Neuropathy/IBS Pain

Hello @crisp358, Welcome to Connect. It sounds like you have a few things going on with your health that is definitely affecting your quality of life. I think it's a good idea to discuss your symptoms, possible causes and treatments for relief with your PCP and possibly ask about a referral to a specialist. While we wait for member with some similar experience to respond, I thought you might want to scan through the search results for discussions and comments on Connect for "neuropathy +abdominal pain" - https://connect.mayoclinic.org/search/?search=neuropathy++%2Babdominal+pain++

I did find some recently published research from Jan 2024 that seems to be similar to your symptoms.
--- Can Small Fiber Neuropathy Explain the Overlap Gastrointestinal and Non-gastrointestinal Symptoms in Some Irritable Bowel Syndrome Patients?: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10774798/

There is some information on planning your conversation with your PCP on one of my favorite sites that you might find helpful - https://www.patientrevolution.org/tools. Do you normally write down a list of questions to take to your appointments with your PCP?

I started off with similar symptoms. It began with numbness and tingling in my feet and calves, that spread, and prompted an arduous series of appointments with neurologists. I was diagnosed with small fiber neuropathy. The first neurologist I saw missed it because like you, my EMG was normal, along with my blood tests. I was watching and waiting too, but it got worse and then I developed other symptoms.

With SFN, if it’s just sensory, the small fiber nerves affect sensation and temperature and pressure. Because of this, it’s negative on a EMG. I have no idea why the first neurologist didn’t think of that.

But small fiber nerves also affect autonomic function (things your body automatically does)—like digestion, breathing, sweating.

I have GI symptoms as well and hyperhidrosis, but we don’t know for sure if it’s related to the neuropathy. I also have central sensitivity syndrome, POTS, and HSD/hEDS. Technically I have a fibromyalgia diagnosis but it seems redundant with the central sensitivity.

So it is possible that the symptoms you mention are linked. Or it could be that they’re occurring together. One thing I learned with functional GI conditions like IBS is that stress exacerbates it because if the mind/body connection, and of course chronic pain will do that. There are treatments and strategies though, so it makes sense to talk to your PCP about it. For me, there are not many great options for medications for neuropathy or my chronic pain; I’m very sensitive to medication. I’ve relied more on pain neuroscience based PT and interventions.

For the GI conditions, I work with a GI-trained dietician and GI psychologist who teaches CBT and gut directed hypnotherapy (which has been shown to work for people).

You’re not alone, and I think it makes sense to ask more questions and talk to your PCP. I think we all want an answer when we suddenly aren’t feeling well and start having numbness and tingling. The answer isn’t always satisfying, but for me the uncertainty is the most challenging part.

Thank you for the information! I plan to write down my symptoms and questions for my appointment with my PCP next week so I can make sure I address all of my concerns.

Thank you for telling your story. I want to see if my PCP will be comfortable treating the neuropathy first, and if that doesn't work I can ask for a referral to Neurology again.

You're welcome. It's difficult; from what I remember, I was so stressed when I first started having symptoms.

Usually, a PCP is able to run any labs you might need to rule out the more common and more easily treatable reasons for neuropathy, so you might not need to see Neurology again unless you want a second opinion. (I need a second opinion because my symptoms progressed beyond the sensory neuropathy symptoms.) They can also prescribe the typical medications. The most common are: gabapentin or Lyrica, Cymbalta/Duloxetine, amitryptiline in low doses can sometimes help chronic pain and GI symptoms, or topicals like lidocaine patches and capsacin). There are also some very active discussion groups here with tips from others about what's helped their neuropathy.

Wishing you all the best and hope you feel better soon.

Starting with your primary is good. I had symptoms similar to you. My primary referred me to a neurologist and he missed my issue. Fortunately, the second one figured it out. Please ask for a B12 lab test. This can have severe symptoms if too low. I never realized how serious it could be.

I hope you find your answers. I’ve learned to really advocate for myself. And, listen to my instincts.

Related, I also found that excessive amounts of B6 can cause neuropathy! I was using Liquid IV for POTS and it has additional B6 in it that we found exacerbated my neuropathy.

The Neurologist ordered B12 and Vitamin D labs and both came back low so I supplement those and they are in the correct ranges now. I stay away from gluten and refined sugars, and I follow low fodmap. Before those changes, my mental and physical symptoms were a lot worse.

I have had a problem with IBS since my thirty’s Finally had to have an ileostomy in 2012. Then began my autoimmune problems with my hands and now my entire body in my late seventies. I have Raynards, scleroderma and sjogrens decease. Then started having problems with body … and now have small fiber neuropathy. Now I’m having nerve pain where my Rectom was . Also trouble sleeping, extremely fatigued, brain fog and troubled eating, swallowing and maintaining weight.
I’m so sorry you are also going through this at such a young age. Hard to get others to understand even the Doctors. I hope you find a great team of physicians.

Thank you. It's been difficult to find providers who take me seriously. I've tried waiting it out and thought about dealing with it without medical help, but I believe I will find help eventually.

I hope you're having a peaceful day today 🙂 Thank you for sharing your story with me.