1. < Neuropathy

Dose anyone else feel like neuropathy is taking over their life?

Posted by annregister @annregister, Apr 11, 2023

I am in search of others that are in the same pain as I am. I feel like that the neuropathy has taken over my life. I have finally been diagnosed after four years, with axonal sensorimotor polyneuropathy and small fiber neuropathy. I also have Raynaud’s. Sometimes I feel like, because there’s no boo-boo or Band-Aid that people can see, others do not understand the every day every night pain that I am in. I am a first grade teacher, I love to draw I love to paint I love to be in the garden, I have a new grandbaby …. However, I can’t stand for long periods of time. I’m no longer able to drive, because of the no-feeling in my hands and feet. I can’t even hold a pencil for a long period of time, because my hands go numb and then I drop the pencil. I walk with assistance, for fear of falling, because of no longer feeling my feet. I have tried all of the go to medication‘s that my neurologist has suggested, however none have worked. Gabapentin; the worst of them all, has taken my ability to think as quickly as I need to, to be an affective first grade teacher. I am not able to process or communicate as well as I should be able to. Lyrica; was another medication that gave me dark thoughts. And, on top of those medication’s, my body does not handle narcotics very well, so I just deal with the pain day in and day out. I am just at a loss. Is anyone else out there that feels the same as me?

Interested in more discussions like this? Go to the Neuropathy Support Group.

nanuk2386 | @nanuk2386 | Apr 19, 2023
In reply to @dbeshears1 "I contacted an attorney because it seemed everyone believed everyone is denied unless they hire one...." + (show)
@dbeshears1

I contacted an attorney because it seemed everyone believed everyone is denied unless they hire one. The nice older attorney said “Honey, you need to apply for it first, it’s free to do that. If you have a disability, there’s no problem getting it on your own. If they reject your claim, then call me, and I’ll see if I can help you. I don’t want to take money from you that’s rightfully yours!” I was surprised he didn’t want to take my money up front! I applied and got it approved with no issues, I gave Social Security permission to get medical records themselves, and that helped me do less paperwork. I realize there no doubt have been people who have abused the program which has made the application process more intimidating, but if your illness qualifies, please don’t feel like you shouldn’t apply. The amount of disability is so tiny compared to what we earning when we were able to work, but it helps us with our lost income.

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Thank you for that encouragement. The good thing for me on the attorney front. My brother is an attorney and he is looking into it. I imagine I will get that same type answer. I may look for other type assistance with this, but that sounds promising. My doctor had told me this wouldn't in itself qualify. That has me pretty worried but I'll see. I am only 56 so I don't want to have to but I wouldn't hire me. 🙁

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1 reply
Debbie | @dbeshears1 | Apr 19, 2023
In reply to @nanuk2386 "Thank you for that encouragement. The good thing for me on the attorney front. My brother..." + (show)
@nanuk2386

Thank you for that encouragement. The good thing for me on the attorney front. My brother is an attorney and he is looking into it. I imagine I will get that same type answer. I may look for other type assistance with this, but that sounds promising. My doctor had told me this wouldn't in itself qualify. That has me pretty worried but I'll see. I am only 56 so I don't want to have to but I wouldn't hire me. 🙁

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I understand - I was 51/52 with hopes of working 10 more years. I was a finance manager/CPA, needed to be able to work computers and numbers, but lost my hand capability to type correctly. Simple things like walking to meetings and carrying my computer and folders etc, I’d need assistance. Like you say, I wouldn’t be able to perform and get the required about of productivity and would cost them a lot to make accommodations. One able person could do six times what I can. I get it. At least Disability helps.

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erichendrix | @erichendrix | Apr 19, 2023

This is war. I am a warrior. I must fight now. Playtime is over. I must steel myself to do battle with neuropathy. I may not win the physical war with it, but I can do my best to achieve victory in the psychological war. I will not roll over and die. I will not go quietly into that Good Night. This thing might be bigger and stronger than me, but by God I'll get a few licks in, somehow. Researching.

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5 replies
gvkmnj | @gvkmnj | Apr 19, 2023
In reply to @nanuk2386 "Man I am sorry to hear that! Yeah I get an occasional odd issue where I..." + (show)
@nanuk2386

Man I am sorry to hear that! Yeah I get an occasional odd issue where I just cannot eat. Feel all bloated. I seem to work normally but really uncomfortable. Actually spent money going to an ER once. I have really crazy heart rate at times too, but I am thinking that is due to anxiety.
I may or may not go to Mayo. I don't think I can afford it. I am not sure I will find anything that helps much more either. Well good luck and I hope you get another good wind for a long time. 😉

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Thanks for writing and wishing me well. I hope things turn out for you.
Gen

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Debbie | @dbeshears1 | Apr 20, 2023
In reply to @taa "Yes, this is all good advice. The timeframe between my first meeting with an attorney and..." + (show)
@taa

Yes, this is all good advice. The timeframe between my first meeting with an attorney and finally applying for disability was about 2 1/2 years. I was lucky to have good union benefits to bide me time until I did have to apply. Nonetheless check your resources that may be available to you, your HR dept, disability attorney, dept of social security. They all will give you the steps & info to receive your benefits if your entitled to them. julbpat is right I used an attorney thinking there would be denials & appeals in a long process, but I was approved in about a month. Bottom line it's hard to do certain jobs when health issues rob you of so much

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Great advice - I’ll add that I was slow applying for Disability also. I kept waiting because I was unable to believe this illness thing wasn’t going to run it’s course and that doctors would know what’s wrong and help fix me! When I did apply, I recall Disability actually providing retroactive payments since I applied so long after my disability start. But I think it was only the amount that fell in that calendar year, (I’m not positive how long back they paid), so I wouldn’t wait too long.

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1 reply
gvkmnj | @gvkmnj | Apr 20, 2023
In reply to @nanuk2386 "They said I don't have Thyroid issues or RA. Of course they kept trying to get..." + (show)
@nanuk2386

They said I don't have Thyroid issues or RA. Of course they kept trying to get me to keep going to the RA doc. They kept telling me it could develop. Meanwhile charging me money. I have low Vit. D all of the time and that's about it. I also tend to sit in pre-diabetic area in blood sugar. We eat pretty well, but I cannot excersize so I cannot seem to get below 6.1 A1C. That could be the cause they say, that and if not medicated, My Tryglicerides are through the roof. Once medicated, All in good range.

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There is such a thing as diabetic neuropathy. I’m not sure the A1C readings are accurate all the time. But I have low blood sugar readings all the time and hate the needle pricks for readings. I also can’t figure out how the new gadgets work out to be accurate all the time but I would rather stay away from finger pricks. Who knows what is real. I’m scheduled for thyroid tests today, they say older people have higher numbers but that’s just to say the thyroid is aging and struggling. I don’t like that they refuse to medicate thyroid based on age.

Anyway, it’s nice to talk to a fellow neuropathy warrior.

Gen

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1 reply
annregister | @annregister | Apr 20, 2023
In reply to @tessie63 "I am so sorry you feel so unwell with the neuropathy. I know this illness can..." + (show)
@tessie63

I am so sorry you feel so unwell with the neuropathy. I know this illness can make one feel so discouraged and helpless about every thing in life. I know, because I feel the same as you many times. I have neuropathy in both my hands and feet and while I am lucky not to have the pain the numbness and tingling in them is so disturbing. My feet are both dropped and with the neuropathy in them I am unable to stand or walk by myself now. I became a handicapped person overnight due to chemo.
I lost my independence and selling my car was a sad day for me. Three years later I am still dealing with the after effects of this illness. I have come to the conclusion that
nothing can cure this thing and the best we can do is to take it one day at a time and be grateful for family and friends who love and understand us. I am seventy five years old this month and nerves can take a long time to heal so time is not on my side. So just know, there are a lot of us out here who feel just like you do. In writing this, I hope it makes you you realize you are definitely not alone with all your feelings and difficulties with life.
Hang in there and write a note in this forum when you are feeling down. So many others will share their stories with you to make you feel better. Hugs
Tessie63

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Your words are so encouraging. Thank you for responding and sharing your story. It is so nice to know that others are dealing with neuropathy and share their experiences.

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SteveSH | @steveny9 | Apr 21, 2023
In reply to @erichendrix "This is war. I am a warrior. I must fight now. Playtime is over. I must..." + (show)
@erichendrix

This is war. I am a warrior. I must fight now. Playtime is over. I must steel myself to do battle with neuropathy. I may not win the physical war with it, but I can do my best to achieve victory in the psychological war. I will not roll over and die. I will not go quietly into that Good Night. This thing might be bigger and stronger than me, but by God I'll get a few licks in, somehow. Researching.

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Thank you. I needed that positive mindset today. I was and have been in the last couple of days going to a dark place. Your wisdom reset my day.

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randymor | @randymor | Apr 21, 2023

Hi I would like to know where you went to get diagnosed, I also have severe neurapathy and can't stand for long

Randy Morris 54

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Zebra | @californiazebra | Apr 21, 2023
In reply to @erichendrix "This is war. I am a warrior. I must fight now. Playtime is over. I must..." + (show)
@erichendrix

This is war. I am a warrior. I must fight now. Playtime is over. I must steel myself to do battle with neuropathy. I may not win the physical war with it, but I can do my best to achieve victory in the psychological war. I will not roll over and die. I will not go quietly into that Good Night. This thing might be bigger and stronger than me, but by God I'll get a few licks in, somehow. Researching.

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Hi @erichendrix -- I love your response!!! It really applies to all health issues or any of life's challenges! I'm going to write that down as a new favorite quote to be shared with anyone I know that is having any kind of issue. Thanks for sharing your thoughts!!! 🙂

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