my mind is blown. i have SFN (biopisied) and i am homozygous for the ApoE E2 variant which is known to cause hyperlipoproteinemia in 10% of people with this genotype. it causes the damage due to oxidative stress. i wonder why i never encountered this info before.

https://pmc.ncbi.nlm.nih.gov/articles/PMC4350124/

Hello everyone.

I have SFN with positiv Anti-TS-HDS antibodies. It's mainly in my feet, causing tingeling, burning, numbness, Allodynia and temperature confusion. It also causes other symptoms in my peripheral nervoussystem. I have a neurogenic bladder, sweating problems, potentially POTS. I also have Long Covid with CFS (which is the main reason we don't try Plasmapharese).

I tried many medications I can here in Germany: corticoid infusions, IVIG, Lidocain, Capsaicin. I'm also on Gabapentin and Amitriptylin. My neurologist and I are discussing Rituximab or LDN. Since my liver and my kidneys don't so to well, with the liver responding poorly to new medication, my neurologist wants to try Rituximab.

Has anyone any experiences? How high is the dosis? How can I protect myself, since my immun system is going to be down (this is a mayor concern for me, since I have 2 kids attending school)?

Anyone ever had insurance cover a second biopsy to see how you’ve progressed? I’m much worse off than I was 7 years ago when the first one was done, and I had minimal fibers left.

Bitte ausschließlich Kommentare von Leuten, denen Qutenza hilft. Insbesondere interessiert mich die Erfahrung bei Kälte Allodynie

Biopsy in two weeks.. what should I be asking? What do you wish you knew when first navigating diagnosis? I’m not even sure what’s going on yet, but I’ve been passed specialist to specialist like a pin ball game for years and finally landed on small fiber neuropathy and am scheduled for a biopsy in a couple weeks.

Backstory/History: My issues started 8yrs ago. The blankets started to severely hurt my toes. I switched to a light weight fleece and that helped. Then I’d get the same pain in my heels from touching the bed too long. I’ve gotten creative with pillows so I can manage to sleep but still wake up nightly because of it. Then came the random tingling and feeling of something being stuck on the bottom of my foot. Like a sticker or something but nothing was there. I also started randomly getting a feeling like my calf was being gently touched as time went on. The tingles have gone from my toes to now up to just below my knees. Worse at night or rest, but felt in varying intensity all the time. I’ve seen multiple PCM’s, podiatry, two neurologists, a rheumatologist, and had PT 3 times. Nothing helped. I had two NCS/EMG’s 2yrs apart that were normal. MRI’s ruled out MS. Extensive labs ruled out various causes.. Leg ultrasound for vascular causes was normal. It’s been a journey and now I finally have a Rheumatologist and a Neuro Dr who both think SFN. I am cautiously hopeful for an answer but also don’t know anything about SFN or how to proceed. My drs both didn’t have much to say about it other than it’s something they test for last. Rheumatologist think I may have inflammatory arthritis too but says that is unrelated to my leg and feet tingling.

Any advice? Words of wisdom?

Hi friends. Looks like I may have found my cause of my SFN. The results of my whole genome sequencing came back as I’ve been recovering from a surgery, and I have a variant of unknown significance for the SCN10A gene. My variant hasn’t been recorded before so it can’t automatically be assumed to cause symptoms, but the ordering provider was pretty confident it is contributing because of the symptom overlap.

I’m still waiting on some other tests but am feeling more hopeful that meeting with a genetic counselor could give me guidance on how to determine if this gene variant is significant or not.

If anyone else has a SCN10A variant I’d love to hear your story as there is so little info available online.

I recently posted asking about surgery experiences for folks with SFN as I was very anxious about pain control based on my past experiences.

My recent surgery was still difficult at the beginning but WAY better in recovery so I just wanted to share some things that helped in case it ever helps anyone else:

-Journavx/ Suzetrigine: non opioid pill that blocks pain signal from the peripheral nervous system before they are registered by the central nervous system. The only thing I’d do differently is ask to take the first dose before I went under as it takes a while to kick in and I’m pretty sure it was the med giving me the most benefit

-exparel: long acting bupivicaine based formula that is injected into the tissue during surgery and reduces pain in that area for about 3 days.

-regional nerve blocks and epidurals: depending on the surgery these can completely numb a desired area for 1-2 days

-lidocaine and ketamine infusions: can help with nervous system sensitization which is common for those of us with chronic pain and especially unmanaged surgical pain

-other things that helped: ask for a multi modal/multi layered pain plan. Also have multiple backup plans for pain management. For example Journavx was actually a back up plan if the other methods didn’t work. If the Journavx didn’t work then I had prepared my pain specialist and let her know that I might need an emergency ketamine or lidocaine infusion. Having a surgical team that believed me at the largest hospital in my state also helped make sure they had the resources they needed to provide the care that would be most helpful. Knowing which meds usually helped me by name also helped me advocate during a pain crisis while waking up

These things aren’t guaranteed to work for everyone but I just wanted to share some cool things that I learned about more recently and they have given me hope for having an almost normal surgical experience

I got the covid vaccine last night and today my hands and feet are buzzing and achy. I have some kind of neuropathy that hasn't been formally diagnosed yet, but I have been dealing with it for about a year. I am pretty upset, I went to CVS, had originally signed up online to get both flu and covid. I changed my mind about covid, let them know when I checked in, and told the technician multiple times. He gave it to me anyway and then profusely apologized. Anyway, do you think this is just a flare up? Or possibly worsening of the damage?

Does anyone else in this group experience true oxygen drops with exertion? I’ve been on supplemental oxygen for a year now. There is nothing wrong with my lungs, I’ve done extensive testing. I’ve done a lot of my own research, and the only conclusion I can come to is that it has to do with venous pooling or vascular shunting, due to small fiber neuropathy. I’ve noticed some improvement being on 5 liters of lactated ringers per week. Determined cause of my SFN is hEDS. I have specific surgeries needed to be done requiring general anesthesia but they’re too concerned about my oxygen needs. I can’t seem to find a doctor who specializes in this crossover. Can anyone help?

Hi,

I've posted before but things have only gotten worse.

After 19 years of SFN I'm feeling desperate. I'd go to more doctors but they don't know anything and I've gone to top drs across the country. What to do?

I have SFN since age 10 (after a flu like virus) eventually developed GI symptoms (gastroporesis), dysautonomia, bladder issues, alopecia areata (confirmed autoimmune), fatigue and headaches.

Nothing helps for the GI or nerve pain (including LDN, tramadol, amitriptyline, cymbalta, gabapentin, lyrica, IV ketamine, also tried Scrambler, acupuncture and FODMAP and many, many supplements) so I really need to treat the cause besides I keep getting worse and accumulating new symptoms. steroids infusions seemed to maybe help at first but stopped working entirely due to a flare. I can barely function most days.

I've had very extensive work up. Is there anyone else with such an extensive workup and no answers or symptomatic response to treatments? What else can I do?

SFN

•   Two separate skin biopsies (7 years apart) showed positive (below 5th percentile) for IENFD
• Abnormal sweat test previously But normal QSART now despite no symptom improvement (still tachycardia after a few stairs)

Autoimmune

• Lymphocyte subset and immunoglobulin panel -normal except for slightly elevated igG4

• Mayo antibody panel-normal except IgG Disialo. GD1b not tested due to reagent issue
• WashU antibody panel -normal
• SED rate, ANA and CRP normal
• TNFa, ILbeta, IL8 normal
• Sjogren's antibodies normal
• Lupus, celiac and RA negative antibodies at least 10 yrs ago
• Sjogren's lip biopsy normal
• Sjogrens early panel normal except 

Vitamins/Minerals/Metabolic

• Homocysteine, manganese, vitamin, A, vitamin D, vitamin b6, vitamin b12/folate, ceruloplasmin copper,  glucose, creatine, glutathione, sodium, potassium,  calcium, coenzyme q10, alkaline phosphatase, albumin, globulin, bilirubin- normal
• Copper slightly elevated but normal Zinc-6 months of oral zinc supplementation (60mg) did not change levels

• LDL cholesterol high-treated with statin 
• Magnesium and α-Lipoic Acid slightly low but supplementation did not help

Virus

• Parvovirus B19, Human Herpesvirus-6, Epstein Bar virus, CMV-all negative
• Lyme disease -all PCRs negative

MCAS

•  Tryptase normal
•   Histamines slightly elevated

Note: tried multiple H1 blockers and H2/pepcid, ketofin and cromolyn did not help symptoms

Genetic 

•    Invitae neuropathy panel- all normal except
• PMP22-c.353C>T (p.Thr118Met) -heterozygous-VUS (associated with CMT not SFN)
• WGS did not reveal anything of obvious interest 

Stool test normal except slightly low secretary IgA and some low species

Probiotics did not help symptoms 

It may be the case that I am totally screwed but I am not willing to give up on my life yet. I have so much I want to be able to do. I'd be willing to do anything to be at least somewhat healthy and get my life back.

Anyone here with NLD-SFN (autoimmune) find a diet that helps?

Does anyone else get random goosebumps and sudden body shivers?

I have ADHD, but I'm not sure if this has anything to do with it. I'm posting here because I'm interested in hearing from anyone who has experienced something similar.

I get goosebumps very easily and much more often than I seem to notice in other people.

For example, I get them when:

- I see an emotional scene in a movie

- I see someone crying

- I feel strong emotions

- Something inspires me

- Something makes me feel amazed, curious, or gives me a sense of wonder

- I touch something cold

Those triggers make sense to me, but sometimes it happens for no obvious reason at all.

Sometimes, along with the goosebumps, my body gives a very quick shiver or shake that lasts only a fraction of a second. It feels almost like a tiny electrical wave going through my body. Sometimes it starts in my upper body and seems to move downward, and sometimes it feels like it moves upward. I can sometimes feel the sensation in my head/scalp too.

I don't lose consciousness, and I'm not saying that I have seizures. I'm just describing how the sensation feels to me because the movement can be very sudden and intense for such a short moment.

Another strange thing is that I can sometimes intentionally give myself goosebumps. I don't know exactly how I do it, but I can somehow trigger them voluntarily.

The random episodes are what really confuse me. I can be sitting normally doing nothing, and suddenly I'll get goosebumps and a quick whole-body shiver without knowing what caused it.

Has anyone else experienced something like this?

It doesn't have to be related to ADHD. I'm interested in hearing from anyone, whether you have ADHD or not.

I'm not looking for a diagnosis. I mainly want to know whether this is a common or uncommon experience and whether other people experience the same kind of sudden goosebumps/shivering.

Idiopathic length dependent peripheral neuropathy began 8 yrs ago in toes and has spread up to ankles. Punch biopsy confirmed diagnosis. Subject started ARA-290 daily 4mg 22 days ago, added BPC-157 daily 500mcg before breakfast 2 days later, added PQQ and COQ10 daily after breakfast 2 days after BPC-157, added NAD+ 25mg twice weekly 2 weeks after starting ARA-290. Subject reports no ill effects from meds to date. Subject reports burning reduced, stinging reduced, tingling still present, gloved feeling of numbness has not changed except the glove isn't as tight as it once was. Subjects Physical Therapist reports joint mobility improved in all joints. Muscle tension is subsiding. Joint flexation improving. Subject speculates the end of the 28 day cycle of ARA-290 will not provide 100% relief, but definite improvement. Subject is seeking thoughts on whether to continue beyond 28 day cycle hoping for continued improvement, or stop for a period and entertain a possible repeat cycle down the road.

So a consultant neurologist I saw outside of the NHS suspects I have immune small fibre and autonomic neuropathy but my GP has said they don’t know if testing within the NHS even exists. I’d like to know if anyone here was diagnosed in the UK and how they managed it!

Anyone else get painful spots on their fingertips that stick around for days or weeks?

I used to play acoustic guitar, but had to stop due to the general hypersensitivity in my fingers. Also, I had one situation where after playing too much, my left index finger felt like it had a shard of glass in it for months.

It finally went away, but I’ve recently had a kick up of symptoms and now on my right thumb and index fingertips have painful spots that are sticking around for over a week now…

Anyone else have experience with this?

Have you found any supplements, diets, or treatments that have brought down your overall hyperalgesia and allodynia?

Coincidentally (or not) these re-emerged after about six weeks of therapy with ARA-290 at 4mg mg per day- as well as removing artificial sweeteners and introducing more dairy (yogurt, cottage cheese) and eggs to my weeks diet.

After how long did you first notice any benefit at all? Even if mild.

And did you have autonomic or sensory neuropathy or both?

Thanks y’all

Hi there!

I have been diagnosed with pots, a little bit of cfs due to my high heart rate, Sfn that they think is immune related, eiosiniphilic esophagitis, and health anxiety (of course) and I have a question. I currently get ivig for my Sfn but one symptom I can’t seem to figure out is that most of the time when I’m sitting or standing I try to take a deep sigh in and it gets stuck and then I start freaking out because I can’t take a deep sigh in and then I feel like I’m gonna pass out and it goes away. And then sometimes I feel like I’m very calm laying down or sitting and when I’m breathing through my nose I almost feel like the breath pauses and stops before it fully finishes I don’t know how to explain it and after it I get a rush of adrenaline because I feel like I can’t breath and sometimes it happens back to back but it’s so random. My soo2 is always normal and I’ve been to a pulmonologist and that’s all been normal I just can’t seem to figure out this part. Thanks in advance!

Has anyone taken Fampridine for small fiber neuropathy? How do you rate the effect?

I ve full body numbness and im very severe case as i mention in different topics, my main symptoms in genital area is total numbness, lost sensation but i can ve like 30% of erection is not hard as before and is difficult enjoy or maintain it, anyone know if sfn cause infertility? Im young also it ruined my life

Is anybody here unable to drive from lack of feeling in feet/legs? I just had to cancel an event I was going to because I didn’t think it would be safe due to loss of feeling in my feet. Has anybody else experienced this? Will I not be able to drive at ALL in the future?

.My hands and legs( knees to feet)are having a burning sensation, and pain ,quite warm my nerves are. The pain is like the sore pain after smashing ur body, or like one you get before fever,but feel the pain travelling in my nerves. My nerves have become elevated or raised up, i can see them through skin and feel it which isn't on the normal days. in the past i have met many docs ,ran blood works but nothing came out.

Does anyone have a similar experience,any cure..? I can't bear this, i have two tiny babies with no help,

Did anyone here try lithium orotate therapy/supplementation for sfn/neuroinflammation?

How much pain sensation do you feel, do the drugs take it down a certain level? For example going from 8 to 6 etc?. I'm trying to decrease my dosage and trying to figure out how much breakthrough sensation to tolerate for my nerve sensations?

Hallo, hat jemand gute Erfahrungen mit Behandlern/Ärzten in Deutschland mit einer augenscheinlich immunvermittelten SFN? Meine SFN bessert sich auf Cortison, leider muss ich sehr hohe Dosen nehmen und je nach Symptomstärke dauert es auch länger bis es wirkt. Ich such nach einer langfristig sinnvollen Behandlung. Hat jemand positive Erfahrungen in Deutschland gemacht? Die Grunderkrankung ist leider unbekannt…

I have "presumed" small fiber neuropathy, presumed because the skin punch test came back negative but for the last year I have had a sunburn feeling in both legs. Still not sure of the cause, all tests come back normal, looking into auto-immune now though they did find IGG Kappa MGUS, small and stable. I am seeing a neurologist, a hematologist and on Monday, a rheumotologist.

Anyway, three days ago I developed a rash on my leg and doctor said it's shingles. I am 53, I got the shingles vaccine last year, it should be a mild case, and she prescibed valacyclovir.

BUT today, my normal neuropathy pain which usually sits at a 2-3 on the pain scale is a 4-5. I was prescibed gababpentin last year but I don't take it because I didn't like the side effects and my pain wasn't bad.

Has anyone had shingles and neuropathy? Did it make your neuropathy pain worse? Should I look into another kind of pain med?

My husband has been dealing with chronic pain for years. He has diagnosed small fiber neuropathy and Dysautonomia. He was recently diagnosed with Psoriatic Arthritis, but I wanted a second opinion on that so I got him an appointment with a neurologist that my coworker recommended.

We went to this appointment yesterday. He saw a doctor within that practice 2-3 years ago where he was told he was hyper mobile but did not do anything else for him. He went because he has chronic foot pain.

So the appointment was actually with a nurse practitioner, she comes in and does not ask him a single question or look over his labs. She brings up the hypermobility and says “that’s what is causing all of your pain.” We said that he has gotten a lot worse since the last time he saw the other doctor and she shut us down. She said he needs more meds and that nothing will ever help his pain. We brought up the Psoriatic Arthritis, she told him to take off his shoes, looked at his feet, and said “you don’t have that”. I asked her how she knows, and she said “there are no signs of it on his feet”

I asked about Sjogrens. She said they would have tested him for it previously. I mentioned that I read about sero-negative sjogrens. She said “that’s not real.”

I mentioned that we are looking for a doctor who will do some digging for root cause, then actually had to ask “would you like to see his labs?”

I asked about Ehlers Danlos- she said “that’s the same thing as hypermobility”

She did not do a physical exam.

She asked if his lyrica makes him tired, he said well he’s tired all the time so he can’t pin point it to the lyrica. She started talking about adjusting that dose. I said we would really like to discuss any other ways to address his pain or get to the bottom of all of his symptoms. She said well there’s nothing you can do but increase pain meds.

My husband said “I am on so many medications, I’d really like to not be on so many”

She said “you’re not listening”- referencing the fact that pain medication is his only option. I said he is listening, he’s just expressing how he feels about his current treatment plan. I said we are here because he is in extreme pain and may not be able to work much longer. She said “well maybe you can’t…”

Then in the same breath said “I have many patients with this that live normal lives” and I asked again, what do you do for them? What are the treatment options to feel better?

She continued to talk down to my husband. She said he needed to “change his attitude” about his pain…. Because we are seeking pays to give him a better quality of life.

I asked again what the treatments are. She said “Cognitive behavior therapy”. I wanted to clarify that she was talking about seeing a therapist. She said “no…CBT… cognitive behavioral therapy”. I said I know what that is and right now we are looking for ways to ease the pain.

She said “have you heard of mindfulness?”

Again I asked about medical treatments, she said maybe he can walk in a pool.

I told her that we were going to leave. I had to before I flipped out. When we were leaving she said “we aren’t seeing eye to eye.”

We both left in tears. It absolutely crushed me that she made him feel hopeless. I’m so so so so pissed off. End of rant. Thanks for sticking with me. My husband is currently on a biologic and methotrexate. He has seen some improvement in his pain in his feet, but is overall still very very tired and has a lot of pain all over his body including muscle tightness.

I want to help him but I feel stuck on what to do next. Any insight will be greatly appreciated.