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Who has experience with autonomic neuropathy?

M

ModyGirl

Well-Known Member
Messages
55
Type of diabetes
MODY
Treatment type
Insulin
Been diagnosed for 6 years. Hba1c at diagnosis when pregnant was 54 - subsequent Hba1c's have mainly been in the 30s and 40s. Saw a neurologist who believes I have small fiber neuropathy linked to diabetes. I have lots of autonomic symptoms like episodes of low blood pressure, nausea, adrenaline rushes, tachycardia, I'm currently always freezing cold but do have episodes of sweating too much. My feet sometimes burn, my legs vibrate, I have a tremor that comes and goes in my left arm/hand. I wake with throbbing forearms, I have headaches, fatigue, brain fog and constantly feel as though I am coming down with the flu.

Does anyone have any experience of this? How do you cope? I'm 34 with 2 young children and I'm a teacher who is struggling to make it in to work. I feel like my life is over.
 
Sounds awful. What advice has your doctor given you to deal with all these horrible symptoms? How long have you suffered this? All I can do is sympathize since I don't have the symptoms you do, so I would not know what to do. Hopefully someone will respond with help you can make use of.
 
I saw a neurologist at the start of December who said I had it and there was no cure. I can't understand after having diabetes for 6 years with good control - all this has happened to me.
 
Also, symptoms started in December 2020 but got massively worse and increased after I had covid in October 2021.
 
I'd go to another doctor, if I were you. You need help to deal with the symptoms, and a second opinion - your current doctor may be wrong. Even if something is incurable, that does not mean there aren't actions you can take to alleviate your condition (like diabetes for instance). Some on this website have reversed or lessened their neuropathy by going low carb or keto. Have you tried that?
 
My endocrinoligist disagrees with diabetes as the reason considering the length of time I have had diabetes and the good control I've had for the duration. Small fiber neuropathy/autonomic dysfunction doesn't seem to be that common amongst the diabetic community despite it being the number one cause of SFN. I just don't understand it.
 
Just because you are diabetic doesn't mean your health conditions are all caused by diabetes. I second the suggestion to seek a second opinion on the neurology front.

Covid is a massive unknown as regards its long term effect on the body but if it has exacerbated your condition then it is possible that its effect will lessen with time?

Good luck and virtual hugs.
 
Some, at least, of those symptoms sound more like Long Covid than diabetes. I agree that, if possible, you should seek a second opinion. If that's not possible, can you talk to your doctor about Long Covid as a possibility? Perhaps, as well, there might be something available that would alleviate the symptoms, for example, I take codeine and paracetamol for arthritis and I find that it helps to control that horrible feeling of vibrating legs (legs turning to jelly). I don't take the drugs in order to control the leg symptoms, but it is a happy happenstance that it does that as well.
 
Probably would consider a second opinion there are other conditions that could also explain your symptoms cfs/me fibromyalgia long covid to start also it’s not long to have diabetes
 
I have mentioned the likelihood of autonomic neuropathy to the medical profession but they have completely ignored it. Some years back they thought that I might have prostate problems but subsequently they dismissed that. It takes me ages to pee and I can only half drain my bladder. My blood pressure is a bit on the low side, there are obvious signs that there is little peristalsis aiding the passage of food in my gut, intermittent fluctuations between diarrhoea and constipation, sweating seems to be poorly controlled and sometimes inappropriate to my temperature, and then there are issues with a combination of erectile dysfunction, retrograde ejaculation and occasionally priapism. Sleep apnoea sometimes occurs too but nothing serious happened on a one night sleep study so again that isn’t taken seriously. My eyes take a long time to adjust to different light levels and I have to squint and wear dark glasses In very bright light so obviously my pupils are responding sluggishly and not closing as much as they should. As long as I can feel the nurses prodding my feet they seem to think everything is fine and I feel like I am probably regarded as a bit of a hypochondriac. It is surprising that this side of diabetic complications is largely ignored. I have had type one for 45 years now and I suppose I am lucky to still be as fit and active as I am but it would be nice if they at least acknowledged the problems even though there is little that can be done about them.
 
Hollie, you're far too young to worry that life is over. You've a lot ahead of you.
In my case, I was diagnosed one year ago as type 2 with HbAic of 114. I had no symptoms, so it was only picked up when I had to have a cancer test. From the damage done to my eyes, I've been diabetic for probably ten years or so. Not very good, clearly.
I ignored the medical advice from the practice diabetic nurse (she told me the practice did not recommend low carb diets) and went on Michael Moseley's 800 diet and exercised more seriously, losing two stone in two months. I've kept on low carb foods, and my latest tests have shown that my HbA1c results are down to 39. I have a little neuropathy on my left foot, which is giving me some concern, but my biggest issue was my right arm, where I was losing all feeling in the fingers. Turns out that it's due to cubital tunnel syndrome, which has now been operated on. With luck it'll fix things.
I would definitely look to getting a second opinion. However, I'd also suggest looking at your diet. Michael Moseley's book is very useful and explains much of the concepts behind the diet and specifically going low carb. I've already been told by my GP that he found my results astonishing and agreed I should cut back the metformin by 50%. I would hope you could too.
Very best of luck!
 
Old’un said:
I have mentioned the likelihood of autonomic neuropathy to the medical profession but they have completely ignored it. Some years back they thought that I might have prostate problems but subsequently they dismissed that. It takes me ages to pee and I can only half drain my bladder. My blood pressure is a bit on the low side, there are obvious signs that there is little peristalsis aiding the passage of food in my gut, intermittent fluctuations between diarrhoea and constipation, sweating seems to be poorly controlled and sometimes inappropriate to my temperature, an are issues with a combination of erectile dysfunction, retrograde ejaculation and occasionally priapism. Sleep apnoea sometimes occurs too but nothing serious happened on a one night sleep study so again that isn’t taken seriously. My eyes take a long time to adjust to different light levels and I have to squint and wear dark glasses In very bright light so obviously my pupils are responding sluggishly and not closing as much as they should. As long as I can feel the nurses prodding my feet they seem to think everything is fine and I feel like I am probably regarded as a bit of a hypochondriac. It is surprising that this side of diabetic complications is largely ignored. I have had type one for 45 years now and I suppose I am lucky to still be as fit and active as I am but it would be nice if they at least acknowledged the problems even though there is little that can be done about them.
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To be honest, i do not think any one thing is the cause. An you could be suffering from numerous conditions, as well as diabeties. Conditions can be linked, but they can also just be bad luck. Experts, well experts usually, are not that expert! In the hundreds, thousands, or even hundreds of thousands of medical, experts, i have seen over the decades, i can say, i can count the ones that were any good on one hand! Do your own research. That is my personal opinion. List the conditions, see anything that triggers the symptoms, google them, analyse the results, do not automatically presume the first one is correct. Write them down, then take these to the expert an enquire. Ask them to give a written response to each question. Your entitled to one.
An, in my experience, suffering from conditions, like my nightly 4-6am hypos, that for 30+ years that "simply dont exist" according to all the experts. Right up till i wore my first cgm for a week, and the data slapped them round the face, an then they panicked, an they rushed me onto a pump in months, rather than over a year it usually takes. Or last year, when after 30+ years of being drugged up to the eye balls on anti epilepsy medication, an after being on a pump and cgm for 4 years, they then decide i am, NOT, epileptic at all, an am now on, NO, medications for it, an havent seized once! 30+ years wasted, by, experts! If your conditions are unusual, an not seen on a daily basis, experts do not know anything! Ask for the expert in your particular field, a diabetic consultant who specialises in neuropathic damage maybe?
 
HOLLIE4 said:
Been diagnosed for 6 years. Hba1c at diagnosis when pregnant was 54 - subsequent Hba1c's have mainly been in the 30s and 40s. Saw a neurologist who believes I have small fiber neuropathy linked to diabetes. I have lots of autonomic symptoms like episodes of low blood pressure, nausea, adrenaline rushes, tachycardia, I'm currently always freezing cold but do have episodes of sweating too much. My feet sometimes burn, my legs vibrate, I have a tremor that comes and goes in my left arm/hand. I wake with throbbing forearms, I have headaches, fatigue, brain fog and constantly feel as though I am coming down with the flu.

Does anyone have any experience of this? How do you cope? I'm 34 with 2 young children and I'm a teacher who is struggling to make it in to work. I feel like my life is over.
Click to expand...
This sounds so tough and especially the lack of optimism from your consultant. Whether it is post viral or vaccine induced (see paper indicating a very low known risk ) I am sure more will be known over the coming years.
I mention this rare side effect in case you are considering boosters tec. We know that the spike protein in both covid and mrna vaccines ends up in places not originally intended in the latter's case.
It sounds as if this is related to the original infection but here's the link.
Forum is permitting the link but I simply searched for Neurological Side effects of Covid vaccines.
Wishing you all the best in taking care of yourself even more and well done on keeping the diabetes in check as you evidently have.
 
You've all given me so much comfort. Thank you so much for your lovely messages. I have MODY which was picked up in the third trimester of my first pregnancy. By then I was having symptoms of thirst and fatigue and my Hba1c was 54 at diagnosis. My fear is that I now have all these symptoms because I was actually undiagnosed for many years before...I had no symptoms at all before I was pregnant but who knows. I had no signs of diabetic damage at diagnosis either and my Hba1c's have ranged from the 30s to 40s on insuļin which I take through choice.

These symptoms have come on hard and fast since covid. The tachycardia (POTS) started while I had covid. I'm so worried that if it 100% is small fiber neuropathy then it will just get worse and there's no cure. I just want to get on with my life. If I was rich I'd pay to see the best specialists rather than wait around for answers and drive myself to despair.
 
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