neuropathy [Archive] - HealthBoards Message Boards

stserrano

08-16-2003, 07:40 PM

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delrae4753

08-16-2003, 09:19 PM

Boy you are sure having a rough time when you are taking your neuropathy meds are u taking r=them with fod if not perhaps that might help just something small on you stomach like dry toast or juice even. Has your Dr tried u on gabapentin or nortriptyline both of those have worked well for me.....

cbjordan

08-16-2003, 09:25 PM

Have you taken neurontin yet? Thats what I'm taking and it is helping along with advil during the day and darvacet at nite.

Celia

cbjordan

08-16-2003, 09:27 PM

Forgot to tell you that I was just diagnosed 4 months ago also. I too spent lots of time crying until I went on the neurontin. I still have my bad nites, but for the most part, the med. really does help me.

Celia

stserrano

08-16-2003, 10:26 PM

I have taken Gabapentin and Gemfibrozil before the Zonegran and have had the horrible side effects of nausea and vomiting. I did try with food with the same results. Is neuropathy a progressive condition or can I expect it to remain about the same? My doctor told me it is a consequence of diabetes but I do not have diabetes. It just came out of nowhere. I am moderately overweight and have been dieting to ward off the possibility of diabetes. Having success at weight loss I might add, 20 lbs in 3 1/2 months. It's good to hear from others who are in the same boat as I am.

avia

08-17-2003, 03:58 PM

There are so many things that can cause neuropathy other than Diabetes. Lupas, Celiac Disease, B12 deficiency (bigtime)MS, Thyroid Disorders, Gillian Barre Syndrome, Lymes Disease just to name a few. People jump in here to add anything to my list.

delrae4753

08-17-2003, 08:35 PM

I have also read that the neuropathy can come from unknow sources, for the most part neuropathy can be a progressive disease there is no reversal, it can contain itself for a while and then start up again just ask Avia she knows as well as I do I was diagnose about 4 months ago with the diabetes but the neuroapthy I have had 2 years this september when diagnosed, there are good days and bad days then there are combined days of both good and bad, and lets not forget rls while we are at it sometimes goes with the nwuropathy any questions ask away we will be glad to assist......... thats why we are here to support each other.

cbjordan

08-17-2003, 08:44 PM

The doctors tell me that my neuropathy is caused from a spinal cord disease, called syringomyelia. Anyhow, found a foot dr. that has done a special study of neuropathy and says that he hopes to bring me into remission with my neuropathy by doing the things that he has suggested. He even says that he does not think that my feet will drop to cause me the falling and needing a cane to walk with. I am hoping and praying that he is right about this. Right now, I have good and bad days and especially the nites. Three nites ago I was in sooo much pain I could hardly stand it. This is a misterious condition I am discovering. I hate the "tight sock" feeling, anyone else have this too?

Celia

delrae4753

08-17-2003, 09:49 PM

I had the tight sock feeling for a while but that finally went away. its the dullness i have at the bottom of both feet and all the toes that drives me up a wall would love to walk around in socks or barefoot but that will never happen... sometimes I even get the sharp stabbing pains on the top of the toes. but the imaginary bites on the ankles and shins will really drive u up a wall.

stserrano

08-17-2003, 10:08 PM

Thanks to all for your input. It has been a big help. Today has been a better day and I slept fairly well last night. Another thing I have noticed is a tendancy to stiffen up (muscles) as I go to sleep, before I am actually asleep I find myself in this condition and tell myself to relax, this I do. As I progress with this illness?? disease?? what is it? Going through the many comments being made I can relate to quite a few of the symptoms, some of which I realize I have had for sometime. I have had trouble with my legs for many years. I have had to use a wheelchair for grocery shopping, the mall etc. I now have an electric cart and it gives me the needed independance I want and need. Has this Neuropathy limited others as far as walking etc.? I will be 64 in about 3 weeks and I look to my future and wonder how it will be, I feel so bad for those of you who are still so young and are in this pain.

scotchirisheyes

03-11-2004, 09:35 PM

I was diagnosed with Peripheral Nueropathy 4 months ago. Each month I have been given a new drug and each time I have had a horrible reaction. I get so sick I want to die. This last one, Zonegran only took one dose and 6 days later I am still nauseous after being in bed the first 4 days. I take Tramadol for the pain every 4 hours but that does not completely eliminate the pain. I go to the Doctor on 9/11 but now I am scared to death to try anything else. The pain is almost as much as I can bear and I don't want to cry anymore!

My husband, for the past year, has been suffering with nueropathy. We found an answer. It is called Anodyne Therapy. It is administered for the first 6 wks through a Life Care nursing facility (on an outpatient basis), by a physical therapist. Medicare and private insurance does pay for this. You go 3 times a week. It is not painful and within the first two weeks he noticed a HUGE difference in the burning and pain. We have purchased a home unit and he now uses it several times a week here at home, to maintain the progress made. The therapy uses light to stimulate circulation. It is also used for arthritis sufferers, sprains, trauma, and many other injuries and ailments. It has been a lifesaver for him. His diabetes has been under control for a long time, but suddenly the Nueropathy reared it's ugly head. He is a teacher and coach who is very active but, is on his feet LONG hrs on cement and hard surfaces. He could not have gone on much longer. Check this therapy out. MUCH luck and many blessings.

sunny6

03-12-2004, 03:13 PM

scotchirisheyes

03-19-2004, 09:24 PM

Dear One,

Much luck and many blessings right back to you and your husband! I've been reading things about infrared phsycial therapy and it sounds quite interesting and non-invasive. Did your husband experience an agrravation of symptoms before the pain improved? I understand that an increase in discomfort can happen as the nerves are getting "rewired." Any more info would be delightful to read. :)
Thanks for bringing such joy to this board and for sharing your husband's great news. This PN really affects the entire family, not just the "patient." I'm sure you were a support to him as he waited to find something to help.

Bless you and him,
Sunny

You are so right. It does affect the entire family, especially the one enduring the pain. He felt as though his physical problems were limiting the entire family in activities, vacation choices, general attitude, etc. In answer to your questions about any aggravating symptoms or possibly exacerbation of symptoms.....I do not remember that he had any. He began to notice a difference within the first week and from that point the relief increased greatly. When he had to stop the treatments, while insurance processed the order for his own home unit, the symptoms returned within a week. That was VERY difficult to endure. Once he began again, he did it 2 X a day for the first week or two and now does it 2-3 times a week. He is now back to the point he was at at the end of the initial 6 week trial experience. I pray you find relief abd that you found this helpful somehow. This disease is horrible. God Bless.

scotchirisheyes

03-19-2004, 09:32 PM

You are so right. It does affect the entire family, especially the one enduring the pain. He felt as though his physical problems were limiting the entire family in activities, vacation choices, general attitude, etc. In answer to your questions about any aggravating symptoms or possibly exacerbation of symptoms.....I do not remember that he had any. He began to notice a difference within the first week and from that point the relief increased greatly. When he had to stop the treatments, while insurance processed the order for his own home unit, the symptoms returned within a week. That was VERY difficult to endure. Once he began again, he did it 2 X a day for the first week or two and now does it 2-3 times a week. He is now back to the point he was at at the end of the initial 6 week trial experience. I pray you find relief abd that you found this helpful somehow. This disease is horrible. God Bless.

Oh! One more thing. He does take Nuerontin 3 times a day. This combined with the therapy has made the difference. He has recently retired from coaching but not from teaching. I think this was a wise move on his part. Being up on his feet on hard surfaces running, walking, jogging, etc......was miserable. He misses it all horribly but feels much better. So, altering his daily schedule, taking the Nuerontin and doing the Anoedyne Therapy, for him, has been the winning combination. We have a trip planned to the Grand Canyon this summer. He is actually looking forward to it. I hope you will find some relief soon. My prayers are with you. Check this out.....you have nothing but pain, to loose!!!!!!

sunny6

03-19-2004, 10:46 PM

Thanks, Scotirisheyes, for your warm support and your generous prayers. They are well received and appreciated!! I did not tolerate Neurontin; it gave me great brainfog. I am glad that it is helping your dear husband, along with the Anodyne.
Your encouragement is so welcome and helpful.

Blessings,
Sunny

scotchirisheyes

03-24-2004, 08:34 PM

TLB

12-28-2005, 07:38 PM

Have you tried Anodyne Therapy? The studies indicate that it is about 83% effective in Diabetics and about 70% effective in non-diabetics with PN. It is non-invasive with no side effects, so it can't hurt to try. It is great for restoring sensation and for pain relief- my grandmother continued to take neurontin, but the dosage was reduced by about half- plus she could sleep through the night and even wear closed in shoes :-)

macro

01-03-2006, 05:19 PM

Have you tried Insulow (R+ lipoic and biotin)?

there is both considerable clinical and anecdotal support for its use in neuropathy, diabetic and otherwise.