Neuropathy Pain, Does anyone have any ways to help ease the pain that comes with Neuropathy? Waiting for an appointment with Specialist in Pain Clinic, meantime really tired of taking tylenol 4’s and being dizzy and nauseated. Soaking in a tub only covers a very small portion of the day, what else can we do when we have mobility issues? Any hints?
hi debra, I guess I’m lucky I’ve had type1 for 44 years and I don’t have it.
here’s a link to our largest neuropathy Group
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Neuropathy can heal, the key is getting better control. At diagnosis my A1c was 13.1, I experienced the burning pain and numbness. By getting my A1c down to 5.9 the burning pain slowly disappeared. Some numbness remains but I can deal with that. I still have hope the numbness will go away eventually. At one point it extended up to my thighs but it is now confined to my feet. I have feeling in my feet, just not as much as before this all started.
I take R-ALA, evening primrose oil, and benfotiamin ( a fat soluble form of vitamin B1) and they have helped my neuropathy. The R-ALA and benfotiamin have been studied in Europe and both are used for neuropathy there. Getting better control of my blood glucose was probably key. Here's a recent discussion about this. Here's another link that references a study that says it may take 2 - 3 years for your nerves to heal, and explains what is going on that causes the condition.
Short term, pain management may be your best option, but there are other options that can help in the medium/long term. The key to lowering my A1c was restricting quantity of carbs and types of carbs, so that my blood sugar almost never goes above 140 (7.8). Many believe that 140 (7.8) is the threshold where damage starts to occur. If you are interested in exploring this approach I would recommend the bloodsugar101 website. This site will teach you to "eat to your meter", an approach that is particularly effective for T2's.
Thank you BadMoonT2, I have so much pain I cant move during the day, just sit and compute, I cook Dinner and do the dishes. I don’t even get dressed or go outside. I take pain meds, they don’t help much. My insulin therapy just started with Co-op pharmacy and still at 17. Used to be 22-28, but still no change in pain. Almost at the point to give up, it’s been a long 2 years.
I am so sorry you are in such debilitating pain. Constant pain has a way of wearing even the strongest person down.
I am more used to thinking in US numbers a 17 is a 307 in our numbering system. That is still a dangerous number and would not help in reducing your neuropathy. Still, it is a great change from 22 - 28 so you are making significant progress. Please consider testing often enough to ensure you never go over 140 (7.8). This will probably mean a change in diet to eliminate the foods causing you problems, in addition to medication. If you read old posts around here you will find many others who improved their complications by getting better control, there’s no reason to think it wouldn’t work for you.
Hi Debra, I agree with Badmoon. Keeping your bg close to normal is the real key. I also take r-ala. It has helped from the first few days after starting with it. These two things are basically what I have done to treat my PN pain. I have improved greatly over the last 10 months in this regard.The pain is impossible to describe and I got to the point where I did not think I could go on. I still have numbness, but even it is better. The pain is no longer an issue for me. It does flare up from time to time, usually if my BG runs over 140 for any length of time. Even then it is nothing compare to what it was.
You can get better, but it is not a quick process.
I agree Randy, although I have been trying for 2 years to get my bg down to 7 has never happened yet. I hear so much about hypoglycemia but never hyperglycemia. I feel like giving up because my bg will not come down, many meds, insulin, diets everything.
When you experience debilitating pain day in , day out for such a long period, it affects every aspect of your body. Mind, skeletal, mobility, it never ends. Once you get to a certain point you dont want to care anymore. I am at that point. My family is suffering badly due to this. My daughter has become my chauffer, and interpretor for appointments as I lost my hearing from iv antibiotics as well 2 years ago. I have lifeline installed in my home because I fall so much, it makes me feel 80 instead of 41. Ive pretty much lost my friends becausde I cannot do anything with them. My mother does not understand the disease or the pain and does not read the material I give her, just gets annoyed when I cant go out with her or visit. I feel very alone with my family.
I really wish I had the answer for that. I feel very fortunate that I have been able to be so successful in getting my a1c to 5.4 and holding. I eat about 100 carbs per day and eat to my meter. I use Lantus and Apidra and r-ala. That is it. I’m rally motivated to keep tight control because of my PN and retimopathy. But I know others do much more and do not have the same results.
I do understand your pain. Many time (MANY TIMES) I would not do things that I needed to do because I couldn’t bear the thought of walking or even standing long enough to go shopping, do laundry or the dishes. I could not even tie my own shoes from last December until a few weeks ago.
I know that T2 has some different treatment issues than T1, but if it were me I would do something extreme with my diet. Maybe a hardcore low carb like Dr. B. At least for a time to see if I could bring my BG into a lower range. I don’t know if you have tried this, but I would try to remove the variables that affect my BG. That truly is the key for tight control. We truly are all different, but that would be my plan of attack.Once I gained some control I could begin to expand my diet options a little at a time. And this is pretty much what I have done.
One other thing I have found is that the pain gets a little worse before it gets better with control. This was true for me in the beginning and is true today. I just went through about 10 days of what seemed like a set back. Only to wake up one morning feeling better than I had in months.
Debra, I saw this yesterday and didn’t have a chance to respond. I saw you took Marie B’s advice & joined the neuropathy group. The RLA that Badmoon & Randy mentioned is really good, but like they said, you need to work on getting the blood sugar back to normal. Badmoon also talked about Benfotiamin, which is made up of Vitamin B. I took Vitamin B for years for the pain from neuropathy and it really helps. My cousin was proof reading medical textbooks and told me about it. It made a huge difference in the pain for me.
I also recently learned about Metanx, which is considered a medical food so you need a prescription for it. It is also made up of high doses of Vitamin B. I was discussing it with one of my doctors and he told me that years ago before drug companies got involved with stuff, Vitamin B was what they used for the pain from neuropathy. I would go to your drugstore and at the very least get a good B-complex vitamin. It really does help with the pain.
I would start a new post asking for some help with your blood sugar – you can get a lot of tips here. Tell us what you are doing now and we can help you. Some good books to get are Think Like a Pancreas by Gary Scheiner & Using Insulin by John Walsh.
You said you also have mobility issues from the neuropathy and on the neuropathy board, you mentioned having trouble with the stairs. I also have mobility issues from the neuropathy. In addition to my feet being like dead weight & my not picking them up, I also have balance issues. If you have not done so already, I would suggest getting a walker. That was something really hard for me to accept doing, but it has really helped enable me to move around better.
I know that it is hard, but try to start going for a little walk every day. The walking will actually help with the pain, even though the pain makes it hard to want to walk! When I would have a bad night from pain, I would actually get on my treadmill to make the pain go away. Unfortunately when I would stop, the pain would come back and I couldn’t walk on the treadmill all night. Going for a walk will also help with your blood sugar. Even if you can only make it 10 steps out of your door, go for those 10 steps then try for 11 the next day. The more you do it, the easier it will be for. I use a walker and fall a lot when I am not using it, but I try to get on my treadmill every day. Not moving will also cause your muscles to deteriorate and cause even more problems for you.
Be careful on those stairs. I took a tumble down mine this summer. I was very lucky and didn’t break anything, but it also made me realize that I have to find someplace on one floor.
Hi debraoxner. I have a thought about the high numbers. I too had high numbers that just wouldn’t budge. I was taking a T2 med called diamicron. I was unable to control my numbers while on this drug and I developed mild neuropathy. As soon as I stopped taking this drug, my numbers returned to normal and I quickly lost the 20 pounds that I had gained while I was taking it. My doctor gave me a series of B12 shots and I also took the ALA recommended by Kelly and others on the neuropathy site. Thanks Kelly and friends. If you are taking this drug, you might want to speak to your doctor about a change. Joanne
Thanx for the tips Kelly and Peetie. I do have a walker, wheelchair and cane as my falling is terrible, my balance gone. I cant count the number of times I’ve fallen down the stairs as well as everywhere else. Like I said I have tried everything for the pain including B12 shots, ALA, and prescription meds. Just have not found anything that works yet. i have tried in every way the doctors have suggested to lower my bg, I am now on Lantus 2x a day and slowly coming down. I like the insulin way better than the oral and trust it more as well. I am working with a diabetic educator right now also.
I’m right there with you, no sleep last night i’m stuggling at work this morning
meds don’t seem to help …
Hi Mike, I recently got a prescription from my doctor that my diabetes educator told me about, its called effexor, it’s an antidepressant that works on pain. Let me tell ya it really takes the edge off the pain! It doesn’t take the pain away but it sure helps it. | take it along with 2 tylenol 4s and then i am able to actually move around.
Unfortunately, many doctors are not aggressive in helping us maintain our health. And if your A1c is actually 11% as it shows in your profile, you need much more aggressive help. The Lantus will help, but I do think it is appropriate to talk with your doctor about a rapid insulin that you can use at meals and to correct high blood sugars. And a low carb diet will help you keep those after meal blood sugar swings under control.
The good news is that with normalized blood sugars, you can actually heal from neuropathy, but you have to get your blood sugars down. Some of the things like ALA will help with healing, but until you get your blood sugars normalized, they won’t be much help. Although the pain dominates your life, after the pain comes loss of feeling and control and that you don’t want.
So my biggest suggestion is to embrace the use of insulin as a way of getting your blood sugar under control. You will have to do most of this yourself, so learning how to smartly get your blood sugars controlled with insulin is critically important. I found two books very helpful, “Using Insulin” by Walsh and “Think Like a Pancreas” by Schiener. Buy the books and read them, they are well worth the money.
I’m really glad I found you guys. I thought I was the only one that had this problem. In the beginning it was just in my right thigh and my doctor sent me to another doctor thinking it was a pinched nerve. Well another two doctors and I was with a nerve doctor and he knew what was going on but had no real clue as to handle it, He has me on a couple of drugs that seem to help a bit. But it looks like I’ll get more out of this group than anything else I have tried. I’m really glad I’m not alone and depressed.
Hi Mike, I went through the same thing with doctors and specialists and nobody understanding what the problem was and then how to treat it.I have done research many a day before showing my gp the articles and suggesting treatment options to him. I still have not found a great treatment but have hope now to go on and talk to the right specialists, when I actually get in to see them. I have found a lot of support with this group and a lot of suggestions as well. Keep faith and hope.
It was nice to fond a someone else, my doctors all give me that dear in the headlights look. or better the RCA dog
but i have some meds that ease the paon but my best thing yet is cutting out many carbs as possible. in my case if i keep it under 100 carbs a day I’m 100 times better pain wise. fell much better and maybe i can lose some more weight…
I had my first severe case of Neuropathy this summer. I had to add noritriptylin to my meds daily 2X and when it hits I get another med, which for the life of me I can’t remember now. Also, little organ meats, more chicken and fish, and less beef.
Watch anything t hat has burines in it, like tomatoes, onions, oatmeal, etc. There is a list on line under burines to tell you what food will help stave of the neuropathy. It stinks, and I can feel your pain. But walk if you can when it hits, ask your doc about other OTC’s if you need to , keep active and know that you will get help as soon as you see the doc.
As long as your bgs are above 7.5 nerve damage is going to continue to occur. My feet used to burn/tingle/feel numb at the same time 24/7 along with Restless Leg Syndrome and various muscle twitches and gastroparesis. Getting my bgs under control with a low carb diet and supplementing with ALA, evening primrose and flaxseed oils, chromium and vanadium, liquid B12, and a daily multivitamin ended all those issues. If the bgs stay up the supplements won’t help much as the damage is being done faster than the body can repair. The most valuable thing I learned on sites like this is if you don’t eat carbs your bg doesn’t go up. Forget what you can’t do and focus on what you can.