GFR down from 58 to 43.8 over 3 years

Hi,
I'm in a "free" health system, which means it is free if you can get it!
Everything here has to go through your GP, while she tries there is little one can do if they offer only excuses why not. I refuse to pay for something I have a right to free.
Generally I'm a fighter but there comes a point at which it is pointless with no gain to be had.
I have to be mindful that there is no cure and no known treatment for Dysautonomia which is the major health issue. The CKD, T2, IBS and the rest of my health issues don't bother me in the slightest compared to the dysautonomia, it has taken over control of the bladder, bowels and digestion permanently with the other symptoms being random and debilitating throughout the day.
I no longer have bad days, it is all bad and I now have good hours which are very few and far between, just 3 hours over the last month. Can I make the dust fly in those hours using every minute while the dysautonomia takes a coffee break!
I'm tidying up all the unfinished work around the house and finishing off the projects I have started so I don't leave a mess for my wife to contend with. I should be done by December when the final decision will be made. Until then I live with hope something will turn up to get me comfortable.
Cheers

In our experience, some of the GI issues you describe can be caused by diabetes. Do you have an endocrinologist?

Hi,
My dysautonomia was initially caused when I cheated death from campylobacter and my kidneys shutting down, they gave me hours to live as they couldn't determine what I had at the time. No typical signs associated with campylobacter just rampant diarrhea, no pain or vomiting and still felt pretty good other than couldn't summons the strength to walk but a few paces. With that reality I took myself in to ED after a week of it.
It has been further complicated by unchecked continual high glucose levels and blood pressure ever since. So no, all the major symptoms I have are the result of dysautonomia. The only symptom directly related to diabetes is the lack of sensation in both arms and legs. No pain or pins and needles, no loss of sight compared to prior eye sight tests.
Dysautonomia affects my bowel, bladder, digestion, blood pressure, eyes changing with the available light level, stability in standing and walking, throat and the ability to breath, brain fade, vertigo and severely compromises my ability to understand the spoken and written words, it destroys my memory when I'm having a really bad day and I lose the words that were on the tip of my tongue. Basically I feel like an idiot in these moments and start slurring my words.
Against that every other health issue I have doesn't come close to being the insurmountable problem of having dysautonomia. I got through 15 TIA's over 3 days early this year without any residual effects, so in some respects I have been pretty lucky.
But the dysautonomia is ripping through me destroying any semblance of what used to be normal. Touch wood it has only interfered with the heart beat once, I have an enlarged heart and am otherwise lucky to have a very healthy heart. I hope it is enough to keep it pumping when dysautonomia tries to stop it beating. So far my lungs are free of trouble and there is no loss of sexual performance, yet. Three of the symptoms not affecting me but the dysautonomia is progressing and interfering more as time goes by, that could be the influence of diabetes, I don't know. However it is likely that the dysautonomia will cause death before anything else has a chance at it.
I'm not belittling the severity of other health issues, they are every bit as important, just not for me.
Cheers

A family member had dysautonomia, so just want to make clear that I know what it is.

It may loom large but for general health there may be other issues that can be addressed to at least mitigate the situation.

Blood sugars can be controlled. High blood sugars have a huge effect on the body and mind (including enlarging the heart, which is also serious). I hope you have a diabetes doctor who can help with control either through meds, insulin and/or technology. Before the pump we did finger stick blood tests 17 times/day. Now there is pump, CGM and phone linkage possible.

Hi,
I'm guessing the enlarged heart is from 30 plus years of pumping high BP.
I had to ask for insulin as nothing else worked for me, but am restricted to the finger prick for testing by cost. My diabetic nurse had the cure, stop testing and I wouldn't be concerned! Not seen her since and refuse to listen to her.
I would hope that taking care of other health issues would slow the progress but with the bowel, bladder and digestion out of my control now, I'm opting to withdraw all medication so nature can get on and finish the job.
I have suspected for a while that dysautonomia has been interfering with my glucose levels but have yet to find the connection.
Cheers

@cheyne you seem either fatalistic or accepting but if you want to address the high blood sugars, you might want to try a different endocrinologist. You could see about a pump and/or CGM. To maintain control with GI issues , in our experience, finger sticks have to be done 15=20 times/day so the technology is a godsend.

Hi,
After fighting for better health over 12 years and now finding there is no cure, no treatment and hence only platitudes left. Being a realist it is time to stop as nothing more can be done, despite what people suggest. The Dysautonomia has a firm grip of me and is not letting go. You need to appreciate that the autonomic nerve system controls the organs. Dysautonomia is the corruption of the signals sent and received to and from the brain interfering and or controlling the body functions. Being polyneuropathy as well it incompasses both of the two main nerve systems in the body. With that lack of control I'm just along for the ride and no amount of side issues will change that. None of which can make me anymore comfortable from the dysautonomia effects. I appreciate the suggestions are made for help. They have all been tried with varying results.
Am I better to treat all the side issues which have little influence on ANS or abandon hope and live what time I can squeeze out as best I can( no pun intended when you read further). Everyone about me seem to think I should live a life of discomfort and misery to satisfy their quest for life. I don't, I'm the one having to deal with this disease by the hour, daily.
All those important to me have been advised of my decision, none of them like it but do have some sort of understanding of what it takes for me to get through a day. This includes my Dr, and what do I get. You are depressed, you need laxatives, even my wife is chiming in on that now. The reality is I don't need more laxatives, all I need is for the signals to evacuate the bowel and bladder to work and no I'm no depressed. Infuriated and frustrate to say the least but resolved to live as I see fit.
A good test to feel just what I'm putting up with is to not clear your bowels and bladder for at least 3 days and then not be able to move the bowels, then you might understand what life is like for me. It makes no difference if I'm constipated or have diarrhea, the evacuation is incredible difficult to achieve. Then add in a digestive system that takes twice as long to digest anything than anyone with normal digestion takes. Just when you think you have that licked throw in some restricted breathing through a throat that likes to start restricting air from time to time, because it can.
I'll leave the brain fade and instability problems with the vertigo and poor cognitive skills alone for the moment. By now any right thinking person would have had enough. Now consider, this is every day of my life now.
Believe me I'm a fighter but I know when I'm beaten and it is time to take it on the chin.
Cheers

Looks like you have a lot going on, I'm sorry to hear that.

Yes I think so, hydration is definitely a key point, I'm trying really hard to drink 2 litres a day, some of that is in the form of tea and I'm allowing myself one coffee maxim per day.

You can cut out all NSAIDs, if you use any of those. Steroids also.