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Hi I wanted to write a little bit about my experience with insulin neuritis since the information on it is very lacking it seems. I am 19 years old and have been a type 1 diabetic since I was 13. After around a year or two of very good control I started to go down hill and not take my health as seriously as it should be taken. A mixture of stress from high school and resentment of being different and having all the added responsibilities that came with my diabetes, I ran high blood sugar 90% of the time. Finally in the end of 2013 when I was 18 I realized I am not going to be able to move on academically or in general if I am not in good control over the disease. By March 2014 I got my a1c down from 13 to 9. This was accompanied by very severe leg cramps (started in mid-February). I went to the doctor multiple times explaining I couldn't sleep more then 2-3 hours at a time and walking was difficult because of the cramping. My mother could even feel the intense cramps when she touched my legs. The doctor thought it was to do with perhaps a vitamin b deficiency. I tried taking vitamins but nothing helped. In April I began noticing a tingling in my feet and would see that my feet would go very red from time to time. I didn't think too much of it. While this transition was happening I also did not have any appetite whatsoever which is very weird for me haha. I am small to begin with but at about 5'4 I dropped 10-15 lbs going down to 105lbs. This was obviously very alarming to me and my family. My mom was convinced I had a eating disorder but I tried to explain my experiences and feeling very off for quite some time. Though it was hard to explain when the doctor kept seeing nothing whatsoever in my blood tests. In late April the tingling sensation evolved into a VERY SEVERE pain where I would sleep about 2 hours a night and be screaming the other 22 hours in the day. I finally began begging my parents to take me to emergency which is not something I would ever think of myself doing (not a big fan of hospitals). For the first month I was diagnosed and treated for cellulitis which most doctors found very odd because it was in both feet. Through multiple attempts it was obvious that nothing was helping and it wasn't cellulitis. After multiple blood tests, nerve tests, X-rays, specialists, etc. the endocrinologist finally approached with the idea of "insulin neuritis." After explaining to me what it is was and the cause of it...I was sure that it was what I had. Many doctor visits and a few hospital stays later and I am still working on recovery as we enter 2015. The pain was so horrible in the beginning I was on VERY high doses of hydromorphone. Since then I have also been on lyrica, cymbalta, medicinal marijuana, neurotrypaline, slow release hydromorphone. For those of you who may be going through this I will tell you t does get a whole hell of a lot better. For the first month or so (may-June) I had to wheelchair to the bathroom, couldn't remember what day it was because of the medication and could barely sleep literally every night from pain. Now I am waiting to go back to university in January and experience more manageable pain usually only at night time and early morning. I am working on cutting down medication which has proven to be a challenge on its own ( especially the hydromorphone). I have also found a TENS machine to be a huge help in distracting myself from the pain when it arises especially at nighttime. For any of you thinking about a tens machine I suggest getting a higher end one because I can promise you it does make a difference (look for one around 100-120$).

I still have days where I think 'how can it still get this bad.' But I try to remind myself (and so do my parents) of what it was even a month ago. I am now going out with friends on a regular basis and actually enjoying myself which is a big difference from the beginning of the year. My blood sugar is mainly good though with pain it is much more difficult to control. My last a1c was 7.3which my doctor was pretty impressed with considering he knows the struggles I have with highs and pains.

My advice to anyone who may be entering this situation is to print out and bring a few resources about the disease to the doctors with you as you have probably figured out it is not all that common. I was the first case that my endocrinologist has ever seen and my previous diabetes doctor had never heard of it. Walk as much as you can because it does help but I understand it can be challenging and the condition is very very draining both emotionally and physically. Medicinal marijuana oil helps a lot

(MODERATOR NOTE: Marijuana/cannabis is still illegal in most U.S. states, and in many other nations. Therefore, this Forum cannot endorse the use of marijuana/cannabis in any form.)
 

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Hi I wanted to write a little bit about my experience with insulin neuritis since the information on it is very lacking it seems. I am 19 years old and have been a type 1 diabetic since I was 13. After around a year or two of very good control I started to go down hill and not take my health as seriously as it should be taken. A mixture of stress from high school and resentment of being different and having all the added responsibilities that came with my diabetes, I ran high blood sugar 90% of the time. Finally in the end of 2013 when I was 18 I realized I am not going to be able to move on academically or in general if I am not in good control over the disease. By March 2014 I got my a1c down from 13 to 9. This was accompanied by very severe leg cramps (started in mid-February). I went to the doctor multiple times explaining I couldn't sleep more then 2-3 hours at a time and walking was difficult because of the cramping. My mother could even feel the intense cramps when she touched my legs. The doctor thought it was to do with perhaps a vitamin b deficiency. I tried taking vitamins but nothing helped. In April I began noticing a tingling in my feet and would see that my feet would go very red from time to time. I didn't think too much of it. While this transition was happening I also did not have any appetite whatsoever which is very weird for me haha. I am small to begin with but at about 5'4 I dropped 10-15 lbs going down to 105lbs. This was obviously very alarming to me and my family. My mom was convinced I had a eating disorder but I tried to explain my experiences and feeling very off for quite some time. Though it was hard to explain when the doctor kept seeing nothing whatsoever in my blood tests. In late April the tingling sensation evolved into a VERY SEVERE pain where I would sleep about 2 hours a night and be screaming the other 22 hours in the day. I finally began begging my parents to take me to emergency which is not something I would ever think of myself doing (not a big fan of hospitals). For the first month I was diagnosed and treated for cellulitis which most doctors found very odd because it was in both feet. Through multiple attempts it was obvious that nothing was helping and it wasn't cellulitis. After multiple blood tests, nerve tests, X-rays, specialists, etc. the endocrinologist finally approached with the idea of "insulin neuritis." After explaining to me what it is was and the cause of it...I was sure that it was what I had. Many doctor visits and a few hospital stays later and I am still working on recovery as we enter 2015. The pain was so horrible in the beginning I was on VERY high doses of hydromorphone. Since then I have also been on lyrica, cymbalta, medicinal marijuana, neurotrypaline, slow release hydromorphone. For those of you who may be going through this I will tell you t does get a whole hell of a lot better. For the first month or so (may-June) I had to wheelchair to the bathroom, couldn't remember what day it was because of the medication and could barely sleep literally every night from pain. Now I am waiting to go back to university in January and experience more manageable pain usually only at night time and early morning. I am working on cutting down medication which has proven to be a challenge on its own ( especially the hydromorphone). I have also found a TENS machine to be a huge help in distracting myself from the pain when it arises especially at nighttime. For any of you thinking about a tens machine I suggest getting a higher end one because I can promise you it does make a difference (look for one around 100-120$). I still have days where I think 'how can it still get this bad.' But I try to remind myself (and so do my parents) of what it was even a month ago. I am now going out with friends on a regular basis and actually enjoying myself which is a big difference from the beginning of the year. My blood sugar is mainly good though with pain it is much more difficult to control. My last a1c was 7.3which my doctor was pretty impressed with considering he knows the struggles I have with highs and pains. My advice to anyone who may be entering this situation is to print out and bring a few resources about the disease to the doctors with you as you have probably figured out it is not all that common. I was the first case that my endocrinologist has ever seen and my previous diabetes doctor had never heard of it. Walk as much as you can because it does help but I understand it can be challenging and the condition is very very draining both emotionally and physically. Medicinal marijuana oil helps a lot
Oops press sent to early. As I was saying marijuana oil has helped me a lot but can cause you to act a bit off and I have forgotten a lot from when I was taking it. In terms of medication unfortunately at the beginning I don't think I could have made it through with out some form of morphine. As much as I hate to be on it and as rough as it is to get off now, I believe it helped me so much get through the toughest parts that unfortunately it was worth it in my case.

I hope sharing my experience helps someone go through this terrible condition just that much better then what I had to endure. And if you can find someone to squeeze and rub your feet you better be really nice to them because you will be asking for their help a lot! ( my mom has taken on this role as my own personal foot masseuse). Also dipping feet in cold bath water or using ice bags does help relieve the pain somewhat and keeping your feet elevated when you sleep (still keep three pillows under my feet and unable to cover them with blanket).

Thanks for taking the time to read my story. I am doing better but still have a long road to go. Attending the pain clinic I have learned that it can take up to 2 years for nerves to heal.

Oh and also one explanation for this condition that I have been told is:
When you have high blood sugar your blood runs as if it were like syrup so it is slower and doesn't it all the nerves like it does when your blood is in normal range and its usual consistency. So when your a1c drops and all of a sudden your blood is circulating much better and faster then before it hits nerves that have been used for so long. When these nerves wake up they become overactive and sensitive as they have been dormant until that point. Unfortunately the waking of these nerves is extremely painful and uncomfortable, but that's a somewhat explanation of what's happening in your body to cause the pain, swelling, heat and redness.

(MODERATOR NOTE: Marijuana/cannabis is still illegal in most U.S. states, and in many other nations. Therefore, this Forum cannot endorse the use of marijuana/cannabis in any form.)
 

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Welcome rickeay! I am sad that you have gone through so much. But I am glad you are seeing substantial improvements!

Can you share with us what you have done to reduce and stabilize your blood glucose so much? (I am glad for that too.)

Please join our discussions.

Again, welcome
 

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Thanks for the welcome. I am proud that I have come this far and truly want to become part of the community with my fellow diabetics.

In terms of lowering my blood sugar levels, I think the number 1 thing I have changed is testing. Although it can be inconvenient, it is so important to test, test, test! I test often 4-7 times a day. This way I am able to do a correction bolus for any highs that may occur.
I also have become more comfortable and lenient with estimating carbs. Before I was so paranoid of not knowing the exact number of carbs in my food to the point that I would either give up (not take insulin) or get upset (stress = high blood sugar). Now I try and remind myself even if I am off by 20 carbs the worst thing that can happen is I have to do a correction bolus a few hours later. Or have to eat a few jujubes to make up for the extra insulin I may have given (if I overestimate).
To be honest as a teen I don't always eat the right amount of veggies and fruits I am supposed to and such. I allow myself to enjoy the foods that my friends are eating and such. So diet wise I haven't made too much of a change to aid me in bringing my a1c down (though I try to eat a bit more on the healthier side then I was).
The hardest part is the beginning. You have to just make the habit of testing, bolusing and putting your health first. Once you make these habits it becomes second nature and your body begins responding to highs more; Telling you that this is not what your body wants. Before I could be high all day and I felt relatively fine. Now I get above 12 and I know something is wrong. My appetite and eating habits are much more normalized. I can finally feel (most of the time) when I am full and don't feel the need to binge on junk food.

Health is so precious and should never be taken for granted. I am so thankful for what I have, including my diabetes. It took a while to learn this lesson but I finally have and hope all other diabetics know or learn this as well :)
 

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Most of us find that fruit spikes us to the skies.

Most of us work to keep our levels under 140 at all times, because that is where organ and nerve damage begins. My personal goal is under 115.

I am Type 2, but on insulin. I try to avoid boluses altogether. When I succeed, I feel better.

Here are 3 links on food and diabetes that many of us find helpful:


Please check 'em out!
 

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Rickeay? I understand that where you are now is umpteen miles from where you were before, but I want you to understand that what you're doing now in managing your diabetes still has a ways to go, and I hope you'll fine tune your 'habits' before they get too ingrained. Yes, health is precious, and there's nothing like diabetes complications to show us just how precious. Taking it for granted is the worst mistake we can make.

Even as a type 1, it's as Shalynne says - fruits and other high-carb foods are not good choices for diabetics, even though you can try to cover with insulin. Do please visit the links she has given you and study how you can best implement these in your own life.

We would like to see you succeed physically where you have succeeded mentally/emotionally. It can be done, and we can help you acquire the correct tools.
 

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It's Ricki :)

Thanks for the words of advice. I do understand I have a ways to go but at this point with my progress, my blood sugar being in range 4-8 about 80-90% of the time, and how impressed my endocrinologist is, I believe I am doing very well. I have made mistakes and I am making mistakes, but I am not going to just solely focus on all the things I need to change at this point.
Recovering from my nerve condition my endo even suggested I try and raise my a1c for the time being just to let me body balance it self out in a more timely fashion. I have chosen to keep my targets where they are and work towards an a1c between 6-8%.
I know especially as I get older I will need to be more careful about high carb foods and such but even now I limit my self quite drastically when it comes to candies, chocolates etc. compared to the diets of my friends. Diabetes is a very hard thing to handle at my age when there is a lot of peer pressure and such so I don't look to strive towards perfection at this point. I strive for progress and that is what I have been doing and will continue to do.

Thanks again.
 

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As stated above, I understand where you're coming from and where you are now. I have a niece who was diagnosed before her first birthday and is now 16yo, and already worn out a coupla/three pumps. She may have it better than you, having never had a life that she can remember before diabetes.

It truly is a tough life for a youngster, just like it is for all of us. Young people don't have a corner on wanting to fit in and be accepted in the gang. But your primary focus needs not be fitting in with your friends/comparing yourself to others, but avoiding crippling complications. Irreversible complications like blindness and renal failure.

'As you get older' is an entirely subjective time, and believe me, I've spent the last 69 years looking ahead to the time when I get 'older', and I'm not there yet. You must live in the now and take care of yourself to the best of your ability now.
 

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I did a lot of reading (I am surprised by how few studies have been done on insulin neuritis). It does appear the pain comes from inappropriate and dysfunctional physical changes your body made during that initial BG drop. As you say, the good news is your body is now in process of either repairing the changes it made or dropping them and making new, better changes.

Given that, I understand your decision to hold where you are and give your body time to make and stabilize the changes.

I hope you will study the links we provided and join our discussions. The time is coming when you are in a position to resume - gradually and incrementally - lowering your BG. The more you know, the better prepared you will be to lower/stabilize your BG and truly take control of your life.

Health first.

Yes. We all have to think that way. And it is a danged good idea to learn enough about our individual health needs (and I am not just talking about diabetics) that, when we take some action, eat some food, do some exercise we truly know it is best for our own personal body.

I encourage you to pay especial attention to the Eat To Your Meter testing protocol that permeates BloodSugar101 (fasting first thing in the morning, pre-meal, at least 1 and 2 hours after first bite, and just before bedtime). This protocol is a wonderful guide to learning how you react to different foods, how your body processes said foods. It has certainly taught me a lot of things I never suspected about myself.

References I found interesting and informative
Arterio-venous shunting and proliferating new vessels in acute pain... - PubMed - NCBI

Treatment-induced neuropathy of diabetes: an acute, iatrogenic comp... - PubMed - NCBI

Treatment-induced neuropathy of diabetes: an acute, iatrogenic complication of diabetes | Brain
 
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Hi Ricki. I have type 1 diabetes and have since I was 21 months old. I have had diabetes for 45 years and I know what it is like growing up and being 'different'. I have always had what is considered 'good' control of my BG. My highest a1c in the past 20+ years has never gone above a 6. In high school, my a1c was usually between 7-8. I know now, these numbers were too high. I have had some minor complications and that was with a1c's near the ADA recommended 7. My a1c, for the past 2 years is now always in the 4's, last one being a 4.8. All of these 'mistakes ', where you go above 130-140ish cause damage. All of your symptoms are from high blood sugars. It is hard to have totally perfect BG when using insulin, but it can be done. I highly suggest reading Dr Bernstein's Diabetes Solution. Even if you do not want to follow his advice 100%, it will truly teach you how to manage your BGs. He is a Dr with type 1 diabetes. If you have any questions, there are plenty of people here who can help. Good luck.

Sent from Tony's iPhone
 

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Hi, Ricki! I just want to add to the welcome. I haven't been here long, but these people have a lot of good advice and experience, so I encourage you to follow up on the links they are giving you. It sounds like you've been through a lot of suffering, and I hope that is all in the past. Keep in touch here, and you will find lots of support. Hang in there!
 
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