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Severe Neuropathy Pain
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shadowlands posted:
I am needing information or personal experience from anyone with peripheral neuropathy. Specifically Type 1 Diabetics. My 16 year old son has had diabetes since age 11. He had trouble the first three years getting his sugars down to acceptable levels. He ran anywhere from 200 to 500 with an average around 350. He was living with his mother during this time and would go into DKA typically twice a year. When I was able to get custody of him we managed to get his sugars down to a range of 110-165 in the past year.

Earlier this year he developed a Vitamin D Deficiency. Turns out his mother had the same problem three years ago so it runs in her family. When this happened he also developed peripheral neuropathy. This has turned out to be extremely painful for him. Not a simple "loss of sensation" but full blown screaming pain in his legs and feet. His neurologist prescribed Gabapentin at first which did absolutely nothing to dull his pain. She then added Lyrica to the Gabapentin. His original dose was 600mg Gabapentin/100mg Lyrica 3X per day. Didn't work. He was in pain at 6 hours. Doctor suggested going up to 150mg of Lyrica. Slight improvement was noted but pain still returned at six hours. We tried one dose of 200mg Lyrica and his pain went away. Did the same thing on the next two doses then stepped down to 150 mg. Still at four times per day. He was doing ok until he ran out of his Lyrica. His doctor did not rewrite the prescription for the higher dose and the insurance wouldn't cover it. By the time the problem was fixed he was off Lyrica for 24 hours. Now he is back to having pain in waves so bad it causes him to cry out for over an hour at a time. I'm talking a really tough kid here that is about to go insane. This happens four to five times a day and he has no relief.

Recently has an EMG test done and have a nerve biopsy schedule after Thanksgiving. Still waiting for an appointment with pain management doctor. In the meantime, we need to know if anyone has run into this type of severe pain from Neuropathy before. I just can't believe pain this severe could all be attributed to peripheral neuropathy. He says it feels as if someone is trying to crush his knees, shins and ankles. Also having shooting pains through his thighs and calves. Burning and stinging in his ankles and feet. It is the crushing bone pain that causes him the most pain. I am very worried about this especially in light of the amount of Lyrica he is taking right now. His prescription will run out middle of next week and I have no idea what to do about it. Although it isn't working as well as it was before he ran out last time I am still worried about running out and not being able to refill the prescription.

Has anyone run into this type of severe peripheral neuropathy before and, if so, what did you do about it?
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mrscora01 responded:
Wow, I really feel for you and your son. I have had DPN, but never this severe, and not until many more years of T1. I have used the DPN cocktail , but I"m not sure how helpful it is in this extreme situation. It also takes time to help. I have also heard that capsaicin (sp?) can help. I'm obviously not a doc, but this sounds very unusual for not having had diabetes that long, even with the high numbers. I hope the docs can help after the weekend. Best of luck.

Cora
T1 1966, Dialysis 2001, kidney transplant and pump 2002, pancreas transplant 2008
 
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An_254619 responded:
I am an over 50 grandmother who has had type 2 DM for over 30 years. About 15 years ago I developed very severe neuropathy in my feet, mild in both hands. I took gabapentin for about 7 years with good results at first, then gradual lessening of relief. I also developed double vision which was caused by the gabapentin (it went away after stopping). I was tried then on topamax, again developed double vision. I had a long trial of Lyrica with no relief, then Cymbalta, also with no relief. My pain (mainly at night and with wearing shoes/socks) was so bad that I NEVER slept for any length of time. I cried all night. It felt like I was walking on hot coals with hot needles pricking my feet. My husband slept at the opposite end of the bed and he would squeeze both feet, just for me to feel a different kind of pain. I eventually stopped going to bed to allow him to sleep for work. I was absolutely suicidal - it was that bad. My internist finally sent me to a pain management physician. He prescribed everything from Lortab to OxyContin, still with NO RELIEF. He finally prescribed a trial of methadone, and my life was changed forever! It was a miracle for me. I did not realize that methadone was a pain control medication. I've been on a stable dose for about five years, and I have my life back. I can put shoes and socks on again without crying in pain till I take them off, and I can go places with my family again! It's unbelievable.

Patients on this drug are monitored very strictly by the physician. I realize your son is very young and this may not be an option you would consider, but keep this in mind. I believe more diabetics should be told about this treatment. Methadone has a bad rap because it's also used to get addicts off of other drugs, but I talked to two of my other physicians and both told me that methadone is an excellent medication for pain relief. This is just an option you may want to consider if it gets to the point of desperation for your son. I hope he finds something that will give him his life back, the way this medication gave me mine. He will be in my prayers.
 
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mbdermody responded:
I was diagnosed with Type 1 diabetes in 2001. I also had severe peripheral neuropathy. My feet felt like they were on fire & I couldn't stand any hair growth on my legs. I stopped walking for fun. I was miserable. I started riding my bike instead of walking. Then an opportunity to visit Paris caused me to force my way thru the pain. That was the turning point. Occasionally now I feel a little discomfort at night if my blood sugar has been high but other than that I'm back to normal. Walking with music or conversation with others keeps your mind off the pain in the beginning. Keep him moving & distract him from the pain. Bike riding is a great way to start so he's not on his feet. I never took any medication for the pain. It was hard work but I'm proof it can be conquered. p.s. Stay away from the capsaicin. I couldn't wash it off quick enough. I had hyper-sensitivity & that made me cry out loud!
 
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prntravler replied to mbdermody's response:
have 90 % relief with Alpha Lipoic acid..over the counter at a vitamin store"026worked up to 1200 mg per day"026no side effects"026My M.D. approved this..with instructions to gradually increase from 400 mg. daily until relieved..
Bike riding every day at a gym does help"026
Good luck.
 
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chanc55 responded:

Hello I feel for you and your son severe neuropathy has been a part of my life for 12 years. It is in me so I know the pain as well as the frustration with everything. So here is what I am currently using (till I can find something better) . Oxcarbazepine - 150 mg 2 times daily. would use more but hurts my stomach at higher doses. Oxymorphone ER - 10 mg 2 times daily must be cautious with this one, supposed to be taken every 12 hours I have found it works for 8 to 10 hours. Hydrocodone 5 mg once usually after about 8 to 10 hours depends for me at least how strenuously I work during the day. Occasionally I treat myself at night when pain is most severe by sticking 5% lidocaine patches on top of my feet, they can really bring relief but they are expensive. Stress and anxiety make pain much worse, mental and physical exercise is very important for your son as well as you the care giver. Practice a healthy life style, keep a positive outlook and it will reduce pain.
 
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ndm72 responded:
I so feel for your son and since his vitamin D deficiency would it be possible to get IV vitamin D or high potency 50,000 units weekly. .Another thought I had after seeing this report about another young man's pain on tv last week. Could he possibly be misdiagnosed? their are other neurological nerve disorders that present this way like Reflex Sympathetic Dystrophy Syndrome. My husband has gotten some relief by going on the medicine for Parkinson's disease as well as Neurontin. Part of your sons pain may be exacerbated by withdrawal symptoms when his Lyrica runs out. Lyrica needs to be withdrawn gradually as it is addictive to the body. Hope this gives you some other ideas keep searching and praying I am sure there is a solution out there.
 
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brunosbud replied to mbdermody's response:
Thanks for your story. Could you explain what you think the bike riding did to ease the pain. Was the bike riding recommended to you by a doctor in Paris was this something you came up with on your own? Do you feel numbness in your feet or did you recapture some feeling, again? Is your blood sugar well controlled, now, as a result of the riding and walking?
 
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mbdermody replied to brunosbud's response:
Before I was diagnosed I loved to walk. When the neuropathy set in I gave up walking because my feet hurt. I went from walking miles to barely being able to make a few blocks. All my doctor offered was the capsaicin. When the trip to Paris was booked I realized that I had to get moving in order to enjoy my trip. I rode my bike to keep the pressure off my feet. My blood sugar is controlled. I have all my feeling back in my feet & the hyper-sensitivity is gone. One more thing, I invested in good walking shoes & made sure my shoes fit properly. It took time & a lot of work but I'm pain free & happy! I still ride my bike...even in winter & I walk every chance I get. I wouldn't call myself athletic by any means. If I can do it...anyone can.
 
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brunosbud replied to mbdermody's response:
Wow! To have all the feeling return to your feet is incredible! You were rewarded for your determination and your belief to self-heal.
You remind us all, that hard work, whatever the outcome, always pays dividends. Thanks for the inspiration, mbdermod, & stay happy!


PS: I celebrate each new day with a 4am walk with my two "pems" (dogs). I talk to my sister, brother and, most of all, to my dad. They're resting peacefully, somewhere, and having a blast, I'm sure. Walking has long been a spiritual necessity in my life.


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