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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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I do use marijuana. That is the only way for me to get real relief. It's really odd because for an hour or so, my joints and that type of issue hurts worse. BUT!!! the relief I get where my feet stop sweating and freezing while in pain, get red and warm and in pain. ha ha. That is the best it gets. By Counselor, are you meaning like psychiatrist? My PCP just said that she cannot work on anxiety due to the other meds for pain. It sounds like that is a route I may have to go.
Thank you for all of your help and support!!!
Thank you,
T
I wonder if my waking up in total bodywide sweats is akin to your feet. I get hot/cold almost within the same 60 seconds. I have that burning all the way up from my feet to my waist. I also have tingling and the weird almost electrical shock feeling, worse in my right hip.
I don’t say a psychiatrist , but a knowledgeable counselor who can help you sort out the steps. You need to establish a way to get disability; talk with people who know the way to make it happen. There are things we never hear that are well known to those people on the inside
I am not sure I understand about MJ, I really need to learn about it and what it will do. Also, my lungs are shot, so I cannot smoke, need chewies.
Gen
Yeah I sweat all of the time so I never thought much about it, but I have woken up all sweaty too. What's odd for me is that it's normally my head sweating the most. Yeah electric shock is how I would describe those sudden pains too. I get them in random areas. I will also wake up and that particular day, my left foot for instance the other day and I could swear I must have kicked the bed post or something in the night. I know I didn't, but all day it feels like I have a broken toe or two. The next day nothing. Odd.
Yeah I know what you mean. I like and am more used to smoking, but I cough way too much. I smoked cigarettes for 35 years. I just have not found edibles I like, but as powerful as it is nowadays, you may find that is all you can stand anyway. Small amounts. 😉 I never liked smoking too much or like after a weekend party or something, that would be all I wanted for a while. Now, I cannot imagine getting through a day.
Yeah I am now starting to work on getting an attorney that specializes or has knowledge in the disability area. Yeah if I have to stop smoking for 2 or 3 months, I don't know if I can so I can get hired. I am going to try Myofascial Release since a number of people say that helps. I am not convinced as massage and similar didn't work in the years before I was diagnosed. We shall see.
Yeah MJ helps me but take it slow I guess as with anything.
It’s a trip to go to the nearest MJ store, so I’ll go on Thursday. Yes, my head sweats, I wake up and my head is absolutely soaked, hair could’ve been run under a faucet. So, you are so much the same, electric shock feelings and all, moving pains.
I had crazy thyroid readings and doing a follow up blood test for that. Thyroid produces crazy symptoms, what about you? Do you have a thyroid problem? Maybe get that checked?
Attorney might help. Good luck!
I think I’ll do research on sweating. So…stay tuned!
Gen
PS: I’ve been thinking about going to Mayo in Rochester, Mn. I was there once and was very impressed with them. But they have likely changed. If you go and I go, maybe we can talk them into doing a special study. However, since I am old, I’m having big trouble. I almost collapsed yesterday, couldn’t breathe very well. I am getting worse, so maybe travel is off the table of my future life.
Gen
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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1 ReactionI wouldn’t be afraid of the disability application process. If you have ALL your medical records, just be prepared to spend a long time in front of the computer working on the government application. There are areas to describe your physical changes. You’ve done a great job describing them on this forum. If they need more information, they will contact you. You will also get periodic updates. Be prepared to input exact dates! The more info you give up front, the better your responses.
I applied BY ACCIDENT. I was applying to get my SS benefits at age 62. The line of questioning led me to the disability application. I was approved on the first try. In addition to the disability payments, I also was able to get Medicare early, which is a blessing.
Have a friend help you with it if needed. But you won’t know until you try.
The disability money is yours. You have been paying into it, and it sounds like your illness would certainly affect your ability to keep working.
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3 ReactionsYes, 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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4 ReactionsThey 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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1 ReactionMan 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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