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Anyone here dealing with peripheral neuropathy?
Neuropathy | Last Active: Oct 28 4:54pm | Replies (3050)Comment receiving replies
My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory. The nerve tests EMG shows some dense loss of sensory, some motor loss up to hips, up to elbows. She recently had some times of total loss of movement of her legs. She lost contact with her doctors for a billing reason (lets not discuss this please) so we need to drive 6 hours away. No one will take on her many diseases. She has so much foot pain and I listen to her crying in her bed all night. (and day when I am not working) I can't do enough for her) She cannot walk physically. She is aging before my eyes. What is the newest treatment for pain? She has tried muscle relaxers (erased her memory so she quit them) She is on 5 oxy, Lyrica, Topamax, Predisone 20mg (used to take giant bags pulse over the summer!) and she is taking a cell cept too just to slow this beast down and its not working. Our short term goal is to get her out of pain.. oh, the scrambler is not in the budget.. we live too far from the hospitals that offer it and the hotels will kill us to wait out the 10 days it takes. so any other new treatments? We tried a sodium blocker channel, She had double vision.. and blurry eyes. PS> I have an ulcer over this and I lost 50 pounds in 2 months without trying. We need help financially and she needs to get out of bed. Soon!!!!. ( She has both feet just killing her burning up all over her body too)
Replies to "My Wife, Age 49, has fast moving neuropathy that is dense. Is thought to be inflammatory...."
briansr here. I have neuropathy from toes working its way up. You may have<br />
just opened my eyes to why both knees and one hip will keep me awake all<br />
night. Ice, temp., helps my knees but the best drug wise is gabapentin,<br />
800mg four a day but it's not enough. My drug company has a limit on how<br />
much they will allow. Twenty years ago I had a pain doc that had people on<br />
10,000 mgs a day and no need for any narcotics, boy he was right too!!<br />
Sorry to hear about your wife's troubles. My neuropathy is serious but nothing on that scale. You say its inflammatory so has there been a primary diagnosis of something like Lupus or Sjogren's, or another connective tissue disorder? Sounds like your wife is on the usual pain meds, the only one that I didn't see listed was an antidepressant, usually duloxetine. I'm pretty sure that opioids can be used for neuropathic pain with the usual warnings about addiction, but addiction worries sound secondary to comforting her at this point. My 2 cents. Here's a finding about that: http://www.ncbi.nlm.nih.gov/pubmed/23986501
Duloxetine or another antidepressant may help. Pain is not an exact science so don't give up hope. Best of luck to you and your wife.
Todd, I forgot to add that cell cert can take at least 6 months to work. I just started it a week ago. If your wife hasn't been on it long, she may hopefully still benefit. Again, good luck.
JohnWBurns: I'm so sorry to hear about you and your wife's trials. I
know it can be discouraging when you haven't received the care your wife
deserves. The insurance company I'm with isn't anything to brag about!
"But" I can truly say that my Dr. does everything he can for me, and when I
have one of my ugly flair ups, he has compassion and understanding of my
pain in my flair up difficulty in walking. I have suffered migraines since
I was 10, due to an accident. At 22 had a histerectomy, due to a tumor, at
23 had my gallbladder removed, one doctor told my husband I was trying to
get attention. Needless to say by the time I finally got the help I needed
they had to do emergency surgery. (They said I was to skinny to have
gallbladder disease) LOL!!! I always have had problems due to my accident I
had at 10years old. Have arthritis in my neck in 3 vertebras. Before I
changed my Major in education, I was a Veterinary Technician and surgery
assistant, my husband and I trained cutting horses, and farm work, all
these things took its toll on my body, a woman wasn't made for some types
of work. Was always active, but paid for it afterwards. Know I can't be
active. It was difficult for me. I went back to school studied in Christian
Counseling, loved everything about it. It helped me mentally and
emotionally, physically and gave me back purpose, which we all need to
feel. I hate being a burden to my husband on those bad days, but he always
have something to lighten my load. Your wife is on Lyrics, I hope it works
for her. I couldn't take it, and I know others it effects their emotions,
and mobility. Will be praying for you and your wife. salena54
salena
Thehubbytodd, I feel for you & wife. I had to go through much of the same issues. I'd soaked my feet in warm water in a foot massager and my wife would rub a sports cream on my feet every night before bed. I took tramadol to sleep which made me loopy though. I'd elevate my feet and hopefully fall asleep before everything wore off. <br />
I couldn't walk for 2 years, forced to retire, moved into assisted living and in an power chair to get around. We even bought a van with an automatic ramp so I could get out once and awhile. I've tried Embrel, methotrexate, Lyrica, prednisone, oxycodin, and have settled in with gabapentin, fentanyl patches, mycophenalate (cellcept), and cymbalta. I've since developed ulcers and GERD from all the meds and worry but my neuropathy pain is tolerable between doses. I'm out of assisted living and walking again. Nearly 45 doctors, dozens of ER visits, and countless thousands of dollars til Mayo figured it out. It was hell on my wife and we had NO life. But we got through the worst of it for now. We've been waiting for the other shoe to drop, but it hasn't (yet). <br />
I hope I was able to give you some insight as to what we went through. I know it may not give you much solace for your situation, however there could be some light at the end of the tunnel for you. God bless<br />
<br />
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Welcome to Connect @thehubbytodd
I moved your message to this discussion thread about neuropathy so you could connect with @rabbit10 @johnwburns @bobsconnect @grandma41 @johnbishop and everyone else talking here. They know first-hand what it is like to live with neuropathy and may be able to offer some thoughts and advice.