Small Fiber Feels Killing Me & I Can't Take It!

Posted by dancinginflamez @dancinginflamez, May 1, 2023

Hello. I am in contact with my neurologist but talk to him a week from now. Lately the past few months, it's escalated so fast. I can't walk at all on my own. I can't bathe or left my arms for long. I need lifted in & out of tub. Past few days, have been H*ll honestly.

I was recently diagnosed with Small Fiber Neuropathy a year after my Crohn's diagnosis (which is severe right now. A lot of painful cramps). That is how my dr links it.

I also have a blood clot in my brain that blocks spinal fluid from leaving. I have contstant pressure & head pain 24/7. I take a Fentanyl Patch, 8 tramadol a day, Medical marijuana, Aleve. I was on 16 tramadol originally before I collapsed, but could have been small fiber.

I did mess up. I was on Methadone for a while & continyed to take 1 0mcg pill a day. I was supposed to stop a long time ago. I told my mom did it hear & there. With all the rest, shoukd I be ok? My mom took bottle so going cold turkey.

Anyways, my legs are always buzzing & the body pain is worst I've ever felt. I feel like I'm dying with not being able to sleep. I cant with this. Anything to help? Plz?

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

John, Volunteer Mentor | @johnbishop | May 1, 2023

Hello @dancinginflamez, Welcome to Connect. It must be just awful for you with so much pain and not being able to sleep. You are not alone with your symptoms. I'm hoping your neurologist appointment next week provides some answers for you. I'm wondering if you might find the following discussions helpful:
--- Better Sleep with Chronic Pain?: https://connect.mayoclinic.org/discussion/better-sleep-with-chronic-pain/
--- Small Fiber Neuropathy: What helps?: https://connect.mayoclinic.org/discussion/small-fiber-neuropathy/

Since you mentioned you also have Chron's disease, I thought you might find the following article helpful:
--- How Do You Deal with Cramps in Crohn’s Disease?: https://www.healthline.com/health/crohns-disease/crohns-disease-contraction

What kind of treatments have you had for your Chron's disease?

dancinginflamez | @dancinginflamez | May 1, 2023

Thank you so much for your message. My ex- GI prescribed Humira (which my Neurologist believes could have helped trigger). When I wasn't improving, he abandoned me completely. Continued to refill my scripts so we know he got all our messages. I was at the hospital & that was the last time we tried calling & knew didn't care at all. It took months to find one that would see me within a year in my area due to my state's helath care faciliteies are in state of emergency from too many people.

I'm in process slowly moving to another. We wanted to fin one to not in his network for obvious reasons & because I am filing for abandonment. I havrn't seen the Gastrointerologist yet. I am seeing the Nurse practioner right now. I had my first infusion of Stelara. I guess I'm getting my shot on the 17th? So far haven't gotten any calls or emails.

My mom called the emergency line because I was hyper-ventiliatibg & start to get light-head or feel like black out for a second. She gave me an antibotic called Xifaxan 550 Mg tablet 3 times a day. It's suppossed to help with the severe distension & bloating. I'm very tender. It isn't food related & I am pretty sure my strictures are back because I've had all the signs like I did before all those times. My blood didn't show anti-bodies so he didn't believe a lot.

The reason I had to go to him in the first place was when I had the endoscopy the hospital sceduled, There was a wall blocking my stomach from intestines completely. He couldn't get the needle through. I needed to go to a doctor that had a special tool to be able to poke through the tiny hole that was there.

I do always feel a little antsy & I believe it's from the trouble breathing but not sure. The painful intense tingling is what keeps me up as well.

Thank you so much for your reply. Nights are really horrible & when things seem to be be worse. I don't think I get through it, and I am alone during it which is rough. I can't explain how bad it is. I actually have been sleeping during day & up thru the night. I hate light & noise. So its frustrating. Looking for abything I can take over counter or natural until my consult at a pain clinic & hopefully get something until improvement. I HAVE to make that appoinment. It was so hard to get in. Hoping to try Ketamine.

vault | @vault | May 2, 2023

I have Small Fiber Polyneuropathy (SFPN), and my Neurologist prescribed Gabapentin (Neurontin) to block the pain signal From the tissues in my burning feet & lower legs. He added Duloxitine (Cymbalta) to block the pain receptors in the brain. I only get relief when I take BOTH.
I have Autonomic nervous system issues, too, like Gastroparesis (slow stomach emptying), slow gut motility, Constipation, urinary hesitancy, and reflux. A wedge pillow helps eliminate the reflux; a Gastroparesis diet without raw vegetables (cooked only & sliced small) helps all of the GI issues; and Sticture dilation by my GI provider helps swallowing issues. Doesn’t solve everything, but helps A LOT.
Hope this helps! Best Wishes for getting relief!

mom2204 | @mom2204 | May 3, 2023

Go to detox and don't try to detox on your own. Yes cold turkey but only with support.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | May 4, 2023

In reply to @vault "I have Small Fiber Polyneuropathy (SFPN), and my Neurologist prescribed Gabapentin (Neurontin) to block the pain..." + (show)

@dancinginflamez
You sound young- how old are you?
It must be frustrating not knowing where the pain comes from.
You mentioned that you have a blood clot in the brain interfering with the flow of spinal fluid. I’m sure that causes pain too. Can anything be done with the blood clot?

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