Small Fiber Neuropathy

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.

Hi @wolfbauer. Hahaha! You bet! Your name can go first on the research paper! It DOES make sense! In fact, I am going to adjust the timing of my NSAIDS today, just to see if there is a difference on the timing and severity of when I go into the horror sauna state. Do you watch The Big Bang Theory? Your remark about your name going first, reminds me of what Sheldon says about winning the Nobel Peace Prize.

Hi, I'm new and don't know where to introduce myself.

The latest 'thing' I've been hearing about is the use of stem cells to treat neuropathy. I'm doing some research, and would love to hear more about this.

I have profound Peripheral Neuropathy in my legs for over 10 years (disabling,) and severe small fiber neuropathy for 6 years, particularly in my face, lips tongue, fingers (that's where the pain tingling burning stabbing is the worst).

All my neuropathy is the result of my Immune System attacking my nerves. My Immunologist believes this is the cause. Every other possible cause has been eliminated. All of my medical providers are at Duke University Medical Center.

I must wear leg braces and walk with a walker.

AND I have a Primary Antibody Deficiency Disorder and have had IVIG every four weeks for 5.5 years. The IVIG does not affect my neuropathy at all, sad to say.

I take 42000 MG of Gabapentin to control my Small Fiber Neuropathy discomfort.

I have been taking Low Dose Naltrexone for pain for over a year, and it does help. I can't take NSAIDs or any of the codeine related medications.

I also have a bunch of other neuropathies, with the latest affecting my esophagus and small intestines. My saliva and tears system is damaged, my lungs, my bladder, my hearing, PN, SFN, and now esophageal dysmotility, achalasia, and SIBO (small intestine bacterial overgrowth).

And I have very loud tinnitus, with three part harmony in one ear (buzz saw, bee hive, wasps nest).

I look forward to reading the posts here and hearing from others.

Regards, ElaineD

Hi @elained . I just read through your post and had to extend my sincere sorrow for all of the neuropathies you are battling with. I cannot relate to all that you are going thru - just a few of them (SFN, PN and your tinnitus). If we put our ears together, we could have a new soundtrack for a Sy-fi movie. The tinnitus sounds my ears make are those of locusts. I take Gabapentin for my nerve pain, too. I take 3,200 MG's (800mg tablets, 4 times a day) and I am so thankful for it. I also take Cymbalta at night and I noticed that it also helped my nerve pain when I first started to take it. I have read a little about Stem Cell treatment for Neuropathy and I am also interested in learning more about it. I am sure others will chime in and share with you about their experiences with what you are going thru. I have found Mayo Connect to be a great source for learning and connecting with others. Best wishes to you.

Hi @wolfbauer. I have been rereading your "welcome" post and something else popped out to me (just like the nerve blocks did). You indicate that you drink a half gallon of water each day. I drink 125 ounces of water every day, which is double the amount that you consume. Whenever I begin to feel faint and return to the couch or bed, I've been advised to drink a decent amount of water - approximately 6 ounces. (Because I am having brain fog at the moment, I can't remember why this was advised). I do know that it helps to elevate my blood pressure, so maybe that is the reason? I can't help but wonder if you drank more water each day, if you would notice a beneficial difference with your AN/D, etc. It really does help me feel better with my presyncope episodes.

Hi teetee7, thank you for your kind post.

I find that whatever kind or amount of 'condition' we have is very difficult for us, and a bit scary. Particularly if the cause cannot be found, or if found cannot be treated.

People expect conditions to be diagnosed and treated and cured. People aren't equipped to handle chronic conditions. This is why forums like this one are vital to our health and sanity.

I am part of a group that supports those with Primary Antibody Deficiencies, and another group that supports people with Immune Disorders that attack their organs and systems, like Sjogren's, Lupus, Hashimoto's, Rheumatoid Arthritis, and any of the over 100 autoimmune conditions.

And YES, locusts is the sound in my right ear, both ears were plagued with 'locusts' at the start. Fortunately I'm able to 'tune it out' most of the time.

I have a 'sound machine' next to my side of the bed, which plays a soft constant sound which helps for some reason.

Cymbalta was my magic drug. My son is a psychiatrist and recommended Cymbalta which I started it in 2010, and with Aleve and Cymbalta I had almost zero pain.

Unfortunately in 2006 I begin to have serious problems: Myoclonus (which is shaking in some part of the body) and Syncope, which is sudden collapse to the floor/ground. No dizziness, no warning, I always fell on my right side. I could be holding on to my walker, and would just let go and collapse. This went on for a year and a half. I had to stop driving, because I didn't know when I might fall, if I were on my own.

I had to buy a medical alert bracelet to wear if my husband was out of the house, in case I fell while he was away.

It turned out that Cymbalta was the cause. And SSRIs in general, since I tried Prozac as an alternative and the problem returned. Wellbutrin doesn't seem to cause the problems, but now I know that anything can happen any time.

Fortunately I was never hurt badly when I fell, which was about twice a month. The Myoclonus episodes of strong shaking on my left side, usually my arm, but some times more extensive, did not hurt, and had no warning. These happened sometimes three or four times a day.

I developed gastric irritation from Aleve and had to give up all NSAIDS. Fortunately I have a Pain Specialist at Duke, and he has helped me find alternatives to Cymbalta and Aleve.

I also take a maintenance dose of a corticosteroid, Medrol (methylprednisolone) which allows me to tolerate IVIG every four weeks. I have a delayed reaction of Inflammation. Inflammation causes pain, fatigue and depression, and for me, also itching, until I started the Gabapentin. I take only 2 mg of Medrol every other day, and have for over 5 years.

If I have an inflammatory flare, related to the attack on my body by my Immune System, I take a larger dose of Medrol for a few days, to interrupt the flare of inflammation. Rather like a Prednisone Taper, if you've ever had one. But I just take it on my own, with extra Medrol I have on hand.

Do you know why you have PN and SFN? I had EVERY SINGLE test, 3 MRIs and 2 CT scans in one day, blood tests, genetic tests, spinal tap. And I've had them all several times. My neurologist went to extraordinary lengths to find some cause that might be addressed.

In the time I was having these tests, I was found to have a Primary Antibody Deficiency (IgG and IgM) and spent a great deal of time with my Duke Immunologist, who also does research and teaches in the medical school. She believes that my Immune System, which can't protect me adequately ALSO attacks my organs/systems, probably with Cytokines (not autoantibodies, which is the usual case).

Once I started IVIG, I stopped being sick all the time. In the five and a half years I've had IVIG, I've really only had at most two minor infections, which is amazing. But I never had the terrible illnesses some have, and I never had pneumonia and wasn't ever hospitalized with my infections.

My husband, by weird coincidence, is a research immunologist, who did Organ Transplant research and taught at Boston University Medical School. So he understands my conditions, and also knows that there is no cure and no treatment currently available. Just management of symptoms.

I can't wait to read the post here at the Mayo. I'm sure I will learn a lot. Thanks for your kind post, teetee.

Regards, ElaineD

Sorry for the delay in getting back to you @teetee7. The neurotransmitter is through St. Jude. It is the model 3660 Proclaim 5 Elite IPG. It has been over one month now and I can honestly say it has improved my pain levels significantly. The procedure was quite simple. As an outpatient, I was in and out in around 90 minutes.

Like others, I have been suffering the complete gamut of AN symptoms since 2013. From the beginning, I have had intermittent symptoms. One day my OH keeps me from getting out of bed and the next day my BP is steady at 100/70. Without question, the bad days have outnumbered the good. Until about 30 days ago.

I awoke that morning feeling more clear headed then I had been in years. I told my wife that for the first time in recent history, my world was not spinning. In fact, the extreme constipation, urinary issues, OH, severe dry mouth and eyes, etc... all felt better. I thought that I was about to have the best day in what seemed like an eternity.

To my surprise, that good day has turned into 30 days. I am experiencing almost total remission from my AN symptoms. The SFN is still in full force but for me it has been the AN symptoms that have made life not worth living. Add this remission to the improvement from SFN related pain due to the neurotransmitter and I feel human again. I do not know how long this will last so I am enjoying every single day as much as I can. I only hope that other sufferers of AN will someday experience remission from its life altering symptoms.

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!

I don't remember it, but my parents watch it all the time so I'm sure I have... I'll have to keep an eye out. I went 3 days without sleep this week and finally crashed yesterday (Sunday morning) and just spent all day in bed (the one good thing about being dehydrated and taking salt tablets to retain water is that I don't have to get up to pee as frequently and can just be lazy in bed). I didn't take the ibuprofen, though, and what ended up getting me moving around was the sweats/chills. I've taken two 600mg doses of ibuprofen since. It took some time, but so far (fingers crossed) it's seem to normalize a bit (could also be placebo effect, although, as you know, the sweats/chills are miserable and I highly doubt I'm just 'tolerating' them better [or maybe my mind just wants so badly to have found a treatment it's tricking me lol). I think I forgot to mention in my other reply about costochondritis, I haven't found an effective treatment yet. I've tried lidocaine cream and patches over one area, but it didn't seem to have any effect. I'll keep researching it and see what I can find.

I will try that out for sure... thank you for the suggestion! I've only had one syncopal episode, with no prodromal symptoms and my blood pressure has always been ideal, however even with drinking a lot of water, I'm clinically dehydrated (that with vitamin deficiencies, you'd think my kidneys weren't functioning properly, but MRIs, a bunch of urinary analyses, and blood work all indicate they're normal). Still have to figure out the cause of those. I'm hesitant to drink too much extra water right now as I'm taking salt tablets in order to retain more water and don't want to go overboard and have problems from the other side of the spectrum, but once I'm off of them, I'll try more daily. I have already been grabbing a glass whenever I get tachycardic