Member Neuropathy Journey Stories: What's Yours?

So 2 years ago I had tingling burning down the right side of my body. 2 weeks prior I had gotten a tetanus shot, arm got unusually red and painful. Kind of weird. Went to ER, they did tests and found nothing. Symptoms subsided. In April of this year my eye started twitching for 3 days. I started getting tingling burning sensations in right arm. I feel differently everyday now. Sometimes my face tingles and then goes away. Both arms and feet now feel tingly, numb-like. I try to keep busy during the day to keep
my mind off things, it is hard sleeping at times. Had brain, spinal cord MRI and came out normal. EMG tests showed mild tunnel carpal bilaterally and I am absent in reflexes in both feet. I had a punch skin biopsy last week and waiting to get results. Neurologist thinks it might be SFN. I’m scared and doing as much research as I can. My husband supports me fairly well. My 2 teenagers not at all. They don’t like hearing about my issues. It’s like you need to talk about this invisible thing happening to you. I’m starting a new job in 2 weeks. Will I be able to keep this job? Will things get worse? I have an appointment with my neurologist on the 16th of sept to discuss everything. I thank you for sharing your stories and will be praying for all of you.

Chris I agree with you absolutely. Connect is a most wonderful tool for those dealing with or simply trying to understand PN. The great thing is that it is so well organized and it is fairly easy to search around for things. OK, so in reading your saga it sounds like (correct me if I missed it) there is no one known precursor to your developing neuropathy? Strange how so many people do not know what caused it for them. I suppose for some it might be hereditary. I am glad you are finding help from THC. Hank

Good morning "@jesfactsmon". I am reviewing this morning and looking for my boo-boos. I see that I didn't answer your question about what might be responsible for my neuropathy. First of all, I don't have diabetes and haven't had chemo. No one in my family complained of anything like neuropathy. My Dad was one of 9 and had a twin. It didn't show up there. My Mom was an only child within another family of 9 on her mother's side.

So.....my theory is that my prior sports accidents and 13 orthopedic surgeries, accumulated enough memories in my body that they would be embarrassed to be called idiopathic. So....there you go...I don't think there is any way those orthopedic surgeries on all my major peripheral appendages plus the head and neck injuries could have left me free of neuropathic pain. Knowledge is power. Have a great day.

Chris

Good morning "@jesfactsmon". I am reviewing this morning and looking for my boo-boos. I see that I didn't answer your question about what might be responsible for my neuropathy. First of all, I don't have diabetes and haven't had chemo. No one in my family complained of anything like neuropathy. My Dad was one of 9 and had a twin. It didn't show up there. My Mom was an only child within another family of 9 on her mother's side.

So.....my theory is that my prior sports accidents and 13 orthopedic surgeries, accumulated enough memories in my body that they would be embarrassed to be called idiopathic. So....there you go...I don't think there is any way those orthopedic surgeries on all my major peripheral appendages plus the head and neck injuries could have left me free of neuropathic pain. Knowledge is power. Have a great day.

Chris

Good morning "@jesfactsmon". I am reviewing this morning and looking for my boo-boos. I see that I didn't answer your question about what might be responsible for my neuropathy. First of all, I don't have diabetes and haven't had chemo. No one in my family complained of anything like neuropathy. My Dad was one of 9 and had a twin. It didn't show up there. My Mom was an only child within another family of 9 on her mother's side.

So.....my theory is that my prior sports accidents and 13 orthopedic surgeries, accumulated enough memories in my body that they would be embarrassed to be called idiopathic. So....there you go...I don't think there is any way those orthopedic surgeries on all my major peripheral appendages plus the head and neck injuries could have left me free of neuropathic pain. Knowledge is power. Have a great day.

Chris

Hi Chris, I'm just hurting reading about your injuries, surgeries, etc. EEEOUCH!!!!!!!!!!!!!!! I've had a lot of injuries too and do believe they are responsible for some of my spine pathology/neuropathy. I wish the best for you: the absence of pain! Warmest regards, Sunnyflower

@lorirenee1 @jesfactsmon

Tears. I feel the emotions, but I didn't shed any tears from the time, at around age 8?, when Dad said to me, "Big boys don't cry.", until I was 55, and self-admitted in a safe house after several suicide attempts. I don't know what triggered the tears, but once they started, I couldn't stop.

I'm kind of back to the "bbdc" mentality, and sometimes I envy the ability some people have to speak the language of tears. It's a foreign language for me. At times, a few of them flow during intense therapy sessions, and I do experience the emotions behind the tears.

Safety. Another big deal for me. I feel safe in this Connect group, to say things I probably wouldn't say in a face to face group setting. I cringe sometimes, after writing for the hundredth time about how much my feet hurt, when many in the group would be thrilled if that was the extent of their pain. In real life, I avoid saying anything about my level of pain. I think of the boy who cried wolf.

Pain isn't limited to what our bodies are telling us. Mental, emotional pain - depression and all of its siblings - is every bit as real, every bit as debilitating as neuropathy, migraines, bursitis, strokes...the list goes on. I think that there are a lot of us here who have pain at multiple levels. For men, the old "bbdc" mindset carries over to our false thinking about being stoical about the different types of pain. We buy into the hyper self sufficiency, pull yourself up by your own bootstraps, get over it, wear whatever mask the situation calls for. Don't be vulnerable. Keep those secrets.

This isn't a sermon. It's how I survived for decades, until it didn't work anymore. Guilt and shame and fear, feeling like a fraud. It can become more of a load than we can carry. Too many rocks in my backpack. I reached a breaking point, a realization that either I opened up and talked to someone or I couldn't go on living. Depression, anxiety, PTSD, a too-full backpack pushed me over the edge.

It was a very dark place and time for several years, but by God's grace and with the help of some really good therapists, I found my way back to a better place. Then I discovered the joy of pn. But that's another chapter for another late night's ramble. Finding Mayo Connect made the next chapter a lot less lonely for me. I don't know if you all realize what a vital role you play in making survival possible, giving a sense of hope, and being listener/cheerleader to someone who might be ready to chuck it. This is community.

Love you all.

Jim

@sunnyflower, thank you for your warm greeting and good wishes. Does that include coming to chase my pain away? I have offered to exchange two hours of numbness from @johnbishop for one hour of my body on a normal pain day. He runs away. I think I would too.

Sometimes I wake up and my brain is saying "don't bother getting up......you can't do anything anyway". That's all it takes and I respond "No, not me.....I have to keep going and feeling and enjoying every minute I can." And so I jump (more like a crawl) out of bed and begin the chore of getting my body and its medications ready for the day. And you, my dear @sunnyflower are just one reason for getting up and getting going and engaging by exchanging good wishes.

Stay in touch......I am here for you.
Chris

@artscaping one of my favorite meetings of the Minnesota Neuropathy Association before if disbanded was the 20 year celebration of the association. Notes from my favorite speaker an 80 year old Neurologist from the University of Minnesota, Dr. William Kennedy on idiopathic diagnosis 😂🤣

Dr. William Kennedy – “Simple inventions that quantify touch on finger, vibration on toes and sweating in neuropathy”
My favorite speaker of the day. All of the speakers had a Q & A after their talk and one of the burning questions of the day was how many people are affected by neuropathy in the U.S. and around the world. Pam and Dr. Walk had both said they thought the numbers were around 20 million in the U.S. and up to 128 million in China. Dr. Kennedy said he would take exception with his younger counterparts and said it’s more like 100% if you live long enough. Since there was some discussion of idiopathic PN, Dr. Kennedy asked if we knew how
the diagnosis is made for idiopathic. Got my best laugh of the day when he told us it got the name from the idiot neurologist who diagnosed it. Dr. Kennedy went on to talk about his research work on developing a tool he would like to make available in every GPs office to easily test for neuropathy. More information can be found on his website: http://kennedylab.med.umn.edu/

Good morning "@jesfactsmon". I am reviewing this morning and looking for my boo-boos. I see that I didn't answer your question about what might be responsible for my neuropathy. First of all, I don't have diabetes and haven't had chemo. No one in my family complained of anything like neuropathy. My Dad was one of 9 and had a twin. It didn't show up there. My Mom was an only child within another family of 9 on her mother's side.

So.....my theory is that my prior sports accidents and 13 orthopedic surgeries, accumulated enough memories in my body that they would be embarrassed to be called idiopathic. So....there you go...I don't think there is any way those orthopedic surgeries on all my major peripheral appendages plus the head and neck injuries could have left me free of neuropathic pain. Knowledge is power. Have a great day.

Chris