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Thread: Nerve pain worse - suggestions?

  1. #1
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    Nerve pain worse - suggestions?

    This rainy, temp fluctuating, soon to be in the 90's weather is making my nerve pain intensify, especially in my feet. Can't take Lyrica or Neurontin, got the "psych side effects" (tried years apart).

    I'm on the max dose of cymbalta...60mg 2x/day and still on 20mg OxyContin 2x/day from a recent hospitalization for back pain. Also use lidocaine patches for the "banding pain". I have a call into my physiatrist...but any suggestions? The pain in my feet is so bad I had to prop them up so no pressure from bed and I can't keep shoes on them.

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    Senior Member air ohs's Avatar
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    I'm on CESAMET PULVULE 1mg also known as NABILONE it works for me my nerve pain is legs and feet also. it i beleive is synthetic pot , but works great.

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    Senior Member flying's Avatar
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    sledgrl Like you I can not take Lyrica or Neurontin, or OxyContin, hydromorphone helped some but the constipation side affect are pretty tuff for me sense I can't eat any fiber, so I finally found out that medical pot worked pretty well for me. With out it I can not sit for very long at all, which is not a good thing for someone living in a wheel chair. But it my not work for you, hope you find something that does.
    T12L1 Incomplete Still here This is the place to be 58 years old

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    Senior Member NikkiMaya's Avatar
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    I feel your pain...literally . Medications don't work for me. I get minimal to no benefits and always get at least one unpleasant side effect if not more. Most recently I tried Lyrica and it was the devil in pill form. I went through terrible withdrawal when I came off of it and am just beginning to feel better two months later. Before that I tried Neurontin, Oxycontin, Hydrocodone, Nucynta, Amytriptylene, Tizanidene, Opana, Fentinyl and Lidocaine patches, the Spinal Cord Stimulator and a lot of other treatments and drugs too. I am just unlucky like a lot of folks.

    I also prop my legs up under my knees or calves. Sometimes I use ice packs to try to numb the pain, but never heat as it make it a lot worse. Massage helps a lot but only temporarily. I am lucky to have family members that will massage my legs, feet and hips when the pain is really bad. I am not sure if the massage is helping the nerve pain as I also have muscle pain and am very stiff and sore from spasticity, and the massage helps loosen up the muscles for a while.

    If you are anything like me and find it difficult to get out, you might spend a lot/almost all of your time indoors out of the sun. If so, your Vitamin D level could be seriously low. If your Vitamin D level is low, it can actually cause pain. You don't need additional pain, so next time you are at the doctor's ask for some routine blood work to get it checked. Fixing your level is as simple as taking a tiny pill every day, and you might notice a small decrease in pain. Just a few suggestions, and not anything major. I wish I could help more. Nerve pain is hell on earth!
    In our world constituted of differences of all kinds, it is not the disabled, but society at large that needs special education...to become a genuine society for all. -Frederic Major, Former UNESCO Director General

  5. #5
    I had low D and am very interested to hear that causes more nerve pain for you. Have you heard frrom anyone else that it had the same effect or studies? I am taking extra D now as I live in a very rainy area. I also wonder if the low D was the cause of my hair loss and soft, dry nails. I'm going to keep my D up now so I guess it doesn't really matter.

    I have a new theory that my pain increases with more intestinal pressure (gas, constipation, etc) so in addition to the stool softeners I do abdominal massage. there seems to be a connection.

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    Last year my nerve pain had increased and I was blaming it on humidity and change in climate moving from Arizona to Connecticut. My neurologist found that I had low vit D also and put me on a supplement for a few months. She said I probably had low D from wearing sunscreen all the time so even though I got sun exposure my body wasn't absorbing the vit D. My levels are in normal range now so can't blame the new pain on that.

    Thanks for all the suggestions. I wound up putting soft ice packs in the pillow case propped under my legs. It actually helped me sleep.

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    I have been having nerve pain which has decreased since my spinal stroke. I found these posts interesting. I never thought of using ice packs, but will give it a go. Are you saying that the nerve pain is worse when the weather is warmer? I live in So. Cal. and we do have a lot of heat in summer. Since my stroke was in Feb. I haven't experienced those temperatures yet.

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    Quote Originally Posted by AnnieM View Post
    I have been having nerve pain which has decreased since my spinal stroke. I found these posts interesting. I never thought of using ice packs, but will give it a go. Are you saying that the nerve pain is worse when the weather is warmer? I live in So. Cal. and we do have a lot of heat in summer. Since my stroke was in Feb. I haven't experienced those temperatures yet.
    I found the heat / humidity makes all my pain worse. I'm heat sensitive so that aggravates everything. The ice cools me back down but I also use it to try to numb away the nerve pain.

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    Senior Member NikkiMaya's Avatar
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    Darlagee22 Just to clarify, having a low Vitamin D level does not cause nerve pain. Over the past 10 years, several researchers have found an association between extremely low vitamin D levels and chronic, general pain that doesn’t respond to treatment. For some people, getting their Vitamin D level back up into the normal range is very effective at diminishing severe pain. However, this doesn't happen for everyone. Regardless, if you have a low level you should get it treated.

    Sledgrl I'm glad to hear the ice packs helped a bit. I have one on myself right now. I hope you are able to find something more effective very soon.
    In our world constituted of differences of all kinds, it is not the disabled, but society at large that needs special education...to become a genuine society for all. -Frederic Major, Former UNESCO Director General

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    Senior Member khmorgan's Avatar
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    I apologize in advance if this turns out not to be useful, but it is free:


    NSCIA Webinar
    A program of United Spinal

    Advancements in Managing Chronic Pain for People with SCI/D
    Wednesday, June 19 , 2013
    3:00 PM - 4:00 PM Eastern Daylight Time


    Please join us for this webinar.

    Register for this webinar

    Program Overview:

    Chronic Pain. It's a silent enemy. But for anyone who has it, chronic pain can take over your daily life. This webinar is designed to introduce you to technology options for managing chronic pain from surface stimulation to implanted devices. Learn about what it available and how to access these treatment options to zap the pain away.

    Presenter:
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    Ziggi Landsman
    VP of Online Relations
    NSCIA, a program of United Spinal Association

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