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Small Fiber Neuropathy

Neuropathy | Last Active: Aug 30, 2023 | Replies (105)

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@teetee7

Hi @wolfbauer . Thank you for your detailed reply! I really appreciate all that you share. I don't know about private messaging on here and I forgot to check before writing back to you. I apologize for that. I am very interested in reading any links you have and learning about your Ketamine infusions. I am so sorry to hear about your recent falls and all that you have going on with your back. You certainly do not need any further injuries. It is the strangest feeling to wake up on the floor and trying to recall what happened to get you on the floor. When you had your car accident, did you have any head injuries? I believe the sudden and hard impact to your body was trauma enough, to cause future problems with your Autonomic system. This is purely my opinion only - based on what has happened with me and speaking with others who have had traumatic injuries. The traumatic fall I took in 2008, was an accident. I fell from a playhouse structure onto the hard earth. My husband had to resuscitate me three times before the paramedics arrived. Thank God he knew not to move me (he was going to be an MD and worked in a hospital for over 5 years during his college days). I did suffer a TBI which resolved itself while I was in the hospital. I can relate to your anomic aphasia! I am thankful for brain teasers online, ha! I am happy that your recollection was spot-on with the clonidine - it is great when that happens. Regarding the hair loss, I have also attributed it to possible hormone imbalance and/or vitamin deficiency and absorption. When my Neurologist ordered very specific bloodwork and urine samples from the Rochester Mayo Clinic, all of my attributions were put to rest. No problems in those areas. It is good to know you will be having bloodwork soon. It's important to keep up with regular bloodwork. How awful about the gallbladder area pain you experience! That is one area that has not bothered me (knock on wood). I have been diagnosed with costochondritis (2009 by a cardiologist - no heart problems) and do have very painful bouts of sternum area pain attacks that travel around to my upper thoracic area. How often do you get pain in that area and what do you do/take to help you through an "attack"? If IV fentanyl doesn't touch it, the only thing that pops into my head would be to request sedation. So sorry and can't help wonder what that pain is from.

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Replies to "Hi @wolfbauer . Thank you for your detailed reply! I really appreciate all that you share...."

I just wrote a long response to someone else and my hands/arms are going numb, so I apologize for the brief responses, but I wanted to make sure to reply. I'm sorry to hear about your accident and how severe it was. Thank God indeed your husband knew not to move you, and was able to resuscitate you! My neurologist's focus on my SFN has been an autoimmune cause due to my history with other autoimmune issues, but I've only recently read research about physical trauma being the "starter's pistol" that sends SFN off to the races. I grew up playing hockey, football, and skiing, so I have had quite the history of hard impacts (and repetitive smaller ones which doctors are now saying may be even worse for CTE than the concussions they were focusing on). When I mentioned one day the (at least) three concussions I have had to my parents, they told me I've never had a concussion... (1. Jumping off a ski lift from a DECEIVINGLY high height and temporarily losing consciousness, 2. Getting illegally cross-checked from behind after the ref blew his whistle in a hockey game; I was facing my teams bench and didn't see the kid charging behind me so of course I had no luck of bracing for impact... the way I got hit and lack of anticipation made me lose my balance and I ended up slamming my head and having it bounce back off of the top of the boards, waking up flat on my back 3. Head to head contact while playing no pad/full contact football in college... it was right before break and I don't remember my parents driving me home and kept vomiting); I'm not an MD, but I've studied like one and I'm quite confident each of those were concussions. My car accident was extremely violent. I was speeding in bad weather, way faster than I'd like to say, and when my Subaru Legacy's two right-side tires hit a mixture of rain and sand, the car began to lose control while entering an S-curve. I was able to slow the car down to 65 MPH and regain control, but it was too late and the car hit this weird walkway that consisted of two walls, one concrete and the other railroad ties rebar'ed into the ground; 65MPH to 0 instantly, front and side airbags all deployed. I walked away from that... in fact I was in shock and the first thing I did was get out to examine the damage, then I googled the local police department's number as I didn't want to bother 911 since I just seemed shaken up. Five police cars, a fire truck, an ambulance, and a sobriety test later, lol, I was encouraged to be taken to the hospital, but I was already stressed and just wanted to be home. The next morning symptoms set in, and I couldn't move my neck without severe pain and couldn't lift my right arm above my waist. Since I couldn't move my neck, it was impossible for me to get up from laying in bed and adapted a way to roll myself onto the floor and crawl to the bathroom (I eventually began sleeping on the couch). I tried to 'buck it up' but after four days without sleep and intractable pain, I went to the ER where they took a chest X-ray, and I was given a prescription for over the counter strength naproxen which I crumpled up and threw in the examining doctors trash can on the way out. Vitamin B's, D, and E have been deficient and I've noticed that when the D and one of the Bs began to normalize, my hair stopped falling out, and at my last haircut, the woman who cuts my hair commented that it had been growing in thicker. Stress, I'm sure, has also played a major role in my hair loss. So far for the rib pain (I'm not convinced it's typical costochondritis, but rather a symptom of SFN) I was prescribed ibuprofen (I don't like taking NSAIDs anymore since I took ibuprofen at its max dose for a decade) 600mgs four times a day, which I often skip doses, or days, because of my loss of appetite and gastroparesis leaves my stomach empty... a no no for NSAIDs as it's begging for an ulcer. I meant to message you and say, my chills/sweats are back: theory squashed, but I haven't taken the ibuprofen regularly. I'm going to try my best to at least have a super small snack so I can take it all four times each day and see if it helps the rib pain and sweats/chills (it's probable it has no effect, but after hearing you mention the toradol and my anecdotal experience with the ibuprofen, the connection seemed plausible, however, I bet most SFN patients are on or have taken one NSAID or another and doctors would have put it together by now. Who knows). That ended up longer than I thought, but I can't feel my arm, lol. Have a good one for now!