My SFN Story

DavidHC · 01-01-2016, 01:47 PM

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!

Quote:

Originally Posted by bluesfan

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.

DavidHC · 12-30-2015, 06:35 PM

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.

Quote:

Originally Posted by madisongrrl

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.

madisongrrl · 12-30-2015, 09:03 PM

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

DavidHC · 12-30-2015, 09:56 PM

Wonderful to hear!

Quote:

Originally Posted by madisongrrl

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

DavidHC · 12-26-2015, 02:00 PM

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.

Quote:

Originally Posted by Ragtop262

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..........

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