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Help -- neuropathy

I am desperate for help. My 24 year old type 1 diabetic sister complained about severe back pain in May. In July she was brought to the hospital to see an orthopedic. Lots of tests were conducted yet nothing could be found. They then injected her with steroids in her lower back. After a month in the hospital, she did not improve. She was referred to a pain management doctor and was given a whole bunch of  high doses of pain and neuropathy medicines like sanor, lyrica, cymbalata, tramadol, oxicontin, etc. All this did not help and just caused her pins, stabbing pain, burning sensations, etc. Her back pain improved though. While she was at home, she just became weaker and collapsed twice. She became very thin and pain just kept increasing. Because of this, she decided to stop all medications and undergo cleansing. She improved a bit since her burning sensations disappeared but all the other pain remained and leg jerks started. We then consulted with another neurologist and she was given neurontin and Rivotril but still no improvement. I was wondering if all this pain in her upper body (chest, stomach, hips) as well as pain in the legs and arms are due to diabetic neuropathy or could this be caused by other factors? Do all diabetic neuropathy patients suffer with pain in the legs only or is pain in the upper body possible? I have not gotten any concrete response from the doctors and am very desperate as my sister has not been sleeping due to the pain she feels 24 hours a day. Please help me....
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Avatar universal
Funny nobody has answered this yet. I am looking for answers too and reading some of these threads helps answer some of my questions. I can help you with some of your questions tho. I am a diabetic T2. I discovered it when I went to my doctor with really bad foot pains. They were so bad that going to work on a Monday felt like I was just leaving on a Friday after 40 hours of pounding pavement all week, They even felt some days like the bottoms had been hit with a two by four and then stuffed in shoes that are too small.. My Doctor recognized it right away as neuropathy and tested me for diabetes and he was right. I had been for some time I would guess because my numbers were very high by the time I went in about my feet being sore. Anyway here it is, I had pain in my feet first, tingling burning, stabbing, sensitive to cold and heat and very sensitive at the soles, ie in shoes and can not run anymore, then in my ankles and those problems are all still there for the most part. My legs are achy at times and I now have tennis elbow after doing the same job for 11 years, why now? I don't know. I noticed weakness in my hands first and possibly caused the tennis elbow thing later by trying to work past the weakness at the same job when I should have gone for strengthening work on the hands instead. I now have the odd episode of tingling in my last two fingers on my right hand. I have shoulder pain and hip pain on the left side but those are triggered by sudden movements usually. Sometimes the hip and shoulder pains grab me so bad that I let out a yelp and it is embarrassing when it happens in front of other people. I also have some bowel issues. I have been tested by a functional therapist (required by my work place because they did not believe me that I had any pain) which took half a day and the results were worse then I had thought. Turns out I have deformities in the arches of my feet, can't lift the tows on the right foot half as high as the left, Do not walk a full step, shortened by pain in balls of feet, have weakness in feet, ankles, knees, hips, arms and hands so for my age I am living as if I was near 80 yrs old, nearly twice my age. When I should be able to squeeze 72 lbs in my dominant hand (right hand) I could only get 15 lbs. In my non dominant hand I should get about 62 and could only get 45 and later in the day could only get 30. Your sister is telling the truth, This pain is constant even if it lets up some a day here and there, it is still there and sleep is really hard to get. Problem is there is no real visual affects and many even doctors don't really believe us that we are suffering this much. The question you ask is do all DPN patients suffer pain in the lower body or is it all over. It starts usually in the farthest nerves from the spine and works it's way up as time goes. Some get it in the hands just as soon as the feet start. Some get it in the organs as well, Bowels and such.  Peripheral Neuropathy is a nerve damaging disease that affects nerves away from the spine and is caused by many other things like AIDS, diabetes, back injury, and now many more causes are surfacing in the medical news like exposure to lead. Anyway after 2 + years with my pains I have finally opt ed for pain meds and am on Nortriptyline, just can't take it anymore, I need my sleep and I want relief, I am tired of pain. I am on day five of the drug and find myself feeling funny with it but supposedly that is supposed to go away later, Not sure how you sister will do since she is on different stuff and seems like several so she might take longer to get some results and find the drugs beginning to settle in her body. Better blood counts can help the pain lessen but in a T1 that might not be as possible, I am not sure. I have lessened some of the night pains over the past two years with the blood counts some but they are still there and they still drive me nuts at most times. Anyway I hope you find some help for your sister and maybe some of what I said here will help.
Avatar universal
I have been diabetic for 33 years. Since I was 11. The first twenty years, I was totally out of control with the blood sugars. I started to have neuropathy pains in my feet 10 years ago that felt like a wasp stinging me in certain places, then it got worse over a period of three months and it started to feel like I stuck my foot in a beehive and then was walkign on chopped up glass. My doctor prescribed Ultram. I started to take 1/4 of the 50 mg pill and worked my way up to the whole pill after about two years. My pain would start around 4pm everyday. This medicine does make you a little sleep and forgetful, but it works so well. It actually took my appetite away too, which was nice.   This is the only drug that I have tried that does not have horrible side effects, I have been taking it now for ten years, and it still works well. However, I am very absent minded for about two hours after I take it. I hope this helps.
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