Hi, I’m newly diagnosed with Type 1 diabetes since Oct 12 of this year. I’m 50 years old. I took insulin (NPH) for 3 weeks with no side effects. The week after, I developed flu-like symptoms… pain and aches to be specific. I figured it was from insufficient sleep during my work week, so I may have gotten the flu. But now it’s in the 6th week with the pain and aches. It’s muscular, not joint. I already tested negative for COVID-19. My Family DR doesn’t think it’s a virus as my blood work came all back normal and I don’t think it’s the flu cuz the pain is like 3x-5x worse and constant every day with no relief (ibuprofen didn’t do anything for it). I thought maybe I’m reacting to the insulin. My endocrinologist says he has no record of anyone having an adverse reaction to insulin. He suggested switching to a new insulin (Lantus) which I’ve been taking for a week. Pain and aches are either the same or worse. It’s become hard to tell as I’ve gotten “used” to the pain. It’s hard to sleep at night sometimes and stay asleep. I feel a bit nauseous and have some loss of appetite. Anyway, I was wondering if anyone here has experienced similar pain and aches that resemble the flu and last for several weeks or even more without any relief? DRs can’t figure it out and I’m to see a rheumatologist next month which I’m not holding my breath they’ll be able to “solve” my symptoms. Thanks. -Bill
Hi @HisSoldier. I’m so sorry to hear about your issues with pain. I am not a medical professional but I have a couple of friends who have fibromyalgia - which I will completely over simplify when I describe it as chronic pain - but what you describe sounds like the description they have shared with me. Again, the idea just popped into my head - hopefully your rheumatology visit will give you a definite diagnosis. Please keep us posted on how you’re doing and what you find, if you care to share.
Thanks for your reply and input. I’ll be sure to update here for any additional information. I appreciate your concern.
Hi @HisSoldier and welcome to TypeOneNation I don’t have much to add other than I took NPH for almost 20 years and had no muscle or joint pain as a result. I am glad you are still talking to the doctors and I hope you can see a specialist because T1 diabetes is an autoimmune disease and can come with other autoimmune issues. I hope it’s nothing but stick with it, constant pain sounds terrible. Good luck
Hello Bill, when I started having that kind of pain many years ago, I saw a neurologist. and an EMG test was given. It showed that I had diabetic neuropathy. That is nerve damage, which is common among diabetics. Maybe you should see a neurologist.
Thanks Richard for that information. That would make some sense although if true it would have to develop really fast especially 3 weeks after taking insulin. I already had some neuropathy in my left foot before from accidentally sitting on it too long. But I’ll consult with my DR.
And Richard, you still have the pain and aches? How are you dealing with it, if at all?
I was diagnosed with diabetes in 1945, when I was 6. I have been a type 1 diabetic for 75 years. The neuropathy did not occur until the late 1990s. I have had pain for about 25 years now. I am taking aspirin, 325 grams per day. I don’t know of any other medicine that helps much. About 10 years ago I started having a lot of numbness in my feet and legs. The pain is not so bad, but I have poor balance. I have to be very careful to keep from falling down. I had physical therapy that gave me exercises to help control my balance. I have not fallen down for two years now.
Hello HisSoldier. Welcome !!
I don’t remember anything like this when first diagnosed (1977). However, I do remember that for the first few weeks after getting on insulin and regulated, my eyesight got really bad. I had to use a big magnifying glass to read anything. They said it was because my body was used to high BS so the lower BS caused my vision to be bad til my eyes got used to being on lower BS blood. It did go away.
I wonder if your issue could be similar to this?
Thanks for sharing Richard. I’m glad you are managing ok.
Yes that’s what I suggested to my DR. It’s kinda paradoxical ya know. Thanks again.
I didn’t read through the other comments, and they are likely more beneficial, yet why were you on NPH?? The joke is that it stands for Not Particularly Helpful. It’s so old school and not more cost effective bottle for bottle if you have insurance, and certainly not better event rate for event rate. With that being said, before this almost apocalypse year hit, I thought I would cash buy a vial of Regular and NPH and see if I could just do it…just in case. My stomach cramped so horribly, like an intestinal cramp, that I could barely get out of bed. I would try to get on my hands and knees and scooch out of bed, yet then needed to maintain my position. I quickly ended the apocalyptic what if I ever need it experiment. The rheumatologist is likely a good idea, as it would be for me, although I’ve had additional bizarre severities that were definitely joint and nerve based. Muscularly, I suddenly lost a lot of muscle tone, yet I don’t recall it being painful. What oddly helped me with my pain was the Autoimmune Protocol Diet (AIP) diet. It seems to help a wide range of ailments for those of us with an autoimmune condition, and to its theory, a weakened stomach lining. The first attempt, I failed maintaining it to similar severe abdominal cramping from low stomach acid from being vegetarian. I have no idea if it would help you, yet the relief seemed too connected to the AIP change in my life to not acknowledge it as part of a solution. Medication likely would have been helpful, too, yet I was unwilling to go through more adverse effects, etc., at the time. I was in such pain, I couldn’t even open a vial of test strips and my leaner self swelled to the point that I could barely put tennis shoes on with the laces undone. After trial and error, I found my restrictions list and felt dramatically better with the pain. If you aren’t aware of the AIP, it’s a pretty easy protocol to find online. Phoenix Helix has a beautifully written site about it, although I seem to practice a more severe form of it–only grassfed meats, seafood, veggies that are not nightshades, no grains, no dairy, no sugar, limited fructose, no legumes, etc. And, then I layer another austere protocol on top of it for better digestion with FODMAPS creating further restrictions, yet somehow I “won”/reintroduced back sugar alcohols. If you aren’t a hunter/fisherman with great gardening skills, it can also get expensive. Medication with a co-pay is a more convenient and reliable route if you find that relief. Good luck.
I had symptoms like that in the past even when I had my glucose levels within range and it was because I had ketones in my urine. I had levels within range and had 40-60 in the at home test for ketones. Maybe you can buy a test and just make sure it’s not that. Better to rule out the simple stuff before going into the more complex specially because your body is still adapting to all the changes. Best of luck
Thanks for your response and that information, Fabio.
I’m sorry you’re experiencing so much pain. I took NPH for years and never had any pain from it, so I don’t think that’s the cause, but I am not a medical professional! I’m wondering where the pain is? If it is in the side of your lower back swinging around toward your abdomen, it could be a kidney stone. These can be quite painful (a doctor told my husband that it was the closest he will ever come to the pain I went through in child birth!). That is one thought. Or, if it is your belly, it could be Celiac Disease, another auto-immune disease.
Another is Along the lines of what DDrumminMan and richard were saying, I wonder if it could be neuropathy, but that usually takes a long time to occur. Do you have any idea how long your blood sugars were running high for?
I also know someone who has Fibromyalgia, and that is VERY painful. So, that suggestion from Dorrie is one to consider as well.
Bottom line, there are so many different things it could be that I would suggest going to the specialist to see what they can find. Try to pinpoint where the pain is on your body. That should help them figure it out.
Good luck to you! I hope they can resolve your pain soon!
T1D 56+ years and counting!
Thanks Pam. Pain is ALL over. All muscle. It started as mild flu-like pain and aches. Now it’s bubbles up to the skin but not that painful to touch. It feels like blah but pain is constant everyday in any area. Most is concentrated on chest/stomach area but it’s on back, lower back, shoulders, arms, legs. I don’t get any pain in head thought it’s very mild and very temporary at times. It’s accompanied with nausea and loss of appetite. I had diabetes probably for at least 2+ years before taking insulin. It’s now the 8th week of pain. I’m really looking for anyone who has experienced this but any feedback or ideas are welcome too. I’m seeing naturopathic in a couple of weeks and a rheumatologist in 3 weeks. I can see two possibilities: my body isn’t handling the insulin (it’s now Lantus) or my body isn’t used to lower glucose levels. I don’t know but I’m not sure how much longer to ensure this. DR suggested taking oral medication for week without insulin to see if pain subsides. Medication is expensive. I’m praying for some relief soon.
Hi again. I’m so sorry to hear you haven’t found any relief yet. I love your screen name, His Soldier, so FWIW continue to fight as you eagerly await your upcoming appointments - I imagine one of those should give a diagnosis and treatment program to start you on your path of healing or managing whatever it is.
As far as “OTC” suggestions - if I did not say this before, I am not a doctor so only making a recommendation from personal or almost personal experience: my husband is from West Africa and appreciates and is familiar with natural treatments. He uses natural African shea butter for aches and pains. You can get lotions that have shea butter in them but this is the raw kind. There are ones that come in tubs as ones in chunks - he has used both but I personally prefer the tub - I like the consistency and it’s easier to apply. Even with that, some are smooth and some are grainy.I don’t know that there is any advantage of one over the other or if it’s a matter of preference. I massage it into achy areas and he feels much better - he is not diabetic but developed neuropathy in one arm and applying shea butter does ease his pain; and I’ve found it works for my own occasional aches.
You might find it in international markets and of course Amazon. I certainly am not saying it will cure you but it might give you some degree of relief as you wait for your appointments. Please do your own research - it’s important even with natural remedies.
If you do try it and get relief you might want to stop it a few days before your visits so you go in with things the way they really are, if that makes any sense.
Hi an welcome! I’m on a very low complex carb diet some would call it keto diet. Long story short this way of eating causes flu like symptoms BUT they don’t last maybe a day or two every other month or so…this has been my only experience as a T1D being food related rather than insulin.please share what you discover for it could help someone else out…all the best
Hello! I am.sorry you’re going through this and that you find something that helps you… What works for me, is magnesium spray. I found it on amazon. I only use it at night on my legs/arms or whenever I’m aching and it helps me.
Thank you so much, Ashleigh. I’m in fact using that on my feet and chest as suggested by a naturopathic acupuncturist. It helps in some regard as my “aches” are actually nerve pain, specifically insulin neuritis or treatment induced neuropathy. That’s what I’ve diagnosed myself nearly two months ago after seeing a rheumatologist who confirmed the pain was in nerves not muscles as all the symptoms I have fit to a T with reported cases. I need to start a new thread on that for those who are suffering or have suffered from insulin neuritis as I am not able to find a specific thread that deals with treatments for it.