Neuropathy- Patient Experiences

Every now and then on the Blog it's important to remind ourselves and others how neuropathy affects people in the real world. Several questions have been posted to the blog, as to how neuropathy patients can convince the world around them that they are really in trouble: after all, it's one of those diseases which you can't see just by looking at someone. Seeing someone not respond to the one treatment or the other can also sow the seeds of doubt in people's minds but that's the reality of neuropathy and for many people an extra stress they could do without.

It's all well and good explaining the science and theory behind the disease and the drugs used to treat it but knowing that you're not alone with the way you're feeling, can help enormously. Presenting 'evidence' to family members, workmates and friends is also sometimes necessary - you can see in their eyes that they're wondering exactly how psychosomatic your disease really is and that can be depressing to say the least! Letting them see how others suffer from exactly the same symptoms can be both validating and educative - try showing them some of these short accounts from MedicineNet.com (see link below) and elsewhere on the blog - they'll maybe see you in a different light.

Patient Discussions: Peripheral Neuropathy - Symptoms

Published: June 20
...I have been diagnosed with Peripheral neuropathy and have a Nerve Conduction Velocity Test. It is only in my toes and test showed that it was not a severe case. As I am only 63 sometimes think about the next 20 - 30 years and its' progression although neurologist as said it will be fine! Would taking B12 and Folate be useful as I think what I have is 'idiopathic peripheral neuropathy.

Published: July 15
...I am disabled with peripheral neuropathy; I am on the highest doses of a series of medicine. We started at the lowest dose and each would work for a time and the pain would come back worse. Not just in my feet and legs although this is where it started. Mine is idiopathic neuropathy. For the last 2 months my feet swelled, mostly on the left side. Now they aren't swelling as much but the pain is unbearable and it is difficult to walk. The ankle on the left still swells, a lot of the time it feels like I have wide straps wrapped around the middle of the foot and pain shoots up and down the inside of toes and legs. I am under the care of a neurosurgeon and my family doctor. I just thought you might have some advice, since we seemed to be at the end of the rope.

Published: July 07
...I have peripheral neuropathy as the result of a nerve being compressed during a spinal fusion surgery. It has been a year now, and I still have the pins and needles, bee sting, electric shock and shooting pain sensations in my leg and foot as well as the loss of sensation and hyper sensation of the skin. I currently take 100 mgs of Lyrica three times a day. I will be undergoing a trial using a spinal stimulator that will hopefully lower the level of pain that I have. Then, if it helps, it will be permanently implanted in my spine.

Published: July 16
...I have peripheral neuropathy and have been taking Lyrica (75 mg, three times a day) for three years. I am always tired and depressed because it is not going away. It is most prevalent in the months when I have to wear closed shoes. My family does not understand the pain and anxiety I go through every day. They cannot see it, so they don't believe it. I am currently going to a chiropractor and am hoping that he will align my spine and neck to bring me back to what I was before. He uses manual adjustments with the neck and spine.

Published: July 15
...It began to have problems about 5 years ago, my hands and feet tingling and muscle spasms, they came and went but never stayed long, then a year ago I had problems with my right leg going numb from the thigh down and not being able to stand or walk on it. That lessened and moved to my hands, then to my feet working its way up my legs all the way to my lower back, not in the joints mid muscle with loss of feeling and sensations. Then it went to my hands with weakness and cramping. At times the pain is overwhelming and I get no relief from any of the medications prescribed so far. I want it to end one way or the other.

Published: July 14
...I have pain mostly on my left side of body. It's sharp pain although it has an accompanied sensation which is very disturbing and hard to tolerate. This sensation is like the feeling you get when you scratch your finger nails on a black board. I also get pins and needles along my arms and burning sensation mostly on my palms but at times it is all over including my tongue. When I am depressed, stressed or worried the symptoms seems to increase. This is a problem because I am fatigued from the feeling. I am booked in to see a pain specialist and neurologist in the future but I need something now. Has anybody had same experience symptoms and what helped?

Published: July 14
began to have problems about 5 years ago, my hands and feet tingling and muscle spasms, they came and went but never stayed long, then a year ago I had problems with my right leg going numb from the thigh down and not being able to stand or walk on it. That lessened and moved to my hands, then to my feet working its way up my legs all the way to my lower back, not in the joints mid muscle with loss of feeling and sensations. Then to my hands again with weakness and cramping. At times the pain is overwhelming and I get no relief from any of the medications prescribed so far. I want it to end one way or the other.

Published: July 09
Four years ago I started getting burning feet and lower legs which occurs daily with varying degrees of intensity and is worse at night, often waking me up. I have had extensive tests and no cause could be established. I take Vitamin B complex but this does not seem to help. I am reluctant to take painkillers as I was told they need to be taken continuously. At the time it started I was taking Ciprofloxacin for Prostatitis. Does anyone have similar burning pains and have the found any way to emliminate the symptoms?

http://www.medicinenet.com/peripheral_neuropathy/discussion-188.htm