I am 60 years old and have had T1D for 50 years. I am well managed and have had only a few complications (eyes/pregnancy), in all that time. I have been on a pump for 16 years and on a CGM for 2 years. About 5 years ago, I began having a very unusual reaction to low blood sugars. This happens ONLY when sleeping at night. In the early mornings, while still asleep. if my BS is about 100 or below, my hands will PAINFULLY tingle. Sometimes only one hand, sometimes both hands. I am right handed, it usually is the right hand. It is NOT Carpal Tunnel. It only happens at night, when sleeping, not during the day when I am moving around. It only happens when my BS is LOW, never normal or high. This wakes me up, ruins my sleep and hurts! I have had this issue for about 5 years now. My endo, whom I really respect, thinks I’m nuts. Has anyone out there ever experienced something like this?
Hi Terri @TJC, let your endo call both of us nuts! Coincidence, maybe …
What you are describing has been happening to me more often lately than I recall it happening in the past. I had attributed the painful tingling in my arms to “sleeping funny” and had not gone as fare as you to recognize that BGL was low when this occurred. Now that I’ve initiated Control IQ, I have been awakened by tingle in arms/hands more frequently than in years past. CIQ maintains my BGL between 85 and 105 mg/dl throughout the night.
Now that you have brought this phenomenon to my attention, I will begin observing BGL to see if I can support your observation.
Hi Teri!
Been Type 1 since 1964 and I have the EXACT same thing! You are NOT nuts…thanks so for sharing!
Just brainstorming here but perhaps it is peripheral neuropathy and these particular symptoms are “triggered” by low blood sugars?
Also, if your endo thinks you’re nuts this certainly is not a respectful relationship. If they don’t have diabetes they can’t know what we go through; so making such comments is unfair and insensitive, not to mention highly unprofessional on a number of levels. So if they’re going to dismiss your symptoms and not help you determine what’s going on, you might want to find a doctor who respects you as much as you do them.
I have this symptom during the early mornings. I have to track if my bg is low. I started a thread a while ago regarding it. I thought it was a reaction to my insulin. It is a horrible feeling.
Hi Dennis,
Please let me know if you see a correlation.
Terri
Cindy,
Thanks for letting me know I am not alone! I guess it is some kind of “reverse neuropathy” doesn’t seem fair, though does it?
Hi Dorie,
I agree - some kind of “low BS neuropathy”. But please don’t be upset about my doctor! “thinks I’m nuts” is my phrase - not his !!! He is a really good guy. (After 50 years of this - I know the good ones from the others…) He just never heard of this before. Now I can tell him there are others.
Hi Joy,
Yes it is a horrible thing- and seems totally unfair since it happens when BS is low , not high. It can get painful.
Thanks everyone for your responses. Good to know I am not alone in this strange low BS symptom. Other than trying to keep my BS in the normal range (or “high normal” in my case - and when do I not try ?) does anyone have any suggestions on how to avoid this?
I apologize for my assumption. I hope the statements from others on the forum will help your doctor see this is legit. Wishing you the best.
Hi All,
What we are seeing here - the sharing that may lead to something important - is one of the advantages of this Forum. Five of us are reporting similar symptoms or phenomenon which we should report to our doctors / endocrinologists and let them know that this is not a “one-off”. Doctors can then share with colleagues and possibly arrive at new advisories.
during my 34 years at Joslin, I would share my personal observations with doctors who would include in discussions with colleagues; some of my observations are now included in TypeOne basic teaching.
I have wrestled with this off-and-on for at least twenty years. It can continue for several weeks and then disappear for months. It is usually a nighttime phenomenon, but not always. It can be so bad that I can’t stand to have the bed covers touch my skin. Like others have said, it wakes me up and can keep me awake for hours.
I have tried to relieve the burning/itching sensations with various lotions without success. Hydrocortisone creams/ointments are no help.
At one point my physician thought it might be related to hypothyroidism, but my thyroid blood work always comes back “well-managed” (I do take levothyroxine).
Recently I tried washing my arms with baking soda (an old “folk remedy” for itching due to insect bites) and experienced some relief. It didn’t work with warm water, but seemed to provide some relief when I used cool water. One night I left out the baking soda and just ran cool water over my forearms and got relief. I continued to do that for several days and experienced some relief almost every time.
About two weeks after I started the “just cool water” treatment I stumbled across a discussion of brachioradial pruritus on the internet. The recommended treatment described there included “cold packs” to manage symptoms (similar to my cool water treatment). I have decided that this is the likely syndrome.
I have an appointment with my endocrinologist next week. I’ll discuss this with him and see what he thinks might be the cause. I’ll report back.
Good luck to all!
Bill
Hi all. I want to start by clarifying that I do not have T1D, but my son does. I recently did some research for him because he has been having trouble sleeping. I found a few places that mentioned something about T1D’s having low magnesium, which can affect their sleep patterns, blood sugar control, etc. We started him on a low dose magnesium tablet once a day and it has helped as far as his sleeping goes. But the correlation that I wanted to point out is that magnesium is also the go-to for people who have restless leg syndrome, which is a nerve stimulation problem in the legs. My husband has RLS so I found him a magnesium lotion and it has made a big difference. The nice thing about the lotion is that the body only absorbs what it needs and does not cause intestinal symptoms like tablets can (think Milk of Magnesia). I’m not trying to give medical advice, but if you happen to see magnesium lotion at whole foods or a local coop it might be good to try on your arms and see if it helps. As a bonus it smells like sea salt and it really does soften the skin. Good luck!
Terri, I was wondering what pump and CGM system you are using? I would suggest a blood test that may tell if your are deficient in a vitamin or magnesium as suggested by another poster. Also, we moved by daughter to the Medtronic closed loop pump system and that helped her overall have many less highs and lows in general and her A1C is now down to 6. Hope those suggestions are helpful for exploration - Bev
Hi Bill,
Thanks for the suggestions. I hope you find help for your issue. I think, though, that mine may be different… my tingling and numbness - just like an appendage that “fell asleep” is deeper than skin and can be extremely painful. It started a few years ago and bothers more and more often, almost every night - unless my morning BS is above low/normal… It used to only happen when by BS was LOW. These days, it can happen when my BS is around 100. It hurts, wakes me, and I check my sensor, so I know.l Usually around 4-6am. It never happens when my BS is HIGH. Weird.
Dear Beverly,
Funny you should mention magnesium. A few months ago I had a few nights of leg cramps. (Haven’t had any for 20 years.). So I tried taking magnesium for a month. The leg cramps never came back ( I truly think it was just coincindince) but it did nothing for the hand numbness at all! After a month, I stopped the magnesium supplements (no leg cramps).
I also tried the auto setting on my medtronic pump - gave it a year - but went back to manual because it just kept my BS too high - all the time.
Thanks for your input,
Terri
I also want to say - my numbness is circulatory. To feel better, I just give my hands a real good “shake” for a minute or two and the numbness goes away.
Wow, this is unusual. I have something very similar. Good to know I’m not alone. I’ve only been diagnosed for 6 yrs now, but I get that all the time. Sleeping or not. Thought it was just a sign of dropping low!
Even tho diagnosis is only 6 yrs, I know that I’ve had signs since I was 8 or 10. Drs don’t believe me. I apparently show very little diabetic signs thru testing even now.
But, I get the feeling like wind over a sunburn from the ac or the heat when it blows on me or any regular air current can cause it. But I also get it after sleeping 4 hrs or so and Bgl is around 90’s. Thought it was just neuropathies coming in to play. Never thought it might be something else.
I take Cialis daily for all my neuropathies. It works well for stopping Random pains, tingling hands and feet, it gives me improved feeling in my feet too! They don’t feel like clumps of wood. It helps with several other things that developed after I started on Insulin.
But no one has ever mentioned this before. Since I’ve been diagnosed I usually have stuff no one else does or I react differently than anyone else I know of. It’s nice to be included for a change!
Charlie
Hi @TJC. How much magnesium do/did you take? I’ve been taking 250mg for a while - a friend told me about is benefits and I started after doing a little research for myself. But I do still get occasional foot cramps. May or may not be related but I thought I’d ask. Thanks and stay well.