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Waking Up On Fire

In the summer of 2006 my feet felt like they were on fire. I had been wearing athletic shoes to work all the time and thought I might have athlete’s foot. I tried treating my feet with over-the-counter products, but the burning did not go away. I started wearing different shoes but the problem persisted. I would wake up in the middle of the night and there was no going back to sleep.

Around Christmas my right leg gave way, while going downstairs, and I twisted my knee. Shortly after that I started having a burning sensation going up my right leg. It would last a minute or so and then would stop. I finally decided to make an appointment with my doctor when one night I woke up and thought my bed was on fire. It was my right leg again and it seared me half to death. When I climbed stairs it felt like my leg was going to collapse.

I was not able to see the doctor until after the holidays. He said he thought I might have a pinched nerve or Peripheral Neuropathy (PN).  He explained that PN is caused by many medical problems such as diabetes, vitamin deficiency, and low thyroid, but about 50% of the time no cause could be found. He ordered many blood tests and told me to come back in a week. I had never heard of PN so I went home and started investigating on the internet. I found a lot of information and also ran across The Neuropathy Association website.

When I returned to the doctor he told me that the blood tests were all normal. He explained that there was no cure for PN, but he could give me medicine to reduce the pain. I started taking Amitriptyline, gradually getting up to 100mg, for the pain and Trazodone 100 mg. for sleeping. I was to take both at night as I was still working and driving 110 miles a day. He told me to return in six weeks for a follow-up visit.

During those six weeks my symptoms were getting worse. I was standing in line at the drug store when a pain that felt like an electric shock went from my foot up my leg. I thought I was being bitten by something. The people in line thought I was nuts. This and the burning pain in my feet and up my leg were happening more often. I could hardly climb the stairs any more and had to drag myself up by my arms to get my mail. The medicine was helping with the pain but the side effects were just as bad as the pain. I had never had to any take medicine in my 63 years that affected me like this.

When I went back to the doctor’s office after six weeks I told him about the problems I had been having. He said that he was going to send me to a neurologist for further evaluation. I saw the neurologist a month later. She gave me an examination and sent me for an MRI, EMG and NCS tests. The MRI was done within two weeks, but the other tests were not done for another month. It was three months almost before I was able to go and see the neurologist again. She told me that she agreed with my doctor that I had PN, but it was not caused by a pinched nerve. She told me that I had arthritis low on my spine, but that was normal, that everyone has it, there was nothing she could do for me, and it was not necessary for me to come back and see her. She told me I should go home and learn to live with it. She did change my medicine from amitriptyline to nortriptyline as it has fewer side effects.

I was devastated. I was leaving on a cruise to the Caribbean, three days after I received this news, with my two daughters. I had always wanted to go there and this news sure put a damper on my trip. I started thinking about taking this medicine that was changing my personality, for the rest of my life. I could not think straight anymore. My eyesight was getting blurry; I had severe dry mouth and dry eyes. One morning I woke up and could not open my eyes. My eyelids were stuck to my eyeballs. I was having trouble walking and staggered around like a drunk. If I was walking next to someone my right foot would send me crashing into them. I did not like the prospect of having to learn to live with this for the rest of my life. Several times while standing on the balcony of the ship I thought of jumping in with the flying fish I was watching. That was scary.

When I returned home I decided that I was not just going to lie down and not try, I was going to find some way to live with this disease. I started getting information on the internet and reading the bulletin board at The Neuropathy Association. I realized that this disease is not going away and has the potential of being debilitating. It can progress quite fast and affect other areas of the body. My right hand was giving me trouble and I was having difficulty opening things and separating two pieces of paper. My right leg was getting worse and my left leg was getting the electrical shocks also. I hated the medicine but it did help with night pain. I was able to sleep through the night without waking up and not being able to go back to sleep. One day at work, my boss who I have worked with for over 30 years, said something that did not sit right with me. Any other time I would have just ignored his comments, but this time I blew up. He sat there stunned and I left the room in tears. This was not me. At that moment I knew I had to get off the medication or stop working.

My sister, Pat talked to her chiropractor and told him my story. He told her to give me his card and come in for a free consultation. I went in, because at this point I would try anything. He told me that he wanted to take an x-ray of my spine and he would look it over and to come back the next day and he would let me know if he thought he could help me. I went in the next day and he said that he could see where the arthritis was on my spine. It was close to where the sciatic nerve comes out of the spine. All it had to do was just touch the nerve and it can cause trouble. He said he could help with the symptoms and possibly get me off the medicine (or as he calls it, "the poison") I was taking for pain. He also has a physical therapist on staff and said I should start some exercises to help with the muscle damage in my leg. My insurance does not have chiropractic coverage but I decided to try to see if he could help. Within a month of going three times a week I could feel a difference. I started cutting down on the medicine and doing the exercises.

When I was evaluated by the physical therapist, as I was lying on the table, he lifted my right leg up, and then he said "now you do it." I could not lift it 2 inches. This really scared me. I could see myself in a wheelchair someday.

The physical therapist took a scan of my feet that showed they were out of balance, which is why I was having so much trouble walking. I have been doing the exercises faithfully. This is a whole new thing for me; I have a plaque hanging in my house that says "When I feel like exercising l lay down until the feeling passes."

When I realized if I hadn't seen for myself the damage that had already been done to the muscle in my right leg I would not have started the exercise I'm doing now to strengthen them.  I have joined a gym to use the bicycle and other weigh bearing machines.

I went back to see my primary care physician with the foot scan, hoping he would refer me to a podiatrist for help with my balance problem. He said PN has nothing to do with balance. I thought to myself, I know more about this disease then he does thanks to The Neuropathy Associations website. He did refer me to a podiatrist, and said if a neurologist had said that to him he would try anything too.

I am completely off the pain medication, this was a happy day for me and I feel like myself again. I still have pain in my feet, but I can live with that for now. I have not had many of the electrical shocks and now know I am not going to die from them. I hope to stay off the medication for as long as I can.

Thank you for this opportunity to tell my story, it does help a lot to write my experience down.

-Nancy N.

 

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