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holymoly

Insulin Neuritis....it sucks!

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holymoly

After a few weeks of head scratching my Endo and Neurologist diagnosed me with insulin neuritis...a bit of a misnomer since it has nothing to do with insulin nor inflammation of the nerves.

 

Basically when I went on insulin and rapidly got my blood sugars under control, I damaged the small nerves and blood vessels in my feet since they were so used to operating in a high blood sugar environment.

 

For something so painful and increasingly more common, there is a real dearth of any useful information on the internet.

 

The Bad...

 

The pain is horrible. Mostly confined to my feet, it's a combination of intense burning sensations and a deep ache that almost feels like someone just smashed your foot with a hammer. Sometimes it also causes a burning/cramping sensation in my lower legs. It's a real treat when both my feet and calves are hurting at the same time.

 

It's hard to get relief. Currently on 40mg of nortriptyline, titrating up to 70mg per day over the nest couple of weeks. Typically you have to go through a couple of different drugs/doses before you find one that works. In the worst cases the only thing that works are the heavy opioids, or nothing at all.

 

It really affects your quality of life. It's the worst at night...which means almost no sleep... I haven't slept for more than 2 hours in one spell for over a month now. Nights usually consist of me getting up 3-5 times to soak my feet in cool water, with a few periods of sleep in between. I have also taken to wearing my moccasin slippers everywhere since regular shoes just cause too much pain. I also limp around like an old man (I'm only 31!)

 

The Good...

 

It's reversible! Insulin Neuritis is an acute form of neuropathy, meaning that it usually resolves itself within 3-12 months of the onset of symptoms, assuming you maintain good control of your BG.

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jwags

I am so sorry for you. I am currently try suffering from Chemo Induced Peripherial Neuropathy in both hands and feet. They know it is caused by the chemo I am on but don't know if the damage to the nerves is permanent or not. I am looking for any kind of relief. my Endo thinks the quick i set is different than diabetic neuropathy.

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meyery2k

Holy - I am sorry you are suffering.  I am glad to hear there is hope for permanent relief.  This might be a tough road but stick to it so you can have many better days ahead...

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JohnSchroeder

This might be a long shot, but coming back to this thread I had an idea that could be worth a shot.  Drinking caffeine restricts your blood vessels.  I've noticed that when I am drinking one or more diet cokes a day my hands and feet are much colder.  Likely due to restricted blood flow. 

 

Now I don't know if you drink caffeine or not, or if more or less blood flow to your feet would help.  But thought it would be an easy thing to change one way or another for a few days and see what happens.

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holymoly

This might be a long shot, but coming back to this thread I had an idea that could be worth a shot.  Drinking caffeine restricts your blood vessels.  I've noticed that when I am drinking one or more diet cokes a day my hands and feet are much colder.  Likely due to restricted blood flow. 

 

Now I don't know if you drink caffeine or not, or if more or less blood flow to your feet would help.  But thought it would be an easy thing to change one way or another for a few days and see what happens.

 

Thanks, but right now I am off caffeine... makes it much more difficult to control my sugars. The best remedy for this is to maintain good BG levels and let my body adapt to this new environment.

 

In the meantime though, the pain really is awful. Just after a few weeks of this and I now truly feel for those who live in chronic pain... it is not something I would wish upon my worst enemy.

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funkynassau

I had very sore feet for a long time before I found out I have t2.  It felt like someone was jabbing a knife in my feet repeatedly.  Hard to sleep.  It resolved itself for the most part when I got my bg level under control.

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Hammer

It sounds more like the nerves in your feel are repairing the damage that was done to them when you had high glucose levels.

 

Before I started using insulin and had high glucose levels, I would get that pins and needles feeling in my feet every night when I was in bed.  When I started on insulin and got my BG levels down to normal levels, that pins and needles feeling was replaced with pain....pain that was caused by the nerves repairing themselves.  The pain wasn't very bad, and it only lasted a few weeks, but then again, I only had that pins and needles feeling for a few months, so I'm guessing that there wasn't much nerve damage done to my feet.

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ant hill

HolyMoly!!!! OMG That would suck BAD!!!

I hope all is well now. Touch wood that I don't get thisI. It's bad enough being Blind in my right eye.

Speaking of control I better get into the habit of keeping Insulin in da Fridge, the bulk is in the fridge but what I use should be also in a fridge.

be well. :)

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ant hill

This might be a long shot, but coming back to this thread I had an idea that could be worth a shot.  Drinking caffeine restricts your blood vessels.  I've noticed that when I am drinking one or more diet cokes a day my hands and feet are much colder.  Likely due to restricted blood flow. 

 

Now I don't know if you drink caffeine or not, or if more or less blood flow to your feet would help.  But thought it would be an easy thing to change one way or another for a few days and see what happens.

Oh No!!! I love my Coffee. :huh:

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holymoly

Made it through the holidays! Was a bit worried because my feet were absolutely KILLING me the week of the 16th...I was out in California for business and was pretty  much bedridden besides the few times I needed to drag my ass out of the hotel room for a meeting. Thankfully though my pain improved markedly of the next couple of weeks to the point where I am now back to doing moderate exercise and wearing normal shoes again (yay!)

 

Sadly though I may have developed another complication that occurs with insulin neuritis. Oftentimes autonomic dysfunction is present in those with insulin neuritis since it is a small-fiber neuropathy (nerves responsible for pain sensation and also for other functions like digestion, heart rate etc) so I have an appointment to get a holter monitor and see a cardiologist this week because my resting heart rate has been through the roof for the last few weeks (saw my endo today and my HR was 114 sitting down!)

 

Just can't seem to catch a break lately :(

 

HM

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cometkitty

Wow this sounds so much like what my husband is experiencing!  At diagnosis on Jan 5 his BG was 295 and one month later his average is about 115.  But he is not on insulin....just Metformin.  He is in awful pain....burning and cramping from his feet to his knees and he can barely walk and sleep has gone out the window.  He is only 43 and it came on so suddenly.

 

How did your doctors diagnose this?

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