Neuropathy

[lini]

I am glad to have found this forum...I'm glad to know I'm not the only one suffering from this horrible disease. I wonder how many people have their life disrupted by this disease? Except for the Jack Miller Center, I don't believe there is much research and certainly no huge efforts being made to find cures, etc. Mine, like many others of you, is idiopathic. I've been to podiatrists, nuerologists, blood doctors...you name them. I've had ultra sounds and MRIs. I've had every blood test there is. I've been through Lyrica and nuerontin with no relief. I continue to take 1800 mg of neurontin a day. Six weeks ago I had a total knee replacement and, until the last few days, took pretty heavy doses of Vicodin and some Ultram and Darvocet. For awhile, the pain from the replacement was so overwhelming that the PN wasn't such a huge factor in my life. Now that the worst of the pain from the replacement is over, I'm right back where I was. I'm discouraged and exhausted from the PN. I take Ambien at night so I do get some sleep, but without it I wouldn't. I'm a 66-year-old woman with hypothyroidism and controlled high blood pressure I take B-12. I have no signs of diabetes and am continuously tested for it. My cholesterol is fine. I've never been in an accident or had major injuries, no cancer. I just seem to have this god-awful pain, burning, etc. Thanks for listening - it's good to hear from people with the same problem

[pikwick]

Get ready for little or no help. My neurologist offerred 3 medications and said go back to your doctor. That was it. I am able to get 6 to 8 hours a day of relief with 2 medications.
Hydrocodone 10-325 (codiene) and Lyrica. My wife or friends cannot understand why I usually do not care for any activities. These medications only help give you some time each day to function and thats it. Went to the pain management clinic. In less than 5 minutes the doctor said, you have neuropathy, if the above meds help, go back to your doctor and get the prescriptions. Goodbye.
The issue with codiene it is a narcotic and you do build up a resistance to it. But I found the Lyrica, even though not classified as a narcotic, once you are on it, ggod luck stopping it. And after 8 weeks or so, it seems you build a resistance to that as well. Pikwick

[higgins]

I have neuorpathy as a result of chemo. My feet, or the front part and toes, feel like I had stood outside in the cold for hours. I was really happy to hear that sitting in a hot bath brought relief. I only have a shower, but was considering getting one of those foot baths that have heated swirling water, but didn't know if it might help. I will get one my next trip to town. Thank you for the suggestion, and I hope you get some further relief soon.

[pikwick]

I understand your position. No one understands the constant pain and the bleak out look of being on a codeine product which gradually loses it's effect, but that and Lyrica is all that helps me. What is a narcotic? If apples helped, you'd be addicted to apples. What is the difference. My wife after two years of hydrocodone, is finally starting to understand that it IS the only form of relief I can get.
Pickwick (actually, Phil)

[pikwick]

Can't remember everything you said in your posting, but I understand. My neurologist in his wing-tips, says, you have it, here are a few of the medicines that "might" work. If Hydrocodone works, fine, go back to your doctor and get some. That's it, 5 minutes on the first visit back after the initial diagnose.
Went to the pain management clinic (1-1/2 months wait) He says, you got it, if Hydrocodone workks, go back to your doctor and let her prescribe. About a 5 minute conversation. And I have a 60 mile drive.
Go to my doctor and she asks, well what works for you? It is unbelievable. And the spouse or friends, they just cannot understand the scope of the 24 / 7 pain.
Yes I would like to converse more. My name is Phil. You may e-mail me at [moderator note: e-mail address has been removed]
Pikwick

[Dianne]

I haven't been on here in a long time and I find it really sad to see that there are so many of you out there that have had the same experience with doctors that I had. We all turn to doctors to look for answers and relief and when we have conditions that they don't know how to take care of instead of trying to find answers they just get a crappy attitude. I have been seeing a pain management doctor which has been a lot more understanding than the neurologist were.

In the past I have not been able to take most of the anti-depressants or anti-seizer drugs because of the side effects so the doctor has put me on Kadian (20mg) with Percocet for breakthrough pain which those together do seem to work in conjunction with the nerve blocks. At this point I am accepting the fact that I will have to live the rest of my life on pain medicine and it's not what I would really love to do but it's better than being in pain.

I just want you all to know that there are some good doctors that are willing to help you so just keep looking. I understand that it is tough when you have to drive several miles to go see a new doctor but sometimes they are worth it. I even went so far as to drive 50 miles to go see another pain management doctor just to get a second opinon and was told that she would do the same as my doctor was doing and he was doing everything right. That made me feel a lot better.

Oh one other thing that I have been using that helps some (in conjunction with the pain meds) my doctor prescribed cream that is Ketamine and neurotin, it causes my feet to itch a little at first but it does seem to help some with the pain.

I hope that everyone finds good doctors and pain relief, don't give up you never know the next doctor you see might just be the one your looking for, I have seen 7 doctors since this first began and tried so many different medicines I can't even remember how many before I got to the point that I've gotten some relief. Don't give up there is hope. I rode my horse today for the first time in over a year, I'm going to enjoy the "good days" while I have them so I can look back on them when I have the bad days to remember that they do exist.

My thoughts are with all of you I do know what your going through and how you feel.

[pikwick]

I have had two good days in a row, by taking the hydrocodone and Lyrica at the right times, but the big factor was I did not do anything on my feet. If I go to the office for a day, which I plan to do Tuesday, between the 60 mile drive both ways and being on my feet, the pain medication I have been prescribed will not keep up the day after. The most comfortable position is not sitting, or reclining, but laying on the bed. So I plan my activities accordingly. If I have an ice-fishing outing one day, the next day I'm on my bed just hoping the medications keep up somewhat. The best part of that is, my Yellow Lab, Duey, lays with me and ithat alone provides relief. I own my own business and only have to make the trip to the office one day a week. I could not work if I had to be there evry day.
My doctor has been on vacation, but one day this week will be the big question day of upping the dosage of hydrcodone so that I can still function the day after an activity day.
My wife is insistent I try to get to the Mayo Clinic, and maybe I should, but I have not read or seen anything they would do differently just by going to their web-site. Does anyone out there believe the Mayo Clinic could change anything? Pikwick

[ARC]

I joined this forum today going off the advertisement of finding others with the same, and receiving good advice. I'm now more depressed than before I joined reading how many others have been through and still are what I have been for so long. Are there not any doctors in this house? The #1 complaint of most are the doctors.

I have been through 8 doctors to finally find a podiatrist who specializes in neuropathy say to me it is obvious I have periphereal neuropathy, in part due to Diabetes and he disputes mine is "pre-diabetes" due to the glucose test results (unlike what my primary say's), saying the now numb toes is proof, plus flat-lined nerve response test, but he's doing the $$ tests in a few weeks so I have proof in hand while dealing with the other doctors. Hearing that, the new chiro decided to test further, and found the low sacrum nerve saying that is the source to a good amount of the neuropathy. 21 yr old injury caught up to me. It wasn't showing on the X-rays, so none believed me it existed. DDD, bone spurs, OA, crooked spine, twisted, it's all there. What I would like most - is to have two matching diagnosis's (sp).

I found (on my own after researching) that 4,000 mg of Vit C plus 400 mg of grape seed extract (1,000 + 100 4x a day) did settle down the extreme foot / shin pain and reduced 90% of the swelling. Has not cured the strange blood pools on my left arch (not diabetic ulcers nor vericose veins) The flare-up skin rashes I've been told is diabetes, but also possibly Lupus. Hearning others who don't have Diabetes but with the same flare-up rashes relating it to neuropathy is interesting to note. If I miss a dose of the Vit C & GSE, my feet instantly resume with the full-scale pain. The new Podiatrist said that combination does help, but does not cure, and thus why the relapses. I've tried PainX and it did nothing. I tried accupuncture and that made it worse. I am now taking Limbrel and it is having no effect, but I'm sticking with it for a whole month to see if it might. My hands and fingers are now 24/7 flared becoming like my feet. I cannot sit, stand, walk, or lie in bed without each position causing it's form of pain. I have noticed some cranial adjustments help with mental clarity. I'm taking the extra B-12, I do feel overall a tad better, it does cause the blood to circulate, but when that happens the blood pushes on the 20+ yr old nerve damage areas and those then flare up in increased pain. B-6 is helping with the joint pain. L-Carnitine is helping mostly with mind and emotions (although it is supposed to work on joints and other). Omega 3 for my heart, it adds a beat, and no one can determine an "average" B/P for me. I have, taking it while not at a doctors office having white-coat anxiety issues :-) Oddly enough, Lutein is helping my eye muscles.

I've not taken any prescription pain meds or other meds. 1) I have very bad side effect reactions, 2) I am really trying to stay away from them, 3) Not a single doctor I've seen in has offered any! No insurance I assume is why none have.

For four weeks and for the first time in 3 yrs I'm walking without a limp. New chiro got my hip back in where others had not, but that then flared up the sacrum nerve source, and instantly the neuropathy increased. Catch 22. My toes are getting worse by the week with total numbness. Before it was by the month. Feels like they were shot with novacaine. My pinkie fingers are now bright red, other fingers catching up. I guess my toes are cold, I can't really feel them. They do turn purple on occassion. I keep a small heater by my feet turned on low to keep them moderately warm, just in case they are cold and I'm not realizing it. I gave up socks 3 years ago. Support stockings sent me through the roof.

Mayo-Clinic I've heard wonderful stories about, but personally learned with my son's brain tumor to seek out the specialists. I live in AZ and there are good neuro-care facilities here. But, if asked where I think miracles are performed unlike any other, I have to give the University of California San Francisco Hospital top billing.

It is disappointing to see how little activity there is here. I probably won't be back. Hurts to type. But, if anything I've been doing helps someone else, I put my 2 cents worth in. I wish all of you the very best. Sounds like we could all do with some serious medical attention and advancements made in neuropathy.

[Sue Val]

I absolutely know how you feel. I have the same disease and feel so alone at times as nobody seems to understand this pain I go through. Doctors are the worse for help. It's like this disease is on another planet so they don't want to deal with it. I too have tried to research as much as possible on this subject but have a hard time to deal with the pain when I'm at the computer. I am wondering if you can give me some of your websites you go to...it was on your post but for some reason has been removed. I guess for privacy of some sort. I wish you luck in finding help and my sympathies go out to you for your mother.
Thank You

[Sue Val]

Have same problem. Your email was removed.