Living with Neuropathy - Welcome to the group

@vonnie1965
Hello, I have had polyneuropathy for 10 years and have never heard anything like that.

If you have arteries that are damaged, then yes that can be a problem because inflammation in the arteries can cause the tissue to die.

That is not neuropathy.
What is it that you are reading?

Susan

@SusanEllen66 Hi there thank you so much for replying I have been seeing all these reports on the internet most of them are trying to sell to people with neuropathy I was truly hoping these were just scare
Tactics but some were people like Dr Oz and Dr Phil but I don’t know anyone I could ask so you helped me by reassuring me I am sorry you are dealing with this also I have quite a few medical issues so as fellow neuropathy patient it nice to talk. To someone who understands!!! Thank you again!
Vonnie1965

I have suffered from chronic pain for years mostly issuing from spinal deterioration and all that involves. I have tried many different "remedies" some helpful some not and eventually benefited from accurate diagnosis and first class surgeries which has alleviated much and, hopefully eliminated some future problems. Although I am only ten weeks out from the second major back surgery (the last one btw) giving improvement, yet all is not well and I feel some problems will most likely persist. Perhaps I've been spoiled by being extremely healthy and active until the last 5 years or so which have been consumed dealing with these problems. I have posted many times under various groups and what I have experienced can be read under my "profile". Now peripheral neuropathy diagnosis is of interest since many of it's symptoms are the same as what I have experienced from the spinal deterioration. Apparently this PN diagnosis is some what encompassing in its manifestation since many other maladies result in very similar symptoms. I have had numerous blood draws and none have shown any overt deficiencies but maybe they were not specific for the NP inquiry or diagnosis? Just wondering if others have NP as an underlying condition even though they have been correctly diagnosed with other issues causing their pain and numbness? If that is the case, has that "fine tuning" helped in their quality of life even if enduring this other pain? Thank you-any input is appreciated.

@SusanEllen66

You certainly face challenges but I detect positivity in you. I am dealing with nerve pain caused by an unnecessary shin shave biopsy (unnecessary because lesion was not cancer). Yet, here I am six months after the procedure and several doctors visits as well and I still have pain in my leg. I have celiac disease and neuropathy so my pain is amplified. I want to be active and do exercises but doing that may impede my healing process. I was encouraged as a few days ago I even wrote in my daily log book that my leg was feeling better. From what I have read there are so many variables that can affect nerves--and they are ever so slow to heal. I want to suggest doing balance exercises. They make help prevent falls. I know several of my friends--my age 73 and some older folk who have fallen and now have pain from that. Another guy fell and now may have damaged his inner ear and has dizziness too. I do admire your courage and empathetic tone.

Hi,
Recently I have trialed dulaglutide for T2 diabetics which has enhanced the neurologicl problems I had managed to ignore for what turns out as years. I have autonomic polyneuropathy, FND, IBS and diabetes with rampant high blood pressure. In trialing dulaglutide it has locked up my digestive system and bowel leving me in serious trouble. I have stopped taking it, now 4 weeks ago and have another week of this before it is out of my body. It is becoming clear the digestive problems I have are the tip of the iceberg. I'm restricted in how much I eat or drink the volume being my limitations. Half a cup of tea immediately locks up the digestion taking over 6 hours to progress through the system. Solid food is impossible for the moment.
I'm just now starting to realise how many years this has been going on and I have just ignored it as life. It seems to have invaded the entire body to some degree or other. With my diabetes being untreatable due to the damage that has occured to my nerves system I react to every known medication. I'm classed as super sensitive to medication. I'm now facing likely starvation which is well on it's way or death through diabetic coma. I get to choose, Murphy's law. I have managed to overcome many problems associated with neuropathy but facing no cure and no treatment is weighting heavily on the mind. Don't get me wrong, I'm not concerned about death. I just wish it would get a move on.
The glazed over look and the shrug of the shoulders from so called specialist becomes annoying to say the least. That is the ones that have any idea of what I have to deal with daily. Usually I'm having to educate them and then I don't think they get the full grasp of the severity I'm dealing with. I shudder to think I could be past halfway with the neuropathy but it is shaping up to be the reality. Fortunately the daily pain is not a problem having lived with it for so long it is just there and I pay it no mind, luckily I have a very high pain tolerance. I feel the strength and stamina slipping away from me. Regardless of the dulaglutide it should not interfering with the stomach by now which is looking like I now can consider the digestive lock up as pemanent, unless I don't eat. At the rate the medical fraterity moves I likely won't need their help when they get around to it. I'm sitting here wondering what my next choice will be, not that there are many, two to be precise, both lead to the same place.
I'm not even sure why I'm typing this now as I'm incurable and untreatable, so expect nothing from anybody that could help. The vain hope is someone else out there is dealing with this incidious disease themselves who would compare notes. Despite knowing it is futile there is still hope something might come to light to help anytime.
Cheers

@vonnie1965

Hello and chiming in not to scare you but expand a bit on your question.

Neuropathy where you cannot feel your feet thus not feeling injuries can lead to ulcers, infections and to a condition called Charcot foot which can lead to amputations. I think Charcot foot is more common in diabetic neuropathy but do know neuropathy can cause it as well. Charcot foot is rare. I do have diabetes and sensorimotor polyneuropathy and have been told of the risk from my podiatrist (which I then googled for more info) so thought I would chime in. I’m at risk for it (Charcot foot or neuropathic osteoarthropathy) due to diabetes and sensory loss in my feet.

@arcuri24 thank you.

My balance issues, and more are caused by a neurological disorder. Functional Neurological Disorder or FND. My brain and body are not getting their signals straight.
My life has made a wrong turn. I wish it wasn’t so, but here I am learning new things everyday, new hobbies etc. God is leading me through this journey for a reason.

@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.