Living with Neuropathy - Welcome to the group

@tessie63
Hi,
Anything is worth a try frankly. Chia unfortunately closes the throat for me but the others may work by themselves.
As I understand it the only possible way to treat the situation is painkillers which desensitise the nerves in an attempt to stop the lock up reaction.
I think the laxatives I have been taking may have caused the muscles to get lazy over the years, which isn't helping. Fortunately I get free laxatives but have reached the max dose and I suspect they are not really working anyway.
The indication is that the autonomic polyneuropathy is very well advanced and without intervention, Christmas this year could be nothing but a dream.
Thank you for the suggestion, I will see where it leads me.
Cheers

@cheyne I’m not sure if this will help you but it’s worth a try. Along with my severe neuropathy I had trouble with constipation for years and used the Senicot everyday to help with this. One day I was on UTube and saw the Nerve Doctor talking about these seeds, black sesame seeds, hulled hemp seeds and organic chia seeds. I ordered them off Amazon from Yupik and when I got them I immediately mixed a container of these all together and kept them all in the fridge. Within a few days of using these I had a regular bowel movement and needed no more Senicot. These bags last a while but I keep them refrigerated. I mix about two heaping tablespoons with my cereal in the morning. For, me this has done wonders for my bowels and I only wish I knew about this years ago. There is a product on the store shelves called Holy Crap and I tried this first but it is just so expensive so I have been getting the seeds off Amazon and putting my own together. If this helps anyone I will be so happy I shared this with you.

@cheyne I am praying that this works for you. I’m able to combine the seeds together and put them in my cereal. Please keep in touch and tell me if it works. Even if you could only use the black sesame seeds that might help. Best of luck!

@SusanEllen66
I am wondering what new things you are learning and what hobbies you have found. I believe our brains have lots to do with how we process pain. My neuropathy was and is for the most part, not so challenging. But the shin shave biopsy must have damaged some tiny nerves and my leg still does not feel the same 6 months later. I want to believe my neurologist who says my prognosis for healing is "good." Still, I am impatient and want to heal sooner rather than later. The new things I am learning include being more body aware and to be more mindful of how environment and foods affect me. I am trying not to dwell on what was my "wrong turn". Have doctors given you a way of practicing balance? It is important. Wishing you well.

@SusanEllen66
Hi,
Don't be sorry, I have never bothered to wonder why me. It is what it is I have to find ways to deal with it. I'm 74 and had an awful time 3 years ago teaching myself to walk again. I kept falling with always the left leg not getting the instruction to move and yet the brain knew it sent the message so ordered the right leg to move. This caused the body to tumble as it got ahead of the feet. With intense concentration I have been able to reprogram the brain to check before stepping, thus almost eliminating falls. It has become instinctive now.
Concentration seems to be the key for me. Every time I rely on the automatic movements they tend to fail me.
FND doesn't send the signal and autonomic polyneuropathy dosen't carry out the signal in return it can send back faulty information to the brain so any correction can be wrong as well.
These two nasties are playing havock with my diabetes sending me to the door of diabetic comas when they jamb up the digestion. It also interferes with my blood pressure. In fact they are so invasive they affect many different aspects of the body. I struggle to remember which one does what and to be honest I don't really care which does what, I'm just along for the ride.
I have been using AI to sift through data I have collected and it is helping with my revewing my history to pin point when all this started. I has been mind boggling that so much has been there for many many years and I have carried on ingnorant of what has been causing the problems I have and do have.
It creates havock with medication, memory, my ability to spell words, hit the correct keys. My brain runs at max speed always and the fingers can't keep up. I'm in a race to find a work around, if at all possible. I won't let this failure beat me but know it will eventually. Unless something changes soon I'm finding it hard to believe I will see next Xmas. Looking back this has been going on for over 30 years that I can trace it back. As I understand it presently the only likely help is something like Gabapentin which basically sedates the nerve sensors which might just release the stomach muscles to work food through. As a result of doing this it will kill off and other 15 % of my already depleted kidney function. It is time to mittigate some of my health issues and focus on a stay of execution. How adament am I that I want to continue living this way is the big question. Short and sweet seems to be a better option but that eliminates any future possiblities that may come along.
I have had one slice of bread today and 3 half cups of tea. This evening I had a very small pork steak and 4 brussel sprouts knowing the digestion had already stalled. The immediate reaction is severe nausea, so I'm done for the day. I have medication to fix medication that was to sort the first medication and the circle goes on. I'm really good at not taking medication and forcing my body to deal with the consequences. The truth is I'm incurable and untreatable so why on earth would I want to try when I react to all medication severely. For the last 4 weeks the medics have wanted me in ED, but as I sit there and they do nothing why would I bother. The diabetic specialist refused to come down to ED to see me last time, at that point ( 9 hours in) I asked to be signed out, I normally walk out, on the basis I could do what they are doing at home and be more comfortable. I walked out with glucose levels at 17mmol/l, well into hyperglycemia heading for elevated ketones. I have set myself limits, over and above them I will take action, but not before. The ultimate goal is to go unmedicated for everything. I'm getting closer every day now.
With these health concerns I have to manage myself anyway I can, to get by another day. Sometimes that is contary to what I have been told to do, but as history has given me a better knowledge of how I react in certain situations, that is my guide. I deftly ride the knife edge of life or death.
The list of affected areas just keeps climbing, the more I look into my history with a rapidly exspanding knowledge of these issues it just gets worse. The nearest I can determine is that the autonomic polyneuropathy is well advanced followed with the FND. I can't sit and pitty myself, I suspect I don't have the time to waste any more. I'm already pulling back from buying aids to help as it would seem to be a financial waste, for any short term gain.
Yes osteoarthritis is on my play list. One hip and all the finger joints. A life time of working the finger to extremes on industial instuments, watches and clocks. With my ability to suck up considerable pain I won't let anything stop me doing what I want. I can tolerate a serious amount of pain. I came to after shoulder surgery and walked out of the hospital without pain killers much to the amasment of the specialist and staff. I don't think my wife even knew how much pain I could absorb. It is likely that the autonomic polyneuropathy is blocking the pain. Not something I have checked yet. If so that is the good part of this disease for me.
Take care.
Cheers

@arcuri24 I have been living alone for almost 10 years. So I have the time to explore and learn about all sorts of new hobbies I have seen on YouTube or Face Book. I’ve actually started my Family Tree on Ancestry, and work on the world-wide tree on Wikitree. I love learning history, and how I am connected to people.

Then I started to try painting. I bought a few canvases, acrylic paint, brushes and a small easel. I decided to try watercolors, alcohol ink, and now I’m trying to add molding paste to my paintings.
I have no training, and it shows…I do whatever…

Jigsaw puzzles are also a new thing. I work on them while I eat.

I would love to do fused glass again, but arthritis has caused me problems in my fingers.

Living alone after years of taking care of everyone else has made me more creative and I have the time. I’m almost 77 and doing well…

@tessie63
Hi,
Sadly, I have been advised not to use the seeds as the stomach is stacking the food and fluid in a state of stasis. The laxatives are stranded in the upper stomach unable to get to where they need to be to work. I get all the pains and noise throughout the system but not reaction you would normally expect loaded with laxatives. So far Dr's don't seem to be getting the message, I'm not constipated, the muscles don't do their job moving the food through the digestive tract and out of the bowel. I'm on a three-day cycle, eat a small amount of easily digestible food the first day, fluids the second day and suppositories late on the third day with some fluid before if possible.
Thankfully dulaglutide has finally left the body but it was not the cause only an enhancer that made me realise I have a big problem anyway. We have little idea what caused the autonomic polyneuropathy and FND but so many health issues have all added their "help" along the way including PBB poisoning in Michigan. Fortunately, not Covid which would add its few cents worth if it could.
Now the body is being starved of vital nutrients I have approximately 1 hour of strength left in the body per day and no stamina before the legs start to tremble and struggle to hold me up. Because of the lack of nutrients, the body is robbing it from anywhere it can find it, muscles mainly. A result of what is going on my glucose levels have started climbing as the body is under stress and releases even more glucose into the system to help where it is needed.
I appreciate the support and suggestions but believe me there is no way around this problem until I can get a new wiring loom or a full body transplant!
Just starting to notice I can't feel the gas pedal anymore so not long before I'll need to stop driving. Meantime all I can do is look on the bright side and keep fighting by whatever means I can.
Cheers

@tessie63
Hi,
Sadly, I have been advised not to use the seeds as the stomach is stacking the food and fluid in a state of stasis. The laxatives are stranded in the upper stomach unable to get to where they need to be to work. I get all the pains and noise throughout the system but not reaction you would normally expect loaded with laxatives. So far Dr's don't seem to be getting the message, I'm not constipated, the muscles don't do their job moving the food through the digestive tract and out of the bowel. I'm on a three-day cycle, eat a small amount of easily digestible food the first day, fluids the second day and suppositories late on the third day with some fluid before if possible.
Thankfully dulaglutide has finally left the body but it was not the cause only an enhancer that made me realise I have a big problem anyway. We have little idea what caused the autonomic polyneuropathy and FND but so many health issues have all added their "help" along the way including PBB poisoning in Michigan. Fortunately, not Covid which would add its few cents worth if it could.
Now the body is being starved of vital nutrients I have approximately 1 hour of strength left in the body per day and no stamina before the legs start to tremble and struggle to hold me up. Because of the lack of nutrients, the body is robbing it from anywhere it can find it, muscles mainly. A result of what is going on my glucose levels have started climbing as the body is under stress and releases even more glucose into the system to help where it is needed.
I appreciate the support and suggestions but believe me there is no way around this problem until I can get a new wiring loom or a full body transplant!
Just starting to notice I can't feel the gas pedal anymore so not long before I'll need to stop driving. Meantime all I can do is look on the bright side and keep fighting by whatever means I can.
Cheers

@cheyne how do you reprogram your brain?

I fall straight backwards. I’m side to side mostly wobbly when I walk. Then, when standing still or bending forward, I go backwards.
The tremors in my hands cause me to have to retype something over again. It’s a constant struggle.

@cheyne

It sounds like I have the same issue or similar to yours. Food is sitting in my stomache for days and then for me its terrible constipation cause it has been sitting there (I noticed you mentioned you dont have constipation). Have doctors mentioned anything at all for help? I cant find any. I went to see a gastroenterologist and he saw me for 15 mins and said it was just anxiety. The neuro I was seeing told me possible autonomic involvement and that was it. On top of that my feet are getting worse each day and now my arms are getting sore and weak. To be honest Im starting to reach my breaking point which I let my doctor know. I’m literally watching muscle melt. The neurologist told me not to worry about it, its just neuropathy, go and live your life. Since there is no help Im starting to see the writing on the wall. I weigh 160 pounds now due to neuropathy - I wasnt trying to lose weight. I was 225 when this started late 2024. Sorry for these posts but I dont really have anyone to talk to so I apologize.