Neuropathy and agonising pain

[Russ]

I've read in other articles that up to 70% of diabetics (possibly more type 2s than 1s) suffer some degree of neuropathy at some time but it's a subject that only comes up relatively occasionally here.

I get 'attacks' that are most often in different parts of my feet but can be in my hands, eyes or odd parts of my body. I might add that although I sometimes get excruciating stabbing pains in my eyes, regular eye monitoring shows no signs of any damage. My BS is well controlled with my last HbA1C of 5.6, but an night attack (about 25 successive occurrences) I had in my feet last week, was so very frightening I felt suicidal, not getting any relief until about 6am when I finally got to sleep. I have seriously thought that the only solution would be amputation because I cannot live with this awful pain.

I've had an easier few days since last week with only the odd bearable (just) pain, although they happen most days, but this has been going on for at least the last couple of years and I started taking Acetyl-L-Carnitine which is supposed to help with nerve regeneration and is thought by some to be beneficial to diabetics.

When I've mentioned this to nurses, doctors or consultants I don't get much response. I am due for my annual check with my diabetic consultant tomorrow and will press more about this but in the meantime wonder what others experience and knowledge is of this unpleasant condition. Am I in the minority or are there many others suffering in silence?

Russ

 

[timo2]

Hi Russ,

Benfotiamine is supposed to be good at treating painful neuropathy.
I've known of a few people who take it in quite high doses (500mg+ per day) without any problems.

Like Eddie said, you need to be sure it's down to neuropathy and not a side effect or
interaction caused by anything else that you're taking.
(Profile meds: Metformin, Aspirin, Indapamide, Atorvastatin. Various supplements)

Good luck,
timo.

 

[hogweed]

There’s probably only a 1% chance this is relevant, but... in 1979 I got a cold sore from kissing someone, but either it was a particularly virulent strain of the virus, or it fond me a particularly suitable host... anyway, it quickly spread into my mouth and throat where I developed large numbers of cold sores. I was in absolute agony for a week or more – could hardly eat or drink etc.

Eventually it subsided, but flared up again for years. Now it never flares up externally, but every so often it does INTERNALLY, giving me really nasty sharp, stabbing pains in OTHER parts of my head, like my eyes, cheeks, forehead, gums etc – never anything visible This can last for a couple of weeks before it goes, and is really, really horrible.

This happens because the virus retracts along the nerve fibres, towards the brain and spinal column, and lurks there – then when something (largely unknown, but for me stress definitely plays a part) triggers it, it creeps back down the nerves towards the skin, where it causes intense pain.

I don't know if there’s any possibility you’ve ever had shingles or anything like that – like I say, just a tiny chance maybe it’s not diabetes-related neuropathy as other things can cause it too...

 

[DiabeticGeek]

Lots of conditions other than diabetes can cause peripheral neuropathy, and if your BG control is really good then you should investigate other possibilities. One thought is that since you are a vegetarian, are you sure you are getting enough vitamin B12? A vitamin B12 deficiency can cause the sort of painful neuropathy that you describe, and vegetarians are sometimes susceptible to that. The main sources of B12 are meat, milk and eggs. If you eat lots of milk and eggs, then this won't be a problem - if you don't then maybe you should try taking supplements. Failing that, talk to your doctor about other non-diabetes possibilities.

 

[Russ]

Many thanks for your replies; I've had a lot to think about.

My diabetic consultant was sure that although I have peripheral neuropathy, it is not diabetic. This confirms your suspicions, so I have to start from scratch at my doctors.

My diet is reasonable and I get enough fat both dairy and vegetable, just not animal. I also eat fish and take a a B12 supplement. I did have shingles about 20 years ago, Hogweed, so know how unpleasant that is but my recent pains were much worse. I don't think there's any interaction with my current drugs and supplements but I will certainly get it checked out.

Thanks again for your suggestions. I've been ignorant thinking it was connected with diabetes but will certainly take a different route now.

Regards,

Russ