give me the ability to do some activities outside of my home, bed or sofa.  

 This is my story…. it’s  the “Readers Digest” short version.. It’s a long arduous and continuing saga of chronic pain and surgeries. But I just don’t give up HOPE. I make it a Verb and try to change negatives
into positives. Rather than do nothing, I try to do something. For fun, I make You Tube Videos of my favorite songs or stories translated into American Sign Language (@ASLSuzyQ).

 I’m an Ambassador for the U.S. Pain Foundation. I write in my blog, “Tears of Truth” @tearsoftruth.com. I am a writer
for the National Pain Report.  I also founded & run a few support groups for chronic pain & RSD/CRPS.  I’m also a chemo-angel. I am part of a collaboration group to help with the Opioid crisis (the crisis being the lack of Opioids now & the government taking pain meds away from legitimate chronic pain patients).  I am a patient leader for WEGO Health and a mentor for newly DX CRPS patients for RSDSA.  Setting all of this aside, just as one of my previous blog posts/ news articles states: “There are no competitions and no winners!”  (Can be read in this blog or here at the Ntl. pain Report: http://nationalpainreport.com/no-competition-no-winners-8833089.html)

In July 2017, I was certified by the U. S. Pain Foundation, to lead an “in-person” Support Group. Without having my wonderful, loving husband/caregiver, Craig; my loving U.S. Pain Foundation Family, my WEGO health friends, my friends, family and my writing, I’d be lost in all of this. 

Here’s the link to my Facebook page for this blog. This link takes you directly to the video called “The Incurables”:  https://www.facebook.com/TearsofTruth.SuzanneStewart/posts/1943805715875595


Living With Invisible Illnesses


 Showcasing what many of us live with and deal with on a daily basis:

From Mini Van to Wheelchair In 10 Seconds!


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I awaken each day; the first thing that I do is cry. I cry because I’m in pain and it is as though someone stepped on my back in the night and feels “broken”.  My husband hears my cries and he goes and gets my pain medication. Medication that I’ve taken since 2005; and never more but sometimes less. He proceeds to start making breakfast, coffee and give tap water to our Cat. It’s her favorite thing in the morning aside from running up the stairs to get me after about 20-30 minutes. My husband says “Luna, go and get Momma”!  She bolts up the stairs and “Meows” at me to get up. She doesn’t stop until I am upright and together we go down the stairs. It’s almost 7:00 am, and most likely I just went to bed at 4:00 am. I have some tea and toast. We chat a bit and he goes to work.

I have choices to make and they are not easy ones. My oldest daughter only lives 2 or 3 blocks away, with her husband and our two eldest granddaughters, ages 4 and 2 1/2.  We see each other often but it’s so hard for me to fight the deep, deep fatigue and pain to do  a lot of outings and I just am not able to babysit alone, without my husband there.  I think it upsets her and I feel so bad inside because I cannot do what I wish I could do. The first year and a half that we were reunited (**my daughter left home at age 18 and was away for 10 years. This is not a story about those very sad times. This is about the reuniting of a family that was broken because of a car accident.  My daughters were used to me being and doing everything and suddenly I could not do anything, not even dress myself. My eldest ran from the pain and surgeries), I think I ran on adrenaline.  I saw her/them daily and then afterwards, I came home and crashed. Was that fair to my husband? No, it wasn’t! Did he say one word about it to me? No, because he was so happy to see my heart whole again. It was broken for 10 years!

So now it’s been about 3 years and so much has happened. I lost my Dr. of 12 years and the old pain medications that made easier for me to do more, it seemed.  My pain Dr. is much better now and the regimen that I’m on is safer.  But I’m unable to do the activities that I wish to do with them.  If I was the person that I had been, I would be making snow angels with them in the snow.  I’d be baking cookies and running around playing tag and “Duck, Duck Goose”. I do play some “sit down” (for me) games with them and we have tea parties. We watch Disney movies and I love it when they sit close to me and play with my hair. I used to take my walker to the zoo or on daily outings. I sat down when I was tired and I just was happy to be together.  I’m still so very happy to have everyone together. I could never have had a happy life without both of my daughters and my grandchildren it.

Time has changed me and now I am tired and in pain much faster;  more deep than before. In 2013, my CRPS changed from being in my feet and knees; to “severe systemic and disseminated”.  It happened after what was supposed to be a 45 minute surgery but turned out to be a 3 hour heart and pectoral muscle rebuild surgery.  I’ve never recovered and have felt a deep deep fatigue since then. If I do something for 2 hours one day, then I’m in my recliner for the rest of the day. I don’t want it to be this way, I don’t like it at all.  I want to spend a whole day at the zoo with my granddaughters.  I feel that my oldest daughter gets so frustrated when I cannot do the things I pushed myself to do at the beginning.  Nobody understands “Invisible Illnesses”, not even our own families or friends. We used to go to dinner each Friday with my best friend and her husband. I’ve cancelled a few times in this past year and now I can feel a difference.  Things that I wish I could do, I no longer am able to do.  I love and look forward to babysitting when my husband is home and he is with me.  He is there so that when I start to be too tired and in too much pain, he takes over.

But I lose friends and have lost people related to me. My own family cousin, who’d been my best friend for years; stopped talking with us after the car accident.  My husband had called and asked her to come over because I could not be left alone at the beginning. I couldn’t dress or undress myself.  I couldn’t even go to the rest room without help.  My cousin and another person who was a good friend of ours, told Craig “No, I just can’t help because it’s too sad.  When I get sad, then my family is sad and I cannot do that to them.” She took herself out of my life and so did the rest of my cousins, and family.  I called my own brother after the accident from the hospital. I had been unconscious and when I finally got to a room, I tried to reach for the phone and missed. I hit my cheek instead.  I called the only number that stuck in my head due to the TBI, it was my oldest brother. He answered the phone and I told him I ‘d been in a car accident, a bad one. I told him I was in the hospital and he answered back by saying, “Oh…you need someone? …..CLICK” and he hung up on me. Craig is my hero and the only person who’s ever truly loved me unconditionally. He’s there when I need him and when I think I don’t think I need him so much.

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The Many Faces of Dysautonomia (NPR Article #10)


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Have you ever felt so hot; sweating so profusely and you thought you might spontaneously blow up from the inside out? That is how those who live with Dysautonomia feel much of the time. If the temperature drops and we get just a little bit cold, then we are freezing cold, our lips turn blue and we are shivering. It takes our bodies a long time to regulate when there’s a temperature change. We may start to sweat and feel so very hot from the inside out!  Many people don’t seem to understand the  fatigue, heart racing, inability to adjust our body temperatures, the GI upset,motility issues, inability to sleep or the pain. All of these feelings fall under this medical condition called “Dysautonomia”.  It happens to someone when their Autonomic Nervous System has gone berserk! (**The Autonomic Nervous System or ANS is every system in the body that is involuntary. This means the G.I. tract or digestion, Respiratory, breathing, Heart Rate, Pulse, Blood Pressure, Body temperature and other involuntary brain functions as well).

Quite often those with Dysautonomia also live with Postural Orthostatic Tachycardia Syndrome. POTS causes feelings of being light-headed, fainting, dizzy, fast heart beat or tachycardia, chest pains, shortness of breath, GI problems/issues, inability to exercise, and sensitivity to heat and cold, as I mentioned above with Dysautonomia. Some people actually do faint while moving their body from the laying down or sitting position to standing upright.The diagnosis for POTS is usually made when a heart rate increases approximately 30 beats per minute (bpm) a few minutes after standing. Some people with severe cases of POTS, might need to get a pacemaker. There also may be other heart problems going on besides the Dysautonomia/POTS; as in my case.  *”Many times POTS shows up in women who appear to be “normal and healthy” on the outside. Researchers have found that these issues and symptoms are actually as disabling as such conditions as COPD and CHF” (*this information was found on “Dysautonomia International” website). Another common diagnosis for persons with ANS dysfunction or failure is “Arnold Chiari Malformation”.  This is something that a person is born with but it usually goes unnoticed until they have symptoms and then an MRI. It happens when the brain stem swells and doesn’t fit very well into the spinal column. It causes great headaches called “Chiari Migraines” in the back of the head. In my case I’m unable to hold my head up for a very long period of time because it feels weak and painful. “Chiari” can cause a number of disturbing issues for those who live with it. Some of these are: migraines, fatigue, muscle weakness,slow heart rhythm, Scoliosis and Central sleep apnea.

There are many “faces” to Dysautonomia, with its different symptoms and illnesses.  I’ve mentioned some of them, but there is so much more to this “Invisible Illness”.  For example; there are a number of other health issues associated with it and people don’t realize that some of these are linked together.  Some of these are:   CRPS or Complex Regional Pain Syndrome, Gastroparesis, Ehler Danlos Syndrome (EDS), CFS/ME and more.  Many times patients feel like they are just living with many different ailments.  Some physicians think that their patients with all of these different “issues” are just complicated. They don’t always look at how all of these ailments could be the many pieces one “puzzle”  that all fit together  because they are all under this “umbrella” of Dysautonomia.

*Over 70 million people worldwide are living with various forms of “Dysautonomia”, which can cause a malfunction of the Autonomic Nervous System (*numbers from “Dysautonomia International” website. Please try and remember these things when you see someone who appears to look fine or “normal” on the outside.  If they take a Handicapped parking spot, they need it and their Dr. has approved it! People don’t have the HC placards for fun. Please don’t be mean or rude. Don’t say something sarcastic or unkind.  I’d rather that you just ask me if you have a question about my disability status. I’m not required to answer you, but I will because I want people to know. You just never know what is going on inside of someone’s body. I hope this bit of information has helped you to understand POTS and Dysautonomia a little bit better than before. If you have a friend or family member with these illnesses, please give them the benefit of the doubt, when they are not feeling well. If they’re exhausted for what you think is “no good reason”, if they’re tired because they were up several nights in a row, due to their pain, or illnesses; please don’t judge. The worst thing that you can say is “well you were up til wee hours of the morning, so it’s no wonder that you’re tired”.  We cannot sleep like you “non ill” persons can sleep.  Just please be kind if we are not always at our best and/or if we have to cancel an outing with you.

Some of the statistics or medical information was taken from the “*Dysautonomia International” website at WWW.Dysautonomia.org. But most of this was my own words, feelings and from my own personal experiences that have happened and that are still happening to me every day.

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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