The Diabetes Forum Support Community For Diabetics Online banner

1 - 19 of 19 Posts

·
Registered
Joined
·
1 Posts
Discussion Starter #1
Hi, I have ben a type one diabetic for 40 years and have done pretty well. The only thing it has stopped me doing was joining the Army and piloting an aeroplane!

But my daughter has just (3 months) been diagnosed as Type 1 diabetic.

She is 17 and her blood tests are quite good, ranging from 5.4 to 8.7.

Over the last 6 weeks or so she has started to suffer with a constant tingling feeling on the underside of her feet. This has now spread to the whole of her foot. She has had nerve conduction tests on her feet and this has substantiated the diagnosis of Insulin Neuritis. This is very different from Diabetic Neuropathy, and the 2 are often seen as one issue!

This is keeping her awake at nights. From our research we have found that this condition can be brought about by her blood sugar levels being brought down too fast after diagnosis.

Has anyone else come across this and any ideas on what to do or how to help.
 

·
Registered
Joined
·
24,394 Posts
Hello Chris . . . I honestly don't have a clue about this problem, but I'm very pleased that you've joined us because there are very wise & knowledgeable members here who have great experience, and are happy to share it.

And when your daughter reaches age 18, I hope she'll want to join us too. Tell her we're pulling for her already.

Take care & visit us often.
 

·
Registered
Joined
·
2,771 Posts
Hi, I have ben a type one diabetic for 40 years and have done pretty well. The only thing it has stopped me doing was joining the Army and piloting an aeroplane!

But my daughter has just (3 months) been diagnosed as Type 1 diabetic.

She is 17 and her blood tests are quite good, ranging from 5.4 to 8.7.

Over the last 6 weeks or so she has started to suffer with a constant tingling feeling on the underside of her feet. This has now spread to the whole of her foot. She has had nerve conduction tests on her feet and this has substantiated the diagnosis of Insulin Neuritis. This is very different from Diabetic Neuropathy, and the 2 are often seen as one issue!

This is keeping her awake at nights. From our research we have found that this condition can be brought about by her blood sugar levels being brought down too fast after diagnosis.

Has anyone else come across this and any ideas on what to do or how to help.
Hello, I have never heard of Insulin Neuritis. I do understand diabetic neuropathy, I have it in both feet and my left hand. I tried to do a web search of Insulin Neuritis and there is not much written. Good luck and I hope your daughter can find some help with her pain.
 

·
Registered
Joined
·
221 Posts
Hi, I have ben a type one diabetic for 40 years and have done pretty well. The only thing it has stopped me doing was joining the Army and piloting an aeroplane!


But my daughter has just (3 months) been diagnosed as Type 1 diabetic.

She is 17 and her blood tests are quite good, ranging from 5.4 to 8.7.

Over the last 6 weeks or so she has started to suffer with a constant tingling feeling on the underside of her feet. This has now spread to the whole of her foot. She has had nerve conduction tests on her feet and this has substantiated the diagnosis of Insulin Neuritis. This is very different from Diabetic Neuropathy, and the 2 are often seen as one issue!

This is keeping her awake at nights. From our research we have found that this condition can be brought about by her blood sugar levels being brought down too fast after diagnosis.

Has anyone else come across this and any ideas on what to do or how to help.
I am sorry to hear about your daughter's diagnosis. I have never heard of insulin neuritis but almost sounds like an allergic reaction to the insulin. What insulins is your daughter using? Maybe adjusting her insulin ratios to allow for higher numbers might help, but I don't know.
I did find this link however. Acute Painful Neuropathy (Insulin Neuritis) in a Boy Following Rapid Glycemic Control for Type 1 Diabetes Mellitus ? J Child Neurol
which states a case of a boy having the same problem and what was done.
I hope your daughter feels better soon. Neuropathy is quite painful so I am sending your daughter a lot of hugs.
 

·
Registered
Joined
·
2 Posts
Insulin Neuritis Sufferer

Hi, I have ben a type one diabetic for 40 years and have done pretty well. The only thing it has stopped me doing was joining the Army and piloting an aeroplane!

But my daughter has just (3 months) been diagnosed as Type 1 diabetic.

She is 17 and her blood tests are quite good, ranging from 5.4 to 8.7.

Over the last 6 weeks or so she has started to suffer with a constant tingling feeling on the underside of her feet. This has now spread to the whole of her foot. She has had nerve conduction tests on her feet and this has substantiated the diagnosis of Insulin Neuritis. This is very different from Diabetic Neuropathy, and the 2 are often seen as one issue!

This is keeping her awake at nights. From our research we have found that this condition can be brought about by her blood sugar levels being brought down too fast after diagnosis.

Has anyone else come across this and any ideas on what to do or how to help.

Dear Chris,

I suffer from this painful condition. I was newly diagnosed at age 22 and almost immediately got my sugar under control. My first A1C concluded my previous levels to have been in the range of 500-600. As a result of bringing the levels down so rapidly my pain arrived and changed my life drastically. I have been on several extremely potent pain medications in the 4 years since then but my pain persists. I no longer take the same amount of medicine, but my pain follows me all the time. You MUST find a neurologist with knowledge of the disease because others will NOT know how to accordingly treat it. This will take considerable time to get used to. I had just begun my final year in university and had to withdraw from school on medical leave. I finally completed my degree two years later, but i wish I had given myself more time to understand and cope with the pain. The most important thing is how your daughter feels. At her young age there must be myriad things she hopes to do; the last one would be to stay at home with foot pain. I cannot stress that learning to live with the pain takes time and that it should come before anything else. In addition to the medicine, the only natural thing that ever really helped to alleviate it was my mother rubbing my feet. I should say squeezing them as opposed to rubbing. I liken it to a dog chewing on a bone to put pressure on its painful teeth. Also, the "isqueez foot massager" (I purchased it form American retailer Brookstone) is something that mimics the previous action and I wish I had bought it the day I was diagnosed. It makes all the difference in the world to press a button and be relieved. It is expensive but worth every penny to me and can also be purchased second hand on craigslist much cheaper. I hope this post reaches you because this is a difficult pain to live with, made worse by the lack of awareness. Please contact me with any questions as I would do anything in my ability to help someone with the same problem.
 

·
Registered
Joined
·
2 Posts
contact

Chris, I forgot to include a way to reach me. Just respond in this thread. I live in the US. My name is Nick. I wish your daughter the very best and please do not hesitate to call if she has any question, no matter how seemingly insignificant.
Regards,
Nick
 

·
Registered
Joined
·
298 Posts
I have some of the same symptoms....and my a1c dropped from 11.4 to 5.1 in 3 months with the help of insulin. I'm on gabapentin for the pain which helps me get through the day but doesn't really help me at night. I'm up every couple of hours. The one thing I have found that helps with the pain in soaking them in cool water....and some times massaging them.

I hope your daughter finds relief.
 

·
Registered
Joined
·
6 Posts
Hi, I suffered from this (Acute Painful Neuropathy) in my early 20's after rapid stabilisation of my BSLs. The pain was in my legs, lower back, abdomen and hips. It took 3 months, 4 endocrinologists, 3 neurologists, multiple other specialists and loss of a third of my body weight before I got a diagnosis. So just be aware that not all doctors are familiar with this subtype of diabetic neuropathy.

The good news is that in most cases (not all) it will resolve itself. Mine was greatly improved after about 8 months. But getting sufficient relief from the severe pain can be a struggle with the various health professionals.

I went through the full gambit of medications; the anticonvulsants (gabapentin/lyrica), tricyclic antidepressents, Mexitil etc etc. But I really don't know how I would have coped if I hadn't finally found a pain doctor who was willing to prescribe me opoids as well. They were understandably very cautious about doing so due to my age and perceived "chronic" nature of diabetic neuropathy. But my argument was always that this was a severe and acute form of neuropathy and so I really pushed hard to get sufficient pain relief. I also found Mersyndol very good at night as it reduced the number of times I was waking up with the pain due to it's sedative effects. It was difficult to come off the opoids after the 8 mths, but (for me) it was worth it. Obviously if the non-addictive medications give enough relief it's better to stick with those.

Anyway, hope her pain has improved since you posted.
 

·
Registered
Joined
·
20 Posts
I am fascinated by this discussion! After having diabetes for 25 years, 3 years ago I got an insulin pump and my A1C levels dropped DRASTICALLY. And FAST! Ever since I have had the weirdest symptom. (I do suffer from the typical neuropathy as well). I am wondering if this could explain it.
It is a prickly heat sensation but it moves around in my body. There is NO area it doesn't go, although usually sticks to one or two areas at a time. It (typically) only happens after I lay down at night. The docs keep saying they don't know what it is and give me a sleeping pill to get relief.
Does this sound at all like what you are talking about? I've tried to think of everything from what I am eating to drug reactions but no one can explain it.
Would love more insight if anyone has it.
Thanks!
This Forum is helping already and I just signed up last night!
 

·
Registered
Joined
·
2 Posts
Hi, I have ben a type one diabetic for 40 years and have done pretty well. The only thing it has stopped me doing was joining the Army and piloting an aeroplane!

But my daughter has just (3 months) been diagnosed as Type 1 diabetic.

She is 17 and her blood tests are quite good, ranging from 5.4 to 8.7.

Over the last 6 weeks or so she has started to suffer with a constant tingling feeling on the underside of her feet. This has now spread to the whole of her foot. She has had nerve conduction tests on her feet and this has substantiated the diagnosis of Insulin Neuritis. This is very different from Diabetic Neuropathy, and the 2 are often seen as one issue!

This is keeping her awake at nights. From our research we have found that this condition can be brought about by her blood sugar levels being brought down too fast after diagnosis.

Has anyone else come across this and any ideas on what to do or how to help.
Hello, I just got diagnosed with this condition. I have been diabetic for eight years, but I was unable to get good control of my BG. About two years ago I lost a lot of weight and feeling a lot better, so I thought I had a better control of my BG. During the past year, between changing doctors, not checking my BG regularly and having a false sense of well being, my condition got worse. When I finally found a doctor, my A1C was 15 and he immediately started me on insulin. After starting insulin, two weeks later I started feeling a burning sensation on the bottom of my right feet that woke me from my sleep. After that the pain got progressively worse, that I felt also stabbing pain on my legs, soreness along with the tingling burning sensation on both of my feets.

It took one foot doctor, two endocronologist, three neurologist and two and half months later for me to get the proper diagnosis - Painful diabetic neuropathy, insulin neuritis due to the sudden drop of my BG. It was the last neurologist that properly diagnose the condition and he told me that because my BG dropped from 15 to 7 due to the insulin therapy, I developed the painful neuropathy. He also mentioned that there's no immediate cure, but only maintaining my BG under control, in time the pain should go away (six to twelve months). He gave me Lyrica to cope with the pain, but it has not alleviated my pain. Fir me the pain is so intense, that it does not let me sleep (average sleep is two-three hours), making it very difficult to function during the day, so much so that I had to take a medical leave from work.

Currently I started acupunture treatment (my second session) and I will let you all know how that's helping me.

The biggest help you can give her is emotional support, since the pain can be overwhelming, and help her maintain her BG under control, not only through insulin therapy but also through her diet (I learned that the hard way!!).
 

·
Registered
Joined
·
710 Posts
The condition you're describing sounds quite debilitating. I wonder if accupuncture would be helpful as an adjunct treatment.

Jen
 

·
Registered
Joined
·
6 Posts
Hello, I just got diagnosed with this condition. I have been diabetic for eight years, but I was unable to get good control of my BG. About two years ago I lost a lot of weight and feeling a lot better, so I thought I had a better control of my BG. During the past year, between changing doctors, not checking my BG regularly and having a false sense of well being, my condition got worse. When I finally found a doctor, my A1C was 15 and he immediately started me on insulin. After starting insulin, two weeks later I started feeling a burning sensation on the bottom of my right feet that woke me from my sleep. After that the pain got progressively worse, that I felt also stabbing pain on my legs, soreness along with the tingling burning sensation on both of my feets.

It took one foot doctor, two endocronologist, three neurologist and two and half months later for me to get the proper diagnosis - Painful diabetic neuropathy, insulin neuritis due to the sudden drop of my BG. It was the last neurologist that properly diagnose the condition and he told me that because my BG dropped from 15 to 7 due to the insulin therapy, I developed the painful neuropathy. He also mentioned that there's no immediate cure, but only maintaining my BG under control, in time the pain should go away (six to twelve months). He gave me Lyrica to cope with the pain, but it has not alleviated my pain. Fir me the pain is so intense, that it does not let me sleep (average sleep is two-three hours), making it very difficult to function during the day, so much so that I had to take a medical leave from work.

Currently I started acupunture treatment (my second session) and I will let you all know how that's helping me.

The biggest help you can give her is emotional support, since the pain can be overwhelming, and help her maintain her BG under control, not only through insulin therapy but also through her diet (I learned that the hard way!!).
This is really unacceptable that they are not dealing with your pain effectively. The sleeplessness was the worst thing I have ever been through in my life. It was HELLISH. Push hard for additional options apart from lyrica for the break through pain.

I tried acupuncture, but I was just so oversensitive everywhere, I found it distressing & hence did not get much benefit. I do hope you find some benefit though, and would be interested to hear how your treatment progesses.

I also found that Mersyndol. which is generally used for Migraine's worked well, as it contains an antihistamine which acts like a sedative and kept me asleep through the night. It can leave you groggy the next day though. The active ingredient is doxylamine succinate (DS). Mersyndol also contains codeine & paracetamol. So if you want to steer away from these, I believe there is now a medication that just contains the DS (Restavit?) Not something you want to be on long term, but the continuing argument I had with my doctors was that this type of neuropathy was ACUTE and usually improved after 6-12 months.

I wish you a fast recovery !
 

·
Registered
Joined
·
25 Posts
Help

I was just diagnosed with T1 in May. After about a month of so of taking insulin, I have started to feel this tingly feeling burning shooting pain in both of my feet. I don't understand it as I never felt anything prior to being diagnosed of being diabetic. I'm not sure if this is neuropathy since I was just diagnosed or could it be that I've been carrying the disease but just didn't notice it?
 

·
Registered
Joined
·
6 Posts
I was just diagnosed with T1 in May. After about a month of so of taking insulin, I have started to feel this tingly feeling burning shooting pain in both of my feet. I don't understand it as I never felt anything prior to being diagnosed of being diabetic. I'm not sure if this is neuropathy since I was just diagnosed or could it be that I've been carrying the disease but just didn't notice it?
There are some good articles written in medical journals if you do a search on "acute painful neuropathy". These give a good overview of the symptons and diagnostic criteria. Print and take to your endocrinologist. I went through 3 endos until I found one who was familiar with this complication, which usually follows a very sudden improvement in your bsls. Other typical symptoms seems to be serious sleep disturbance and rapid weight loss - I went from 60 to 40 kg in 2 mths. Nerve conduction studies were inconclusive. Other neuropathies tend to develop long term.
 

·
Registered
Joined
·
1 Posts
Hi, I was diagnosed with type 1 diabetes when i was ten years old, now being 22. For the better part of 10 years, i treated my diabetes pretty bad, never caring about my blood sugars or skipping on my insuling for days. I cant even count how many times i was in and out of the hospital for DKA and dehydration. Just before i turned 20, i decided to get my butt into gear and start taking care of my diabetes. Around christmas 2009, i started waking up during the night in horrible pain. It started getting difficult to go to sleep, i wasnt eating, i was throwing up alot, i got really sick. Between the end of December to the middle of April, nobody knew what was wrong with me. I had gone through every sort of test imaginable. I was told by the doctors that i was just faking it, and i just wanted attention. But one day when they discharged me (for about the 12th time), i got up out of the bed, and just collapsed. They had made an appointment with a well known neurologist and endocrinologist. After going through a slurry of tests with them, it was decided that i had insulin neuritis. I would literally be in bed 23 1/2 hours a day screaming in pain, it was the worst thing i had ever been through. Like others, i was told it would only last about a year, but unfortunately, it appears i still have it. I have been on almost every single narcotic out there trying to figure out a regime that works. I am very resistant to narcotics and other medications, so my doses are very high. I am on 30 mg methadone twice a day, 1600 mg gabapentin four times a day, 90 mg cymbalta once a day, 800 micrograms Abstral sublingual tablets as needed...which is fentanyl, zofran for chronic nausea that i got when this all started, and some other smaller meds. I tried everything that they would usually prescribe for this type of pain, but nothing really helped. Even on this regime, i still have bad days. I lost about 80 pounds in two months, most of it being my muscle. I literally looked like a corpse. One of the things i find that helps is when my dad massages my feet. He is the only one i let touch them. I was mainly affected in my legs, but every once in a while, i would get pains in my lower back and ribs. I have a very dedicated team of specialists who i visit regularly. I still have a long ways to go, but the only thing i can do now is to get on with my life. I had put soooo many things on hold, and am just now starting to pick up where i left off. I hope by now that your daughter has a team of doctors who are educated on what to do with this condition. Whenever i have gone into emerg, or a clinic, they take one look at my medications and treat me like an addict. Which believe me, if i could get by with taking as much as an advil, i would. I HATE being on these medications. I hate what it does to my body, both physically and emotionally. And the withdrawl, i dont even wanna talk about that.

My prayers go out to you and your daughter. This isnt the most enjoyable things to go through, but just remember that it will get better and lt can be managed!

Best of luck!
 

·
Registered
Joined
·
221 Posts
Hello Kristin,
My heart goes out to you. What a terrible nightmare you have endured. I am sending you a whole basket of very "gentle (((hugs))). Just know that you have one more person on your side.
 

·
Registered
Joined
·
2 Posts
Insulin Neuritis in a child/adolescent

Hi there

My heart goes out to your daughter, and to you. I am the mother of an almost 11 year old son, who has lived with type 1 diabetes for 9 years. At the age of 7 he began insulin pump therapy. The results were nothing short of a miracle. His blood sugar control was just incredible - no more debilitating hypos.
However, 2 months later, he began complaining of pain and burning in his feet, especially at night time. Things progressed to the point where he could not walk without assistance, and no pain relief would touch his suffering. We also went through many doctors wanting to psychologically evaluate him, as they thought he was feigning his symptoms. My son used to beg me to take him to the hospital almost every night. It became fruitless taking him as they would always push medications like paracetamol or ibuprofen - medications that don't even touch the sides for this kind of pain.
I began independent research and discovered that many people who have a sudden improvement in glycemic control have developed excrutiating neuropathic pain. I began presenting my findings to doctors - all who agreed that my son was "too young" for this kind of phenomenon to occur, and that it was most likely to be severe growing pains.
To cut a very long story short - my son still has neuropathic pain in his feet, ribs, back and neck. He also experiences sudden and lengthy episodes of pins and needles in his feet and hands. He has been taking 50mg of amitriptyline and 150mg of Lyrica for almost 2 and half years. He is the first child that Pfizer know of who takes Lyrica. (Pfizer are the drug company who sell this drug.) Lyrica didn't take the pain away completely, but it made life more bearable. My son also suffers terrible insomnia as a result of the pain. He cannot bear to be touched - even cotton sheets or socks "hurt" his feet. He seems to have developed an all over sensitivity to everything. Without the pharmacotherapy, I have no idea where we would be right now.
Can I suggest swimming - gentle exercise in a moderately heated pool is perhaps the best exercise for this kind of pain. Walking seems to exacerbate it. I remember one doctor telling me that my son needed to go and "jog around the block a few times to make him forget his troubles." My son couldn't even walk to the bathroom unaided.
Our journey has extremely tough on both of us. My son is homeschooled, as he cannot bear to have shoes on his feet for more than 15 minutes. His level of suffering is nowhere near what it was, which is the light at the end of the tunnel, but it's still a very mediocre life for a young boy. If you would like to know more, I would be happy to share our journey with you. I'm in a hurry right now, but I had to reply briefly (as briefly as I could) because your story reminds me so much of ours.
Stay strong, and I'm here if you need any support.
 

·
Registered
Joined
·
221 Posts
Hi there

My heart goes out to your daughter, and to you. I am the mother of an almost 11 year old son, who has lived with type 1 diabetes for 9 years. At the age of 7 he began insulin pump therapy. The results were nothing short of a miracle. His blood sugar control was just incredible - no more debilitating hypos.
However, 2 months later, he began complaining of pain and burning in his feet, especially at night time. Things progressed to the point where he could not walk without assistance, and no pain relief would touch his suffering. We also went through many doctors wanting to psychologically evaluate him, as they thought he was feigning his symptoms. My son used to beg me to take him to the hospital almost every night. It became fruitless taking him as they would always push medications like paracetamol or ibuprofen - medications that don't even touch the sides for this kind of pain.
I began independent research and discovered that many people who have a sudden improvement in glycemic control have developed excrutiating neuropathic pain. I began presenting my findings to doctors - all who agreed that my son was "too young" for this kind of phenomenon to occur, and that it was most likely to be severe growing pains.
To cut a very long story short - my son still has neuropathic pain in his feet, ribs, back and neck. He also experiences sudden and lengthy episodes of pins and needles in his feet and hands. He has been taking 50mg of amitriptyline and 150mg of Lyrica for almost 2 and half years. He is the first child that Pfizer know of who takes Lyrica. (Pfizer are the drug company who sell this drug.) Lyrica didn't take the pain away completely, but it made life more bearable. My son also suffers terrible insomnia as a result of the pain. He cannot bear to be touched - even cotton sheets or socks "hurt" his feet. He seems to have developed an all over sensitivity to everything. Without the pharmacotherapy, I have no idea where we would be right now.
Can I suggest swimming - gentle exercise in a moderately heated pool is perhaps the best exercise for this kind of pain. Walking seems to exacerbate it. I remember one doctor telling me that my son needed to go and "jog around the block a few times to make him forget his troubles." My son couldn't even walk to the bathroom unaided.
Our journey has extremely tough on both of us. My son is homeschooled, as he cannot bear to have shoes on his feet for more than 15 minutes. His level of suffering is nowhere near what it was, which is the light at the end of the tunnel, but it's still a very mediocre life for a young boy. If you would like to know more, I would be happy to share our journey with you. I'm in a hurry right now, but I had to reply briefly (as briefly as I could) because your story reminds me so much of ours.
Stay strong, and I'm here if you need any support.
I am so glad you shared your son's story with us. That must have been awful to see him suffer in this way and feel at a loss at not knowing what to do for him. My heart does go out to you. I am glad you posted about your son because it does show that this condition does exist and that it can often be dismissed by doctors because it is not often seen or recognized by doctors for what it is. I also post on Children with Diabetes children with DIABETES Online Community and would love to see you over there as well. What an awesome mother you are.
Let your son know that he has another invisible friend in his corner.
 

·
Registered
Joined
·
2 Posts
Thank you so much for your message of support. :)
The diabetes online community has been my saving grace during this journey. My sister-in-law and I wrote a paper about my son which we were very fortunate to have published in an International Diabetes Medical Journal. Many doctors have read it and acknowledged my son's situation - which is such a relief after too many crushing appointments with specialists who doubted that as child could suffer as much as my son indicated to them.
Here is the link for my son's story. Please feel free to share.
**I have just tried to post, however this site won't allow the publication of PDF's or links until I've made 5 posts - but I will certainly share the link after that. ***
I also shared my story at CWD - however, it did spread a lot of fear amongst fellow parents, as I warned against rapid improvement in glycemic control. I asked for the post to be removed at the time. Maybe I will repost when I've had a decent night's sleep. :) Thanks again!
 
1 - 19 of 19 Posts
Top