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.

@bjk3

Oh dear!! It was supposed to be handle bars but Spell-Check changed it - I should have caught the mistake but didn't, so it is really a funny image. It is almost identical to the kind of scale you would step onto at the doctor's, with the platform and rails. But instead of a screen in front of you (if one is there), the screen on this looks more like a gaming device with red and blue lights and knobs and buttons that the therapist uses for your individual settings. So sorry for the confusion!! 😅

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It’s fine. Like you said it was a funny visual. What does it do?

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@lindsay208

It’s fine. Like you said it was a funny visual. What does it do?

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The platform vibrates/shakes according to what the therapist sets. For people like me, who can't walk far enough (due to imbalance from neuropathy) to maintain muscle mass in the legs, the muscles there and in your core are strengthened when you simply stand in place keeping your balance against the degree of vibration. I'm sure it is helpful for a lot of other physical strengthening situations. My therapist has only had it for about 3 months but I find I don't struggle as much to stand up from a seated position. Medicare does cover the cost.

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I am at my wits end too!! I think this has been going for a long time. It's now feeling like it's coming to an end. I cannot fathom how I can live much longer. I feel so badly all of the time. I cannot walk or stand or much of anything without so much pain. I used to walk 5 miles a day, ski, hike. I am wondering if I will be able to do my yard work anymore. That is my only exercise. I have had 11 surgeries in the past removing torn cartilage or as with my hips, I had my labrums almost completely torn away. I have had a few motorcycle wrecks that did a lot more damage than I could feel at the time. I have gone downhill really badly this past year. I feel like I have mono without fever all of the time. I wake up with my entire body numb, but I can feel it. It's like when your foot went to sleep and it's waking up. I seem to be stuck there most of the time. My neck and lower back both have arthritis as does most of my body. I am pretty sure I will not be able to fake my way through job interviews when we get laid off Sept. 1st. I take 2700 mg of Gabepentin daily. I take OxCarbazepene daily. I tried to quit taking the HUGE amounts of Ibuprophen, but I have had to go back to a muscle relaxer and Ibuprophen so I can sit at my computer and type. I have no brain left. It's not helped by self medicating, but my feet spend the entire day burning and soaking wet. That makes them get colder and colder and the pain level goes up. If I smoke, I have found my joints hurt worse for a while but my feet go from cold and wet, to hot and burning, but I can usually deal with that better. That is making my brain even more mush. I have a difficult time remembering words and I have undiagnosed OCD I believe and that is making my anxiety level up so that my heart will race at 168 bpm at times and now that I have this watch, it will also warn me that my heart rate is below 40 bpm on occasion. Just sitting watching TV most of the time. I also have to hold on to something when I stand since I can get really dizzy and then the whole right side of my face feels numb and warm. The one thing I have, I seem to have less pain at night most of the time. Except for my neck nowadays, I sleep or pass out well. I MUST sleep 8 hours or I can barely function. I am at a loss.

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Former former physical education teacher here I was suffering from CDIP and it was having a real big affect on my ability to teach I went and applied for disability and was able to receive disability benefits from both my state retirement and Social Security. I don't know about you, but I found it very difficult to keep up with the demands of teaching and deal with my condition. Eventually It led to a major battle of depression that could no longer be ignored. Check with your human resource department to see what your options are. I understand what you are going through

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@taa

Former former physical education teacher here I was suffering from CDIP and it was having a real big affect on my ability to teach I went and applied for disability and was able to receive disability benefits from both my state retirement and Social Security. I don't know about you, but I found it very difficult to keep up with the demands of teaching and deal with my condition. Eventually It led to a major battle of depression that could no longer be ignored. Check with your human resource department to see what your options are. I understand what you are going through

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I am worried that I will have to try to get disability. How did you get that? My Neurologist basically told me I probably won't qualify. It doesn't sound promising reading SSA.gov I am worried that I will be denied and I don't think there is any way I will be able to actually get another job. Working from home due to the Pandemic actually had saved me and my job for the last few years, but I am getting worse fairly quickly. At this rate, by Sept. when I get laid off, I will be in pretty bad shape. All I want to do is walk and get into shape. Last year when I started trying to walk, my feet popped a couple of times and now they are painful in two ways. I feel like my feet are failing physically and top it with extreme nerve pain.

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I would recommend setting up an appointment with a disability attorney and they will discuss your situation with you. Understand that there are a lot of factors that go into evaluating whether or not you'd be a good candidate for disability or not. (Type of work you do, other jobs that may suit you better within the company etc.) They shouldn't charge you for initial consultation as the attorney gets paid out of the settlement $. The attorney will also let you know whether or not you have a good case or not as they will not take your case unless they feel you have a good chance of winning your case, as that is how they get paid. My advice is to set up appointment with someone and take a shot. It will at least educate you on the process and you'll have an idea of what options you have

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@nanuk2386

I am at my wits end too!! I think this has been going for a long time. It's now feeling like it's coming to an end. I cannot fathom how I can live much longer. I feel so badly all of the time. I cannot walk or stand or much of anything without so much pain. I used to walk 5 miles a day, ski, hike. I am wondering if I will be able to do my yard work anymore. That is my only exercise. I have had 11 surgeries in the past removing torn cartilage or as with my hips, I had my labrums almost completely torn away. I have had a few motorcycle wrecks that did a lot more damage than I could feel at the time. I have gone downhill really badly this past year. I feel like I have mono without fever all of the time. I wake up with my entire body numb, but I can feel it. It's like when your foot went to sleep and it's waking up. I seem to be stuck there most of the time. My neck and lower back both have arthritis as does most of my body. I am pretty sure I will not be able to fake my way through job interviews when we get laid off Sept. 1st. I take 2700 mg of Gabepentin daily. I take OxCarbazepene daily. I tried to quit taking the HUGE amounts of Ibuprophen, but I have had to go back to a muscle relaxer and Ibuprophen so I can sit at my computer and type. I have no brain left. It's not helped by self medicating, but my feet spend the entire day burning and soaking wet. That makes them get colder and colder and the pain level goes up. If I smoke, I have found my joints hurt worse for a while but my feet go from cold and wet, to hot and burning, but I can usually deal with that better. That is making my brain even more mush. I have a difficult time remembering words and I have undiagnosed OCD I believe and that is making my anxiety level up so that my heart will race at 168 bpm at times and now that I have this watch, it will also warn me that my heart rate is below 40 bpm on occasion. Just sitting watching TV most of the time. I also have to hold on to something when I stand since I can get really dizzy and then the whole right side of my face feels numb and warm. The one thing I have, I seem to have less pain at night most of the time. Except for my neck nowadays, I sleep or pass out well. I MUST sleep 8 hours or I can barely function. I am at a loss.

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Gabapentin does weird things to the body. I had terrible dizzy spells and loss of balance when I took it, and I was taking only up to 300 mg/daily. Then the oxcarbazeprene has serious side effects too. I think you need to find a different doctor. I also think you need to apply for disability. See a counselor to help you through this mess too. You can’t do this alone. A counselor will help you to think clearly. I know how hard it is to sort out this —(not printable words) because I suffer from intense pains. The neuropathy is not something to play with, it gets worse, but you already know that. If you talk to social services about disability ask them about good counselors who may be able to help you sort this mess out and find help. I can’t sleep because of pain. What I suggested to you is what I’m doing myself . Except, I am retired, and good thing because I couldn’t work, I can hardly get across the room.

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So appreciate the comments and each of you sharing your individual experiences with peripheral neuropathy. I have been looking for a support group to just communicate with. So sorry to read about each of your issues with chronic pain.

My primary issues started about 2 years and 4 months ago when I had an unexpected 9 week hospital stay for a gall stone attack that ended up with 3 weeks in a medically induced coma due to necrosis, acute pancreatitis and sepsis . Several of my organs were shutting down. Doctors told my family that I would not make it but GOD has other plans ! All my muscles had atrophied and has to learn to walk talk and eat again.

When I regained consciousness I had full blown peripheral neuropathy in both my feet and on a regimen of Gabapentin. My recovery was limited mobility wise because I also was dealing with back issues (neurosurgeon diagnosed Spinal Stenosis). Had fallen twice and ended up having a
Laminectomy and Spinal Fusion from T-10 to S-1. Brutal ! Am almost a year out and still in pain and having mobility issues. Recently a Peripheral Neuropathy specialist at an unnamed major medical center who I have been seeing for almost a year now has me getting off of Gabapentin and basically has said “there is. I thing we can do for you”. In the meantime I continue in varying degrees of pain (largely lower back) and mobility issues. Don’t know whether or not to begin to prepare for being in a wheel chair again as I was when I got out of the hospital in 2021 after my 9 week stay or if I continue to try to tough it out thinking at some point I will improve mobility and pain-wise. I spend a good deal of my time in bed because it takes the pressure off my back but try to venture out to run errands and attend family functions. Feel like I can deal with anything but just really need to know what my prognosis is going forward.

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@gvkmnj

Gabapentin does weird things to the body. I had terrible dizzy spells and loss of balance when I took it, and I was taking only up to 300 mg/daily. Then the oxcarbazeprene has serious side effects too. I think you need to find a different doctor. I also think you need to apply for disability. See a counselor to help you through this mess too. You can’t do this alone. A counselor will help you to think clearly. I know how hard it is to sort out this —(not printable words) because I suffer from intense pains. The neuropathy is not something to play with, it gets worse, but you already know that. If you talk to social services about disability ask them about good counselors who may be able to help you sort this mess out and find help. I can’t sleep because of pain. What I suggested to you is what I’m doing myself . Except, I am retired, and good thing because I couldn’t work, I can hardly get across the room.

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How can you stand this pain? I was absolutely going insane from suffering before all the drugs. They don't help fully, but man. Yeah I knew that these would be rough. Just having to increase my Gabapentin was really rough so I know what you mean but... Trying to work, even though I work from home, in IT. I cannot think anymore but I also couldn't in pain. I have two bad hips, two bad shoulders, two bad elbows, and my hands and feet... I also have bad enough arthritis everywhere, including my neck and lower back, that I think this pain elevates that pain to a level I just... I cannot sit at my computer worth a damn.
I also have tried ignoring it and trying to continue to do things. MAN!!! I cannot even describe what I feel like after doing 2 or 3 hours of yard work. I have also been laid off as of Sept. 1st. If I don't or cannot continue I lose out on this bonus I was promised. I have to struggle through but there is NO WAY I can sit in job interviews and actually tell people I am ready to work for them. Yeah it's getting worse faster it seems nowadays. Maybe it's been doing this for a while, but now it's more permanant where my thighs feel week and I wake up in a painful or uncomfortable "tingle". Thankfully I sleep pretty well I guess. As soon as I wake up, my feet start to get damp and cold and this "tingle" becomes intolerable. The only way I can explain it to people is having your older brother sit on your chest holding your arms down and hitting your sternum over and over. It starts to really hurt. I know I am awake then. 🙁 I have to get up. Then the pain gets worse over the course of the day. My anxiety is now helping to cause pain I'm sure. I have applied for an appointment to Mayo. Yeah my doctor seems to be of the mind there is nothing more I can do. Other than go to one of those chiropractors that unfortunately are on the other side of the city and pay out of my pocket. I have not done that and don't expect a lot of help but... I have not wanted to admit it, but I am thinking I might have to apply for disability but my doctor said SFN doesn't qualify well. ????
I'm sorry to just talk about my pain again. Nobody understands. I will and have started trying to find something else, but I have to work and that is not leaving much energy for anything at this point.
Thank you.
T

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@nanuk2386

How can you stand this pain? I was absolutely going insane from suffering before all the drugs. They don't help fully, but man. Yeah I knew that these would be rough. Just having to increase my Gabapentin was really rough so I know what you mean but... Trying to work, even though I work from home, in IT. I cannot think anymore but I also couldn't in pain. I have two bad hips, two bad shoulders, two bad elbows, and my hands and feet... I also have bad enough arthritis everywhere, including my neck and lower back, that I think this pain elevates that pain to a level I just... I cannot sit at my computer worth a damn.
I also have tried ignoring it and trying to continue to do things. MAN!!! I cannot even describe what I feel like after doing 2 or 3 hours of yard work. I have also been laid off as of Sept. 1st. If I don't or cannot continue I lose out on this bonus I was promised. I have to struggle through but there is NO WAY I can sit in job interviews and actually tell people I am ready to work for them. Yeah it's getting worse faster it seems nowadays. Maybe it's been doing this for a while, but now it's more permanant where my thighs feel week and I wake up in a painful or uncomfortable "tingle". Thankfully I sleep pretty well I guess. As soon as I wake up, my feet start to get damp and cold and this "tingle" becomes intolerable. The only way I can explain it to people is having your older brother sit on your chest holding your arms down and hitting your sternum over and over. It starts to really hurt. I know I am awake then. 🙁 I have to get up. Then the pain gets worse over the course of the day. My anxiety is now helping to cause pain I'm sure. I have applied for an appointment to Mayo. Yeah my doctor seems to be of the mind there is nothing more I can do. Other than go to one of those chiropractors that unfortunately are on the other side of the city and pay out of my pocket. I have not done that and don't expect a lot of help but... I have not wanted to admit it, but I am thinking I might have to apply for disability but my doctor said SFN doesn't qualify well. ????
I'm sorry to just talk about my pain again. Nobody understands. I will and have started trying to find something else, but I have to work and that is not leaving much energy for anything at this point.
Thank you.
T

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I am 76 years old now, but if I was young, I’m thinking I wouldn’t be able to escape the world of pain and who knows what I might do

As it is , I am trying medical Marijauna. I suggest you might try it, and see a counselor who supports it.

There is a chronic pain forum on Facebook that I belong to. There are not a lot of severe pain forum options, and mostly support forums, but they can be depressing. Some people do find help, but it’s not easy. You might try hanging out on Facebook and check out chronic pain forums.

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