Quick onset of neuropathy

#1

My husband was diagnosed in early December as a Type 1 and his A1C was 10.9 and FBG was 325. He was put on Glipizide and Metformin and went on a low carb diet. His FBC by the end of January was about 115.

But the issue is that very quickly he has developed disabling neuropathy from his toes to his knees. He is 43 years old and in November was out dirt bike riding and playing with our kids. Now it is February and he can’t even get to work most days and it is painful to walk from the couch to the bed.

We have seen a few doctors and he has been given Cymbalta and Gabapentin but neither of those have done a thing for the pain. At this point he is depressed and not sleeping at all and has lost so much weight (he is too thin now). He is scheduled for an EMG next week.

Has anyone had neuropathy just “explode” like that? Most of the reading I have done says that it progresses slowly. I am sure he had been diabetic for several years prior but the onset of this is really scary.

Could it be from reducing his BG pretty fast…325 to 115 in 8 weeks?

For those of you who have a let up of neuropathy from tight control how long did that take before you saw improvements?

Really desperate for some encouragement that my 43 year old husband won’t be in a wheelchair a month from now :frowning:

1 Like
#2

Are they sure it’s neuropathy? I know that when I was first diagnosed, I had no symptoms, but a short while after that, I had a lot of pain in my extremities, especially my feet. My doctor told me that he suspected that there had been some previously-unnoticed nerve damage and the pain was actually the nerves coming “back to life” - part of the healing process. In my case, he was right, and the pain stopped after a month or two of good blood glucose control. I have no signs of nerve damage today, almost 5 years later.

2 Likes
#3

I think so…he has some numbness on his toes, says it feels like he is walking on sharp rocks as well as burning/deep pain up his legs.

They also tested his reflexes and I noticed that he did not have any knee reflexes which I am assuming is damage to that nerve? I am hoping we get more details when he has the EMG.

#4

@cometkitty - I don’t have direct experience of neuropathy, so my feedback is much less valuable than others. But - this seems to be incredibly fast, way too fast. Unless your hsuband had been an untreated diabetic for 15-20 years, it seems very unlikely to me that this is really neuropathy?

Do you think it likely that he was undiagnosed for many years?

Again, I am not a really good person to speak here. My feedback is not of great value on this subject.

#5

In my experience this is normal. I was diagnosed at age 55 with an A1c of 12.3 and a fasting BG of 436. Since he already has some neuropathy symptoms he has probably had some form diabetes for some time. Unless there may be in another reason for it like chemotherapy. It takes a while for this to develop. Mine was relatively severe by the time I had a diagnosis.

What is happening for him is very much like withdrawal from hard drugs like heroin. He has had a high blood sugar for long enough to develop the issue and his body has become accustomed to that chemistry. Now he has changed that. And his body is not happy. I don’t know if he had gone slower if it would be any different. Everyone I have talked to who was diagnosed with neuropathy already in place and has gone on to control their blood sugar has gone through this.

It is one of the most painful things I have ever endured. Ever. And it does not quit when you try to sleep. As for how long it may last; for myself and at least one other person that I know, it took eight months before the pain began to subside. It sounds as if both of us had much worse neuropathy than your husband does though. It may move somewhat quicker for him.

The best thing I found that helped was r-Alpha lipoic acid (r-ala). It is an amino acid that you already have in your system. Do some research on it so that you understand what it is. It has virtually no side effects and is a powerful antioxidant. I started taking it and felt a difference right from the start. I ended up using a very high dose of 1200 units per day (600×2). But even when I was only taking 200 units a day I could realize some small amount of relief. It will not take the pain away. It will hopefully soften the edge as it did for me.

According to a study that was done by Johns Hopkins it takes two years in the average adult for the healing in their extremities to begin. Most people give up too soon. When this happened to me I could not tie my shoes or button a shirt. I could not hold a coffee cup with one hand. I still have it, but the pain is virtually gone. The secret to my success with this is simple. I keep my blood sugar as close to normal as possible. That is really all you can do to reverse this.

Now for the question that has bothered me since I first read your post. If he was diagnosed as type I why did they give him type II drugs? The only treatment for type I is insulin. It is a necessity for a type I diabetic to take insulin. If he has not been told this by your doctor I would be very very concerned.

5 Likes
#6

Here is a link to a blog about my neuropathy that I wrote last fall.

Neuropathy Pain and Repair

2 Likes
#7

I had minor neuropathy as a result of many years of T1D, but without need for treatment. However, after several rounds of chemo, it was painful, and disrupted sleep. I started taking taurine, and my symptoms leveled off. I continued the taurine for several months after, but no longer need it.
I also was prescribed a low dose of gabapentin during chemo, and no longer take that either, but it also helped.

#8

I wow I meant type 2!!!

If I had to take a guess I would say he has had it a few years but not more than 5 years since I know he had full blood work done then.

Randy I will check out your blog…sounds like you have been through the ringer! It’s encouraging to know that there is a chance that this will subside.

Luckily we are in California where marijuana is legal so he went today to get a little so that hopefully he can actually sleep tonight!!!

#9

I’ve been a type 1 Diabetic for close to 20 years. A bit under two years ago I began to notice some neuropathic symptoms. It was definitely a quick onset, prior to this I had never noticed any real issues and seemingly overnight I started having numbness in my toes, pins and needles and burning that would wake me up at night in my feet and tingling and weird sensations in my left arm.

I should stress this was never officially diagnosed as neuropathy. However, as it was proving difficult to get any real diagnosis I decided the best point of call was to really tighten my blood glucose readings. Since then, whilst I occasionally still have some tingling in my hand and feet if my blood glucose goes out of range, overall the symptoms have gone completely, all due to a much tighter control of my diabetes.

I was fortunate in that my neuropathy wasn’t as bad as what you or @Randy5 have experienced.

1 Like
#10

Actually, that is the only thing I used to relieve the pain and sensations. With the occasional exception when I would take aspirin or ibuprofen. You should be able to get something that will work rather specifically for his issues.

#11

I experienced pain on the bottom of my feet within a few years of my T1D diagnosis. The pain didn’t go away but did not get any worse. My blood sugar control was pretty decent for the first 23 years or so but deteriorated to an A1c as high as 8.5% for about five years. I started to feel more pain in my feet and some numbness as well. I also started to feel a numbness in both hands and arms. It was a strange loss of some sensation that blanketed my hands from my fingertips to my elbows.

At year 28, I made a new and determined effort to reign in my blood sugar. I knew that the landmark Diabetes Complication and Control Trial concluded that restoring good blood glucose control often reversed neuropathy. I felt that was the only thing I could do that had any hope of restoring normal sensation to my feet and hands. My symptoms were not very painful but still disturbed me. I dropped my A1c to the low 6% range and have made it stick for the last five years. The symptoms in my hands disappeared within a few months and the foot pain diminished but have never fully subsided.

I think the progression of neuropathy can be slowed down or even reversed in many cases. I used a lower carb diet combined with everyday walking to regain control of my blood glucose. Running a continuous glucose monitor and engaging with the data also contributed a large part to my success. Good luck to your husband and you!

1 Like
#12

I also take alpha lipoic acid along with l-carnitine which were both prescribed to me by a doctor from the Andrews Institute. They are both over the counter. I also take benfotiamine which I started on my own and was told is ok. Lidoderm patches also provide me with considerable relief. You may want to investigate these.

2 Likes
#13

I have had Type 1 for 35 years. I started developing severe weakness in my legs. They felt like noodles. I saw a Neurologist that did a nerve conduction test on my legs. He said I had really bad neuropathy. I never knew it could cause such weakness. I work full time, but fortunately sit most of the day or I wouldn’t be able to do it. I fear a wheel chair in the future as well. I am going to look into some of the supplements that were mentioned in this feed!

1 Like
#15

Hi I was age 50 when I was diagnosed with peripheral neuropathy from type 2 diabetes. I had symptoms of feet burning (like lactic acid pain), hypersensitivity to temperatures, shooting nerve pains and numbness before I even went to the doctors. I am taking metformin. This resulted in walking with pain, discomfort, like walking on pebbles, some balance issues and leg fatigue. I usually heal very fast but nerves can take a long time. #1, I changed my diet 99% no processed sugars, lots of fruits and vegetables. For rehab I walked on the treadmill. Because circulation is BAD in the feet I often stood on one foot and shaked my other foot to improve circulation. This seemed to really help. The shaking of the foot or leg increases blood flow into the damaged nerves and helps to remove scar tissues. This healing process takes a long long time. My neuropathy was a severity/painfulness of 9 in april 2018, ,and after constantly doing my own self rehab it’s now at a 3 (a 50% improvement for me). I recovered flexibility in my toes and don’t need to use my hands to hold the wall to keep my balance in the mornings. There is hope, but you must be persistent.

#16

Type 1 for 60 yrs with no neuropathy of any kind until I tried taking Zetia. Bothered me more and more until I got up in the middle of the night and read the side effects of Zetia. Yep neuropathy is listed, so I know that meds can cause neuropathy. I stopped taking it and all neuropathy quickly dissipated.

Probably isn’t the case for your husband, but thought I should mention it.

#18

Burning nerve in left theigh. Gabapentin 600 mg BID. All is well.

Robert17