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@sunnyflower

Hello Barry. I have been diagnosed by 2 neurologists (SFPN) and several Rheumatologists over the years (mixed connective tissue Dz/Fibromyalgia/collagen vascular Dz/etc.) Strangely, my SFPN is pretty much head to toe and, even more strange, along with the painful skin burn/sting, is numbness almost everywhere! I think I likely said that I can't feel wetness, even when in a swim pool! I can however, feel temperature and pressure. All my specialists and medical providers tell me I 'm a complicated patient. I reply, "hey, you're interfering with my denial!" with a smile. I really wish they all would quit saying that. My Rheumatologist said it last week. It's amazing how much self-care is required each day! Friends and family don't understand. I have been advised to ask them to adjust their expectations. It's complicated. They don't see it bc I'm always smiling and positive. Think I will add some of the last of this message to the Living With Neuropathy subject in hopes it will help someone. I have the best, most supportive husband. I am so blessed! Warm regards, Sunnyflower

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Replies to "Hello Barry. I have been diagnosed by 2 neurologists (SFPN) and several Rheumatologists over the years..."

@sunnyflower I know what you mean about the "always smiling and positive" demeanor causing others to not think what you have is as severe as it is. When my wife (who has bad neuropathy), talks to anyone, including our families, she seems very strong and forceful, outgoing and very good natured. She is somewhat stoic and even if she is suffering badly she still can manage to mostly seem normal to others. I don't think all of them realize how bad it is. I have to tell them and describe what she goes through. Then they say, "Wow, that's bad!" and I say "Yeah". Otherwise they just don't quite get it, like when she was not able to travel to see them (before covid). I don't think they really ever believed she was in that rough of shape. Best, Hank