[chris85]

Hi has anyone else experienced a burst of ibs type symptoms immediately preceding tingling in knees, hands and other neuropathic symptoms? I had lots of stomach noise, constipation and lack of appetite then the tingling started, I was a pretty fit 28 year old guy. No other symptoms really, sleep was ok, no fatigue, no brain fog. My b12 has been tested and it is ok apparently. I wonder whether this GI problem is related to autoimmune attack of nerves or some kind of weird malabsorption problem. All inflammatory arthritis tests have been negative, but main areas are knees and arms. I'm on lyrica, fish oil, and vitamin d. This has been going on one year now.

[JoannaP79]

Originally Posted by chris85

Hi has anyone else experienced a burst of ibs type symptoms immediately preceding tingling in knees, hands and other neuropathic symptoms? I had lots of stomach noise, constipation and lack of appetite then the tingling started, I was a pretty fit 28 year old guy. No other symptoms really, sleep was ok, no fatigue, no brain fog. My b12 has been tested and it is ok apparently. I wonder whether this GI problem is related to autoimmune attack of nerves or some kind of weird malabsorption problem. All inflammatory arthritis tests have been negative, but main areas are knees and arms. I'm on lyrica, fish oil, and vitamin d. This has been going on one year now.

Hi Chris,

I already have confirmed autoimmune problems but the neuropathy was a new thing. So, I had stomach problems come in just before my SFN started. This stuck out for me as my tummy problems were strange and unexplainable to me. Symptoms weren't the same as yours however. I had loss of appetite, so bad that I would down those meal replacement drinks. I desperately wanted to eat to sustain weight but something just went awry. I then had feelings of anxiety in my stomach ( I know 100% this was not emotionally enduced anxiety despite doctors efforts to pigeonhole me in there). I had bowel urgency, not diaorreah but urgency and the feeling that way too much was going through my body and out. So not constipation. I was worried as to what was going on as it was so strange and felt very wrong. Then the sfn came on. My sfn is believed to be inflammatory/ autoimmune in nature.

Do you only have it in knees and hands?

Mine started in unusual places as opposed to feet - buttocks of cheeks and thighs which supports the inflammatory nature hypothesis apparently.

[chris85]

Interesting. I had loss of appetite almost completely too, that was the main symptom, that and noise from stomach. Have you had any treatment for this? Mine is almost entirely arms and knees. How long has it been going on?

[JoannaP79]

Originally Posted by chris85

Interesting. I had loss of appetite almost completely too, that was the main symptom, that and noise from stomach. Have you had any treatment for this? Mine is almost entirely arms and knees. How long has it been going on?

Hi Chris,

No treatment. I'm on Max dose gabapentin. Been back and forth to rheumatologists / neurologists over past year. Mine is now every where, every single part of the body imaginable. But, mine came on thick and fast. Everyone's is so different. You can't think that yours will follow that course. My stomach has settled down now at least and appetites good. Gabapentin helps with that alot.

[chris85]

Yeah I am off to a neurologist early next month.

Your right everyone is so different, the body is so complicated!

[chris85]

Its weird. It was getting better 6 months after the event, about 70-80% there. Then I had dicflocnac for another problem, and it regressed. Now it has been a year, no improvement. No way I could have predicted that would happen. A bit sad, but this is all part of life.

[glenntaj]

--have been known to occur soon after gastrointestinal (and other) infections. The infection is often referred to as the "prodrome"--the percipitating event.

This is most well documented in acute demyelinating neuropathies--most classically Guillain Barre syndrome--but is thought to be a possibility in other acute/subacute neuropathy onsets as well. The most common offenders (at least that are known and documented) are Campylobacter jejuni and Haemophilus influenzae.

You may have seen in the news lately that Zika virus has been implicated in the onset of Guillain Barre (as well as birth defects).

[heb1212]

Originally Posted by JoannaP79

Hi Chris,

No treatment. I'm on Max dose gabapentin. Been back and forth to rheumatologists / neurologists over past year. Mine is now every where, every single part of the body imaginable. But, mine came on thick and fast. Everyone's is so different. You can't think that yours will follow that course. My stomach has settled down now at least and appetites good. Gabapentin helps with that alot.

JoP79... Sadly, You sound just like me. My gastrointestinal problems came on severely and suddenly along with body-wide nerve pain and miscellaneous paresthesia - all at the same time and very dramatic. I lost 60 pounds in three months. If I hadn't been overweight to begin with I'd have been skin and bones. I couldn't eat anything because of constant nausea. Even the sight or smell of food was foul to me. It seemingly is linked to parvo virus b19, although the severity of what I experienced is not typical. I also had severe joint pain and was light headed/dizzy. It was a systemic breakdown of sorts. Years later my gasto symptoms have improved but not completely. I'm left what is felt to be a "central sensitization" that includes IBS symptoms. Thank goodness there's a place this to dump our experiences because it's so affirming for what otherwise can not be fathomed.

[chris85]

yeah my gut symptoms all got better, but the sensitivity is still there, hmm, well that is how it is. I'm starting cymbalta soon , maybe that will help.