My SFN Story
 

Hello all,

I’m new to this forum and have only been posting for about a couple of weeks. I’m very happy to have found it. I’ve already learned quite a bit and communicated with a number of helpful and knowledgeable people. I’m grateful for that.

This will be a longer post. I’m writing to tell my story and to see who else is out there, but also to start a small fiber neuropathy thread that may be helpful to those of us here with the diagnosis and to anyone coming. Any helpful information, uplifting stories, including stories of remission, etc. would be welcome.

I’m in my mid 30s. About half a year ago I came home from a late night workout and shortly after my left leg, I believe it was my left leg, began to shake, tingle and/or vibrate, actually the best explanation is that it felt like electricity was passing through it, mostly in my foot. At the same time the left side of my body began to shake. Soon thereafter, perhaps the same night or the next day it spread to my right leg. In hindsight I know that it started years earlier (maybe 2-3) with sores on my feet that would take weeks or months to go away, with unexplained heart palpitations (1.5 years earlier) and flaking skin on hands and face tightness (several months earlier). I had the heart palpitations checked out and nothing was found. My heart was healthy. Nothing showed up on regular checkups and blood work.

Anyway, I kept up my mostly unhealthy diet that was your typical North American diet that is high in bad carbs, not to mention some processed food, being inactive and in my case drinking far too much beer, including involving binge drinking almost every weekend, Fridays and Saturdays, and sometimes even Sundays. This was not a happy time in my life and to some extent eating such foods and drinking was a way of coping perhaps. I never drank that much in the years before these 4-5 years, but I was never that unhappy, stressed and hopeless.

So I kept doing what I was doing, especially since they were searching for a mechanical problem. No one told me to stop with the carbs, since a physician’s idea of a healthy diet is eating plenty of whole grains and fruit, which is completely false. I was told to cut back on the alcohol, but that this wasn’t alcohol induced. At this time they were looking for a mechanical cause, so the regular MRIs followed. A brain MRI was also done and was clean – they were searching for MS or a tumor. It was shown that I had some herniated discs, including some problems in my cervical spine, with 2-3 discs bulging and some degeneration and spinal cord compression. But the cervical MRI didn’t fit the clinical findings and there was no evidence of signal change on the MRI itself.

So I was told to do physical therapy and that has helped. But I was told to stop going to the gym. So kept eating like crap, drinking lots of beer and now not even exercising here and there. By the summer things became quite bad, my energy levels were terrible, I was fatigued, in lots of muscle and joint pain, despondent about my situation, depressed, very anxious and so on and so forth. During the days I had to rest at various points and that was discouraging too. To make things worse, my symptoms expanded from hands and feet to legs and arms to trunk and face/head. I was losing my body to whatever was going on. At this point I realized I needed to do something myself. I’m a researcher, read fast and absorb information quickly, so I started to read everything I could find, books, scholarly journals, internet sites, etc. I learned how destructive carbs, sugars, etc. are on the body, that the paleo diet was right, that supplements were useful and effective, and such things. I learned about Candida, SIBO, the GI system and its connection to the rest of the body. I read lots of medical journals at the same time, including many neurology articles.

I stopped drinking even a drop, cut out all carbs and sugars, including fruits and all other natural sugars. I began to walk after every meal, to eat only organic or local, grass fed or free range meat, lots of seafood and tons of veggies. This is where I am now, but even more precise given what I’ve learned since. I now have a ketogenic diet, and don’t even consume nuts and seeds, eggs, and other possibly aggravating foods. I have an ever expanding and more precise supplement regimen and am now back at the gym and being careful.

When I began all this, within weeks I saw great results, especially improvement in my energy and emotional levels, but also in my symptoms and my IBS symptoms. Yes, I had poor gut health, and it had been getting worse over the years, always a bad sign. I should have done something sooner but moronically did not. Now, at one point, about a month ago, I broke and ate some pizza, so carbs, gluten, dairy, processed food, an ice cream and some other things. I don’t know what I was thinking. Now, I don’t know if that was the cause, but since then I’ve had more symptoms, an expansion to new parts of my face. I’ve since been on a very strict and specific keto diet that I’ve designed myself based on my research, but even now most recently after burning my hand while taking something out of the oven I started to burn in that same place, as though I were reliving it over and over again. Now there is also burning in my right foot. To be fair, it’s not that intense, but it is an expansion of my symptoms.

A few weeks ago I was formally diagnosed with SFN, after two neurologists and three nerve conduction studies missed it. I have little respect for physicians and what I saw here didn’t help that. Then I found a wonderful neurologist, who was surprised they had not done a skin biopsy given my symptoms and the negative conduction studies.

Right now we’re looking for causes, including possibly something autoimmune, say Sjogren’s. Amyloidosis is on the table too. But we all know many cases of SFN end up being idiopathic. Just to give you some idea of my symptoms at present: tingling, numbness and electrical current type feelings all over, including place like my tongue, top of my head, chest, feet, hands; some burning recently in a few places; joint pain; fatigue (though this has significantly reduced); tremors in my hands; plenty of autonomic issues including blood circulation issues, cold right hand and feet at times, heart palpitations, dry mouth, itchy eyes, gut issues (tightness and pulling in my small intestine), so postural hypertension; and one of the worst symptoms of all is an internal so non-visible shaking from shoulder to feet on my left side – it’s always there at night when lying down and trying to go to sleep, and when it was worse in the summer my body would violently jerk when I would be most relaxed and about to fall asleep, sometimes just a leg, but sometime my whole body, and that was very worrying, but it has improved quite a lot.

So, that’s my story. Now, in addition to supplements and diet for SFN, I am also doing the same for possible Candida, SIBO, leaky gut and general GI health. My plan is to heal my gut and possibly heal my SFN, since I believe there is a connection. Of course, I can heal my gut and not see the SFN heal or whatever is causing it to go into remission, but I won’t know until I try. I am already seeing great improvement in my IBS symptoms, with about 80% improvement of symptoms, and my SFN symptoms are generally much better. But I worry about the expansion or spreading of the symptoms, and possible aspects of regression.

I suppose at this point, I’d appreciate hearing anything from others, including from others with SFN, especially those with non-length dependant, to hear what you’ve done, whether you’ve tried such a strict plan long term, and whether you’ve seen any results. I am wondering whether it’s even possible to heal SFN, whether it can be alcohol induced or GI induced, whether you’ve had gut issues, so on and so forth. I’m quite young and I had quite a number of life plans with my wife and career goals, but now I don’t know what to think, especially with the autonomic issues. My mood is much better than it used to be, so I’m okay, but dealing with this now and when I’m supposed to be at my best and most productive in life is difficult. I realize that there are many who have it worse, but part of my concern is that I don’t know where this is going and that is concerning for me so early in life when I need to work hard, be productive and shoulder the responsibility of a young family (or a major part of it). Unrealistically, I suppose I want to know that this unpredictable disease will not ruin my life, that I will be able to heal by doing all that I’m doing, and that I will find the cause or heal regardless.

Thank you in advance for any and all help and ideas. And thank you for all your contributions to this forum that has already proved so helpful!

And sorry about the length!

My SFN is not non-length dependent but I wanted to tell you I respect your dedication. I have not met many people your age that are so disciplined, informed and willing to do whatever is necessary to get better. Btw I'd love to see what supplements you are taking.

I also think gut health is critical. Inflammation is an enemy.

From what I've read when you hurt a part of your body, as you did with a burn, that's often the spot nerves seem to target. Maybe someone can explain why. I can only say it happens to me also.

Please keep us posted. I am rooting for you.
Pinky

Firstly
 

I feel that this forum needs to be open to all Neuropathys because some symptoms and the associated stories and experiences cross diagnostic borders and are common across many kinds of PN. I also am not smart enough to use the sub-forums. This leaves me with the search function. For instance, I had a "burning pathway" from knee to hip as first symptom and bacame involved on left side 60 days later as I felt the "shocking" bridge across to the right side. Similar symptoms but different diagnosis. Secondly I am sorry you have so many symptoms right now. I understand your motivation to get it right with your eating and digestion. My concern is you said you were told to quit exercizing. With all that is spine related with you I would think that a core-related floor exercise for your back muscles would have been in the mix. Just off the cuff, I would say that I had a Chiropractor that helped me tremendously in my early stages. That deal about the quaking on one side?? Gait,balance,specific muscle exercizes, perhaps one could help you. Good Luck, Ken in Texas.

Thanks for posting your story David. It always amazes me how different each of our cases are, with regard to causes, age and nature of onset, symptoms, degree of progression, etc. At the same time, it also amazes me how many similarities there are in the course our journeys take as we try to find a cause, find a cure, find relief. Many of us also seem to share very similar fears and frustrations as we come to terms with the uncertainties and the impact this disease has on our lives - and the lives of those who are close to us.

I admire the fact that you have been able to make such drastic changes in your diet and lifestyle. I have made some modest changes, but have not had the willpower to go "all in" on the dietary changes.

Your gut problems are of interest to me. I have suffered from IBS since I was a kid. It took me a long time to realize that I had a problem, because I grew up with it and sort of assumed that everyone had the same issues. In my case, the IBS was very closely linked to anxiety issues. (A little bit of anxiety sets off my stomach, and a little twinge in my stomach sets off my anxiety.)

My PN symptoms started during a time of extreme anxiety in my life. And of course, the onset of those symptoms, all the tests, etc. just continued escalating the anxiety. At some point I just reached a point of acceptance of what was happening, and the anxiety began to lift. And my IBS issues began to subside at the same time. I'm still not sure what it all means. I'm just happy that my anxiety and IBS symptoms are reduced, and my PN symptoms are stabilized. I know it can flare up at any time, so I just appreciate every minute that I can feel something other than pain..........

David,

I can relate to some of your story. My SFN symptoms came on very fast when I turned 38; it's pretty much patchy all over my body. Looking back even a few years, I had many "mechanical" issues that were likely nerve related - especially that last year leading up to my acute phase.

Unlike you, I have extreme burning - face, head, arms, legs, back, butt etc. I have a vestibular disorder that came along with all of this. I think it has something to do with the nerve pain that broke out deep on the left side of my face - throat to eyeball. It's likely what neuros called Atypical Facial Pain. Fatigue, shooting pain, tremors, heart palpitations, tinnitus, hearing issues, disequilibrium, wet and hypersensitive skin, deep bone and joint pain, and spasms....you name it, I've experienced it.

I was eating a whole-foods Paleo style diet before this came on. I was also an elite cyclist (maybe not the healthiest thing, but I loved it) and had a really demanding career. Now my life is so different. I've adjusted, but I feel like I've lost my identity and it makes me sad sometimes. So I just try to take it one day at a time. My career has been scaled back and the only exercise I can do is pool aerobics with a bunch of women that are significantly older than myself.

It's great that you've been reading the paleomom's blog. She is a biomedical researcher and has really dug into the data with intestinal permeability and autoimmunity. I've been kind of doing a higher fat paleo diet, but I think I want to try a full on ketogenic diet for a few months. I bought a ketonix to help measure ketones. I also take a number of supplements and enjoying reading about supplement science. I used to both develop analytical methods and perform 3rd party lab testing for a wide variety of supplements and pharmaceuticals. I never knew that my background would ever come in handy for anything in my personal life.

Like you, I'm a researcher. It's both in my personality and is something I do quite a bit in my professional life. The top thing that has helped me so far is taking a drug called Low Dose Naltrexone. I've only been on it for 2 months and it has significantly reduced the burning in my hands and feet. The doctor who prescribed this drug is evaluating me for Lyme disease. If this turns up negative, then I don't know what the next step is. All my regular doctors don't really seem to care or want to help. They are perfectly fine giving me as much gabapentin as I want to take, then send me on my way out the door. This disease is so incredibly frustrating.

I'm both glad you found this message board and sorry that you had to join the SFN club.

Hi DavidHC

Thanks for sharing your journey and the info you've researched.

I have PN (probably autoimmune SFN) but the neurologist says there's too many things going on health-wise to establish a definite diagnosis/cause. (Primary Addison's Disease (adrenal failure), Osteoarthritis, Sicca syndrome, TN + other stuff). Like you I've found lots of useful info here on NT.

If you haven't read the PN stickies here are links to a couple with lots of info and directions to other links & websites:

http://neurotalk.psychcentral.com/thread177.html (started by Liza Jane)

http://neurotalk.psychcentral.com/thread43699.html (started by Liza Jane)

If you go to page 2 of the second thread there is 3-part post(s) by a member named Wing42 that has information on diet & supplements to reduce PN.

All the best for your continued treatment. You've done exceptionally well to turn your lifestyle around - hope it brings you more improvements.

Certainly--
 

--given the immune function of the gut, dysregulation there might lead to autoimmunities with neuropathy as a symptom.

And, alcohol has been implicated in many neuropathies both through direct action and through impacts on nutrition--a lot of heavy drinkers suffer from vitamin deficiencies that themselves may result in neuropathy

Since Liza Jane's testing sheets were brought up, what sort of serological testing have you had? There are tests for numerous autoantibodies, but given the less length dependent and rapid presentation you mention, the obvious investigatory roads include toxins, and gut autoimmunities such as Crohn's anc celiac.

Thank you all for your responses. I appreciate the kind words, advice and information, and general good will and encouragement. I've only shared my story with a handful of people I know, so it's nice to tell it to others, especially those who for unfortunate reasons are in a position to understand it and to empathize with me.

Rather than respond to everyone at once, I think I'll take it one at a time.

Pinkynose, thank you for your kind words. I'm not perfect, but I'm trying to do what I can to set things right. I have to at least try and to do whatever is in my power, I think, especially since I'm not just responsible to myself, so that's where I am. I'm finding this forum immensely helpful, including communicating with you.

Regarding the supplements, here's my current regimen:

Immediately upon waking: B12 (1500 mcg)

With breakfast: Enzymedica Digest Basic (1 capsule), Benfotiamine (300 mg), Vitamin C (Camu C, 2 capsules)

With lunch: Enzymes Digest Spectrum (1 capsule), NAC (NOW brand, 1 capsule)

With dinner: Enzymes Digest Spectrum (1 capsule), Benfotiamine (300 mg), NAC (NOW brand, 1 capsule)


Now, in the coming weeks and months I'll be introducing some new ones and ones that I tried earlier but failed to successfully introduce, including D3/K2, B-complex (from Pure Encapsulations), Cod LO, L-Carnosine, COQ10, Reservertrol, PQQ, Acetyl-l-Carnitine, R-Lipoic Acid, and a host of herbal antibacterials, anti-fungals, and the like. I introduce only one per week so that I'm sure I can isolate any problems and so that I can see if there are any positives, and I search long and hard for supplements that have the least number of additives and fillers, usually succeeding in finding ones that only have cellulose and water added. Pure Encapsulations is good for this, but others too, including Doctor's Best.

That's it for now. :)

Sure, Ken. I was only suggesting (or meant to do so) that I would love to hear from SFN people. And I'm not even sure I have non-length dependent, at least in the form outlined by the literature. Categories are tricky things and they know so little about SFN other than that it's neuropathy restricted to small fibers. Until recently not really even that much.

Thank you for your kind words and advice. You're, of course, right about the need for core work. At that time, they thought it could be mechanical and were worried, since everything I did or they did with me made things worse. the physical therapists even refused to see me, since they were honest that they were worried. Once all the MRIs were in and it was clear that despite the herniations, the symptoms were not due to mechanical issues, or so we think now, they started to help. I'm back in the gym now, slowly, and in the next week or two I might start (very slowly) with some weights too. This is coming from a guy who used to do very heavy weights. I can tell that when I exercise I feel better and when I don't I feel worse. And who knows what the future holds, perhaps one day I won't be able to exercise, so I better take advantage now.

The symptoms all all over the place and in recent days my legs have gotten worse, almost like the summer. The left one hurts from the knee down, especially in the knee, the joints and muscles and all, as though there is poison in my limps. It drains my energy so easily. I think it could be the very low vitamin D, which I tried introducing, but had to cut out due to possible GI connection. I will reintroduce it on Sunday or Monday and see where it goes. I felt much better when I was taking the D3/K2.

Anyway, I hope you're feeling well, or better, and had a great Christmas. Thanks again for your response.

Ragtop,

First off, thank you for listening. Thank you also for your kind words and for sharing some of your story. I appreciate your words of wisdom, and very much agree. I'm trying to take things one day and step at a time, but it's more difficult, I think, when you're at the start of your life and you're expected to plan longterm and to build a future, not that I'd be okay with this happening to me when I'm retired and planning to enjoy quieter and more relaxed times. I suppose it just creates a different set of problems now. But I'm doing what I can, and that's all I suppose I can do. It's difficult not to become overwhelmed and somewhat hopeless. I no longer feel like a young man, but that's what I am or supposed to be, and everyone looks at me as if I can't actually be ill or somehow incapacitated, at least at times. It's a strange and somewhat ageist thing.

Anyway, thank you for sharing about your gut health. I'm sorry you've had to go through it for so long. I truly know what it's like and how much it can affect one's life. I honestly can't recall how far mine goes back, but likely to my teens or early 20s - I think the latter. I almost can't recall a time without it. I'm not surprised yours is connected to your anxiety. When my stress or anxiety goes up, mine gets worse too, almost instantaneously. Given recent research, it seems our gut flora are not in balance, that we don't have enough good bacteria. I'm trying to correct that, as I mentioned in the post. Studies are showing that correcting this can actually affect anxiety and depression. Did you do anything with respect to diet before you saw the improvement? Not that that's the only way your gut flora could have changed. But the research is showing this more and more clearly.

My onset and testing also did a number on my anxiety levels. I even needed medication to be able to lie in the MRI machines. I had so much anxiety and fear that I became claustrophobic, which I'd never been. I'm much better now, but that was not a good time.

Anyway, I could write much more, but I'll leave at this: thank you for your kind words and thoughts. I'll try to keep in mind the sage words with which you ended things, and to keep trying to dedicated to my difficult regimen. I wish you the best of health and am glad to hear you have some stability with the PN.

Madisongrrl,

Thanks for all this. Sorry for the delay in responding. But I did receive and read your helpful note, and really appreciate the sentiment. I’m glad I find this and you and the others, and hope that we can all received some relief, if not a cure.

I’m sorry to hear that you have been suffering so much. Your situation sounds worse than mine. I also had tinnitus, spasms, lots of joint pain, but no burning, or very little. The tremor on my left side can be bad, but often or mostly when I’m about to go to sleep. Recently, the worst has been face symptoms, lots of numbness, tingling, shocks and the like. Not fun. But overall, I think I’m doing better. But honestly who the hell knows with this illness?!

I do hope you’ve continued to improve with your treatment now that they know at least one of the causes. I also hope that more and more you receive back some of the self you were, your life, identity and all that defined you. This has hit me hard too, and I’ve been through lots of reassessing and rethinking of who I am, what I want and can have in my life. It’s something you don’t expect to deal with in your mid-30s.

The diet has and does help. I use Ketostix now and then, and they show .5, which is what my lab blood test showed. It’s good. You don’t want to be stuck in the extremes of ketosis. I’ve been on this for 6 months. It sounds like you had a healthy diet pre-SFN, so I’m not surprised that yours at least partly, if not entirely, came from a foreign entity, Lyme. Mine is likely autoimmune, given my diet and lifestyle, but perhaps that just made worse a foreign invasion, so to speak. I’m going to treat for that, since I really don’t know what else to do, or where to get the meds you’re getting. It doesn’t work that way here really, though I could try to ask my GP. There are no physicians working outside the system in Canada.

But more and more I’m thinking of heading across the border and seeing what I can get done. It will be at a financial cost though.

Thanks again for all the helpful links, advice and for just commiserating. If you have any ideas, anything that can help, I’d be grateful. In the meantime, I hope you keep improving.

My SFN Story
 

Thanks David. I'm getting better every single day. Baby steps, I guess.

Wonderful to hear!

Hi Bluesfan,

Thank you for your kind words and the encouragement. This forum and you all are wonderful. I genuinely find it encouraging and an important part of this, and on some level I want to get better for us all, and feel that when others improve, it's a pick me up for me me too. I think such community is important.

I'm sorry to hear about your various health problems. I hear what you're neuro is saying, but perhaps it's still worth seeking the cause, in case it can be addressed? Perhaps another neuro will, if he/she won't? How have your symptoms gone? Have you seen improvement with dietary and/or supplement or general lifestyle changes? I hope so. Often that's all we have.

Thank you for those links. I've read much on here in the last month or so, but this looks good, and I don't think I've read it all for sure. I do have all the supplements and then some waiting in the wings and will introduce them one by one. In the last week or two, the B12 and B-complex introduction has really helped with energy, mood and much else, so that was a very positive introduction. I drank a lot, so it could have been caused by nutrient deficiencies, at least partly, if not entirely.

Well, I'll keep updating things, and will hope it's more positive than negative.

Thanks again and happy new year!

Thanks for this, Glenn.

Yes, this: given the immune function of the gut, dysregulation there might lead to autoimmunities with neuropathy as a symptom.

Also what you say about alcohol is spot on. Moreover, drinking lots of beer can cause dybiosis in the gut, so there's that. I want to set things right in my gut and see what happens.

I've posted elsewhere about this, but I've had lots of blood tests, including ANA, which came back negative. I'll look through Liza Jane's sheets and see what else I can do. I want to test for mold and other toxins, since I suspect something along those lines, but I'm not sure what tests I can get done here in Canada.

I've had the tests for Celiac, but since I haven't had gluten for months, that came back negative. I may never know it's gluten, if it is that. I hear there's some test in the works that requires only 2-3 days of gluten exposure. But there's no way I'm going to eat gluten for months to get tested. I'm having a biopsy in the spring by my GI, but that will come back negative too, given my lack of exposure.

I do have IBS, so there might be something going on in the gut, likely so, made worse by the beer, the yeast and grain, and possibly some toxin or something that has caused infection and systematic inflammation.

Amyloidosis is also a possibility. I do have relatively low B12, but not deficient according to conventional standards. My D was quite low though. Anyway ideas and suggestions are certainly welcome, and thanks again.

Have you tested for helicobacter pylori ?
Have you tried to reduce the salt intake ?

H pylori can reduce B12 and other nutrients absorption
Sodium increases the activity of H pylori and irritates the gut.

Thanks, Stillhoping. No, I haven't tested for it but have suspected it in the past. I'll bring it up with my GP when I see her in the new few weeks. I consume lots of salt, good sea salt, and don't feel any worse, so I don't know. My GP did do a parasites and bacteria stool test a few months back, but that tests only for the most common things, and I don't believe HP can be tested that way, if I recall correctly.

I have used the pro-biotic oral sprays. They have helped, i can't stand yogurt (if not sweetened) so its a better bet for me.

My favourite yogurt is plain, sour yogurt, so just naturally fermented so to speak, and so very high in probiotics. But I don't eat dairy anymore. Now I get my probiotics from sauerkraut, and will soon ferment all sorts of my own veggies. But I've also been meaning to check out Custom Probiotics as I posted here: http://neurotalk.psychcentral.com/sh...02#post1190902

I started to keep on a healthy nutrition with very low salt intake more than 10 years ago. I tried a few times (before this nutrition, and again recently) a treatment to POTS with high salt intake (2000-3000mg sodium for day).
The salt increased my dryness and caused many gut symptoms, it improved greatly when I stopped the treatment and reduced the salt.

Interesting. I wonder if certain of my symptoms would disappear from reduced salt. What kind of salt were you consuming? I've so far seen no connection between my salt intake and symptoms, but plenty with glucose.

As far as I remember from your posts, my nutrition is very different then yours. I am vegan, I eat veggetables, fruits, unprocessed carbs, legumes, nuts and grains. Almost no processed, fried or smoked food, I hardly add salt to my food (I guess my daily sodium consumption is about 500mg), or eat spicy food. I get most of my fluids from the veggie and fruits so I don't drink much.
When I started this diet all the Sjogren's like symptoms improved/disappeared and I thought for a while that I was cured.
I stopped using eye drops (I had punctal plugs and used to put eye drops and gel many times each day), the dry skin, nose and skin greatly improved, the joint and muscle ache, and the low grade fever disappeared, the POTS improved and I had more energy.

But I still developed Lymphoma, SFN, and debilitating fatigue despite of many years with that nutrition...
Who knows whether the nutrition helped or not with these.... I don't have a control group...

Right, that's true. My diet is paleo ketogenic. I consume plenty of quality sea salt, almost entirely pink Himalayan salt. I wonder how you'd do on such a diet. I wonder how I'd do with less salt. My face symptoms have gotten worse, but that could also be due to the cold weather, which especially affects my eyes and the watering.

I'm sorry you continue to develop such health problems, and as I've said before I hope you find relief soon. Keep hoping! :) I don't know what the future holds for me, but I do hope I keep improving. I don't know what to make of some of my symptoms that seem to be getting worse. My energy levels are much better though since I've been supplementing with B12 and B complex.

Hello David,

I am experiencing a similar situation and I found this thread, after these three years how is your current condition, hope fully better,

Want to share with you my experiences hopefully you see this message

Hi there,

I'm sorry to hear you're in a similar situation to me and that you had to seek our this thread. I haven't even looked at it in years. But since you asked about it, I'll try my best to look it over and write an update about my disease and to say where I've at now with the medical care I'm getting, which is really no medical care. Here is something in the meantime that I wrote on here recently, though it only touches on my disease per se: https://www.neurotalk.org/peripheral...europathy.html.

Feel free to share on here or to message me. I'm not on here as much these days, but I try to check now and then.

Wishing you a good day,
Dave

David, I have had some ups and downs with this, unfortunately more downs, please give me your email so I can share with you what usually works for me and seems to affect, reading forums this is the time I find the most similar case to mine. I have sent you the invite on neurotalk to friends as well

Hi George

Just to let you know we don't recommend anyone give their email address in posts, as these are picked up by Google & other search engines and so the chance of unwanted spam can increase!

You will soon be able to use our private messaging system, and that is the safest way to communicate if you don't want to have your discussion posted on the forum, although we do appreciate when members share in posts, as that also helps others.

How can I use the private messaging system, ??

After you have a few posts as a new member, private messaging open up for you.

Our FAQ section gives details on how to use PM
https://www.neurotalk.org/faq.php?fa...ivate_messages

Hi George,

Sorry to see you here. Yes, feel free to send me a private message when that option is available to you. I've accepted your friend request though I never did figure out what the use of that is other than to keep track of people you want to keep track of. I'm not on here as often these days but I'll try to check in more.

David, another question I have read your CBD oil post and I am about to try that, but I would like to ask you, are you still trying Keto diet? I have been trying that in a while and I am trying to figure out if it causes any improvement or not because it is difficult to follow, besides I have lost more weight than I would like to.
And what about your muscle weakness, my muscles dont have the same resistance and start to shake when I am remain in a same position, but I can still lift some weight and run.

I hope the CBD helps you like it has helped me. As for the Keto diet, it was the best for me, but it was very difficult to stick to. Let me elaborate. It reduced many of my symptoms and I felt good on it. But it was a mixed bag. In addition to being difficult to stick too, because without carbs I often had low energy (though not always), my uric acid serum levels went up though I'm not certain of the connection, and I would shake every day. I'm not sure why the latter would happen but likely because I didn't have enough carbs in my body. I have some other theories. I would say it's worth trying to be sure. I think I want to go back and try it again for another 6-12 months and see how it goes this time. I'm now eating more carbs and even sometimes have grains, though that usually means just rice, never any glutenous, and no dairy, and my symptoms are worse. But I never shake or vibrate like when I was on the Keto diet.

As for the muscle weakness and shaking, yes it happens to me too. When I try to do strength training, say some core exercise like a plank, and I have to stay in one position with my muscles engaged, I shake and sometimes it gets violent. In the next few weeks I'm going to try to get back to the gym and to workout with weights more like I used to. I have to be careful. I think it's the stabilizer muscles that are most effected. I have pure small fiber neuropathy, but as my neurologist pointed out more and more research is showing that SFN does in fact damage muscle tissue and it's not so cut and dry with small fibers having no connection to muscle tissue. But it doesn't seem to damage large muscle tissue to be sure.

Exact same thing happens to me, some strength positions my muscles start shaking, other think that bothers me a lot is allodynia, with my jeans or the bed sheets, I am not trying keto anymore because I am not sure if it actually works, but I am paleo, I am trying prolonged fasting as well since I read a lot of benefits including inflammation markers reduction, I will let you know how that works. Will start fish oil supplements, CBD oil and b12 supplement , I am tired of going to doctors so I will focus on getting better not getting a diagnosis.
As you said SFN should affect muscles based on my symptoms, also I read that veins are controlled by the small nerves so might be the case that not enough bloods go to the muscles, just a theory after I read a lot of info,
hope you are better these days!!

Thanks for the nice words. I hope what you're doing helps you. It's an uphill struggle but there are things we can do to help ourselves and it seems like you're doing good. I'm trying different things too and want to add some fish oil. It doesn't always sit well with me but I'll try it. I hope the CBD oil is helping you too.I take it every day.

I had great benefits on the keto diet and the paleo works too, but keto has some downsides and it very tough for me. I would shake more on it, have lower energy than usual and my uric acid levels went up. The longest I was in keto was 6 months. But the weight I lost was amazing, I had less symptoms and the progression of the disease was the slowest then. I also felt pretty good other than the issues I've mentioned. Hope you're doing alright these days!

I also have severe sfn diagnosed via skin biopsy.

I get full body burning and tingling sensations from head, face, arms legs, back, chest and stomach, along with allydonia, muscle and joint pain, anxiety.

For me any thing that makes my brain have to process information makes the symptoms worse, such as reading, or watching tv, or even thinking, I pretty much have to be in a semi meditative state all the time kinda zoned out like a zombie or my symptoms will flair.

Also it seem I have another condition called (multiple chemical sensitivity) and any chemicals and most foods will make my neuropathy and other symptoms flair up. So I can't leave the house becuase of car exhaust, people in public wearing perfume, chemicals in stores ect. so I am pretty much housebound and have been for the last 4 years.

Because of my chemical sensitivities I can't take any meds, I have tried opiods, gabapentin, lyrica, antidepressants and a bunch of vitamins supplements but they just cause the pain to flair.

I did a 2 week water fast and on day 4 of the fast all of my symptoms went away
so I kept it up for another 10 days and had no symptoms for those 10 days either, I thought I had cured myself but I soon as I started eating again all the symptoms came right back.

Not sure if a longer fast would be any better or not.

Recently I cut out all carbs and sugar from my diet and went full carnivore (meat, salt and water only) and my symptoms seem to be less severe but it is so hard to stick to stick to, everybody in my house is eating pizza and drinking coke and icecream and I just have to smell it and look at it and it drives me nuts. Makes it very difficult to stick to it ya know.

I also just started LDN (Low dose Neltrexone) but have only been on it for about a week. I have heard some people with sfn who said the got some relief from it but it takes like anywhere from 6 weeks to several months to start working. Some people even said it took as long as 6 months to a year before it started working.

Hi DavidHC,

Thank you for sharing your story.

I don’t know if this has been asked but was the cause of you SFN ever found?

Can you list the tests (especially blood work) that were done and their results. I’ll really appreciate this.

Thank you.