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  • desperate with neuropathy

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    Old 11-08-2014, 02:45 PM   #1
    cueva
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    desperate with neuropathy

    I have been diagnosed with SFN since 10/1/13 and this year with large fiber too. have been prescribed by neurologists Gabapentin, Trileptal and Lyrica but none seems to alleviate my pain. I also have failed back surgery and tears on right hip. I have been prescribed by pain manager morphine sulfate ER 60 mg X3/day.

    I am in constant pain (my skin burning, pin & needles) cannot wear shoes and clothes are bothersome. Taking a shower is painful.

    Any comments please would be greatly appreciated.

    Cueva

     
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    Old 11-08-2014, 09:29 PM   #2
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    Re: desperate with neuropathy

    Hi!!! Am sorry to hear what you are going through - I have had the PN since 1995 and over the years, have found no relief with the same medications you are taking.

    I don't know what triggered your condition, maybe the surgery or a fall.............Mine is genetic and now that I have diabetes, it is difficult to figure out what is going on each day. I also don't know your age.

    I am 72 and have no feeling in my feet - the pins and needles, the muscle pain, impacts my balance and my mobility. However, the first thing I will suggest, don't try to figure out each day what is going on with your body. It will drive you nuts!!! I would think I had one thing under control, and the next day it would be something else. Now, I will tell you what I have done and am doing to deal with the pain and everything else - first thing you have to know, it involves exercises (which can be painful in the beginning as the nerves and muscles have deteriorated - also when you start walking differently to compensate for the pain, all the old muscles sort of relax, and the new ones you are using are not happy about the new workload and they rebel.

    I am determined to walk decently again and I never expected that at my age me or my body would forget how to walk properly. First you need to watch your posture and depending on what kind of back surgery you had, you need to get a Physical Therapist who is cognizant of the ins and outs of neuropathy to show you how to progress. Stretching your feet tendons and ankle muscles is an easy way to start and you can do that in bed.

    I worked with a PT and my body did not respond to the normal exercises, so WE adjusted them (and this work with a PT means a team effort - you know what your body can and cannot do and the time. Maybe you can call the Neuropathy Association for a referral.

    It isn't easy or fun to have to do these things, but for me exercise is giving me less pain and more control even though it can be slow and frustrating.
    What used to be so easy, like standing with two feet on the floor and not losing my balance - it takes effort for me to do that now. But I am getting better at it -- you have to be consistent at least every other day and vary the exercises.

    In my case, for some reason that no one understands, my leg muscles get very tight at night (you should see me try to get out of bed without a few leg stretches, - no way I can walk a straight line. The muscles tighten up after I have been sitting for a while also.

    I hope some of this info helps - and if you have back problems (which I have also) you have to get YOUR own set of exercises and routine. There are simple things like going up a step (not too steep) and coming down with each foot and keep increasing the time as you can - also a great one is using that step and going up with one leg then bringin the other up and then reversing the sides.

    You need to get angry enough at this condition to defy it and fight it - you may not get 100% but you will know that you have made a positive difference for you and your life. God's Blessings and will keep you in my prayers

     
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    Old 11-12-2014, 03:57 PM   #3
    cueva
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    Re: desperate with neuropathy

    I Thank you for your useful description, history and enthusiastic encouragement. I am 74 after lumbar surgeries, did I say that already?
    I am going for PT on 12/19/14, but do not have the appropriate clothes,
    cannot wear shoes, my skin hurts and my feet of course are in pain.
    My concentration is poor, I will have to write another day. God bless you always.

     
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    Old 11-15-2014, 03:52 PM   #4
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    Re: desperate with neuropathy

    Elizabeth,
    This may sound strange, but I have lost weight and because of the neuropathy due to SFN and edema, I need special shoes and clothes. Do you have any idea where I could find such items through the internet. I am aware of Macy's, but I tried and they do not seem to have things appropriate. I am 74 and my cognitive skills are not as they used to. please help

     
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    Old 12-27-2014, 03:45 PM   #5
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    Re: desperate with neuropathy

    I could not go for PT because the wound on back heel has not healed and still does not have diabetic shoes (although I am not diabetic but seems to be the ones I need, given the ulcers and deformity in my feet). I am thinking in God.

     
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    Old 12-27-2014, 04:50 PM   #6
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    Re: desperate with neuropathy

    I have PN I started a few years ago with a podiatrist. He suggested that low B12 could cause this. I had my B12 checked and it was extremely low. I am 67 and doc said must take via injection. Have been doing monthly myself ever since B12 is now in normal range. I have since been diagnosed with diabetes type 2. They say that is what caused my neuropathy. I started on 600mg of gabapentin it has been gradually increased I am on 1100mg 3x day. It does help. Doc tried to change me to lyrica it was a little more expensive. When copay went to $100 month I asked doc to go back to gabapentin which she did. I have tried everything tens, low level light therapy nothing has done away with the pain as I said the gabapentin does help. I am trying a supplement Pynogenol which a friend says made his neuropathy pain go away. He can't tell me how long it took so I am keeping a diary. I ran out a while back and realized it had been helping. I get mine from The vitamin shop 30mg 180 capsules. I take 60mg 3x day. Still having pain but maybe some day it will go away. Good luck to you.

     
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    Old 12-28-2014, 03:48 PM   #7
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    Re: desperate with neuropathy

    Nicelady, thank you for the Pycnogenol tip. I will try it with 100 mg X2 and see what happens. I have idiopathic edema since June 2014 and gabapentin side effect is edema.
    Thanks anyhow.

     
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    Old 12-29-2014, 08:10 AM   #8
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    Re: desperate with neuropathy

    I have had some success with Horizant ER, a more easily absorbed form of Gabapentin, and Nucynta ER for pain. I also have Baclofen for when I have bad muscle spasms. I hope that helps.

    All the best,
    SFN Warrior

     
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    Old 12-29-2014, 12:35 PM   #9
    cueva
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    Re: desperate with neuropathy

    SFN Warrior, thank you for the Horizant ER, Nucinta ER and Baclofen, I will mention to doctors and see. I have heard of Nucinta and Baclofen but not of Horizant ER. How expensive is Horizant ER? I am on Medicare and AARP. I am on morphine Sulfate ER 60 mg X2 although it was RX X3-I am in great pain but I think it is too much. I was on Trileptal (Oxcarbazepine) but it produced red spots under skin when I augmented to 225 mornings from 150-keeping 300mg at night. Strange reaction I would say after several months on it.

     
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