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).
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.