Connect
← Return to Anyone here dealing with peripheral neuropathy?
Discussion
Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms are ongoing and I try to always smile and tell everyone I am great. I know my primary doctor who is wonderful wants to help but he has also seen doors closed without any answers given. I will have to read up on SFN and small fiber neuropathy. That is something that I have never heard about. I sometimes feel like no one wants to take the time to just sit down and explain to me what to expect or how to deal with what is happening to my body. I feel shoved aside when it comes to doctors explaining anything. I print off each report after seeing a doctor and that is the way I learn more about what is going on than from the doctors. I guess I am looking for a plan on how to deal with this. I am a doer not a sit and let it happen person. I have yet to have someone tell me this is what you can do to get better or feel better or feel more informed. Everyday is more pain and more spasms and no answers.
Replies to "Thanks for replying Chris. I am very discouraged I guess. My pain never stops. The spasms..."
Good evening again @betty1954, I hope the evening has been pleasant for you. Your story of discovery is frustrating and not uncommon. There is nothing wrong with you. For how long have you been in constant pain? What have you read in your patient reports that might give a clue about your next step or even a possible diagnosis?
Sometimes this disconnect happens when the patient doesn't know how to describe what the body is feeling in the terminology that the clinician uses. My journey took between 2-3 years to correctly identify and diagnose SFN (small fiber neuropathy). There is a skin test that pretty much seals the deal. Here is the medical language. "Demonstration of a reduction in the Epidermal Nerve Fiber Density (ENFD) on punch skin biopsy is a highly sensitive and specific test for Small Fiber Neuropathy (SFN)."
By the way, this test is minimally discomforting. It takes about 45 seconds. Then it is sent off to one of the few labs that analyze the results.
So for tonight....just breathe....3 deep breaths. Accept that you are beginning a journey and it is too soon to be dismayed and discouraged. Your "homework" includes John's video and any tips you might pick up by perusing the SFN discussion on Connect. Here is the link.
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-1/?pg=4#comment-266111
I do want you to know that I noted your comment about your retiree status and financial resources. I think we are in the same boat.
May you be free of suffering and the causes of suffering. Chris
Connect
@betty1954, Good afternoon. Oh, my dear....knowledge is power and you certainly seem to need some of that stuff. I have to leave right now and will return to your need to know questions later this evening. In the meantime, I am tagging @johnbishop so that he can share with you the video with the explanations of all types of neuropathy. Don't let the big words scare you away.
You may want to share with John and me, the medications you are currently taking. Do you have an exercise program that helps like gentle yoga? Do you practice mindful meditation? There are many feel better options. Let's get this wheel in motion.
Goodmorning @johnbishop.
If you have a minute will you help @betty1954 understand neuropathy better? Thanks....and may you both be free of suffering for even a few moments today @betty1954. Chris