Anyone here dealing with peripheral neuropathy?

Posted by rabbit10 @rabbit10, Apr 9, 2016
@janstar61

I have been dealing with fibromyalgia and small fiber neuropathy in my legs and feet. The best way to describe the sensations I feel- it is like my skin is bubbling and boiling. NON STOP. For me there is was no break in the pain. I have been stable the past two years with a tolerable level of pain as the result of high dose Lyrica and a Butrans opioid patch. I am now able to function, take my dogs for walks, and take care of my family.

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I also have severe neuropathy pain in my feet, legs, hands, and feet 24 hours per day. I have been taking 4mg of Buprenorphine (pills you dissolve under your tongue) twice a day for almost a year. It helps take the edge off somewhat, but my pain level is still high. Have you also tried the pills or just the patch? I am wondering if the patch would work better for me.

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@cwallen9

I also have severe neuropathy pain in my feet, legs, hands, and feet 24 hours per day. I have been taking 4mg of Buprenorphine (pills you dissolve under your tongue) twice a day for almost a year. It helps take the edge off somewhat, but my pain level is still high. Have you also tried the pills or just the patch? I am wondering if the patch would work better for me.

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My doctor has never tried the pills. I was already on a fairly high dose of Lyrica before I was put on the patch. I think he went with the patch for convenience. I really love it. It seems to give me steady pain relief. No troughs. Everyone seems to be all excited about IVIG possibly for SFN. My neuro told me that even if my insurance paid for it he would never recommend it for me. He said it is not a cure. I would have to be on it the rest of my life and even though many doctors say it is safe, he said there still is potential for serious side effects. Not sure how other peoples doctors feel about it.

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Are you talking about the steroid IVIG? I was on a low dose of steroids (pills, not IVIG) for awhile. It seemed to help a little but I was worried about future side effects, so I went off of it. Are the Buprens patches expensive? What does are you on?

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@cwallen9

Are you talking about the steroid IVIG? I was on a low dose of steroids (pills, not IVIG) for awhile. It seemed to help a little but I was worried about future side effects, so I went off of it. Are the Buprens patches expensive? What does are you on?

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I have been on 7.5 mcg patch for the past two years. No, I don't think it is a steroid IVIG as far as I know. Is there another kind of IVIG? I remember when my mother in law was battling severe RA . She asked her doctor to put her on steroids. He told her he would rather she be on opioids. He said long term opioids won't kill you, but steroids will. For those of us who are responsible with our medications, we are being harmed by the addicts who are making it harder and harder for those of us who really need it, to get pain relief. I get so angry.

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Thanks for the information. I am on 4mg twice per day pills. I would rather use a patch. I will be on Medicare in October and I think I get much better coverage for the patches than my current insurance. It is so hard to find decent doctors that will prescribe buprenorphine. All the current laws do is make people have to go to disreputable doctors to get the medicine they need.

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@ess77. Gave up on the Lyrica. After 2 days could not handle any more of the dizziness. Almost fell a few times and could not function that well. Could not even work on my canes. Cleared up and back to normal, such as it is! Shingles almost cleared up and can tolerate the rest of the pain. Beautiful day today in Tampa, sunny but hot. Working on my cane, going to have another good meal then back to Dade City tomorrow. Wishing you the best of everything and thanks for being there.

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Yes!!!! It’s awful!!!!! Having trouble walking my feet burn so bad!

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yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer

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@zailey

yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer

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Hello @zailey, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear you are in pain and having trouble walking. I read your previous post in the Anyone been diagnosed with arachnoiditis after spine surgery? discussion here: https://connect.mayoclinic.org/comment/601439/. Are you able to share a little more about your diagnosis and your symptoms and any treatments you are on?

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@zailey

yes it is very painful and I also have trouble walking, early evening restless leg syndrome sets in and lots of times I break down and cry, Sometime I think I cant take it any longer

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That’s what I do, break down and start crying! I can’t take no more pain! I’m still working, can’t afford to retire! It’s awful!

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@jimmy 370
Im so sorry you are having to deal with is and still working. I dont know your financial situation, but can you not retire on social security and you could still work part time.

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@johnbishop

Hello @zailey, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'm sorry to hear you are in pain and having trouble walking. I read your previous post in the Anyone been diagnosed with arachnoiditis after spine surgery? discussion here: https://connect.mayoclinic.org/comment/601439/. Are you able to share a little more about your diagnosis and your symptoms and any treatments you are on?

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Hello @johnbishop
Thanks for your reply. 21 yr ago I went thru a 13 hr surgery at Vanderbilt hospital to remove a foot long tumor that was attached to my lower spinal cord and all the sciatic nerves, had part of bone that covers spinal cord removed plus 4 disc removed. Dr said they had to hand pick tumor off the nerves and then washed all the nerves and put back so all of my nerves are displaced and recent MRIs show nerves stuck together and MRI shows I have arachnoiditis.. I was on extensive therapy for 6 month after my surgery and could not walk for first yr and also could not set up due to nerve pain.. was in hospital bed at home for over a year. The nerve pain from waist down to end of my toes was like being on fire. At times I did not want to live. Was sent to Pain Clinic and on oxytocin for approx 10 yr. 80 mg 3 X day, I started decreasing the mg of oxycontin little at a time until I was off and now Im on 10 mg 0f oxycodone 4 X day plus gabapentin 3 X day.. I have severe neuropathy and restless leg. I take 2mg of pramipexole for restless leg but sometimes it may take an hour or longer for the restless legs to calm down and the same time my legs and feet are on fire so I just sit or walk floors and cry..I have seen different Neurosurgeons in nearby city of Knoxville TN and they said they could do nothing to help and said they would not touch my back. So I have lived the past 21 yrs in pain but I do thank God for being able to walk again and just to set at my dinning room window every morning and watch the sunrise over the Great Smoky Mountains. Oh by the way I will be reaching the age of 70, this yr.

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