Thread: My SFN Story
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Old 12-26-2015, 02:00 PM
DavidHC DavidHC is offline
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Join Date: Nov 2015
Posts: 732
8 yr Member
DavidHC DavidHC is offline
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Join Date: Nov 2015
Posts: 732
8 yr Member
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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 View Post
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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