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Living with Neuropathy - Welcome to the group
Neuropathy | Last Active: Oct 27 5:51pm | Replies (6152)Comment receiving replies
Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN. The link that @johnbishop gave you has important information.
I have read your new member posts and have the feeling that life is quite confusing for you. If I didn't know better I would think that you were dealing with as much as any three people with SFN. Who have you chosen for your clinician.....neurologist, pain management specialist, endocrinologist, a dermatologist?
Do you have a PCP, primary care practitioner to help you make lists of your symptoms and treatments? I think there are a lot of folks out here with at least some of your symptoms?
At this point, i have 3 clinicians who collaborate when necessary. Recently I had a very serious attack of SFN itching so I identify with your statement about itches that don't respond to a back scratcher because the area is numb from SFN. I have another telemedical appointment with my dermatologist on May 14 to try to come to some conclusion about how to avoid the itching or at least treat it quickly. I will be posting the results and the medications.
What on your list of symptoms is the most distressing? Do you think that the seriousness of your symptoms are in part a result of anxiety caused by the COBID-19?
May you be free of suffering and the causes of suffering.
Chris
Replies to "Good afternoon, @sunnyflower, Welcome to Connect and especially to the discussions about Small Fiber Neuropathy SFN...."
I'm losing track of who I have responded to. Focus, confustion, decision making, fibrofog, memory and more are affected by my toxic meds and all consuming pain. Please forgive. Blessings, Sunnyflower.
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Hello. Wowzers, I'm usually the one who asks a million questions! Let me try to answer: I don't know that I've received a link from John Bishop? I think I have more than SFN. There's even large fiber neuropathy! I've had a few Neurologists over the years. Not impresses. Not much compassion and I don't know if my current is new in the field but seems to not know a lot. Doesn't have much to say. I have a PCP and many specialists, way too many! Intriguing that one can feel so numb they don't feel the backscratcher superficially, only if pressure and yet skin feels so sunburned it's torture to get touched there! All along the spine. I use 5
% Lidocaine patches. So expensive but work fairl well to make one not want to jump! Have had some minor itching, not a problem so far. Most distressing is constant unrelenting burning/stinging all over. I don't have any anxiety at all. I feel it is b/c I'm a woman of faith and walk very closely w/ our God. He has allotted me an extra measure of faith. I trust Him implicitly and know Him well via the bible. Nothing weird. I don't ever question my situation nor have I ever felt a victim. This is even when thrashing in bed, tears rolling, begging Him to take me now, b/c I know He had every day of my life planned before I took my first breath, Psalm 139:16. I have the peace of God that surpasses all human understanding through Christ, Phillippians 4:7. I'm extremely blessed. I know this life is temporary and no one goes one second before their appointed time. I'm not anxious but am in the highest risk as I'm on 2 immunosuppressant drugs, have autoimmune, heart, lung, kidney, thyroid, parathyroid, pancreas, adrenal, bone etc. diseases. Still, we have our human endurance and life is very difficult. Quality of life so diminished yet acutely aware of my innumerable blessings. I am deeply grateful. I wish it for all! Thank you and let me know if I can help in any way. Many blessings!