[pebblebeach2]

Hi all. I'm new to this particular support group and have posted under the spinal section.

But one of the problems that I am facing is peripheral neuropathy. Here is my story.

First I have severe spine issues. Surgeries to the cervial/thoracic region and lumbar region as well. Harrington Rods in both areas.

I also have diabetes and have been thru surgery for a blood clot in my left leg and pancreatic cancer.

Here is what has occurred regarding the peripheral neuropathy.

It is strange that it started in 2003 after I had surgery on my left leg because of a blood clot. When I saw the surgeon as a followup I told him I have numbness in my left leg from the knee down and it all started after the surgery. I thought it was connected to the surgery. He felt it wasnt surgery related but due to my spine issues. Also this is when I was diagnosed with diabetes so it didnt appear to be a diabetic neuropathy at the time.

So here it is 9 years later. I still have numbness in the left leg. At times it feels like it has progressed as well. At times it feels like there are pebbles in my feet and I am walking on rocks. Other times it feels as though my left foot becomes very hard feeling. It feels like my foot is turning to stone.

Also since that time the numbness now appears in my right leg, more so in the foot area. I get pins and needles feeling in the toes.

Also I have weakness in my arms and hand area.

I have been thru an EMG which showed severe nerve damage in the neck and low back; severe arthritis in both areas and neuropathy. I cant recall if the neuropathy was seen as a spinal or diabetic neuropathy or a combination of both.

Also the weakness in my arms may be due a softening (mylomalacia) of the cervical spine.

I am on Hydrocodone and tizanidine (muscle relaxant) I don't want to say that I feel great when I take the medication. Some days are better then the others. But when I don't take the medication at all I really feel it a lot more then when I am on the medication.

I am concerned about being on hydrocodone. Is it addictive and is it the best medication for neuropathy? I'm not so sure.

But I am limited on what medications I can take since I am in kidney failure and was born with 1 kidney. so taking non-steroidal medicaiont is not allowed due to the kidney failure.

I feel trapped and worried about the future and the progression of the neuropathy. I guess I am tired of living in chronic pain.

My health issues started in 1988 and it just seems that it gets worse as time goes on. I feel like the doctors are telling me there is nothing that can be done except give me more meds. How is everyone handling advanced neuropathy and what seems to work for you? I am looking for suggestions and see if that may be what i need to talk to the doctor about.

Thanks for listening.

allan

[Susanne C.]

I only feel qualified to address the hydrocodone question. There is no perfect pain reliever for neuropathic pain. I take a low dose of oxycodone, and will probably stay with this, increasing the dosage as needed over time, maybe switching to time release types. It works for me in that it allows me to get more done with less discomfort. It improves my quality of life, which is what pain relief should be about. It does not remove the pain or discomfort but it keeps it fom taking over my life.
I have a hereditary, large and small fiber neuropathy, with muscle loss, so very different fom yours, but it sounds as if your hydrocodone is working for you. Please do not worry about addiction issues. They are not highly relevant in chronic pain situations like ours and all effective pain relief has this potential,but the benefits outweigh the risks. From your description, addiction is not something you should worry about.

[mrsD]

Welcome to NeuroTalk:

I am sorry, Allan, you are going thru so much.

With kidney failure, this limits what you can do to try to heal.

But after all this time, and your complex spinal compressive injury, there may be permanent damage.

The diabetes factor? What do you do for that? Do you use metformin? Do you know your A1C reading?

Have you ever had your B12 tested? Metformin and acid blocking drugs impair B12 in the body. If you are low in that,
it can be addressed. But some people with poor kidney functions may show elevations in B12. So you will need to have a test before taking any on your own. You should test at 400 minimum...and don't accept "normal" from your doctor. Lab ranges in US are low, and out of date.

Any supplement you could try may be limited by your low kidney functions. Also chemo causes neuropathy, so you have potential damage from that.

So at this time, testing for B12 and discussing pain management with your doctor is about all you can do.

Some posters here with severe PN pain have used the fentanyl patches. But you would have to discuss with your doctor whether they are safe for you and your kidney issues. They are only given to people who have been on oral narcotics for quite a while, since they are so strong.

[pebblebeach2]

Hi. Thanks for the responses.

As to my Diabetes my A1C has usually been in the low 7's. My doctor is Ok with that number. He said the guidelines recently changed and I usually fall within the recommended range.

I do see a hemotologist due to a blot clot in my leg and surgery was done to remove the clot. I nearly lost my leg going into surgery. It was an elevated homocysteine level. So I am on 3 mg of Folic Acid and 50 mg of B-6. I am also on B-12 and was on 100 mg. But lately have trouble finding 100 mg tablets everything is now in MCG so I would have to take a trillion, not literally, of mcg tablets to equal the 100 mg tablets. not sure why I can't find the MG tablets any longer. Need to talk to doctor about this.

I was on the fetanyl patch about 12 years ago. I couldn't tolerate it. I remember I was having a reaction to it. Can't remember what after all these years but doctor took me off the patchs.

I agree at this point in time I may have permanent nerve damage. And that bothers me, but I may have no choice in accepting that.

I take hydrocodone. I was taken off oxycodone and baclofen since I was having breathing problems. My hydrocodone allows 6 maximum tablets per day. Have not taken a complete dosage yet, but I have noticed occassionally the feeling of lightheadedness from a lower dose or sometimes a real quick dizzy spell. Also extremely tired at times. I try to watch how much I take of the medication since it is a narcotic. How long can some really go taking a medication like this without become physically or mentally addicted to it. that is a concern of mine.

I am frustrated. Part of me says accept what is and that there are no answers, but the other part of me says I need a doctor that will look at things differently and have a different approach and really and I mean really listen to me.

Not sure what else to say at this point. I never know from day to day as to what I feel up to do and what I can't do. I am living day by day at this point. People ask me when they see me How am I doing...my response is I'm still here. I at times just don't feel like talking about it since most wont understand the pain. I feel like screaming but why bother no one will hear the screams.

I do go to the gym for pool thereapy when I am up to it. Feels good when I am in the water at least. Hopefully tomorrow will be better.

Allan

[twiches1&2]

Starting in February, I started getting calf fasciculations in both calves. No pain, just little twitches all over. No change until about 2 weeks ago when I started getting the feeling areas of my skin have fiberglass on it: This is a tingling and slight burning sensation that starts a few hours after waking and gets better when I go to sleep. I also get dizzy spells. All of this is gradually gradually getting worse. I can give lots more info on this. I got into a good neurologist who has done an EMG, NCV, physical exam, and lots of bloodwork in the last 2 weeks. I have not heard back from her yet on the findings but she told me not to worry about things. It is hard for me to not worry when its my body and the symptoms are getting worse gradually. I have tried the usual regimen of Calcium, Vit D, Alpha Lipoic Acid, CoQ10, and Acetyl L Carnitine, oh, and Methylcobalmin (B12) with no noticeable change in symptoms.

I have never had any issues before with my health (I am 46), and don't have Diabetes or any other systemic disease that I know of. I had a nasty stomach bug back in Oct 2011 that went into a bad sinus infection for 2 weeks. For 2 months afterward I would get indigestion whenever I ate anything and get the full stomach feeling afterwards for a couple of hours. An Endoscopy in January this year showed Erythema of the stomach Fundus (typical of Gastritis). Gradually the indigestion went away and the fasciculations came on about a month later.

[mrsD]

@Allan:

I don't know of any 100 milligram oral dose of B12.

All are in micrograms. Since you had that elevated homocysteine, you should get a B12 test. Depending on the result, you would need 1000mcg (1mg) or 5000mcg (5mg) methylB12 orally daily on an empty stomach. I would use the methylB12 because it is already activated unlike the cyanocobalamin form. Some people cannot activate it in cyano form and it doesn't work therefore.

The highest dose or oral I have seen is 60mg given under experimental circumstances in Japan to patients with MS.
But that high a dose is not used for regular people at all.

So please do get tested. And and I would switch to the methylfolate while you are at it, because people who cannot convert cyanocobalamin cannot methylate folic acid either.
Folic acid is not the active form.

You may have the DNA polymorphism genetic error called MTHFR reductase failure...this can be tested for also with a DNA test. People who have this often have very high homocysteine.

[mrsD]

@twiches:

What antibiotics were you given? There are some that cause PN.

Our drugs thread:
http://neurotalk.psychcentral.com/thread122889.html

Fasiculations may respond to magnesium improvement.
Either increase magnesium rich foods, or a quality supplement.
(not magnesium oxide).

You could also try a topical magnesium lotion or cream:
Epsom-It lotion, or Kirkman's magnesium cream applied directly to the areas that are giving trouble.

[Dr. Smith]

Originally Posted by pebblebeach2

I am concerned about being on hydrocodone. Is it addictive and is it the best medication for neuropathy?

Hydrocodone has the potential for addiction, but if you are taking it as directed, are not experiencing cravings for it, and have no prior substance abuse issues, I wouldn't worry about it. Chronic pain patients with no previous addiction history rarely become addicted.

Hydrocodone is dependence-producing, and that is very different than addiction. Many medications other than narcotics/pain medications produce dependence; it's the body becoming accustomed to having a chemical present, and when that chemical is withdrawn, the body experiences that withdrawal. If you expect to be in pain, or on certain medications for an indeterminate/indefinite time, I agree with Susanne that you probably shouldn't be worried.

You can find accepted medical definitions of these terms here:
http://www.asam.org/advocacy/find-a-...nsus-statement

IMO, whether a medication is the best one for a particular condition isn't the right question. The question should be, is it the best medication for you? As with any medications, it always comes down to a question of benefit vs. risk. Is it working? Are the side effects, if any, tolerable? If the answers to both questions are "Yes", then it may be an acceptable medication for you.

Hydrocodone is only available in combination with other ingredients, such as acetaminophen (Tylenol) or ibuprofen, both of which can be harsh on the liver. Depending on your dosage, medical history, and other factors, your doctor may want to monitor (via periodic blood tests) your liver function. If a problem arises, he may then want to change you to a different pain medication.

If any of this concerns you, by all means, discuss it with your doctor.

Doc

[ger715]

Originally Posted by pebblebeach2

Hi. Thanks for the responses.

As to my Diabetes my A1C has usually been in the low 7's. My doctor is Ok with that number. He said the guidelines recently changed and I usually fall within the recommended range.

I do see a hemotologist due to a blot clot in my leg and surgery was done to remove the clot. I nearly lost my leg going into surgery. It was an elevated homocysteine level. So I am on 3 mg of Folic Acid and 50 mg of B-6. I am also on B-12 and was on 100 mg. But lately have trouble finding 100 mg tablets everything is now in MCG so I would have to take a trillion, not literally, of mcg tablets to equal the 100 mg tablets. not sure why I can't find the MG tablets any longer. Need to talk to doctor about this.

I was on the fetanyl patch about 12 years ago. I couldn't tolerate it. I remember I was having a reaction to it. Can't remember what after all these years but doctor took me off the patchs.

I agree at this point in time I may have permanent nerve damage. And that bothers me, but I may have no choice in accepting that.

I take hydrocodone. I was taken off oxycodone and baclofen since I was having breathing problems. My hydrocodone allows 6 maximum tablets per day. Have not taken a complete dosage yet, but I have noticed occassionally the feeling of lightheadedness from a lower dose or sometimes a real quick dizzy spell. Also extremely tired at times. I try to watch how much I take of the medication since it is a narcotic. How long can some really go taking a medication like this without become physically or mentally addicted to it. that is a concern of mine.

I am frustrated. Part of me says accept what is and that there are no answers, but the other part of me says I need a doctor that will look at things differently and have a different approach and really and I mean really listen to me.

Not sure what else to say at this point. I never know from day to day as to what I feel up to do and what I can't do. I am living day by day at this point. People ask me when they see me How am I doing...my response is I'm still here. I at times just don't feel like talking about it since most wont understand the pain. I feel like screaming but why bother no one will hear the screams.

I do go to the gym for pool thereapy when I am up to it. Feels good when I am in the water at least. Hopefully tomorrow will be better.

Allan

Many of us with neuropathy and in my case, spine fusion/lamainectomy as well, take some kind of narcotic just to get thru the day. I myself am on Oxycontin, as well as Oxycodone for breakthru pain daily.

I have been on these for a few years now. At first, I use to worry about addiction; but we are really dependent on these pain meds for some quality of life. Do they remove our pain completely...no. Without them, for many of us, life would be even more difficult. If the Hydrocodone is helping you and the side effects are minimal, then I would suggest you not worry about addiction. Dependent on this to maintain some quality of life....yes! There is a difference.


Gerry

[pebblebeach2]

Hi.

Ms D as to the vitamin B-12 I have been on it for 6 years or so. I am almost positive that when I first started taking it I found 100 mg tablets. Unless I am losing it and not remembering it correctly. The B6 I am finding in mg tablets rather then mcg. And the hemolotologist had me on 100 mg of B!2. I have to see her again anyway and will clarify. Now I am left wondering If I rreally messed up n what I was to take.

I do go thru blood work but dont have the script in front of me so I cant tell you what tests but there are a number of blood tests that she runs before I see her. Will check into further.

As to the medication. The oxycodone and baclofen I had issues with in that not only was I lightheaded all the time, it never cleared up, but at one point I had difficulty breathing. I assumed it was from the medication as when I stopped taking it the breathing returned to normal.

Thus it was at this point I was put on hydrocodone/acetomeinphn 7.5 - 750 mg. and Tizanidine.

Some days I feel as though it works for short periods of times. Then I know its time for another dose of meds. But once in a blue moon all of a sudden I get real lightheaded, it comes and goes real quickly. One night I found I had some breathing issues. I was left wondering if it was the medication again or not. I don't have an answer.

One day I didn't take the medication at all and I was hurting a lot more then usual. So I guess the medications if providing some relief. Is this the best medication for me? I am not sure. I know sometimes its trial and error in finding what best works for each person imdividually.

There are some days I find that I can't get enough sleep. Is it related to the medication? nor sure if I have the answer. I have some days where I am ok in spurts but then feel like I am crashing and have trouble functioning and can't do anything for long periods of time. feel like I am wasting away.

Will write more later. trouble sitting at the moment. Thanks for listening.