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.
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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.
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