Dose anyone else feel like neuropathy is taking over their life?
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?
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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. 🙁
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.
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.
Thanks for writing and wishing me well. I hope things turn out for you.
Gen
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.
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
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.
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.
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
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!!! 🙂