Ive had Diabetic PN for about 2 years without much luck in finding anything for pain releif. I was on Neurontin for a year with no luck. About a month ago I started a daily regimine of Alpha Lipioc Acid(ALA), Borage Oil (GLA), Benfotiamine (B1), Methylcobalmin(B12) and started a trial of Topamax.
Well over the past couple weeks the pain has gotten worse and Ive actually gotten new pains which I havent had before. Since I was able to toloerate Topamax well, My Dr. upped my dosage to 100mg and renewed my prescription a couple days ago.
Last night as I just happened to rub my toes cause they were tingling - usually they just burn - and I noticed I actually had some sensations! I could feel my fingers touching my toes. I had my wife do the Monofilament test and I scored all +s one one foot and 3 out of 5 on the other! I couldnt beleive it! 2 months ago, I scored all -s on both feet.
I seem to remember reading that nerve regeneration can be even more painful than the nerve damage itself and was wondering if any of you have experince this or similar?
I have gone through the same experience. I was pushing myself for getting better A1C numbers. I have been able to get to 5.9 and have been there or 6.0 for the past 2.5 years. Since I have had this tight control I have had the same kind of sensation return in my feet. I do not have as much return as you do but several areas are more sensitive than they have been for years. I have had this neuropathy stuff develop in me, noticeably, for the past 26 years. You have the same problem I do as well. My doctor thinks that the good control will make the pain go away. And in me it has gotten worse. The numbness has improved, but the pain levels are increasing.
That is not good to hear :-( My A1C is currently 5.3. And this stuff has come on fast. My concern is that though there "may" be regeneration happening, it could be working against any pain meds Im on. I would much rather be numb than have to deal with this pain.
I am not trying to make this a downer. But the way the improvement happens is a little odd in my case. I have had the Nephropathy return to a normal level for now, my eyes have stabilized. I was blind in my right eye. The pain issue is the one thing that I do not understand. It is just either uncomfortable to agonizing. But there are many medications that can take care of the pain. I have several pain issues. I understand that if a patient has only Diabetic PN Then there are chances of getting that part under control. Either using signal blockers or with pain meds. One med or another will possibly work for you. Do go to see your doctor for the treatment. If he cannot do it, have him refer you to a pain management specialist, They do good work in caring for this problem.
Same here - Im never completely rid of it. As far I as know, All this damn pain is from PN. Im sure you are familiar with it - prickling, stabbing, intense burning, "walking on golfballs". It's either one or the other or all of them combined. So far its only in my feet but like I said earlier, the last few weeks have been the worst, and sometimes Im close to not even being able to walk at all. Im going to see a new Dr in a couple days and hoping to get a referral to the local pain clinic. I really hope they can do something other than prescribe opioids - I need my brain!
BTW - So far I havent had issues with my eyes. In fact, I recently had Lasik and highly recommend it! - with Endo Dr's blessing of course!
[This message has been edited by targa123 (edited 10-22-2003).]
Just a quick note on the meds; I have had every signal blocker on the market tried on me. This may be my personal problem as well. But I have found that when it comes to brain activity, Thinking, Loosing thought, just forgetting, and not being able to think at all and slow thinking. All of the signal blockers are a main problem. They stop pain by blocking signals to the brain. When this happens, in my case, it stops the thinking process and ability. I am a tech, and I can not afford to have this problem happen. I lived with this happening to me for 5 years. I have found that I do not have anywhere near the problems with pain meds as I did with the signal blockers. If uploads are specific to your situation then I understand that, But if not, the pain meds are less poisons and less problems with the liver and kidneys and the brain.. Just a thought, again these can be a specific item that you need to have, due to experience. Items like Tegritol, Neurontin are very harsh with brain activity. At least in me. Your doctor will work with you. Keep us informed as to how you are doing with your pain care.
Hi targa123 and all!
I'm new to PN - mine is idiopathic and is scaring me because it is spreading all over so quickly. I've had two wks of every test known, by a neurologist, and they cannot find a cause.
Several of you have referred to tests you can do yourselves: Monofilament and A1C
What are these and how are they done??
I'm on 900mg Neurontin, which seems to help with some of the pain, but I'm relieved to read that I'm not the only one who is "losing thought" on this.
Anyway - I'd really like to hear about the tests and also wonder if anyone has any answers about how disabling this can be?
Thanks and best of luck to all.
The monofilament test is used to determine basic sensation of areas on the foot. It requires a special tool. Here is a link with detailed info: [url="http://aafp.org/afp/980315ap/armstron.html"]http://aafp.org/afp/980315ap/armstron.html[/url]
A1C - short for Hemoglobin A1C - is a diabetes blood test which is basically your average blood sugar level over a 3 month period. It is not related to neuropathy.
I won't need the diabetes test, but will definitely check into the other. It seems that it is very hard to know anything about the progress, and pronosis. I understand that when there is no known cause, they (the doctors) can't really say what will happen to you. So, of course, I'm imagining the worst. My mom is in a wheelchair, so I know all to well the problems that that can present. I'm very frightened right now, and all the information I can get helps.
Thanks again, and hope things go well for you!
I was just re-reading this thread and noticed you mentioned that you have had PN "noticably" for 26 years. I was just wondering what you meant by "noticably".
For me, I had numbness for a month, then came the annoying stabbing and burning pains for about a year, then within the past year, Ive experienced an extreme increase in the burning and "walking on golfball" pains and now within the past week, it seems to be moving into my hands and arms.
Did it progress this fast for you? Im just wondering how you were able to deal with it.
[This message has been edited by targa123 (edited 10-24-2003).]
My first recollection was with my feet feeling normal on some days and on other days they felt as though they could have the bones in them break with any type of extra pressure. Also At night I could not stand to have the blankets or sheets lying on top of my legs. This would hurt and annoy. I called the beginning of this, annoyance. The pain came later. I call pain ,when things get to levels 7-10. So it all came on slowly, but it was there for quite some time and very uncomfortable for many years, without any relief. I had no way of knowing what was going on. To proud to admit that something was not right.
The largest problem back then was my cats sleeping on my legs at night. This is when I really would call it pain. They loved to sleep with us, but on me. As long as I did not touch my legs I could put up with the pain. If it was touched I went through the roof.
So it developed quite slowly. The more I was developing Diabetic specific problems, the more the pain developed it and other pains. I took many different meds and they worked a bit in the beginning and then failed. I was progressively moved to stronger and more meds as the years developed. So noticeably meant that it was not in the forefront of my mind as a pain issue. It took time in me before it was a focus of my life.
Hi, my name is Mason, I posted two messages on the 23rd. I have neuropathy and have had it for 8 years. Mr.Bush took any chance we had for regeneration. if dead, can't come back. sorry, but there are a lot of things you can do. I will say, no pain med. these people talk about will help. Mind over matter maybe. if your mind thinks it helps, ok, but your brain will figure it out and back comes the pain.
Inclosing , check out my messages. I have a lot more to say, it comes from the top hos. in the country, I have other prob. I deal with. Take charge, don't let it rule you,ok Mason