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Sudden onset neuropathy and scared
Neuropathy | Last Active: Sep 30 8:37pm | Replies (34)Comment receiving replies
Janet thank you for sharing this. I too was in great health and very active with dancing and hiking, snorkeling, kayaking... and then out of the blue I had tingling in my left foot. Which in seven short months has spread to all my extremities, shortness of breath and feeling wobbly (kind of like in the past just in January when I would stand on a Bosu ball at the gym to do my weights). I was diagnosed with small fiber polyneuropathy, probably idiopathic. So, having worked for 10 years as the director of social work in a physical rehab hospital - you guessed it, my profession has me in overdrive thinking "I need to get a ranch house before it gets worse. I need to get a grab bar for the shower - I'll find a fashionable one. I wonder where I can find a fun fashionable cane." And "oh no - what if it's autonomic! And what if my neurologist didn't get this diagnosis right?" And I am awake at night worrying. Of course I'm not even physically at that point yet, or maybe never! So my question is - how do I find a meditation instructor? And is there a particular type of meditation that I should practice?
Replies to "Janet thank you for sharing this. I too was in great health and very active with..."
Hi Robin:
I am concerned that small fiber PN would cause the shortness of breath and imbalance that you are feeling - and in such a short time. It can impact autonomic, but there are other autoimmune diseases that impact a person suddenly. I would absolutely get a second opinion about the diagnosis.
My neuropathy came on suddenly but it has progressed slowly and it has been 3 years. Make sure you've ruled out all else. Good luck.
Betty
It’s very smart to start thinking about the future because the sad truth is that the neuropathy will probably get worse as the years go by and what you can do now to prepare for that will be easier to accomplish.
I am a retired OT and also worked in rehab. People like us can’t escape what we know about what possible future disability can require. My dream house before OT school was an old Victorian with a big front porch, we live in a ranch house with one step to enter, the tub and shower stall now have grab bars and a hand-held shower head, the toilets are high ones, the washer/dryer are on the first floor level, and I have a very stylish blue print collapsible cane (Amazon). The shower chair, bed assist rail, and rollater my mother used are up in the attic. I’ve also gradually, but persistently, kept up with small repairs and saved for large ones, emptied the basement, decluttered closets, etc to prepare for if/when the house needs to be sold. My motivation is to do what I can to “get ready” for my future if/when I am less physically able.
I find doing these things to prepare make me feel settled and less stressed, there isn’t a yawning chasm ahead to feel overwhelmed by, more of an “I got this” approach. In the beginning, after diagnosis, I did a ton of research, pursued top flight Neuro and Ortho MDs, did all the testing, but it is true that you do have to learn to live with it, do what you can every day, try to not dwell on what’s difficult now, do your best with what you’ve got each particular day. We Connect friends are a great resource and comfort.
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Hi Robin. I feel that we have so much in common. I know how the thoughts can get away from us. Fear is the biggest hurdle we face. All of the other details we can handle. We can not get lost in the "what if's" of this condition, or any chronic condition, this is why managing our thoughts is crucial. The mind should be our servant, not our master. We are the master. Yes, I can share some information with you but I'm not sure what I'm allowed to say on this format. It's the first time I've done this kind of communication. I would suggest mindful meditation and visualization technique. Feel free to write to me if you would like. janwebb23@yahoo.com