Discussions By Condition: Nerve conditions

Have neuropathy in both feet. Need treatment advice.

Posted In: Nerve conditions 8 Replies
  • Posted By: ItsDawn
  • January 22, 2008
  • 02:13 AM

About 3 years ago I began to have tingling and a feeling of numbness in the big toe on my left foot. This went on for a short period of time and then I started noticing that it felt like a sock was wadded up under each of my feet when I stood on them or walked. I would check, but the socks would be fine. Then, both of my feet started hurting a lot -- they would feel numb and tingly along with burning and freezing sensations, and sharp stabbing pains in my toes and ankles, and on the tops of my feet at the same time. My feet virtually felt like pincushions with thousands of pins and needles stabbing them. It felt like I was walking on ground glass and hot lava --. Walking barefoot on a hard flat surface causes extreme pain.
Eventually, my hands started tingling but as of yet, haven't progressed to the kind of pain I have in my feet.

My primary care physician sent me to three different types of doctors (a podiatrist, a neurologist, and a pain treatment physician) who did extensive testing, as well as to try to find some kind of pain relief for me. I tried a number of different medications, but nothing has helped. Cymbalta, an anti-depressant my doctor prescribed for me did give some relief, but I was unable to take it after trying it twice because I had severe reactions both times. Another drug, Lyrica also provided some relief but caused me to break out in huge spontaneous bruises all over my body. There were huge lumps under the skin where the bruising was. I looked like a dalmation with purple spots that would eventually turn yellow and green and brown before they faded away.

I recently tried a temporary Spinal Cord Stimulator. I had a portable system with part of a lead wire inserted in my back near my spinal column and the other part connected to a programmed transmitting device. I used it for 3 days but didn't get any noticable pain relief. I went to see my doctor to ask him if I could keep it for 2 more days and he agreed. A representative from the company who makes the SCS was there to re-program the transmitter so the stimulation (stim) would reach my feet. After many adjustments he entered 2 programs for me to use and see which if any would be helpful. Here's what happened:

When we got home I plugged the lead into the transmitter and turned it on. ZAP!!! :eek: I just about got knocked across the kitchen floor from the jolt, and the stimulation that followed felt like I was standing on a live wire in the water! I hit the 'off' button as fast as I possibly could, and had to sit down so I wouldn't fall down. I thought maybe the amplitude needed to be lowered so I turned it on again and ZAP!!! I got shocked again! Instead of turning it off, I leaned my head forward because doing so causes the stimulation to stop at once. Any kind of body movement will either increase the stimulation, decrease it, or stop it altogether because the lead wire isn't secured to any tissue inside my back where it was implanted, and when the body moves, the lead moves too. If the lead makes contact with the spinal cord, stimulation is the result. If the lead moves away from the spinal cord, stimulation stops. Okay, I turn it off again and wait a while until I get comfy in my Lazy Boy RockerRecliner. This time I lean my head forward before I turn it on so I can adjust the amplitude without getting zapped. It worked. I turned it on without getting jolted then decreased the amp. to as low as it would go and slowly raised my head to straighten out my spinal cord. I got absolutely no stim at all so I began to increase the amp. and as soon as I touched the + button, ZAP!!! Ohhh boy. . . I played with it a few more times then gave it up. I turned it off and left it off. I didn't call Jason because only he or another ANS Rep. could program it and I could only increase or decrease the amp which is for comfort level.

When I went to see my doctor again, I told him all that had happened and that I wanted the lead removed and that I decided to not have a system permanently implanted. He suggested that in a month or so, if I wanted to try it again, he would use two leads instead of one, and use a different SCS company. He explained how two leads would provide more accurate coverage and would be more precisely programmed, or whatever. . . I'll have to give it some careful consideration before I agree to another trial.

Has anyone had an experience like this? :confused: Has anyone been successfully treated for peripheral neuropathy, and if so, with what? My quality of life is zero (with the exception of seeing a therapist for depression, and using my computer to be online, to do everything that I can't do that requires socks, shoes, and walking) because I cannot be up and around on my feet for more than a few minutes at a time. It's too excruciatingly painful. Sorry this is so long but I really need feedback if anyone can help.

Thanks,
Dawn

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8 Replies:

  • I too have peripheral neuropathy and I have had it since it's onset in 1994. I have managed it on and off with a combination of: rest, eating healthy, drinking pleanty of water (no soda), minimal exercise at least, and minimizing stress level. Neurotin (800 mg) daily has helped me when I have flair ups and need meds. I think the key with most any kind of medical issue, neuropathy included, is keeping your stress level LOW. However, with all this said, neuropathy can also be a "symptom" of another disease itself. Keep track of any other changes you notice yourself going through. If so, see your doctor. Do not accept a blood test alone, INSIST on a 24 hour urine sample, to be tested along WITH the blood test. A 24 hr urine sample is a much more accurate test. There are several different kinds of previously known as rare diseases that are becoming more and more common. Most doctors were taught about them briefly in Med Sch. but have not encountered a patient yet with them. Therefore, most doctors are unfamiliar with them, until reminded. That's where you, or someone you know comes in. You have to do the background research on your own medical condition. Once you think you have it pin pointed, by the help of Google, etc. Approach your doctor with it and ask him to test for it. Most doctors are more than willing to test a patient for an illness when provided with a reasonable request based on medical researched information. Now, with that being said, one test that is rarely done but increasing becoming more and more common is "porpheria". It is often a combination of genetics gone hay-wire, sort of. Neuropathy is one of the possible symptoms a person can have with a particular type of porpheria. I am currently being tested for it now. Besides sending your blood and urine to a special lab in the US, you can perform a quick 24 hrs test of your own by collecting a urine sample of your own. Put it in a jar in direct sunlight (indoor window is fine) over a 24 hr period. Place the jar in the window one morning, check it the next morning. If your urine turned purple, or pink, or a shade of red, more than likely you have porpheria. That's the kind of test someone can do for an otherwise extremely rare disease/ condition that most doctors wouldn't even know about. I'm not saying that you have anything besides neuropathy, I'm just saying you might want to look beyond the neuropathy itself and see if it's a symptom of something else that might be treatable. For example, a B12 absorbtion deficiency "Pernicious Anemia," mimicks about 4 to 5 different diseases at once, but it actually just one. A person with this, given B12 injections, has just overcome those 4 to 5 diseases with the matter of a simple vitamin shot. It's amazing what you can overcome with a little bit of hard work and determination. Don't give up.Best of Luck,M&O
    MaddieOscar08 8 Replies
    • January 22, 2008
    • 06:07 AM
    • 0
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  • I too have peripheral neuropathy and I have had it since it's onset in 1994. I have managed it on and off with a combination of: rest, eating healthy, drinking pleanty of water (no soda), minimal exercise at least, and minimizing stress level. Neurotin (800 mg) daily has helped me when I have flair ups and need meds. I think the key with most any kind of medical issue, neuropathy included, is keeping your stress level LOW. However, with all this said, neuropathy can also be a "symptom" of another disease itself. Keep track of any other changes you notice yourself going through. If so, see your doctor. Do not accept a blood test alone, INSIST on a 24 hour urine sample, to be tested along WITH the blood test. A 24 hr urine sample is a much more accurate test. There are several different kinds of previously known as rare diseases that are becoming more and more common. Most doctors were taught about them briefly in Med Sch. but have not encountered a patient yet with them. Therefore, most doctors are unfamiliar with them, until reminded. That's where you, or someone you know comes in. You have to do the background research on your own medical condition. Once you think you have it pin pointed, by the help of Google, etc. Approach your doctor with it and ask him to test for it. Most doctors are more than willing to test a patient for an illness when provided with a reasonable request based on medical researched information. Now, with that being said, one test that is rarely done but increasing becoming more and more common is "porpheria". It is often a combination of genetics gone hay-wire, sort of. Neuropathy is one of the possible symptoms a person can have with a particular type of porpheria. I am currently being tested for it now. Besides sending your blood and urine to a special lab in the US, you can perform a quick 24 hrs test of your own by collecting a urine sample of your own. Put it in a jar in direct sunlight (indoor window is fine) over a 24 hr period. Place the jar in the window one morning, check it the next morning. If your urine turned purple, or pink, or a shade of red, more than likely you have porpheria. That's the kind of test someone can do for an otherwise extremely rare disease/ condition that most doctors wouldn't even know about. I'm not saying that you have anything besides neuropathy, I'm just saying you might want to look beyond the neuropathy itself and see if it's a symptom of something else that might be treatable. For example, a B12 absorbtion deficiency "Pernicious Anemia," mimicks about 4 to 5 different diseases at once, but it actually just one. A person with this, given B12 injections, has just overcome those 4 to 5 diseases with the matter of a simple vitamin shot. It's amazing what you can overcome with a little bit of hard work and determination. Don't give up.Best of Luck,M&O
    MaddieOscar08 8 Replies
    • January 22, 2008
    • 06:14 AM
    • 0
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  • I surffer daily with neuropathy myself. My pain management doctor was at least honest with me by telling me that a large percention of people never know the root causeot the symptom. We are therefore classified as idiopathic neuropathy. (Sounds great, eh?) But testing testing testing must go on. Much to your frustration it may take years to identify the underlying disorder. In the mean time your pain management doc and your neurologist must work toether closely (please ecxuse my spelling I must go slowlybecause of hand tremmiors and spasms). Have they offered you an epidural? Mine has and I am about ninety perce3nt ready to go with it. I will let youi lknolw if it works.
    kstaats61 1 Replies
    • January 30, 2008
    • 04:41 PM
    • 0
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  • I'm sorry to hear about your neuropathy. It sounds like you need some extensive testing. No, I have not been offered an epidural. My doctor knows me better than that. He's well aware that I don't do epidurals. Sorry, but I have known to many people that have had terrible side effects from having had epidurals. These side effects lasted for years long after having had their epidural. So, after seeing first hand what many of them have gone through, I decided long ago, I would not do anykind of epidural unless it was a matter of life or death. I'm not sure what to say about your neuropathy exception don't give up on looking for a cause for it. There has to be a root cause of your symptoms. Keep looking. You might want to ask your doctor to give you the Hoffman test. It's a real simple (informal) test. He'll test your reflex to a simple flick of you middle finger, in a downward position, with your hand in an almost cupping type pose. He's looking for the reaction of your thumb to this flick test. If your thumb remains still, holding it normal position, then you past. If your thumb twitches however, when your middle finger is flicked, you failed the test. Failing this test means that there is some kind of neurological damage in either one's spinal cord or in one's brain. This is a quick and simple test that done to identify either neurological brain or spinal cord damage, either of which of course could produce effects of neuropathy......just a thought. Hope all goes well for you. Best of Luck,M&O
    MaddieOscar08 8 Replies
    • February 4, 2008
    • 10:49 AM
    • 0
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  • I see my doctor in 10 days so I'll ask him about the Hoffman test. I wouldn't want to have an epidural either. Isn't that what doctors give a woman in labor to kill the pain? And also Maddie, I see you're taking Neurontin. Has it helped at all? My doctor tried me on Lyrica and Cymbalta and they both caused such terrible side effects that I had to stop taking them. (I tried Lyrica first, then a few months later I tried Cymbalta - didn't take them at the same time) The side effects might have been due to reacting to other drugs I take for my heart, pain treatment, and depression. I've tried Anodyne Therapy, TENS, ab exercises, and the SCS. My daughter is seeing a naturopathic chiropractor and she suggested that he might be able to help me. I checked out a website called ReBuilder Medical -- FDA Approved neuropathy treatment and requested information. So I still have some options available. I'd still like to hear from anyone else who suffers from this condition. I do a lot of internet searches and find out all kinds of things that I can talk to my doctor about. So please don't hesitate to share your story. Thanks,Dawn :)
    ItsDawn 7 Replies
    • February 5, 2008
    • 08:23 PM
    • 0
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  • Yes, Neurotin is by far the best medicine I have found to make a significant difference in my neuropathy pain. I started taking it almost 10 years ago. I read tons of reviews about the drug before I even tried it. I'm so glad I did. It really works for me. Keep in mind, people may have different reactions to different drugs. However, I have found that Neurotin works great for me. I will tell you that when I first started taking it (1998-1999) I noticed that it kind of made me feel.."loopy". They say that can be one of the side-effects for a while. That side effect has gone away for me; perhaps my body is just used to it now. For me, Neurotin just helps me feel some what, "normal". My advice: it's worth a try. Best of Luck,M&O
    MaddieOscar08 8 Replies
    • February 14, 2008
    • 03:23 PM
    • 0
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  • I don't know if this will help or not but my father has severe neuropathy in both feet as well caused by cancer treatments. No medication has worked for him, however he has found significant relief in a pair of pressurized boots. I am sorry I don't know the exact name of them but they blow up like a balloon then slowly deflate. He puts them on a few times a day and leaves them on for a half hour to hour I believe. These silly looking things have given him his life back because prior to them he was not sleeping more than a few hours total per day. Needless to say life was a bit difficult. He still experiences allot of pain however these have helped. He now puts them on just before bed and the pain relief lasts for most of the night. Usually he wakes up again in the night and puts them on a second time before morning. These were offered as a last chance relief from the doctor who had pretty much given up on Dad having any pain relief. We sure wish that it had been mentioned earlier! Oh, there are a few brands out there I know. Dad bought one of the pricier brands used which work the best. He also has a second pair that he picked up when traveling, they were cheaper and do not work as well.
    Anonymous 42789 Replies Flag this Response
  • Hello sdmom, I'm very sorry about all the pain your father has had to endure because of his treatments. I hope he is doing well in spite of it. Thank you so much for the information about the boots. I will ask my doctor about them, I'm hoping he will know about them. If not, I will find out somehow. They wouldn't happen to be Unaboots would they? I have a friend who is diabetic and she has a problem with her legs and has to wear Unaboots for the pain. But she has to leave them on for days at a time. I'm currently on 600 mg. Neurontin 3 times a day and it is helping a little-- maybe about 15 percent reduction in pain during the day. At night the pain seems to take revenge and escalate to the point of my having to take 10 mg. of Norco to dull it enough so I can get some sleep. I will do an internet search and see if I can find out anything else about the boots. Thanks again, Dawn :)
    ItsDawn 7 Replies Flag this Response
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