depression

Posted by jjheying @jjheying, Mar 8, 2021

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.
Jenn

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@lacy2

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.

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Thank you for listening to me.
This site has helped. And recently learned Mayo Clinic accepted my referral. Excited to see what they say. Not expecting a cure, thats for sure. Just not feel my skin burning or sooooo cold. I would like some form of normalcy. Sometimes I wish I could take this body off and put on a new one.
I am 46 going on 47 and would like to be able to enjoy the 50's. Be able to work and not be a burden on my husband.
My husband is a bit older than me. He is 61. I feel bad because he thinks he cant retire because I cant work and need to switch jobs. This disease have changed my path and where I, well we thought we would be heading.
Thank you again for listening.
Jenn

REPLY

Jim thank you for responding .. I with the best outcome for you.

I just typed and deleted a mini life history because it just sounded like whining. Had I had a stable background with family and friends around I think it would have helped. I have husband and 2 adult daughters now but over the yeas since i came to Canada at 18, abusive first marriage, etc. . I have faced many challenges alone, many. But the last 3 years have been the worst with in one year 4 (2018) of my very6 few friends died, my brother in uk died year before and i could not go to funeral .. nor funerals of mum and dad before that; diagnosis of narrow angle glaucoma and coming off zoloft after 15 years;

C.diff and resulting fecal incontinence so unable to travel to continue seeing super specialist.... almost constant tinnitus and ear pain cant do anything about; taken off Kolanapin?/Rivotril after 15 years and no help and finally back on for sleeping etc. etc etc. I could go on and on....

am not alone in my challenges I know but I have finally run out of steam. After the c.diff and no outside help I became so tired , isolated, i couldn't get out, or didn't want to get out, of bed; totally exhausted and since then have spent 90 per cent of time in my bedroom... then covid, then husband's open heart surgery out of town and the 3 weeks he was away i was forced to get up and look after house and dog and i did pretty well; he was ill when came home and had hemothorax, etc. and i fought to stay strong but gradually with my PN turning into internal shaking (out of town neurologist doing a computer appointment tomorrow) I have felt so very bad past few months.. its daily, nightly; cant see the shaking but its like someone is shaking me hard but nothing shows on outside, fecal incontinencne and other issues continue of course.

i know i am not alone in my health issues and they could be worse but I have always felt quality vs quantity and at 77 unless there is a miracle .... well, enough is enough. I have radiation damage to pelvis and lots of uti's but antibiotics cause terrible diarrhea all night long, on top of my ibs-d... i am scared to take many meds as i always get side effects and i cant face much more... however i do have an hour or so here and there when things settle down and confidence comes back only to be dashed against the rocks again.

now going through tooth extractions and slivers of bone having to be taken out of gum after....not sure what happened there, but another tooth out this week and MAYBE my internal tremors are from the lidocaine/epinephrine etc. so am hoping neurologist can tell me.... i feel weak, unappreciative of life, and an all around pain in the butt. and although 3 family members i still feel so ALONE ... just don't want to feel this way any more you see.

Now look at this. i typed and deleted my long moaning email, only to replace it with another long moaning one... sorry!

REPLY
@jjheying

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.
Jenn

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Hi @jjheying I can understand how you feel about vitamins, supplements, and medication. It can be overwhelming and confusing to find what is best for you. I went through a similar path. Through trial error I tried some of the supplements other members suggested. I did not find any relief. What works for some may not work for others. I have learned to look up the food sources for the vitamins and supplements mentioned before doing a trial. I found those foods to be part of my diet so no wonder there was no difference. Before deciding to take anything, you should also consider the diet and lifestyle of the person recommending the vitamins, supplements, or medications. I have had neuropathy for 4 years now. It resulted from my last surgical repair of my AVM in my cerebellum. I do not take any medications. I was very active prior. What I found to work best for me is a diet low in carbohydrates and lots of exercise. I recently purchased a manual treadmill and will start this week. Because of my balance issues I am very limited with the exercise equipment I select. I hope this helps you to find your solution. Don’t be afraid to try the basics first. Toni

REPLY
@lacy2

Jim thank you for responding .. I with the best outcome for you.

I just typed and deleted a mini life history because it just sounded like whining. Had I had a stable background with family and friends around I think it would have helped. I have husband and 2 adult daughters now but over the yeas since i came to Canada at 18, abusive first marriage, etc. . I have faced many challenges alone, many. But the last 3 years have been the worst with in one year 4 (2018) of my very6 few friends died, my brother in uk died year before and i could not go to funeral .. nor funerals of mum and dad before that; diagnosis of narrow angle glaucoma and coming off zoloft after 15 years;

C.diff and resulting fecal incontinence so unable to travel to continue seeing super specialist.... almost constant tinnitus and ear pain cant do anything about; taken off Kolanapin?/Rivotril after 15 years and no help and finally back on for sleeping etc. etc etc. I could go on and on....

am not alone in my challenges I know but I have finally run out of steam. After the c.diff and no outside help I became so tired , isolated, i couldn't get out, or didn't want to get out, of bed; totally exhausted and since then have spent 90 per cent of time in my bedroom... then covid, then husband's open heart surgery out of town and the 3 weeks he was away i was forced to get up and look after house and dog and i did pretty well; he was ill when came home and had hemothorax, etc. and i fought to stay strong but gradually with my PN turning into internal shaking (out of town neurologist doing a computer appointment tomorrow) I have felt so very bad past few months.. its daily, nightly; cant see the shaking but its like someone is shaking me hard but nothing shows on outside, fecal incontinencne and other issues continue of course.

i know i am not alone in my health issues and they could be worse but I have always felt quality vs quantity and at 77 unless there is a miracle .... well, enough is enough. I have radiation damage to pelvis and lots of uti's but antibiotics cause terrible diarrhea all night long, on top of my ibs-d... i am scared to take many meds as i always get side effects and i cant face much more... however i do have an hour or so here and there when things settle down and confidence comes back only to be dashed against the rocks again.

now going through tooth extractions and slivers of bone having to be taken out of gum after....not sure what happened there, but another tooth out this week and MAYBE my internal tremors are from the lidocaine/epinephrine etc. so am hoping neurologist can tell me.... i feel weak, unappreciative of life, and an all around pain in the butt. and although 3 family members i still feel so ALONE ... just don't want to feel this way any more you see.

Now look at this. i typed and deleted my long moaning email, only to replace it with another long moaning one... sorry!

Jump to this post

I came to this site to whine and moan. Here I feel that others understand and dont find that we are whining or moaning. So MOAN away.
Jenn

REPLY
@jjheying

I came to this site to whine and moan. Here I feel that others understand and dont find that we are whining or moaning. So MOAN away.
Jenn

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oh thanks: after talking about my issues - and you all have probably heard this one before; some would say 'WOULD YOU LIKE A LITTLE CHEESE WITH THAT WHINE?"

REPLY

Research kratom! Works for me!

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