Autonomic Neuropathy

[Judie P]

How many of you have autonomic neuropathy and what are your symptoms of it?

[vrystaat]

For years I have had abdominal problems associated with SS.

These have been mostly unexplained by Medical Professionals. As always the latter do not have any detailed information.

The problems are:
Abdominal pain and cramps. Also diarrhea.
Malabsortion of fat and vitamins
Colonic pain from Microscopic Colitis.
Acute & Chronic Pancreatitis.
Gastritis
Swallowing difficulties

After 20 years, a new Rheumatologist suggested Autonomic Neuropathy in the abdomen. This can cause all my symptoms.
The problem is untreatable.

But it's nice to know.

[Carolina]

Dear Judie P,

For those who don't know what autonomic neuropathy is here's the Mayo on the subject:

https://www.mayoclinic.org/diseases-conditions/autonomic-neuropathy/symptoms-causes/syc-20369829

Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. It can affect blood pressure, temperature control, digestion, bladder function and even sexual function.

The nerve damage interferes with the messages sent between the brain and other organs and areas of the autonomic nervous system, such as the heart, blood vessels and sweat glands.

I have autonomic neuropathy which affects my:

Urinary System and Bowel System
Gastro-intestinal system: esophagus and small intestines.
Sweating abnormalities and difficulty regulating body temperature.
Sexual function began to be damaged when the first neuropathies appeared, alas.

I have had surgery on my esophagus, and antibiotics for the results of neuropathic damage to my small intestines (SIBO).

Otherwise the bladder, bowel and other problems have no treatment that I know of.

Most of the testing for autonomic neuropathy focuses on blood pressure and heart issues, which I do not have.

As with so many of the neurological damages of my Immune Disorder, there is almost no treatment, and never any cure.

Regards, Elaine

[rnathans]

I have gastroparesis and other digestive ills-likely caused by autonomic neuropathy. I have peripheral neuropathies as well. Being treated with immune suppressants has helped. When I was really sick in 2003-2004 and needed a feeding tube I was treated with cytoxan. The gastroparesis got much better and the feeding tube was removed. Cytoxan is a very strong medicine and there are other options one could try that were not available then.

More recently I have been treated with rituxan when my gastroparesis flared and it has helped. It has also improved my neuropathy and improved my walking.

[warmwaters]

I have gastric issues and chronic diarrhea, which started around the time I started have fatigue issues. My doctors have assumed this is related to autonomic issues. I also have some neuropathy, temperature regulation (I'm hot, I'm cold, no, I'm hot), and light headedness that is just shy of being diagnosed with POTS.

So I believe it's real.

[Carolina]

Dear warmwaters,

What you are experiencing is VERY REAL.

I also had serious gastro intestinal problems, with almost sudden onset.  It turns out I have SIBO.

Have you been checked for SIBO?  The test is fairly simple, tho' it takes two hours.

https://www.verywellhealth.com/how-to-get-tested-for-sibo-4125868

The treatment (YES, there is a treatment) is a course of antibiotics  (one week) and then my SIBO was gone, and so were my symptoms.

Since the problem is caused because the small intestine fails to move normal bacteria into the large intestine, it is usually caused by our old 'friend' neuropathy.

It may come back, and then I will take the antibiotics again.

Just a thought. 

And YES what you are experiencing is real.  Neuropathy occurs in our cases because our Disordered Immune system attacks our own body.  That is what Sjogren's is, of course.  Damage to the system that produces fluids. 

Fortunately I have some of the best trained doctors in the country, at Duke Medical Center.  Often what we experience cannot be identified by tests, or 'treated' and certainly not 'cured', but what we experience is most certainly real.

Knowing that what we experience is real, doesn't make it any easier, but it certainly validates our experience.

Regards, Elaine

[warmwaters]

Elaine- Just to reassure.

I do know it's real. I've been lucky with doctors, and was seeing a team at Stanford  that included a great gastroenterologist and a team that does assessments of autonomic disorders. In my particular scenario, very limited options left on solutions/pallatives, but... then I don't react well to quite a few drugs.

Just found out something interesting though - turns out there's some pretty good literature on using hypnosis to treat IBS. It doesn't solve the frequency issue (as far as I can tell), but helps with the experience of the pain associated with it.