Tuesday, 29 May 2012

Insulin Neuritis: My Experience

I thought that it would be a good idea to share my experience with Insulin Neuritis as there really is not a lot of information out there with respect to this.  When I began to suffer with this rare condition I searched endlessly for stories of people experiencing the same thing I was, mostly for comfort and reassurance.  I really was surprised at the lack of info out there.  So here is my story.

I was diagnosed Type 1 diabetic on September 7, 2011.  On diagnosis my sugars were hovering around the 38 mark and my A1C was 16% (off the charts according to my Endo).  Looking back I think that I went undiagnosed for at least 18 months, perhaps longer.  Going for so long undiagnosed resulted in the issues I have had with my eyes and teeth (that is another story altogether).  Unfortunately I also have suffered with this rare condition Insulin Neuritis.  

About two weeks after I was diagnosed I began to notice what I can only describe as "buzzing" in my feet. It was not painful but very annoying.  By the time I attended my diabetic education classes in October, 2011 the "buzzing" had progressed to some burning and pins and needles.  I spoke with the nurse about it after class and she said that this can be quite normal and that it should go away within a couple of weeks.  I left feeling assured that it was temporary, I was not too concerned.  Over the next four weeks things got worse, fast!  The burning was soon accompanied by stabbing pains through both feet and up my legs. It felt like someone was shocking me.  I could be sitting and would repeatedly be plagued with these pains.  By the end of October, 2011 I was in a living hell, literally.  I was experiencing the most unbelievable pain 24 hours a day.  Nothing would ease it. By then I had been to my doctor half a dozen times and she had started me on Neurontin (Gabapentin) which was used for nerve pain as well as a cocktail of T3's and Percocet.  She had me taking 2 Percocet every 4 hours and it did nothing to ease the pain.  I was getting on average 4 hours of broken sleep a night and was extremely exhausted and very emotional.  I tried for a while to do some work from home but by mid-November had given in and went on short term disability.  It became difficult to walk and the pain got even worse if travelling in a car, standing for more than a few seconds or wearing socks and shoes.  In fact it was painful for anything to touch my feet, whether it be my sheets or even a breeze of air.  My doctor had referred me to a neurologist right away and I got in to see him at the end of November, 2012.  By this time I was a total wreck.  I was not sleeping and was in agony all of the time.  The pain was the worst in my feet however had travelled up my legs, into my arms and hands and was even in my ribs and breasts. I had noticed some time ago that the hair on my feet had stopped growing and now that my sugars were regulated the hair began to grow back.  I swear that I felt every single one of those things grow.  My diabetic nurse told me about an ointment for nerve pain called Neuralgia and I went out and bought it right away. It was $35 for a small bottle but I was willing to try anything.

The neurologist really was amazing.  He was very thorough and very reassuring.  He confirmed that I had no permanent nerve damage however it was likely I would suffer for the rest of my life with flare-ups of neuropathy.  He advised that the current state I was in was due to having my sugars dropped from a very high level to a normal level in a very short period of time.  He explained that since I had gone undiagnosed for what was a very long time, my blood had become thick with sugar and my nerves had gone into "hibernation".  He said that once my blood sugars had been normalized, the nerves in my body had awoken and were in the process of regenerating themselves.  He said that the process of regeneration is a long process and extremely painful.  If the nerves had suffered damage they would die off quickly and I would be numb, not in pain.  He assured me that things would gradually get better over time and that hopefully within 12 months I should not experience many symptoms at all.  He felt that the Neurontin I was on would help and he upped my dosage significantly. He also gave me a prescription for Amitriptyline which he said would help with the burning pain and also a prescription for sleeping pills.  I left his office feeling somewhat more optimistic.

My boyfriend Ryan and I had registered the previous May to go to Vegas with me running the full marathon and him the half.  I had to cancel the marathon and was so upset. I felt like my life was crumbling around me.  The sleeping pills helped somewhat and I began to get around 6 hours of sleep at night. The medication did start to kick in and I was getting spells of relief.  I found that if I kept my feet ice cold it helped ease the pain.  I did not really leave my house so I kept frozen packs to use on my feet.  At night I would get up six to eight times a night to soak them in cold water or apply the ice.  I spent my days on the couch with my feet up.  I can honestly say that it was the lowest point in my life.  I was still reeling from being diagnosed with diabetes, had two eye surgeries to remove cataracts and was now in the most pain I could imagine.  Ryan and I decided that although I could not run in Vegas we would still go, I needed to get out of the house.  The plane ride was difficult as my feet hurt a lot, but I am glad that we went.  I wore sandals everywhere and spent a lot of time with my feet up.  For the first time in a long time I started to laugh again!  I did have some very frustrating moments, particularly at night, and cried many, many a tear alone in the bathroom. 

Slowly things began improving and I no longer had to apply the ointment every day.  By January, 2012 I was able to go for some walks and had a couple of pain free hours a day.  I had to continue icing my feet regularly and could not wear closed toe shoes.  I returned to work part-time on February 6, 2012 and had my trusty ice packs at work to get me through.  Work was very understanding and accommodating and they even got me a fancy foot stool for under my desks.  As time went on I noticed that I did not have to ice my feet as much and was sleeping better and better. At the end of February, 2012 I returned to full-time work and started to try and run again.  I cried the first time I did a 5km run with relatively no pain.  I began to see a Naturopathic Doctor and they put me on a regimen of different vitamins to help my nerves heal.  I also had 6 acupuncture treatments and can honestly say that they helped.

It is now almost June, 2012 and I am happy to say that things are so much better now.  I have been able to wean off the Neurontin and am down to 600mgs a day from 2,800mg.  I really have not enjoyed being on the Neurontin as it resulted in unwanted weight gain and terrible acne. I still take the Amitriptyline as it keeps the burning at bay.  I do suffer with some burning each day but can deal with it.  On the bad days I keep them as cold as I can. I still wear sandals everywhere I go to keep my feet cool.  I plan on sticking with my vitamin regimen and can honestly say that exercise helps.  The doctors cannot guarantee that I will ever go back to how I was, but compared to where I was not long ago I am a happy camper!  I cannot help but wonder what would have happened if they would have brought my sugars down slowly instead of rapidly.  Would I have suffered with this debilitating condition?  I get angry but have to remind myself that what is done is done, there is nothing I can do to change it.  I feel like I went from being the lowest I have ever been to almost my old self.  And for that I am thankful!!

8 comments:

  1. HOLY SNAP! I have very few words here.... I cannot express how hard this was to read and I barely even know you! You are one tough chick. You've gone through more than any diabetic I know. I can only hope your road continues to improve.

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  2. Thanks Scully! Looking back when it was at its worst, I am not really sure how I made it out alive, lol. I hope that my story can help others that may suffer with this and reassure them that it will get better.

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  3. Hi, Jocelyn! You, my dear, are so brave. You've been through the ringer and back, but you've taken the time to put your story out there to help others. I admire this so much. I know how much it helps to know that you are not alone when going through difficult health challenges.

    I just hope that you continue to feel better and better. Know that you have lots of love and support, even during those moments of tears alone in the bathroom!

    Your sorta sista,
    Kristyn XXXOOO

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  4. Dear Jocelyn (Alberta girl),
    My name is Esther I am 26 years old and I’m from London. In late June I was diagnosed with type 1 diabetes after recovering from being in DKA . While recovering at home I noticed a strange painful stinging sensation in my feet. This then escalated into excoriating pain. I couldn’t walk nor stand and could only wear sandals on my feet. That evening I went to an emergency doctor’s surgery and was prescribed tramadol. This helped for the next few days but the pain still persisted.
    My mother had read about insulin neuritis online and we agreed that the symptoms that I have match the description of insulin neuritis. However it took a while to get diagnosed as insulin neuritis is so rare.
    Finally I was reassured by a neurologist who had seen it before. He explained that my blood had been full of sugar almost like syrup and now my nerves had to adapt to controlled sugar levels. He recommended that I purchase a tense machine and prescribed versatis 5% medicated plasters to help with the pain. I had recently started taking pregabalin and was increasing the dose. He said that the amount of time it would take to get better depended on the individual but it could take weeks to months.
    Over the next few weeks I was still in a lot of pain. The pain had spread across my body through my legs, upper arms and head. After a month on full dose pregabalin I decided it wasn’t working enough. I went to my family doctor who suggested duloxitine which has helped a bit but I do still have a lot of burning pain.
    I wanted to thank you for sharing your experience of insulin neuritis. There is not much information about insulin neuritis online especially about people’s experiences. I have been feeling depressed and at times have been crying almost every day but your story has given me hope that eventually one day I will recover and the pain will stop.
    Your stories of completing triathlons have been an inspiration as I used to be a runner and wonder if I can run again now that I’m diabetic. I hope that I can and will need to manage my diabetes along the way like you have.

    Keep posting and best wishes!

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  5. Hello Jocelyn,

    I hope you are well almost 5 years on form being diagnosed and you're having a great quality of life.

    I just Googled "insulin neuritis" and this came up on the first page of results. After reading your experience I can tell you I had the exact same experience word for word with a few minor adjustments when I was diagnosed in January 2013. However, words cannot express how it’s the most horrible thing anyone can endure, you are a tough chick indeed. It took around 9 months to recover and get back into work.

    It’s also incredible how undocumented and rare this condition is. I too wonder what would have happened our sugars were brought down slowly after diagnosis.

    I still get a little bit of tingling in the lower legs and impotence, but it’s getting better slowly.

    All the best.

    Brad

    Melbourne, Australia

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    1. Sorry, I should have said 4 years :)

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  6. Hi Jocelyn, my name is Darian.
    Ever since the beginning of July I've been suffering from excruciating pain. It took the doctors almost 3 months to figure out and semi-diagnose me with Insulin Neuritis. It's been extremely hard for me due to the fact I can't do any if the things I love to do. Today the doctor came in, after doing lots of reading last night, and talked about it with me and then showed me this blog she found, which was yours. It's just reassuring to find someone else who was going through the same thing as me . It's the worst thing ever and I wouldnt even wish it upon my worst enemy. I'm feeling a lot better emotionally after reading your blog and seeing that it does get better after a while.
    Thanks you so much,

    Darian.

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  7. Hello Jocelyn. My name is AJ and I too have just started this arduous journey. Your blog has definitely given me hope. I just had a question for you if you don't mind. When you where diagnosed with "insulin neuritis" were you taken off insulin altogether and then started back
    on a lower dose so your glucose came down more slowly? I don't think my Doctor knows exactly what to do here so was curious what your course of action was. Thank You

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