Recently diagnosed T1 having trouble

hi all,i’m 4 and 1/2 months into my diagnosis…i’m a 32 year old male…i was diagnosed in the ICU after having several major generalized seizures,i had a bg of 700 and was in ketoacidosis and my A1C was 14.7

my first A1C post-diagnosis was 7.2…i take 15 units Lantus in the evening and about 10-12 units of novolog daily both by syringe…i feel i have decent control of my diet and insulin regiment

only a week or two out of the hospital i started experiencing severe muscle and joint pain,i feel like i run marathons in hail storms kind of pain.this has been almost constant for months…also soon after diagnosis i started having numbness in my feet this turned into pain in feet legs and groin,severe burning and stabbing feelings CONSTANTLY…

my neurologist has diagnosed me with Peripheral Neuropathy…he did an EMG and has me goin to the lab for 10 panels…B6,B12 some others along with my next A1C and C-Pep

both my Neurologist and Endo are being very evasive when it comes to why i’m having these complications and what i can do about it beside control my bg…is this my body adjusting to insulin thereapy? is this how it feels when your pancreas is honeymooning? is it going to hurt like this forever?

i need to sleep again some day…has anyone gone through this? does everyone go through this? any help would be wonderful,thank you.

It is late spring/early summer… have they checked for Lyme disease? I went through that a couple years ago and migrating “severe joint pain” along with other vague and specific generalized neurological symptoms matched how I felt.

In a newly diagnosed T1, no, they would not generally expect peripheral neuropathy, so of course they’re confused if they’re thinking that somehow complications of diabetes was the cause.

It’s important for us to not assume that everything that happens to us post-diagnosis is automatically some sort of complication of diabetes. Because there’s lots of things that are easy to deal with as long as the docs take off the blinders of “related to diabetes”.

i hear ya about “everything isnt diabetes related…” i’v had so much blood work done and am still going for more.i have been complaining abot this to my neuro,endo and pcp for months…i can only hope one is compitent enough to check…i’ll have to ask,thanx

i read in a few places that neuropathy can develop short term in the beginning of insulin therapy…am i way off on that one?

Boy I feel for you. I have had diabetes for 39 years now. i had neuropathy about 10 years ago and now my pain level is about a 1. Much better. Just with better control. All the meds they gave me for the pain just zoned me out. I couldnt function that way. The nerves can heal themselves but it does take a while. I dont think this is a result of adjusting to insulin, you probably had diabetes a long time, just didnt know. I know you are tired of hearing this but it is all about attitude. Hang in there…

they told me i’v probably been diabetic for a few years.this makes sense because thats when i started losing weight fast…isnt that still a short time to develop neuropathy? why have all these complications kicked in now…post DX? its not just in my head,i had alot of symptoms that i was totally ignoring but i have NEVER felt pain like this…i appreciate the reply,the docs give me gabapentin,soma and klonopin to cope…i still only sleep about two hours a night and can hardly work…they Zone me out pretty good but short term i dont know what else to do.

I didnt mean to imply it was in your head. I know its real. I mean attitude in how you deal with it. It was explained to me that when your blood sugar gets high, your body produces a certain enzyme, this enzyme also attacks the nerves in your body. starting with the smaller ones in your feet, hands and moving up. your nerves are frayed. they do heal though. everyone is different and who know why some get it and some dont.
I know this sounds weird, but I learned a meditation technique that helped me, especially at night. If you focus on your pain in your feet, and your feet separately. really intensely focus on it. then separate the pain from your feet and through it out. It takes a while to get it to work and it does come back, but it helps you sleep. I tried everything as well and this worked for me. For what its worth…

Hey Jackelope

I cannot help you with early-onset complications because I was diagnosed at the age of 2. BUT, I can tell you, that it takes a special doc to test for things that are not diabetes related. I’ve found a good portion want to blame the disease for what ails us and it makes me want to scream. I have to ask, have you recently been put on a drug for cholesterol? They can give you joint & muscle pain if your body can’t tolerate a certain ingredient. I would have to look up allergies to insulin but it sounds reasonable that people can have them. Allergies DO go along with diabetes after all. One other thing, I wonder if dehydration has anything to do with your muscles & joints giving you trouble now? I know you lost all the weight over the last couple years but now your body should be replenishing those liquids rather than losing them. I would imagine this could give you trouble as they try to heal. These are just things that are bouncing around in my head. I wish you good luck! It’s early on but things will/do get better.


Dr. Bernstein mentions a temporary uptick in nerve pain after dropping the A1C from a high level to a normal level. This pain can be thought of as healing pain, as the body works to repair damage. I guess it depends on how long your honeymoon period was (how long you were high but undiagnosed).

I have also been reading about R-Alpha Lipoic Acid, a supplement that is supposed to be very helpful with neuropathy. There are several studies on it. Also benfotiamine, a B vitamin.

Your story sounds so familiar (no seizures, though–I’m sorry you had to go through that). I was diagnosed in DKA, 693–A1C over 15. A few months later, after I was getting back in control, I started getting pains in my feet–as though they were burning up. It was worse at night, which made it difficult to sleep.

I was just glad that running high for however long it was before dx, I hadn’t done worse by my nerves. The pain meant that it was possible that they would heal.

My doctor diagnosed peripheral neuropathy and put me on lyrica. I was on it for about 8 months-ish. At the same time, I was keeping my numbers down and taking alpha lipoic acid, which is an anti-oxident that may or may not help heal nerve damage.

I’m off the meds (and the ALA) now (and have been for over a year), and the pain is basically gone. But when I go hyper, I can feel it in my feet, as though it’s back.

Yep! Been there! Still there! You were probably pretty high blood glucose for some time before your diagnosis and that is why you are having the pains. It will take time but the pain should ease off and possibly you will get some feeling back in the numb bits, but it might take some time.

Unfortunately diabetes does that to you. Has your neuro person not prescribed something for the nerve pain such as Lyrica or Amatryptaline? Lyrica is usually prescribed for epilepsy and Amatryptaline for depression but both are quite good at calming down nerve disturbances as well.

First, as others suggest, make sure they rule out non-diabetes related problems, such as Lyme’s disease. Also, because T1 is generally an autoimmune disorder, it makes you more likely to have other autoimmune conditions (lupus, rheumatoid arthritis, thyroid problems, etc). These all should be ruled out as well.

THAT ALL SAID, any extended period of really high blood sugar can cause complications like neuropathy to develop. If that’s the case in your situation, these should go away once you’ve had an extended period of decent control. When my control wasn’t great, I did start to develop neuropathy that was like you describe. Once my control got better, the neuropathy improved as well. It never totally went away, but lessened to the point where it was barely noticable.

Hang in there.

thank you all so much for the feedback. i’m going out on a limb for my doc’s and the hospital but i’m pretty sure i dont have lyme disease…i was in ICU for 4 days,blood was taken every hour and i was run through almost every piece of equipment they have…it was almost 48 hours before they would officially tell me i was diabetic.

also i take some pretty good vitamin and suppliments but i am still doing more blood work to check…no cholesterol meds and i dont think it’s allergic…i was told it would take at least 6 months to “adjust” but no one mentioned i might be miserable with pain most of the time.

i have read some about ALA and my insurance wont pay for lyrica but i do have gabapentin…i also like to hear that its a “healing pain” and i will adjust,i’m really trying to hang in and even try to see some sort of silver lining…it’s not easy

I see you’re in Arizona. Docs in Arizona are not as likely to know about Lyme disease in the way that, say, the docs in Maryland (a densely wooded state with a lot of deer and deer ticks) are now familiar.

There is a very specific test for Lyme disease which I’m 99% certain your docs would not have run. I would not assume a patient in ICU with DKA in Arizona, they would have inkling that there might be Lyme disease as well. The tests they were running on you over and over again in the ICU were related to blood electrolytes: pH, Potassium levels, managing your electrolytes with IV’s of bicarbonate. They were so busy dealing with your DKA that I’m sure they didn’t run any test for Lyme.

But given my experiences, Lyme disease sounds very consistent with your joint and muscle pain. I was having symptoms that sounded consistent with Lyme encephalopathy but there are other neurological symptoms that sound like they match up with your description of your symptoms very well. Quoting from Wikipedia regarding neurological stuff:

Chronic neurologic symptoms occur in up to 5% of untreated patients.[14] A polyneuropathy that involves shooting pains, numbness, and tingling in the hands or feet may develop. A neurologic syndrome called Lyme encephalopathy is associated with subtle cognitive problems, such as difficulties with concentration and short-term memory. These patients may also experience profound fatigue.[21]

I’m suggesting only out of personal experience not out of professional capacity.

Yes, I was in DKA 30 years ago with two weeks of hospitalization following it. And yes, I had lyme disease three years ago. What he’s talking about, sounds a lot more like my lyme disease.

Incidentally, my DKA experience 30 years ago was bad enough that I had some neurological effects as a result of cerebral edema. So I’m not totally unfamiliar with possible neurological stuff.

I don’t expect Lyme disease in Arizona (where the OP’s from) would be quite as common as for me in Maryland but the symptoms sure sound like it.

I have also gone through the same pain increase after dx. My a1c was 12 .0 in October, 2010 and 5.5 this last Feb. Lots of pain and cramps. I have not taken anything specifically for pain, but I am taking R-ALA and have noticed less pain and more “normal” sensations in my feet and legs.

Like you, I have spent several years not knowing I had diabetes.I agree that not everything is a result of diabetes, but it is amazing how many things seem to be getting better as my BG levels improve. And yes, most of them have gotten worse before they got better. All of them are still a work in progress. Hopefully by my anniversary date this October I can say that some symptoms are gone.

I have had PN for six years. Once you do get your BS under control, the pain usually does feel worse before it feels better. I was told that, and it was definitely that way for me. I was getting the same vague responses from my doctors that you are now. It was so frustrating. I also remember thinking the same thing back then as you are now, "Is it going to hurt like this forever?"

The good news is that there are oral meds that can relieve the pain, so you can have your life back, relatively pain free. I was rx’d Cymbalta for my NP pain, and it keeps the pain at a near-zero level for 24/7. If I let my blood sugar get wildly out of line, or if I forget to take my Cymbalta, then I can feel the burn just a bit, but nothing like it was. Cymbalta is FDA approved for diabetes-onset NP.

My dad takes Lyrica for PN (non-diabetic onset), and it seems to work for him. I was first rx’d Neurontin for my PN pain, and I didn’t like it at all. I had to take a lot of it, and it didn’t relieve the pain.

One weird side effect from PN is that you may lose the hair on your lower-leg areas near your calves. I know, fun stuff. Having diabetes is full of surprises! Anyway, as others have said, hang in there. You’ll be in the clear soon enough. :slight_smile:

Often when people have really high blood sugars for a while (like the ones that’ll get you an A1c of 14.7), coming down into good blood sugar control fast can cause various problems, including neuropathy. If that’s all it is, it should get better- but it could take awhile. This is not a symptom of honeymooning. There are various pain medications that don’t work for everybody.

The joint pain is more unusual. Are your joints red or swollen?

I have some joint and nerve problems, but not like you describe, and possibly not related to diabetes except that it’s another autoimmune disease.

Hi Jackelope: I agree with Lynne, you may be experiencing the pain that comes from bringing your blood sugar down into a more normal range after it having been VERY high–in a sense it is a positive sign because your body is healing. I was diagnosed with Type 1 as an adult, with a BG of 619 mg/dl and in DKA. I brought my A1c down quickly with tight control, and I really suffered a lot of physical pain. I felt like my bones were hurting, and it was agony. It took me 10 months to feel better. I truly hope that you are experiencing what a lot of us experienced, and that you feel better soon. Hang in there!