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Severe Peripheral Neuropathy

patricklt

patricklt

Member
I live with severe peripheral neuropathy in my lower legs and feet - manifest most of all by lower leg ulcers and, it would appear, a breakdown in capillary action that results in tiny blood blisters forming. There is also serious derma breakdown, probably not assisted by my GP prescribing, over the years, ever stronger steroidal ointment which I have stopped. I wear, when I can, special compression stockings, now tending to use Velcro fastened ones that I buy myself - often it's too painful to wear the stockings. I put fresh yellow line on daily, washing the legs with a special derma liquid soap and moisturising them with paraffin 50-50. Notwithstanding, they are pretty much soaked through with blood and exudate by the end of the day. Super-imposed over all of this is a form of eczema where newly grown skin appears to die almost instantly plus regular leg infections requiring level 2 antibiotics - I've twice had severe infections that were not far off developing into sepsis and that required hospitalisation. After a lot of push and shove, I've finally been referred to a dermatologist at my local hospital although not for several months yet. Overlying this is pain - almost constant pain, currently managed by3 x 300mg Gapapentin daily, each taken alongside 2 x 500 mg Paracetamol. Quite often it will wake me mid-night.

My question is this: my HbA1c is very well managed at 38 mmol/mol (or well below 6% which is normal) - yet my neuropathy, if anything, worsens and my GP seems unable to suggest anything aside from increasing the painkillers. I am not due to see my Diabetes Consultant for 3 months yet to further review this. Is there any explanation for this situation - ie very well managed bloods but deteriorating symptoms and, if so, what can be done?
 
patricklt said:
I live with severe peripheral neuropathy in my lower legs and feet - manifest most of all by lower leg ulcers and, it would appear, a breakdown in capillary action that results in tiny blood blisters forming. There is also serious derma breakdown, probably not assisted by my GP prescribing, over the years, ever stronger steroidal ointment which I have stopped. I wear, when I can, special compression stockings, now tending to use Velcro fastened ones that I buy myself - often it's too painful to wear the stockings. I put fresh yellow line on daily, washing the legs with a special derma liquid soap and moisturising them with paraffin 50-50. Notwithstanding, they are pretty much soaked through with blood and exudate by the end of the day. Super-imposed over all of this is a form of eczema where newly grown skin appears to die almost instantly plus regular leg infections requiring level 2 antibiotics - I've twice had severe infections that were not far off developing into sepsis and that required hospitalisation. After a lot of push and shove, I've finally been referred to a dermatologist at my local hospital although not for several months yet. Overlying this is pain - almost constant pain, currently managed by3 x 300mg Gapapentin daily, each taken alongside 2 x 500 mg Paracetamol. Quite often it will wake me mid-night.

My question is this: my HbA1c is very well managed at 38 mmol/mol (or well below 6% which is normal) - yet my neuropathy, if anything, worsens and my GP seems unable to suggest anything aside from increasing the painkillers. I am not due to see my Diabetes Consultant for 3 months yet to further review this. Is there any explanation for this situation - ie very well managed bloods but deteriorating symptoms and, if so, what can be done?
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How long has your diabetes been well managed for?

I can only offer anecdotal suggestions that reducing your carbs has been known to help with infections. My father found this to be true for him, he was a type 2 diabetic. He had leg ulcers. He was able to reduce his diabetic medication too by low carbing, with the support of his medical team.

I am sorry you are suffering.
 
Even with a 'good' HbA1c level we can be experiencing damaging spikes from too many carbs in single meals. This is why testing before and 2 hrs after meals is important as part of the strategy to discover how many carbs a day and per meal each of us can safely eat.
I discovered via testing that while I could have up to 85g a day (before getting into remission) more than 30g in one meal would cause a spike ie 25g plus 5g of carb in milk for a coffee.
No matter how long you've been diabetic, avoiding spikes in the future will help improve ulcers, etc. (I know that milder neuropathy can be reversed too, but am not sure about more serious cases.)
 
ert said:
I'm sorry about the complications you are experiencing. You're having a tough time of it. Well done on your current HbA1c. Type 2's can have diabetes for many years before they are diagnosed. This is when a lot of damage is done before you have a chance to take back control.
https://www.sciencedaily.com/releases/2018/10/181004192202.htm
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I agree with ert. I am sorry you are in so much trouble. Your GP should have looked into this years ago and not let it come to this stage. I am having much milder symptoms and I have started seriously to take control. This said things are not easy when you are over eighty. My symptoms are basically the strange feeling that I am walking on a sheet of water and sometimes wearing Jello-like slippers. I hope it is only of the sensory type and not autonomic.
 
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Maybe suggest to your GP you see a dermatologist or Tissue Viability nurse? It must be very stressful for you to cope and this stress will also not help with diabetes control :(
 
Thanks a lot. It indeed comes to my mind. When I use the 'magnesium oil' (it is not an oil but an advertisement name) diluted with water and applied to the skin, I do see a change in the texture of the skin with a feeling of 'not so inflamed'. This 'now it is better' feeling lasts a couple of hours and during the day the nasty feeling comes on. I have not heard of 'Tissue Viability Nurse'. My GP even told me that there are no neuropathy specialists but only neurologists.
 
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