I have been dealing neuropathy for almost 6 years now. My symptoms were mild for 1 year. I could tolerate it. I feel that I am back to square 1.
Some of my background. The neurologist and Drs I have seen have not given me a definite diagnosis. I say I have autonomic neuropathy. 24 years ago I was diagnosed with Non Hodgkins Lymphoma and have been in remission for 22yrs. I have numbness, burning, tingling and at times extreme cold on JUST the right side of my body. Starting from head all the way down to my foot. I had the gastric sleeve done, hoping losing weight would help. I was on Gabapentin then switched to Lyrica and now back on Gabapentin 900mg 4 times a day.
I also take Lortab, Lorazepam and Sertraline. My symptoms have been getting worse over the past yr and 1/2. I have had syncopal episodes (seems to happen when my nerves are extremely pinched or extreme pain), rashes, extreme arthritis and constant headaches. Again ALL on my right side.
I want out of this body. I hate that I look fine but I am dying inside. I cry more now. I hate not being normal. Being able to live without pain, being exhausted, having a foggy brain. I feel at the end of my rope.
How does everyone get up in the morning? How do you work a full time job? How do I continue working as a nurse. I feel like I am letting every down. I am depressed all the time.
I need someone to understand how it feels.
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Hello Jenn. I have a glimpse as to how you are feeling. As many here have other issues ,cancer survivor, c.diff, glaucoma narrow angles, anxiety, tinnitus and extreme ear pain, and abusive first marriage and raising kids on low income .. and now a senior with strong internal shakes and have spent most of last few years in my bedroom: not looking for sympathy, but like you I don't know how I did it and now as a Senior, how I am going to get through it in future. I am so thankful I found this site because is is a mix of many ages and backgrounds and illnesses past present and coping with, survived, having issues with…. I feel for you because I too feel like I am dying inside or at least being poisoned…. I hear you and so will many others and hopefully get some needed understanding from other posters.. I feel I am a drain on my spouse and our household is not the same and I feel wont be again… I do have a mental health therapist phoning me once a month due to out of town and covid but I feel I need more than a monthly chat…. and conversing on here and giving and receiving advice has helped…. I dont know what else to say except my thoughts are with you ….. hugs, J.
@jjheying Hello, Jenn. My goodness, you and your body are at war. There are many folks on these Connect sites who truly understand your feelings, your symptoms and pains and questions. You are talking with folks who have been or are in your place, had your feelings, felt lost and alone. I'm one.
Have you had the opportunity to go to a major teaching hospital or university? A major medical center like Cleveland Clinic or Johns Hopkins or Mayo Clinic? Do you think it would help for you to have a comprehensive work-up with different specialists…..beginning with neurology and moving on where the testing guides you? I am one who lived for many years suffering with a bunch of crazy symptoms. I was a very confusing patient, which naturally made life quite difficult. For me and for the poor docs who were stumped by my complaints. I needed answers.
So, I eventually called Mayo Clinic and asked for help. My word! Have I gotten help. I've seen multiple doctors and you know, these wonderful docs and other medical folks are finding reasons for the issues with which I've lived all these years. Reasons, answers, diagnoses, and finally treatments that are helping me out of depression, relieving anxiety, getting me off medications that were causing some of the problems, finding solutions and meds/treatment/therapy that help relieve my personal hell.
Well, Jenn, that's a bit of my input. Any ideas?
Blessings to you on this journey. Many of us are walking with you, and determined to fight to be better, to understand and live in some peace with our bodies. Let me know what you think, ok?
I know exactly how you feel I have the same problem! I’m so depressed from pain I don’t want to love anymore! It’s nothing but suffering try to get through the day!!!! Yeah wish I had a answer for! Just try to put one in front of the the other! Tak it one day at a time!!!!! I’ll pay for you🙏🏼
Very well put, true statement for many of us here. hope you feel better soon
I would love to come to the Mayo Clinic but I live in Fairhope, Al and I can’t afford to come way down there.
@jjheying I'm glad you took the initiative and started this conversation. When I was diagnosed with depression (and anxiety and PTSD and OCD) back in 2003, the doctor said I had almost certainly been living with these things for a long time, but just worked around them.
Beginning in 2001, I started feeling off, and in '04-'05, I made several suicide attempts, which not even my wife knew about. I self-admitted to a new, nice safe house that's run by the hospital nearby. I stayed for six weeks, though the average stay is 3 days, because I knew that I would commit suicide at my first chance if I left any sooner.
That was at the end of 2005, and I still see a therapist weekly, now via telemed, which is like Skype. Thanks to some good therapists and medications and doctors, those mental health challenges are held at bay. But too much of the time, I feel like I'm walking on ice, and can look down and see the roiling river of depression et al.
Idiopathic small fiber peripheral polyneuropathy and autonomic neuropathy entered my life around ten years ago, and my life was changed. Pain in my feet and ankles has a direct impact on the stuff going on in my head. For the 5 years after my stay at Sage View, it was really hard to believe what people told me – that it WILL get better. I was in a dark hole with no sign of light. But the day came when suicide wasn't at the front of my thoughts. I was able to say that I would stay alive for more than a week, and now that promise to myself can stretch out for the number of months until we see our granddaughters.
I know that depression and anxiety and PTSD are still issues, but I'm not overwhelmed by them. Meds, therapy, family, faith and my hyper-attentive service dog, Sadie, work together to keep them under control. But the pain of the clear memories of the dark hole of depression is never far away. I've reconciled to knowing that some things will very likely be with me the rest of my life. I think that helps to take some of the sting out.
Well, it's later than I think, thanks to daylight savings time, so I have to stop writing and put my Bipap mask on and go to sleep. I have faith that you will find strength to face life a day at a time.
Jim , empathize with what you went through . There is an old saying: I wish you what you wish yourself. My bedroom night table has a vial with 100 sleeping pills in that I took from my husband's meds over a year ago. My phone-social worker/therapist knows and suggests I have someone lock them up type thing, but to me they are a safety blanket of sorts. I have a lot of medical issues and have spent majority of time in my bedroom, in or on bed, tv, ipad, husband retired…brings me coffee/toast etc and we both muddle through getting meals…both have had radiation to pelvic and diarrhea so cannot get takeout greasy spicy foods etc. Two adult children live a few blocks away but don't see them that often, but know they are near if needed. I have said before that I am not scared of dying (well, I mean… if we could all live forever and feel good, would be a different story!) but I am scared of suffering and as time goes on my laundry list of problems gets longer and now the peripheral neuropathy is internal tremors and ear issues and numbness right side of face, although they say its not numb…probably inside nerves; what the bottom line is… I don't want to wake up one day unable to see, unable to walk and so on and my heart goes out to those who live with worse illnesses than I… but I have my limits and with fecal incontinence "who" is going to clean me up , up to ten times a day?
There is no way I will get better and allergic to so many meds and anxiety… I am not dramatic about it, but just want to slip softly and peacefully into the night. Yes I do have occasional hours not so bad and I am uplifted only to come crashing down… yes I feel sorry for myself but I do feel although terribly missed by my small family, and I hope , they would feel some happiness for me that I am not leading this life any more. I am not happy but have not lost my sense of humour … but this crying a lot during the day is not helping. Husband just had open heart surgery, he doesn't need my bemoaning! To all those, like you, who persevere I congratulate and admire you! 💙
@lacy2 My medications are all lined up in my medicine cabinet, and every night I set out my morning, midday and bedtime pills. From the left, there are 4 that are for the next morning, one for morning and midday, 3 that are morning and bedtime, and the last 4 are for bedtime.
Nearly every night, after I dole out the pills, I consciously close the door and acknowledge that I have gone one more day without taking more pills than I'm prescribed. I have enough pills to OD a dozen people, antidepressants, anxiety medications, pain meds…any one of them I have in sufficient quantities to do the job. My wife trusts that I won't, but she's given a lot of thought to what she'd do if I die prematurely. I carry guilt for having turned her world upside down.
I've never been emotional, but I often have the sensation of crying inside, mostly in the night.
Time to wash the dishes. I pray that each day you will have the strength for that day.
I too have an abundant amount of medication. Every time I hear about a new vitamin or pill that would alleviate the pain, I cringe at the thought of adding to the pile.
I am thankful (but not wishing this on anyone) that there are others who can relate. I feel crazy. I question is this in my head? Is it real? No one else can see it, so I must be making it up for sympathy.
Knowing there are others out there that have the same pain does give me strength. Plus Mayo just accepted my referral. Hoping to get my Neuropathy at least to a tolerable state.
I have read that most of you work with therapists. Is this something that you would recommend?