new here with neuropathy

Hello, this is my first post here. I have lupus and have developed neuropathy in both hands and feet. It's very painful in my feet, to the point where 2 vicodin just takes the edge off. I've lost a little strength in my hands and am a little clumsy with one.  I also have some numbness in my feet. I'm being tested for everything but it isn't that common, but is possible, to have the lupus cause the neuropathy. My dad, brother (both type 2) and daughter (type 1) have diabetes. I had my daughter check my glucose levels and I had 2 high normal and 2 high, one was 232 then an immediate recheck was 202. ( I read the post about the meters not being that accurate and that concerns us since my daughter is pregnant). I have a re-check to find out what the lab tests found in a little over 2 weeks. I was given the 'warning' 2 yrs ago that I had the gene for type 2. I dieted and lost 15 lbs and my cholesteral improved and my fasting blood glucose went back to normal. Then I let it go again. So I think diabetes is a possibility but I've been on prednisone for 14 mo. and that can raise the blood sugar too. I don't know what to eat, I'm sitting here really wanting my cereal but am afraid to eat that many carbs. I don't want anymore damage from the neuropathy. What do I do in the mean time? I really don't know what to eat and I don't know if a couple more weeks of eating my high carb diet will hurt me further. Also if my neuropathy is caused by diabetes is there any chance it will be reversed or cause less pain when my blood sugars get normal? Sorry this is so long. thanks, Lonna

Hi there,

               Lupus can involve many organs and peripheral neuropathy is in the list but sure is uncommon.

               You have a family history of diabetes and you have been on steroids for 14 months and counting,and that's a recipe for Diabetes to occur.

               You had a previous episode when your sugars went high which you could bring back.Now the precipitating factor is prednisolone.Containing the flare in lupus is the first priority for you and steroid-induced Diabetes is incidental.Usually once the steroids are tapered off,the glucose values return to normal,but in your situation it is unlikely because of the prolonged use of high dose steroids.

                Don't worry about the glucometer accuracy when your sugars are in the mid 200's.Anyway glucometers are not designed for diagnosis of Diabetes.

                Yes,the neuropathic pain will and should subside once you can bring blood glucose values to within limits.There are many medications touted as the best for managing neuropathic pain,but blood glucose control is the best drug yet!

               Thumbs up!

Thank you so much for your responses. I see my rheumatologist on the 20th and he'll give me the test results and lead me in the right direction. I'm just so worried the neuropathy will get worse as it is very painful to walk and I don't do much on my feet because of it. (part of my pain is from the lupus too) How long can blood sugars be high before damage occurs to the brain and heart? I've cut out sugar and am trying to limit carbs and eat balanced meals but it is hard. I'm about 30 lbs overweight so losing it would help my feet but that's been very hard for me too. Thanks for your support....Lonna

Thanks for your post. I'll try not to worry, my appt. is in 2 weeks and they've done lots of tests so hopefully we'll know what is going on. I'm being treated at an excellent clinic so I know they'll get to the bottom of this. I'm glad to know the pain may subside since the vicodin is just taking the edge off. It's just so all consuming right now it's hard not to think about it. I'm happy and look healthy but I don't do much. I have about 4 hr. a day I can be on my feet at the most, not all at once. Oh well.....thanks
Lonna