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Controlling the Anger and Sadness: My Neuropathy is Overtaking Me
One of those days today where feet are just throbbing, can't find shoes to wear, can't be without shoes, loaded up on CBD, and finally not in so much pain. Just have real sleepiness from CBD. Now folks: Is this a way to live??????? How? I am such a healthy lady without this neuropathy. But it has overtaken me. Punch drunk on CBD. So messed up. I hate this. Crying. Don't know if I will ever really learn a coping strategy, deep down. How do we do this every day? This pain warrior is exhausted. Lori Renee
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Neurological tests have confirmed that I have SFPN, primarily in my feet, though the tingling goes up above my knees. I have several other issues that could have neuropathic involvement. Esophageal dysmotility, diplopia, silent reflux, bladder and bowel and intestinal challenges, reduced sensation in my fingertips and face, disorganized motion at the back of my tongue, tinnitus, sudden loss of muscle in my left knee, delayed response from my ears to my brain stem, and the list goes on. No wonder I have clinical depression 😫
Much of life is uncertain, regardless if we're in perfect health or in a desperate condition. There are those who preach that each person has within themselves all that they need to live life successfully. Really? Some of us could probably stand to have a little more self sufficiency, but I've learned that I can't live life successfully on my own. I need community. "No man is an island" comes to mind.
And for that reason, I'm glad to be part of the Connect community. And other communities, as well. Thanks to each of you who are encouragers, thanks to you who share your personal wisdom, and thanks to you who voice your struggles. Synergy is a good word.
Jim
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6 ReactionsAhhh, Jim...you bring a tear to my eye. Thank you for being you.
Rachel
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2 ReactionsGood morning Lori,
Just read your response and you’re absolutely right, no one wants to be a burden, but on the other hand, no one really knows what you’re going thru, certainly my family and friends.
I’ve been told I don’t look that sick, that’s why no one really gets how hard it is for me.
My poor husband has been my primary caregiver past few years, and I really feel sorry for him.
All he does is drive me to doctor appointments, and he even has to help me shower, even though I’ve started doing this myself,but let me tell u, something that simple is a real chore for me.
CIDP is also known as Chronic Inflammatory demyelinating polyneuropathy.
After 6 neurologists, I finally have a diagnosis. They think it’s an autoimmune thing, destroying the protective nerve coverings surrounding my nerves.
The numbness and nerve pain can be awful at times, so I take Ibuprofen round the clock, along with Gabapentin 3 times a day.
I thought the Gabapentin wasn’t helping much, but one thing it is doing is spacing out the electrical jolting pain I get in my feet and ankles sporadically.
Sometimes I feel like someone is stabbing me or pulling my toes with a pliers.
This morning I woke up with pain and numbness in both legs and feet, which is a horrible way to start the day.
What is Kratom, I know you said it helps you with your pain.
You take care, and I look forward to communicating with you again soon! Marilyn M
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1 ReactionWhat is SFN?
I feel the same often,just wish I could have one good day every now and then.
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1 ReactionHi Jim,
I also have similar symptoms as you, even though I’ve been diagnosed with CIDP.
I’m with you, we need to be able to connect with others who are going thru similar issues, and it certainly helps to be able to vent, as they say,without seeming like a whiner!
God Bless, Marilyn M
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2 ReactionsHi @harley22 -- Here's some information on small fiber neuropathy that gives a good overview of what it is. I've also listed a couple of active discussions you may want to join.
Small fiber neuropathy
-- https://ghr.nlm.nih.gov/condition/small-fiber-neuropathy
> Groups > Neuropathy > Small Fiber Neuropathy?
-- https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/
> Groups > Neuropathy > Ideas for pain relief from Small Fiber Neuropathy (SFN)
-- https://connect.mayoclinic.org/discussion/ideas-for-pain-from-small-fiber-neuropathy/
Hoping you find some relief for your pain. It's good to learn as much as you can about your condition.
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2 Reactions@harley22 Hi Marilyn, The description of what you go through is so hard on the soul. I ache for you and I. Toes being pulled by pliers, really got me, because my toes are regularly pulled by pliers. What a perfect description. I want you to know about Kratom. Kratom is a product that comes from SE Asian tree leaves. It is ground into a powder, and added to water. You take about two or three teaspoons, to about 3 ounces of water, and chug it down Take pain away. Please. If you want to know more about it, let me know. It is relaxing without a high, and takes away pain very well. I think there is nothing that works better for that. I have to go for now, but please, get back to me. Meeting a friend for lunch. Lori Renee
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1 ReactionI'm sorry, it's Small Fiber Neuropathy.
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1 ReactionThanks for helping John.
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2 Reactions@harley22 Hmm. I seem to remember the neurologist mentioning the demyelinating. I'd forgotten about that. I will ask him about it when I see him again.
Numbness is something that never goes away for me. I don't feel any sensation of temperature or pain. I feel the cold tile floor with my heels, but not with the rest of my feet. In the shower, I don't feel it when the really hot water is hitting the tops of my feet. I had a leg muscle puncture test. They poke a large needle in four places, the first one in the thigh, and downward from there. With the needle in, I had to flex that muscle. That was really painful. Until the last one which was on the top of my foot just above my toes. I didn't feel that one at all, and asked the tech if he had done it. It's a bit scary not to feel pain. For that reason I never go barefoot. It's weird though, that the same areas are very painful from the nerves. I'm not diabetic so amputation doesn't worry me, although there are many times when I wish I could cut off my feet to stop the pain. The non stop pain factor is something that drags me down.
I'm glad that my wife and I made the commitment to love and be faithful to each other in sickness and in health in our wedding vows 47 years ago. Our spouses have to put up with more than they expected when we made those vows when we were young and healthy, and yes, naive. My wife doesn't understand everything about what goes on in my head because she's never had the same experience that I have, and I wouldn't wish it on her. I also agree with you, Marilyn, that having illnesses that aren't visible presents its own set of challenges, both at home and out in public.
Jim
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