Hi guys,
I was wondering if someone who has neuropathy in their feet and legs could describe for me exactly what it feels like. I'm having some issues with my legs and my doctor mentioned neuropathy as one possibility. I don't think I have it, honestly, but I do think that whatever this is is somehow related to T1D, and probably a complication. :( Not very happy right now...
Thanks,
Molly
Hi Molly,
I just joined Juvenation & seen your post regarding neuropathy in your feet. I was DX with diabetic neuropathy in my lower extremities several years ago. It is excruciating pain that is hard to describe. I have tried several medications. And what I found that works for me is morphine. I take 300mg of morphine daily. Without this, I could not function. My health is declining fast and without the medication for my diabetes, heart, BP, and neuropathy I don't know what I would do. However, with the help of God, my loving husband, daughter and grand-daughter it keeps me going and gives me the will to live.
Chow,
Pat
Pat,
Welcome to Juvenation and thank you for sharing! I am sorry to hear you are in so much pain. Is the pain constant, or does it go away at all?
What I'm experiencing is a constant tightness in my calf muscles. Then when I walk, even a relatively short distance, the muscles get extremely rigid, hard, and swollen, and it becomes so bad that I have to stop walking. Even when I'm not walking long distances, my leg muscles seem very hard and often hurt. What is confusing to me is that it's not only pain (which would make me think it was neuropathy), it's that my muscles get extremely hard and big, like rocks.
I am getting a test for peripheral artery disease, but I don't think that's what it is. I just don't know what to do because this has been going on for at least 3 years and is getting worse, and I can't seem to get a diagnosis for it.
Anyway, thanks again for posting and keep on fighting the good fight!
Molly
Hi Molly,
I have the same problem with my calves and my masseuse suggested I drink more water, that it would help with that. i haven't really tried it out (though I'm drinking lots more water these days) but i don't think it's neuropathy.
my endo has never shown concern and i've also been told i just have strong calf muscles (which doesn't surprise me if that's true considering they are HUGE haha), so when this started to happen a few years ago I didn't really think anything of it because I've always had really bad charlie-horse attacks as a kid so it made sense.
if you're really concern, I'd bring it up at your next appointment or if you can, book an appointment to see your endo or even your family doctor.
Oh! you can also ask your doctor about magnesium deficiency and Compartment syndrome (been searching google haha). I am going to my endo tomorrow actually, so I'll ask him again about the symptoms, see what he thinks and let you know; might help when you go to see your doc :)
Several years ago my neurologist gave me an EMG test and diagnosed neuropathy in my feet. The pain felt like an electric current flowing through parts of one foot. It would alternate and strike every 20 seconds or so. It was so bad some nights that I could sleep so I got up and walked around my house.That helped. When I went back to bed it started again. I noticed that when I did not run any high BG for a couple of days, the pain would be much less pain, and some nights I did not have any pain at all. I rarely had pain during the day, it was a night time thing. I never used a medication for my neuropathy, like Lyrica, but many people do.
In 2007 I started pumping. That improved my control and I had fewer highs and lows. My control was much more stable. After a few months of pumping my neuropathy symptoms disappeared. If I forget a bolus, or eat out and guess wrong about the number of carbs in a meal, and have several hours of high BG, then I can have some neuropathy pain that night. When my BG is stable, there is no pain. It is never bad like it used to be.
Hi Molly! Thanks & good luck getting to the bottom of what is going on with your pain. We all have different diagnosis but know our body better than anyone? My Endocrinologist referred me to a specialist who DX me with neuropathy in my lower extremities. Good luck & thanks once again (((*_~)))
Thank you so much Batts! I'd love to hear what your endo has to say. I'm going to a new endo at the beginning of next month, so I think I'll bring it up to him and stress that I really would like to figure out what's going on. My calf muscles have always been more lean and muscley than the rest of my body, lol. But it's the cramping and pain that has me concerned.
I did think it could be a deficiency of some sort at one point, but I eat a decently-varied diet and take vitamin/mineral supplements, so I think it's unlikely. However, I looked up compartment syndrome and that seems like it could be a possibility. I also found out about a scary complication called diabetic muscle infarction, which sounds a lot like what is going on (but maybe in the early stages or something.) I hope that it ends up being something small, but I also feel like I have to be realistic and take it seriously in case it is something bad.
Anyway, thanks again and definitely let me know if you end up speaking with your endo!
Molly
Richard,
Thanks! It's good to hear that you're able to keep the neuropathy at bay with tight control. I did have an EMG which I believe was inconclusive. I guess what they found wasn't strong enough to say that something was definitely wrong, but there was some sort of abnormality in the results, so I have a prescription to go get a Doppler test done.
I think it's possible that I do have very slight neuropathy (I do get some tingling/pain sometimes...), but I just don't feel like that is what is causing the muscle pain. From your and others' descriptions of neuropathy pain, it just seems like a different sort of pain.
I guess the next steps are to get the Doppler done and speak with my new endo. Thank you, again, for replying!
Molly
I TOTALLY forgot to bring it up again cuz we spent most of my appointment trying to figure out what the hell is going on with my levels..but I'm seeing him in 3months to see if my A1C has gone down so I'll try to remember to ask!
I actually thought about you on sunday haha I was at the walk to cure diabetes in my community and I was doing part of the walk that's up hill and my calves started to kill me haha
Haha aw Batts thanks for thinking of me in your moment of pain! lol And it's cool, Endo appointments are always stressful and I know I forget half the stuff I wanted to ask (plus it's more important that you focus on your stuff than asking questions for me.) I have an appointment with a new endo at the beginning of August so I'm definitely going to bring it up to him and see what he says. I go to a chiropractor pretty regularly because I was in a car accident in May, and when I brought it up to him he said the pain/swelling/hardness in my legs actually COULD be nerve related, so we'll see. I mean, if it is, that's pretty bad news but at least I'll finally know.
Molly