Insulin neuritis or treatment induced neuropathy

Coping & Support
1

Hi…

I’m starting this new conversation because it seems to be a very rare condition. I had started a prior conversation about this before (Muscle pains and aches - Newly Diagnosed - JDRF TypeOneNation Community Forum).

I’m T1D. Exactly 3 weeks after starting my insulin, I developed pains and aches. At first I thought it was muscular, but after a while and a visit with a rheumatologist, I self-diagnosed myself as having “insulin neuritis” or “treatment induced neuropathy”… it’s basically nerve pain ALL over my body.

It’s now nearly 6 months that I’ve had this condition. There’s no direct treatment for it as far as I could find. Unfortunately, I’m not able to get in touch with anyone who’s experienced or is experiencing this.

Here are the symptoms:

  • it occurs weeks after starting insulin (mine was exactly 3 weeks)
  • it occurs when one’s glucose levels or A1C drop rapidly (I didn’t get my next A1C tested until recently which came to exactly 7.0)
  • pain radiates anywhere in the body (in my case, it’s all below the neck, although I’ve had some minor/temporary aches/pains in the head)
  • weight loss (I was gaining weight during the 3 weeks of no pain, then suddenly lost the weight again, but now I’m regaining it)
  • it feels like the flu, but it’s not muscular
  • it’s accompanied with some nausea and loss of appetite (I’m slowly regaining my appetite)

I’m hoping by posting this topic that someone who’s had this can share their experience (online or offline). It’s a HORRIBLE condition. The pain is constant, all day, every day, and it’s usually worse at night when I can’t get comfortable to go to sleep on ANY side of my body.

I’ve read cases where someone experienced this 3 months, 6 months, or even 1 year. I’m hoping and praying that it’s 6 months for me because the one small silver lining out of this is that I’m regaining the weight I lost AFTER I gained weight when I started the insulin.

Before I was diagnosed with T1D, I weight 125 lbs. After taking insulin for 3 weeks, I gained 20 lbs to 145 lbs. My highest prior weight ever was around 165 lbs. But even then, the pain is still there. The pain is random… there’s no rhyme or reason to it. It can be sharp, dull, radiating, popping, etc. anywhere in my body, including places I didn’t expect. If I rub my skin especially with a cloth, it hurts. The most pain that’s concentrated is in my chest/stomach area where I’ve developed a couple of small muscle spasms due to my body/muscles reacting to the nerve pain.

Here’s the only explanation as to why this is happening to me: I figure I’ve had diabetes for at least 4 years before I got diagnosed. Because the glucose levels were too high for too long, my nervous system got “used” to the high levels. As you may or may not know, the nervous system RELIES on glucose in order to function. So because I’m now in the “normal” glucose range, my nervous system is screaming in pain. My brain, which is the biggest sucker of glucose, is likely sucking up most of the glucose before any is left for the rest of the nerves. That would explain why I lost weight again as well. Just my opinion as no one knows why this is happening or why it’s so painful.

I’ve been so used to the pain for this nearly 6 months that I can’t even tell if my pain is better or worse. It just feels the same.

I’ve tried acupuncture, massage therapy, herbs/supplements, etc. They provide relief, but it’s only as long as the procedure lasts. I’ve been told that there are two drugs (pregabalin and gabapentin) that can suppress the nerves. I’m hesitant because since my condition is rare and the pain is just constant, I don’t want other side effects from those drugs coming up. Maybe I may take them eventually I don’t know, but I’m holding on the hope that because I’m starting to regain my lost weight again, that it means it’s a turning of the tide. Fingers/prayers crossed.

If there’s anybody out there who’s experienced anything I’ve stated above, please reply. Maybe we can set up a separate forum/group for this to help each other.

Thanks for reading this.

-Bill

2

I got nothing on this one. Does you specialist think it might be a formulation such as to a specific brand of insulin? Is this really just a difference in glucose control? Sorry.

3

I switched insulins after a month. It made no difference. I even tried reducing and stopping insulin. Again no difference. It seems to be my body’s way of reacting to the new insulin that I couldn’t produce much anymore and what it does with it.

4

Hi and welcome back. I remember reading your first post a while back and am sorry you haven’t found relief. Sometimes patients do find the correct diagnosis before their doctors do; even so, it’s a good idea to go through process of elimination by exploring other possibilities in order to be sure.
While you can’t be blamed for believing this is a diabetes issue since it started so soon after diagnosis, the timing could be a “red herring” and an unrelated, separate issue. I was diagnosed with diabetes following a short illness (“a bug”) that may have weakened my compromised autoimmune system, leading to the discovery of Type 1. Theoretically your body’s response to diabetes may have opened a gateway to something else, if you’ll allow the analogy.
Have you been checked for fibromyalgia? As you probably know it can be described (very, very, very simply and I’m not doing it justice) as chronic pain. Another possibility that I see online is gluten sensitivity. Apparently it has not been decided if fibromyalgia is an autoimmune disorder but people who have one may be more likely to have another.
While you’ve consulted a rheumatologist, a neurologist might be able to shed some light.
Sorry if I’m suggesting things you tried before. I hope someone is able to point you in the right direction.

5

I have fibromyalgia. I developed it a few years after my diagnosis as diabetic. My A1C has been pretty steady. But it does involve hypersensitive nerves and chronic pain all over the body. I spent years in agony, barely able to move on a good day.

Clinical trials have never shown that acupuncture is any better than placebo. And, being diabetic, I feel I’ve had enough needles in my life.

Gabapentin caused unbearable side effects for me. I felt drugged, foggy, woozy. It didn’t help much with the pain. Pregabalin, however, has been the only thing that’s helped. It brings the pain to mostly manageable levels and allows me to sleep a little better. I know others who have had the exact opposite experience. I’m on the maximum dose I can personally tolerate. Any more, and side effects kick in. Any less, and I’m in too much pain to function. It’s all highly individual.

Talk to a rheumatologist. Better yet, talk to several of them. They’re all a little wacky, each in their own way. If you can, the Mayo Clinic has an excellent program, and they’re open to listening to patients about and discussing “alternative” treatments and collecting anecdotal evidence for things that haven’t had sufficient clinical trials.

I’d be happy to talk about it more if you want.

6

Here’s an update:

At the end of 6 months (last April), I noticed my weight started to go up, but the severity of the pain was the same. As the weeks progressed, the pain seemed to go down little by little. Now it’s nearly 3 months since then and I’ve had a stable weight of >150 lbs and at least 1/2 of the pain is gone. The nausea is gone.

The only thing that relieved the pain was time. I’m glad it was just 6 months. I’ve done acupuncture, therapeutic massage, supplements, herbs/vitamins. They may have provided relief, but only temporary. I still have some neuropathy in my feet and there’s the sporadic shooting and stinging pain. I’m able to go back to work (DoorDash). I did not take any Rx… I was tempted to and thought about it, but then the changes happened.

I realized that moving around helped “quelled” the screaming of the nerve pain in a way. It was hard to move (walking, driving, etc.), but it’s gotten so much better that I’ve practically forgotten what it was like to live with this kind of pain.

I did and do not have fibromyalgia just so everyone is clear. This was indeed insulin neuritis. I self-diagnosed it myself after meeting with a rheumatologist and confirming it with my family DR months later.

My recommendations for anyone suffering insulin neuritis or treatment-induced neuropathy:

  • move around, no matter how painful, keep exercising if you can
  • try a naturopathic treatment (acupuncture, massage, supplements, herbs, vitamins)
  • get support, whether in-house or an outside friend (I had to go through all this alone)
  • know that it won’t last long… some took 3 months, 6 months, even a year… but each week was an eternity, so perspective is key

I’ll be happy to answer any questions for anyone suffering from this horrible but yet “short” condition.