Post-Infection Syndrome No. 2

It has taken me about six years to figure out the connections among the ongoing fatigue and pain I’ve had, the infection that seemed to start it all off, Small Fiber Neuropathy (SFN), and Slow Transit Constipation (STC). Of course, nobody really wants to talk about “No. 2” (bowel issues) in public! But with post-infection autoimmune conditions on the rise, posting this will be worthwhile if I can help at least one person avoid some of the confusion and long, slow slog I’ve been through. If nothing I’ve mentioned so far relates to you (or to your job in health care) you can stop reading here.

The Post-Infection Medical Shambles

I traveled to China just over 6 years ago and came down with a violent stomach bug while there. I got better after a few days and returned to the U.S. soon after New Year’s 2016. And then I got worse–not only stomach issues, but bright red flushing of my face, a “buzzy” feeling, ringing ears, and feelings of weakness and fatigue. My doctor prescribed an antibiotic, ran some tests (that came back negative for any problems), and said it was probably a post-viral thing that would go away in a few weeks.

It didn’t. The symptoms have varied over time, sometimes waxing and waning, but overall I soon found I had too much fatigue, malaise, and brain fog to keep on working full time. I tried working half-time. Then I retired early. If this sounds a lot like media descriptions of people’s experience with “long Covid,” I don’t think that’s a coincidence, even though my initial infection wasn’t Covid.

Please don’t try to post comments below about how I should try this kind of health consultant, or get that test, or pursue this treatment: My list of things tried now runs to 3.5 single-spaced pages. I’m afraid that most people entering the world of chronic post-infection syndromes will (at least if you have good health insurance) probably end up with similar lists.

You will change doctors and specialists many times. You will be told that your symptoms are “non-specific.” You will often be told that you need to get more exercise (when some days it’s too much work to put on shoes), reduce your stress (the only thing that stresses me is being sick!), and meditate (I’m a Zen teacher). In other words, you will often be told that (a) you’ve brought this on yourself, and/or (b) it’s all in your head. And I wish you the best of luck, if you need serious pain relief.

You will try a number of alternatives to traditional medicine, such as integrative medicine, acupuncture, osteopathy, homeopathy, and massage. (That last one is nice!) You will spend hours on the internet, trying to sort the wacko from the reliable.

If you are lucky, like me, you will at find at least one or two health care professionals who, even though you “look fine” according to all the usual tests, will listen to you and be willing to investigate further. But for the most part all these efforts just helped me rule things out. A few did mild harm.

While I am far from cured, I can point to the things that have helped the most over the last 6+ years:

• First of all, I’ve come to accept that this is my life, to live as well as I can. (See this blog post).
• Second, I’ve had a supportive community, and found new helpful communities. Reading How To Be Sick by Toni Bernhard, joining a local pain support group, and finding groups on StuffThatWorks have all helped me feel less alone, as well as providing useful tips.
• Third, I have finally gotten–though a complex set of channels–some meaningful diagnoses. (See below.)
• Fourth, I have figured out–after extensive trial and error–a few things that are helpful in reducing the severity of my symptoms. (See below.)

Diagnoses

So, as the opening paragraph of this post describes, I have been diagnosed with two little-known conditions: Small Fiber Neuropathy (SFN), and Slow Transit Constipation (STC). But don’t expect your average primary care physician, or even your typical neurologist or gastroenterologist, to know about these. And if you present them in atypical ways, even those medical professionals who specialize in these conditions may be of limited help.

I conjectured a self-diagnosis of SFN using info from the web, and then sought out a neurologist who specializes and does research in the area. It was then confirmed by clinical evidence, a skin biopsy, and a sweat test. This is a type of nerve damage that affects sensory and autonomic nerves but not the nerves that control one’s muscle movements. The other two neurologists I had consulted knew a lot about the latter, but nothing about the former. Technically, what I was diagnosed with is “idiopathic SFN” – “idiopathic” being doctor language for “Heck if we know (what’s causing it).” However, my neurologist said that one likely cause is an autoimmune reaction to an original infection: the body’s defenses may confuse a protein in the small fiber nerves with one in the original bacteria or virus, and attack the nerve cells. I’ll take that explanation, given how my issues started.

It didn’t help that, along with SFN being unusual, I also do not present with the more common or classic symptoms. Lots of numbness, tingling, pain, and redness in the feet (from damage to sensory nerves) and/or problems with blood pressure regulation (POTS, due to damage to autonomic nerves) are the most common. I have some issues with tingling and pain in my feet and hands, but my most distressing problem has been pain and bloating throughout my belly. My neurologist told me that when SFN causes digestive problems these usually involve only the stomach and result in loss of appetite. Since my appetite is fine and my pain is often worse lower in my belly, my neurologist had nothing to say and simply referred me to (my second) gastroenterologist. That gastroenterologist ran no tests, said I had IBS, and recommended exercise and Cognitive Behavioral Therapy.

Which brings me to my second diagnosis.

As time went on gut pain and bloating, most severe at night, became more and more frequent and more and more exhausting. During an attack of this I may not be able to lay still and rest, much less sleep, often for hours and sometimes for the entire night. When this got up to a frequency of 3-4 nights a week, I was a zombie. My (sympathetic) primary care physician referred me to a third gastroenterologist, and after a four month wait for an appointment I was finally seen. This one thought to do a simple abdominal x-ray. Within minutes, we had a clue: I was hugely backed up with retained stool. We knew this wasn’t normal constipation since I could hardly “eat more fiber and drink more water” than I was already doing. She had me take a test that ruled out a loss of coordination at the exit point as the cause. So by process of elimination (pun intended), and corroborated by other evidence, that left “slow transit” as the cause of my constipation: My colon fails to move things along.

Here, again, it didn’t help that my STC symptoms are atypical, too. I had never reported constipation to a doctor, because I don’t have the classic symptoms of reduced numbers of bowel movements and straining. In fact I usually pass stool four or more times a day, and rarely strain. So I didn’t realize I was constipated until this doctor interpreted the x-ray.

None of the three gastroenterologists or three neurologists I consulted was able to connect my nerve problem with my gut problem. But consulting “Dr. Google” yet again, I found that SFN and STC have been clearly linked in the research literature (Raetjhen et al. 1997; Knowles et al, 1999; Bassotti and Villanacci 2006). “More than 70 percent of patients with slow-transit constipation present some degree of autonomic neuropathy” according to Altomare et al. (1999). That is, the nerves that are supposed to stimulate muscle contractions can fail to do their job, resulting in a back-up.

I’m not a health care professional, but I’m a lifelong researcher in another field. I can’t tell you how helpful it is to me, mentally and emotionally, to finally have a sensible explanation for what has been going on, after years of mystery and frustration. (But I’m also slightly pissed off that I had to be an expert independent researcher to get to this point.)

A Few Things That Help

Retiring from my job early. Taking an hour or more nap every afternoon. Eating right before I go to bed. Buying clothes that cover my distended belly. Getting prepared for likely side effects. Going outside–for a walk on good days, as far as the hammock on bad days. Figuring out my diagnoses.

And medications? I current take three different kinds, at varying frequencies.

The first thing (and still the only thing) I found that can often help with the night-time gut pain once it commences is a small dose (2.5 mg) of an opioid, oxycodone. RED FLAG ALERT!!! As soon as you mention taking an opioid to a health care professional, most will do a rapid about-face, going from treating you with modicum of sympathy to treating you like a rabid and dangerous addict. One pain specialist literally ran from the room when I brought this up. I had found out that oxycodone helped only because I had some left over from surgery. While I only take a small dose from zero to six times per month, I was told by one doctor that opioids were the cause of my gut pain. Another claimed that my malaise was due to “withdrawal” from the drug.

While it was very important to stop the over-prescribing of opioids, the pendulum has swung to the opposite extreme of paranoia, stigma, and policies that have made it hard for those actually suffering from chronic pain to get relief from their doctors. (While the opioid crisis has continued, it is no longer about prescribed drugs.) Although I have found a few other pain-sufferers who also use opioids in small and infrequent doses, this sort of use seems to go entirely unrecognized in the medical and pharmaceutical literatures. Fortunately I found a doctor willing to listen to me and prescribe a few pills (amounting to a several month supply!) at a time.

Doctors tried me on all sorts of (non-narcotic) supposed pain relievers, none of which did anything for me. Then someone in my pain support group mentioned Cymbalta, and I asked to try that. While it doesn’t help with the gut pain, daily doses of this second drug has reduced the aching and occasional shock-like neuropathic pain in my hands and feet.

Third, my current gastroenterologist prescribed a couple of expensive osmotic laxatives. One of them did give me some help for several months with manageable side effects, until it recently stopped working. I would like to talk to this doctor about alternatives…but her first available appointment for a follow-up visit is in September 2023 (it’s now May 2022) and she doesn’t answer her email. Sigh. So it’s back to Dr. Google and trial-and-error in the meantime. Unfortunately, the research indicates that while laxatives help people with STC get things moving again, they do not do much for pain or bloating (Dinning et al., 2011). I can attest to that.

The Cymbalta, laxatives, and eating right before bedtime (discovered to be helpful by pure accident) have gotten my terrible nights down from 3-4 a week to 3-4 a month, which is far more manageable. I usually just suffer through them, though if they come all in a row or I particularly need to function the next day I may take oxycodone.

And Onwards…

The Covid pandemic has, of course, been terrible in terms of the large numbers of lives lost, and lives damaged over the long term or permanently. Those of us who already had chronic health issues, however, post-Lyme disease or other infections, also (without wishing Covid on anyone!) have seen some benefits for ourselves. While many of us have trouble getting out to gatherings, Zoom meetings are much more accessible and now much more common. And post-infection syndromes are finally getting more press.

Will they get more research and will useful treatments be found? Will doctors stop telling their patients that “It’s all in your head,” and running from the exam room when symptoms or treatments fall outside of their comfort zone? We’ll see. I hope so.