Saturday 8 October 2011

Forum Advice on Dealing with Neuropathy

You will see the same comments from today's post, on most sites and forums dealing with neuropathy. I have taken a sample of comments from one forum but both here and on other sites, the same sorts of reactions go on for page after page. They don't make cheerful reading and highlight how confused people are, both with the disease itself and its many variations and the medications that are routinely prescribed to help with the symptoms. The fact remains that a certain medication, or supplement, or alternative remedy will help some individuals but not others and thereby lies the frustration of neuropathy. Until a major breakthrough is made (and don't hold your breath folks!) 'suck it and see' will remain the doctor's philosophy on treating the problems we all know about. Is it good enough? Do they have a choice?
The comments come from a health forum on Topix.com (see link below) and as always, the names are removed to take account of sensibilities.


Try home remedies for neuropathy

January 2010
I suffer and I mean suffer, with neuropathy for over 20 years. Every doctor I"ve seen has prescribed me with one terribe pill after another. Lyrica, makes me feel like a zombie. Cybalta, which is for depression knocks me out all day, Im trying neurontin , but it also makes me feel so weird that I can't work on it, So I take larger doses on the weekends. But that ruins my weekends, and Im seeing no relief at all. So now Im looking for herbal remedies, because I've got this throughout my whole body now. And I dont want to end up in a wheelchair unable to move a muscle . If anyone knows of any herbal relief I'd really appreciate the news. Burning and numb, in Ohio.

March 2008
There are a couple of other things I would recommend for someone with Peripheral Neuropathy, something I also suffer from.
I've found Solarcaine with Aloe (a green gel, used mostly for sunburn) helps--it has lidocaine in it which helps to numb the skin. And capzaicin, under the brand name Capzazin, helps, too. Capzaicin is a very spicy pepper, which helps to lower the amount of Substance P in the nerve endings, when applied.
Sometimes, the extremely hot sensation from the neuropathy is worse than the stabbing pain, and I've been told that over time, the pain will diminish and numbness will take its place.

December 2008
My husband has horrible pain every day and night from neuropathy in his feet. I massage them every night for him. Only to get a small amount of relief from the pain. Do you have any suggestions for home remedies besides what you have suggested.
He works very hard every day standing and climbing ladders. So this causes a large amount of pain. Please help!

January 2009
H F wrote:
My husband has horrible pain every day and night from neuropathy in his feet. I massage them every night for him...
How on earth does he stand you touching them? I was diagnosed in Jan '08 and I have had a really tough time. My diagnosis came a year and a half after I had been complaining to my Dr. about my feet hurting. We just thought that it was where I had been working so much. Sometimes it feels as if the tops of my toes have been cut off and exposed. And just forget the shower head! The water hurts! I will keep him in my prayers. I had heard that vitamins which support the nervous system help, but I haven't seen much of a difference. God Bless!

January 2009
I suffer from that too....did your feet change color? mine did...and the pain is traveling up my legs. My DR. says nothing can be done the damage has allready taken place, only thing he can do is prescribe medication to slow the disease down.The pill known as Lyrica really helps...but is very expensive...any other recomendations will be helpful...thank you.

January 2009
My feet sometimes seem really red and other times, reaaly white. They burn, alot! I am currently taking Neurontin, but I hear Lyrica is better. I do not have insurance, so believe me I know about expensive precriptions. Pfizer has patient assistance programs, maybe that can help anyone who is stuggling to pay for meds. I had to go to the ER one night , and the dr.I saw has neuropathy. It so helps to be able to talk with someone who understands what you are going through. Sometimes when I tell people what I am experiencing, I feel like a hypacondriac (sp?). Also, I wear Crocs. The nubbies help increase blood flow, therefore creating new nerve endings. Also, Merrells. They provide good airflow. Here lately I have been able to keep lotion on my feet and that helps. For me night time is the worst! When I lay down, my feet have me to the point of crying. God Bless! I am praying!:)

January 2009
K wrote:
My feet sometimes seem really red and other times, really white. They burn, alot! I am currently taking Neurontin, but I hear Lyrica is better. I do not have insurance...
K....ask your Dr. for some free sample of lyrica...if he or she has it on hand... my Dr. gave me a month and a half. it really made the pain go away at night...and made the day more pleasant I will keep you in my prayers and hope your Dr. can help you...Lord bless you...

January 2009
Thank you so much! As a mother of three, I am not allowed to be "out of commission." I have heard that the Lyrica would help, I guess I just didn't realize how much. Could you feel a change pretty quickly? What you taking before? The Neurontin is all I have taken and it zombifies me. Thanks again!

January 2009
K wrote:
Thank you so much! As a mother of three, I am not allowed to be "out of commission."...

Hi K...Lyrica doesn't make you feel woozie or out of sorts it,s not a opiate, it works within minutes, I have to take it every eight hours, I take hydrocondone too it helps, it takes the pain away too... hope and pray your Dr. can help.

March 2009
I am taking 900mg of Neurotin and 150 of Lyrica and I haven't seen ANY relief. How much are you taking to get relief? Is there a specialist in this Neuropathy field? My neuruolist is not helping me a bit. Have had Cat Scans amd MRI to see why I have this prolem. Nothng came up to show why:( What should I do next?

March 2009
Mine has gotten worse! My feet hurt so bad lately, that I can't even walk! I go to the doctor on Wednesday. I have also noticed that the same shooting pain that I feel in my feet, I also feel in my finger tips. Please just pray for me. Sometimes I feel misdiagnosed. I was giagnosed with Diabetes and Neuropathy at the same time. There for a while I thought that maybe I was battling depression, but I am not a depressed person. Then I began to think that maybe the neurontin is messing with my emotional state. Is anyone else feeling this? Neurontin does NOTHING for my pain! Thanks for all the input. It helps to know that I am not the only one experiencing all of this!

April 2009
I used to work for a neurologist and i hate to tell you but Neurotin can cause depression also can actually magnify the pain. Neuropathy can also be found in any limb. This includes your hands.

May 2009
Be careful - neuronton turned me into an unproductive depressed angry sad person. At first it helped a lot then slowly more and more was necessary - then soon enough the symptoms were as bad as the pain. Big ole bummer!

June 2009
My husband also suffering with horrible pain in feet with neuropathy. there is no relif to his pain from 2months. he is taking pregablin 150mg, supractive tab's. but there is no relife please help me to relife my husband from neuropathy. please help me.

August 2009
I have had neuropathy now for 8 mos.I'm on 900mg of gabapentin and there was relief at the beginning but now it doesn,t help at all.Will a neurologist help?

August 2009
I have Diabetes 2 with advanced neuropathy and am having a terrible time.,was up most of the night last night .I have an app. with a neurologist this Friday .Will let u know .A lot of doctors don't believe your pain. i have tried neurontin, lyrica-no don't work. Decent strength pain meds-timed release are the only thing that helps. I
am currently between doctors as mine retired suddenly and am really suffering.

August 2009
I am on 1200mg of gabapentin a day. For the first few days it helped and then slowly stopped working less and less. I have pain in my lower back, shooting pains in both legs, stinging pain in both feet. And Im partially numb in one leg and foot. Back surgery didn't help. And now I have problems sleeping. I feel like a zombie. I have tried Lyrica and Savella with no results. I really need some help and don't know where to turn. The neurosurgeon told me that he has done all he can do for me.

August 2009
I have "polyneuropathy" but it's worse in the feet and lower limbs. I take Neurontin with some relief. Have had this for 12 years and am now age 72. Doctors say in 80% the cause is unknown. In my case the cause is known - heavy drinking over man years. I quit altogether 12 years ago as my feet and legs were feeling "funny." Since then have had the neuropathy which waxes and wanes but is always present and like "death by a thousand cuts."


...and so on!


http://www.topix.com/forum/health/TMM5KUTP0TS4K5KRT

1 comment:

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