Small Fiber Neuropathy

Posted by wjones159 @wjones159, May 26, 2018

Good morning,

I have been diagnosed with SFN, and was a bit alarmed at my biopsy results. I have read over a lot of the symptoms and discussions others posted, and did not want to be overly redundant, so in the interest of keeping this post marginally analytical, I was hoping you could give me an idea of the severity of the results.

The lab states that low density is in the range of 6.2-6.8 for the thigh. My observed density was 0.07. For the calf the low range was 4.8-5.4 and my observed was 0.67.

Those numbers seem extremely poor and depressing. Is it as bad as the numbers would seem?

Thanks for any thought you can provide
-Scott

@wolfbauer

@teetee7 , I'm sorry to hear you're having a terrible time with it too! I absolutely hate the heat/summer/fevers, so when this started happening it really bothered me. I had just gotten over the flu so I thought I was having a fever until my thermometer kept reading normal, and it continued happening. I got officially diagnosed with SFN last year too, and had no idea about having autonomic neuropathy/dysfunction (I'll abbreviate it AN/D) until my local hospital called me to set up 16 physical therapy appointments, and finally asked them who prescribed it and why, haha. It's only really been since November that I've been experiencing more and more autonomic symptoms. I fell down the stairs at the end of November (from a combo of AN/D and SNF symptoms), and in December, I was turning my bedroom doorknob to leave the room, and then all I remember is waking up on the floor (I'm really lucky I didn't hit my head on anything as there's a lot of hard furniture and stuff packed into my room except for the exact spot where my passed out body landed). I feel bad for you and your back; was your 8 foot fall and broken spine from a syncopal episode, or did it happen before your SFN? I do have to say, my last college pharmacy class was in 2011 so when you said you were prescribed clonidine for it, I celebrated in my head (for the past 2 years I've had pretty bad anomic aphasia [word recall], so actually remembering an off-label, non-FDA approved usage of a medicine made me happy that I'm not losing my memory too haha). I'm just remembering, I actually stopped sweating for several months leading up to my first hot flash/chill/sweating attack (good think air conditioners exist). I also never thought about the hair loss until reading your other post. I've always had thick hair on my head, medium hairy arms, a little on my abs, and quite hairy legs. My head hair (sounds weird to say it that way) thinned out quite noticeably, but for now, I believe it was from stress/malabsorption/vitamin deficiencies as it grew back in thick again, and now that I'm stressed and vitamin deficient, it's thinning again. I forgot that I was also finding short arm and leg hairs all over my sheets (I still have hair on both, but it was definitely falling out). I've been doing research tonight with the online pharmacy reference resources from my college… does this site have private messaging? I can't post links, and I can send you what I've found. I also wanted to ask you about the nasal ketamine spray and give you info about the infusions as an infusion is WAYYYY DIFFERENT than taking it orally. Also, I've only seen the nasal spray supplied as esketamine, the S (left optical isomer) and wondered if we compared experiences, we would notice a difference between the nasal and oral racemic mixture. And to address the nerve blocks, I've only had a couple, and it was to rule out T7 and T9 and other possible causes of the pain I believe is being caused by the schwannoma on T8 in my back. It's shielded by my rib, and surgically un-resectable, but the neurosurgeon offered a plan of radiation, or actually severing the nerve if it's at fault. One last SNF question for you (especially since you've used ketamine and at first I thought that was causing it)… have you experienced intense pain where the gallbladder is located? I've had numerous ultrasounds and a HIDA scan, and my gallbladder is fine, but I have literally passed out from the episodes. It's without a doubt the most severe pain I have ever felt; what I imagine getting shot in the gut feels like (it could be the schwannoma, side effect of ketamine, SNF, or something entirely else… no one can figure out what causes it and nothing has any effect on it. I've been given IV fentanyl and I was still in excruciating pain.

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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.

@arcticmark

IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory or autoimmune conditions it will make a huge difference in your symptoms. I was almost in a wheelchair and now am walking with only a slight limp. There is evidence that it helps a majority off people with SFN. There is a double blind study going on right now to show how IVIG works on SFN. I have PN in short fiber, long fiber, motor and autonomic nerves. IVIG helps a lot with sensory PN. Even if you don't have the classic symptoms of inflammatory or autoimmune PN IVIG can often help. It is expensive so most insurance limit IVIG to about 15 discrete diseases and where "medically necessary." You need a creative doctor to help prove that IVIG is medically necessary for you.

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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.

@wolfbauer

Hi @johnbishop ,
I've worked in pharmacy since I was 16 (31 now) and studied to be a doctor of pharmacy so I nerd out pretty hard when it comes to medicine. I've been unemployed since 2015 due to my health issues which include small fiber neuropathy, myofascial pain syndrome, fibromyalgia, Raynaud's, migraines, severe insomnia, cervical dystonia from the disc problem in my neck, and autonomic nervous system dysfunction (mainly from the small fiber, but my neurologist assumes that the syrinx in my spinal cord, thoracic schwannoma, and the two lumber disc problems are also contributing factors to the wide range of symptoms). I was in a car accident in 2011 where my car's tires lost grip in the rain while going 65mph and ended up hitting a wall head on. It's assume that most of the above issues stemmed from that. I also have a second ultrasound and a mammogram coming up after two previous appointments and an ultrasound suggested the possibility of male breast cancer. I have a history of treatment resistant major depressive disorder and anxiety as well so it can be difficult to tell which issue is causing which symptom. I was in a clinical trial at Mount Sinai for depression which used sub-anesthetic doses of ketamine, and the anesthesiologist who continued the treatment recognized neurological symptoms that suggested MS. The first neurologist I saw, who had formerly treated me for migraines, would not order an MRI and concluded that my physical exam was normal. I wanted a second opinion, and I was lucky enough to find my current neurologist who has been amazing. Not only did he order MRIs of my brain, cervical, thoracic, and lumbar spine which revealed numerous problems, his more attentive physical examination found abnormal reflexes and sensory nerve damage. My current treatment consists of physical therapy twice a week, a 60 minute myofascial massage whenever I can scrape together the money, meditation, trigger point injections, nerve blocks, ibuprofen, oxycodone, diazepam, amphetamine salts (Adderall), lidocaine patches and cream, and botox injections every 12 weeks. Up until two weeks ago I was also on baclofen, tizanidine, and gabapentin together (I've also tried cyclobenzaprine), but they had no effect on my muscle spasms/tightness, and as a result discontinued them. I've tried Lyrica, literally every antidepressant or medication used off label as an antidepressant or adjunct for depression including those used for small fiber, ondansetron for nausea, sumatriptan injections for migraines, topiramate, the aforementioned ketamine infusions I had monthly worked so phenomenally well that I was prescribed oral ketamine to take daily, which also worked amazingly for my pain (it's a dissociative anesthetic). The high oral dose I was on, however, was beginning to trash my kidneys and urinary tract so I had to stop that (it can cause interstitial cystitis and long-term users have had to have their bladders removed due to such extensive damage). I was prescribed IVIG, but my insurance does not cover it. I've been vitamin B, D, and E deficient for a while despite taking supplements of each, and also am dehydrated despite drinking at least half a gallon of water a day. I have difficulty keeping weight on as well, so malabsorption seems like another likely problem. My neurologist's current treatment plan is to run blood work again in March when I go in for botox injections, and if my vitamin levels are normal and I'm no longer dehydrated, I'm going to start plasmapheresis. We have yet to come to a solid conclusion as to the primary cause of the small fiber neuropathy. My neurologist is 95% sure it's autoimmune (I have a history of autoimmune issues such as idiopathic autoimmune hemolytic anemia my senior year of high school, and have a standing prescription for epi-pens as I have, thrice, gone into anaphylaxis but do not show any signs of an allergy [each occurrence had nothing in common]). I've been tested for just about everything including Lyme, Lupus, Sjogrens, MS, Rheumatoid Arthritis, Celiac's, Mayo's myositis and neuritis panels… all the stuff everyone here has surely been tested for. I'm not sure if it is a national chain store, but I have a 6 ft x 2 ft x 2 ft giant bean bag from 'Yogibo' that is very supportive (my neck, shoulders, and back get severe pain whenever I sit or stand for prolonged periods of time… laying supine is the only position that helps keep my pain at a more manageable level). My main frustrations have been the new symptom of what I refer to as hot flashes alternating with chills, severe nausea, insomnia, and severe pain in certain muscle groups that seem to be in a constant state of contraction. I get fasiculations and spasms all over, but this is different; my physical therapist, neurologist, and massage therapist have each noticed that I am unable to relax different muscles such as my biceps and trapezii (they feel like they are relaxed to me, but the practitioners can feel them contracted). I have tried progressive muscle relaxation meditation, and countless muscle relaxants without any relief. I've tried CBD gummies for pain and muscle spasms which didn't work, but am open to trying a topical. I qualify for a medical marijuana card here in NY, but 1, cannot afford the actual product and 2, cannot use it due to my job in pharmacy (as I said, I'm not currently able to work, but my primary goal is to get back to work). I got some capsaicin cream to try, (I've always recommended it to my patients, friends and family members, and those who have used it correctly have all had positive results, including a middle-aged friend with bad arthritis who was able to start pitching softball again). I searched SFN support groups today, as mine seems to be progressing quicker than what I've expected from my personal research. Once I seem to address a symptom with one of my doctors, I feel like two more pop up. I'm really curious to hear any tips, tricks, or advice others here may have. With all the specialists I see, I average 1 doctor appointment a day, and over the past few months have had weeks with 10 or more appointments. I hear about people having periods of remission, but looking back I've realized that I've had some of these symptoms for over five years. Because of my high impact hobbies and the nature of my job standing all day compounding 1-4L IV bags, those symptoms were ignored. Their intensity has been steadily increasing without any periods of relief, and are no longer something I can ignore. The symptoms that have recently popped up relating to autonomic nervous system dysfunction are quite uncomfortable and very unpredictable. This makes it difficult and stressful to manage them and my schedule day to day. I make a conscious effort to be thankful each day, as I can still physically take care of myself without help from a caregiver, and I know that there are countless others out there that whose symptoms are much more severe and who are unable to do the things I sometimes take for granted like walking, driving, and getting myself ready in the morning. As my cluster of conditions progress, and new symptoms pop up, I have found I'm having a harder time coping with the progressive nature of it all. I'm curious to what extent IVIG, plasmapheresis, or corticosteroids have helped people in this group, and how long any relief lasted. Has anyone found a different treatment or medication that has brought them relief? I apologize for the novel I've written, haha, and hope everyone is enjoying the beginning of the weekend!

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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.

@teetee7

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.

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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

@teetee7

Hello @bruces and @diknzn. I started noticing that my fine arm hair, seemed to just disappear on me throughout the last year. I was diagnosed with SFN in 2015 and Autonomic Neuropathy in 2018. The symptoms @bruces has described, pretty much match the ones I have been battling (OH in particular). It has been very challenging and causes me anxiety, due to the many back problems I have. The neurotransmitter that you had implanted, is that the SCS device or something different? Thank you all for sharing. It helps so much to know I am not alone with the many problems that I do my best, to work through each day.

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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.

@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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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!

Liked by teetee7

@teetee7

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.

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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.

Liked by teetee7

@teetee7

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.

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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

Liked by teetee7

Hi @wolfbauer. @elained. @diknzn. I wanted to thank you for your replies. I appreciate all that you share, so very much. My arms and hands are tingling with numbness, so I will write more just as soon as I can. Thinking of you all!

@teetee7

Hi @wolfbauer. @elained. @diknzn. I wanted to thank you for your replies. I appreciate all that you share, so very much. My arms and hands are tingling with numbness, so I will write more just as soon as I can. Thinking of you all!

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@teetee7 Sending positive thoughts your way! Hope you feel better!

Liked by teetee7

Hi, I'm new to this forum but certainly not new to small fiber neuropathy. I would like to first start by thanking all of you so much for all of your sharing because as my disease has been progressing with more and more symptoms, I've not gone to my neurologist, well for several reasons, 1 she's very dismissive of everything I tell her, so I've started to think that all my new symptoms were all in my imagination, when in fact as I read here, all of you share the same ones! And 2 she keeps telling me that there is nothing that she can do for me, and that I'm on the highest dose of Gabapentin that I can be on. When on my last EMG study she announced that my small fiber neuropathy had crossed over to a large fiber neuropathy, I asked her what that meant, she said just take more frequent rest periods through-out your day, and then she walked out of the room. What is that supposed to mean?? I asked my internist and he sent me to Duke University to be yet tortured again, with the understanding that I had developed MG and after two years they decided that that that's not what I had. So it's back to square one, but meanwhile I'm still looking the use of my arms and hands.
I can relate to just about everyone on this forum. I started about 11 years ago with toe pain on and off and a podiatrist diagnosed the problem as fallen arches. She said to purchase shoes with better arch support and enclosed backs since I only wore clogs. So I bought Dansko's and even though they were expensive I got used to wearing them. Eventually I saved up and bought another pair so that I could switch out shoes. What I liked best was the large toe box because it didn't rub on my toes. But as time progressed other problems cropped up. I always had low blood pressure, but now I was passing out on a fairly regular basis and getting carted off to the ER via ambulance to get filled up with IV fluids for a couple or more hours before they would release me. Each time I was admitted they would draw blood and each time my TSH was very high which meant a call to my MD and another switch in thyroid med levels. I have Hashimoto's Thyroiditis and the endocrinologist was basically keeping me hypothyroid. So I researched my disease and found another drug other than Synthroid and asked my internist to manage it for me. He agreed and I started to grow back some of the thinned out hair on the top of my head. All total I've had 38 admissions to the ER in the last 11 years for syncope. I've been lucky in the last five years or so because I've started to loose my eyesight prior to passing out which gives me a huge advantage. It gives me time to sit or lay down and prevent falling. So I haven't broken anything recently. The only problem is with all the times that I've passed out, I've also lost the capillary bed to my optic nerve and so now it looks like I've had long standing glaucoma that hasn't been treated. So my eye MD and internist got together and now I'm on a drug to keep my B/P elevated in an attempt to reduce or stop my syncopal episodes. So far it's helping fairly well, I feel one starting and I have the time to lay down so that I don't loose conscience.
I also have problems with my G.I. system where it almost comes to a complete halt. I was seeing a gastroenterologist first before my diagnosis of SFN because I was complaining that food was getting stuck in my esophagus. And sure enough on the upper G.I. series a tiny little pill that they gave me to swallow got stuck. So the radiologist asked me if I drank coffee. I said yes, but why?? He answered "because neither you or I can leave this room until that pill goes down and it doesn't look like that is going to be any time soon as you don't seem to have any peristaltic motion going on here. So we can use the hot coffee to melt the pill." Since that time fluids have tried to slip down my throat uninvited, and it's progressed to small solid materials as I'm eating. Needless to say, I don't eat out in public very often anymore. Choking in that extreme in terribly embarrassing.
Also, spring and summer used to be my all time favorite times of the year. Now I hate them because any rise in temperature relates to a rise in pain!! I'm on fire 24/7 as it is, but when the surrounding temperature increases, it just intensifies my pain!! I can't stand being dressed, I can't stand anything touching my feet, so I had to buy a foot cradle for my bed to get the sheets and in the winter months the comforter as well off my feet. The only problem is, it's hollow in the middle and my cat thinks it's a cat hammock and he jumps in it when I'm sleeping sometimes and then I'm awakened by the bedclothes touching my feet and legs.
I have a daughter with high functioning Asperger's who was always so picky about her clothes, and who always cut the labels out of her clothes because she couldn't stand them touching her. It used to drive me crazy because I never knew how to wash the clothes because the washing directions were always gone. Well now I have to say I have total empathy for her, because I can't stand half of the clothes in my closet touching me any more. I live in the mountains and I used to hike, I can't even feel the ground where my feet touch the ground let alone hike anymore. I used to drive long distances 16 hours straight threw, now I can barely hold on to the steering wheel for short trips to the supermarket. And that reminds me, I feel like a lizard. in the summer when I go out to airconditioned stores I get so cold I have to go outside to warm up. In the winter like now I'm freezing 24/7 and even the few warm days that we had when people were outside in shorts and tea shirts I was still dressed in fleece and I was shivering. I honestly thought I was loosing my mind about the hot flashes and chills. And I'm on medication to monitor my tachycardia. Plus I just started with another very annoying symptom that I didn't read on this forum and I wonder if anyone has had problems with it. I only know of another friend who has had issues with it for at least 5 years and she has peripheral neuropathy. It's skin inching. Sometimes it gets so intense I think that I'm going to rip my flesh off. my neuro gave another drug to calm it down, but that's about all it does.
Oh and another thing is loss of bowel and bladder function which seem to be transient not regular. So because I never know when I'm going to have an issue I can't leave the house without protection anymore.
Oh gee, I just remembered another symptom the brain fog, boy oh boy am I glad I found this forum. I thought for sure I was a goner and honestly between the neuropathy pain, and the pain from my mixed collagen vascular disease which is a lot of arthritis pain, some days I wonder what there is to live for. I'm allergic to most narcotic pain killers, because of asthma I don't handle NSIDS well, and quite frankly I like my liver too much to take too much Tylenol, and honestly for the amount of pain I'm in Tylenol is a joke!
I have an appointment next month with a new Neuro way out of this area because the neuros around here, and please forgive me, but quite frankly I think they all got their MD'S out of a Cracker Jack box. So I'm so hopeful that things will improve. I've taken some notes on the treatments that you folks have tried and I am going to bring them up at maybe not my first meeting, but surely my second.
What a blessing it is to live in a free county and to have access to others who share a common problem. God bless you all. It's taken me a whole day to write this due to finger mobility issues, but next time probably will be less. bye for now.

@stobie2019

Hi, I'm new to this forum but certainly not new to small fiber neuropathy. I would like to first start by thanking all of you so much for all of your sharing because as my disease has been progressing with more and more symptoms, I've not gone to my neurologist, well for several reasons, 1 she's very dismissive of everything I tell her, so I've started to think that all my new symptoms were all in my imagination, when in fact as I read here, all of you share the same ones! And 2 she keeps telling me that there is nothing that she can do for me, and that I'm on the highest dose of Gabapentin that I can be on. When on my last EMG study she announced that my small fiber neuropathy had crossed over to a large fiber neuropathy, I asked her what that meant, she said just take more frequent rest periods through-out your day, and then she walked out of the room. What is that supposed to mean?? I asked my internist and he sent me to Duke University to be yet tortured again, with the understanding that I had developed MG and after two years they decided that that that's not what I had. So it's back to square one, but meanwhile I'm still looking the use of my arms and hands.
I can relate to just about everyone on this forum. I started about 11 years ago with toe pain on and off and a podiatrist diagnosed the problem as fallen arches. She said to purchase shoes with better arch support and enclosed backs since I only wore clogs. So I bought Dansko's and even though they were expensive I got used to wearing them. Eventually I saved up and bought another pair so that I could switch out shoes. What I liked best was the large toe box because it didn't rub on my toes. But as time progressed other problems cropped up. I always had low blood pressure, but now I was passing out on a fairly regular basis and getting carted off to the ER via ambulance to get filled up with IV fluids for a couple or more hours before they would release me. Each time I was admitted they would draw blood and each time my TSH was very high which meant a call to my MD and another switch in thyroid med levels. I have Hashimoto's Thyroiditis and the endocrinologist was basically keeping me hypothyroid. So I researched my disease and found another drug other than Synthroid and asked my internist to manage it for me. He agreed and I started to grow back some of the thinned out hair on the top of my head. All total I've had 38 admissions to the ER in the last 11 years for syncope. I've been lucky in the last five years or so because I've started to loose my eyesight prior to passing out which gives me a huge advantage. It gives me time to sit or lay down and prevent falling. So I haven't broken anything recently. The only problem is with all the times that I've passed out, I've also lost the capillary bed to my optic nerve and so now it looks like I've had long standing glaucoma that hasn't been treated. So my eye MD and internist got together and now I'm on a drug to keep my B/P elevated in an attempt to reduce or stop my syncopal episodes. So far it's helping fairly well, I feel one starting and I have the time to lay down so that I don't loose conscience.
I also have problems with my G.I. system where it almost comes to a complete halt. I was seeing a gastroenterologist first before my diagnosis of SFN because I was complaining that food was getting stuck in my esophagus. And sure enough on the upper G.I. series a tiny little pill that they gave me to swallow got stuck. So the radiologist asked me if I drank coffee. I said yes, but why?? He answered "because neither you or I can leave this room until that pill goes down and it doesn't look like that is going to be any time soon as you don't seem to have any peristaltic motion going on here. So we can use the hot coffee to melt the pill." Since that time fluids have tried to slip down my throat uninvited, and it's progressed to small solid materials as I'm eating. Needless to say, I don't eat out in public very often anymore. Choking in that extreme in terribly embarrassing.
Also, spring and summer used to be my all time favorite times of the year. Now I hate them because any rise in temperature relates to a rise in pain!! I'm on fire 24/7 as it is, but when the surrounding temperature increases, it just intensifies my pain!! I can't stand being dressed, I can't stand anything touching my feet, so I had to buy a foot cradle for my bed to get the sheets and in the winter months the comforter as well off my feet. The only problem is, it's hollow in the middle and my cat thinks it's a cat hammock and he jumps in it when I'm sleeping sometimes and then I'm awakened by the bedclothes touching my feet and legs.
I have a daughter with high functioning Asperger's who was always so picky about her clothes, and who always cut the labels out of her clothes because she couldn't stand them touching her. It used to drive me crazy because I never knew how to wash the clothes because the washing directions were always gone. Well now I have to say I have total empathy for her, because I can't stand half of the clothes in my closet touching me any more. I live in the mountains and I used to hike, I can't even feel the ground where my feet touch the ground let alone hike anymore. I used to drive long distances 16 hours straight threw, now I can barely hold on to the steering wheel for short trips to the supermarket. And that reminds me, I feel like a lizard. in the summer when I go out to airconditioned stores I get so cold I have to go outside to warm up. In the winter like now I'm freezing 24/7 and even the few warm days that we had when people were outside in shorts and tea shirts I was still dressed in fleece and I was shivering. I honestly thought I was loosing my mind about the hot flashes and chills. And I'm on medication to monitor my tachycardia. Plus I just started with another very annoying symptom that I didn't read on this forum and I wonder if anyone has had problems with it. I only know of another friend who has had issues with it for at least 5 years and she has peripheral neuropathy. It's skin inching. Sometimes it gets so intense I think that I'm going to rip my flesh off. my neuro gave another drug to calm it down, but that's about all it does.
Oh and another thing is loss of bowel and bladder function which seem to be transient not regular. So because I never know when I'm going to have an issue I can't leave the house without protection anymore.
Oh gee, I just remembered another symptom the brain fog, boy oh boy am I glad I found this forum. I thought for sure I was a goner and honestly between the neuropathy pain, and the pain from my mixed collagen vascular disease which is a lot of arthritis pain, some days I wonder what there is to live for. I'm allergic to most narcotic pain killers, because of asthma I don't handle NSIDS well, and quite frankly I like my liver too much to take too much Tylenol, and honestly for the amount of pain I'm in Tylenol is a joke!
I have an appointment next month with a new Neuro way out of this area because the neuros around here, and please forgive me, but quite frankly I think they all got their MD'S out of a Cracker Jack box. So I'm so hopeful that things will improve. I've taken some notes on the treatments that you folks have tried and I am going to bring them up at maybe not my first meeting, but surely my second.
What a blessing it is to live in a free county and to have access to others who share a common problem. God bless you all. It's taken me a whole day to write this due to finger mobility issues, but next time probably will be less. bye for now.

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Hello @stobie2019, Welcome to Mayo Clinic Connect. Thank you for sharing your symptoms and story so other members with similar symptoms can share what has worked for them. I have small fiber peripheral neuropathy in my feet and above the ankles but I don't have any pain, just numbness, tingling and always have cold feet. You mentioned you have an upcoming appointment with a new neurologist next month. @roch shared some great tips here on how to get off to a best start with a new specialist in another discussion that may help you prepare for your upcoming appointment:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765

Are you able to share what your biggest health challenge is?

@arcticmark

IVIG is a monthly infusion of antibodies from hundreds of transfusions. If you have certain inflammatory or autoimmune conditions it will make a huge difference in your symptoms. I was almost in a wheelchair and now am walking with only a slight limp. There is evidence that it helps a majority off people with SFN. There is a double blind study going on right now to show how IVIG works on SFN. I have PN in short fiber, long fiber, motor and autonomic nerves. IVIG helps a lot with sensory PN. Even if you don't have the classic symptoms of inflammatory or autoimmune PN IVIG can often help. It is expensive so most insurance limit IVIG to about 15 discrete diseases and where "medically necessary." You need a creative doctor to help prove that IVIG is medically necessary for you.

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can you send me a link to that study. i'd love to try and get into one.

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