Living with Neuropathy - Welcome to the group

@johnbishop Well today is the first day wearing them and it feels wonderful! I will see tonight when I take them off. But during the day is when I focus on the good I get or not. This is just the 1st day too.

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

I just keep reading about all the awful side effects and limb loss and so much more I am petrified of this I have just been diagnosed with neuropathy

@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

@cheyne I am so sorry.

With the exception of diabetes, I put up with everything else you do,
Add Fibromyalgia, Osteoarthritis, and bone spurs to the mix and it’s all good…

Pain is a daily occurrence I have experienced for many, many years.
I’m almost 77 y/o

How do You cope with FND?
That’s the biggest problem I have right now.
I’ve fallen twice in the last 2 months and hurt my jaw joints.
I sway backwards.

Take care of yourself.

@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

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.

Hello. I've had PN for 3-1/2 years. Diagnosed idiopathic. Numbness, pins and needles first in feet, has progressed to calves, knees and, recently, thighs. Very unsteady. Fatigue. I exercise every day. Balance is very bad. Now walking with walking poles.
A question. Has anyone tried red light therapy and, if so, with any positive results?
Thank you.

@lalper yes I have used the red light therapy. It has worked very well for me. I can sleep through the night with very little pain.