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Colleen Young, Connect Director avatar

Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 hour ago | Replies (6931)

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Profile picture for cheyne @cheyne

@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

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Replies to "@tessie63 Hi, Sadly, I have been advised not to use the seeds as the stomach is..."

@cheyne I’m so sorry to hear this is happening to you. I have never heard of this condition and it must be frightening to realize there seems to be nothing you can do to stop its progression. Stay strong and keep the faith that perhaps a doctor will come into your life that can figure out how to help you with this. I’m sending you hugs and well wishes.

@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.