help with the pain
 

Hi my name is Jason I have been diagnosed with neuropathy. I am having alot of problems with pain associated with this disease. I have just started taking gabapentin I have been on pain pills for approx a year. On my good days the pain meds really seem to help but on the bad days they don't even seem to touch the surface. The bad days seem to come in speels that last over a week. Does anyone have any suggestions for the bad days have you found anything that helps? I guess I should tell you I'm on 10-325 hydrocodone four times per day. Any help would be greatly appreciated thanks in advance for any replys.

You taking any other supplements? What is the cause of your nueropathy?

Hi Jason, Welcome.

It would also help us help you to know a little more about your symptoms.

Do you have any kind of diagnosis/cause? (There are over 100 causes/types of peripheral neuropathy.)

What kind(s) of pain do you need help with? (e.g. burning, muscle cramping, needle jabs/shocks, etc.)

Have you identified any triggers (foods, activities, events, weather, etc. that make the pain worse)?

Anything that helps? (in bed, out of bed, heat, ice, exercise, etc.)

Doc

recovering alcoholic
 

I've no official reason for the cause of my neuropothy. But just a little background I am a recovering alcoholic but I also developed type II diabetes for years before It was diagnosed. As far as the pain goes I have the numbness needles jabbing pain tingling and burning that are discomfortingly but not the root of my problem. My major pain comes from a deep bone type pain or soreness that aches to the point of tears at times. The more I walk the worse I hurt I spend most days sitting and laying around. Even when I'm sitting or laying I'm still in pain just not as bad as when I aggregate it by standing too much. Maybe this is enough information thanks for the replys all help is GREATLY appreciated. Please feel free to ask any more questions.

I have the deep bone pain, yes to the point of tears is a good description, but I have hereditary neuropathy. Walking does relieve some of it for me, but on soft surfaces like trails, not asphalt or concrete. Standing is bad, as is sitting. You should try to be as active as possible, inactivity can really snowball on you, leading to weight gain and making everything worse.
There is a lot of information here so read everything, particularly the supplement threads. Supplements seem to be most helpful in cases of diabetic or alcoholic neuropathies. Good luck.

Do you have you blood sugar under control? If not, you have to do that. Keep moving and exercise as much as possible. Eat a healthy diet with plenty of fruits & vegetables, avoiding processed foods. You can begin taking vitamin B-12 in the methylcobalamin form, 1000-5000 mcg per day, as many of us do. Diabetes type 2 & B-12 deficiencies are some of the top causes of PN. You may have the alcoholism playing a role as well. Alcohol is toxic to nerves and alcoholics are often deficient in nutrients. Have you been examined by a neurologist? What tests have been done to determine your cause?
Ron

When I get that, it's usually something comorbid like arthritis.

I agree it's better to keep active as much as possible. On those days when you can't seem to get off the couch or out of bed, make yourself get up and move around the house a bit. Inactivity can cause muscles & joints to stiffen up and contribute to more pain. Try some stretching.

I've conquered the burning pain completely, and some of the other pains of PN partially with diet & supplements. R-Lipoic acid and B-5 have helped this; B-12, D, etc. There's much info in the sub-forum and sticky threads. I avoid food triggers like sugars & starches, nightshades, and (for me) too spicy foods.

Doc

Dear jcheeves,

I can't take codeine related drugs. So I must manage pain without them.

I have profound Peripheral Neuropathy and severe osteoarthritis, which is the 'bone pain', among a host of other conditions.

When there is a 'flare' of any pain, there is usually inflammation going on.

I take Aleve (an anti inflammatory) and Cymbalta (it's an antidepressant ON LABEL for the pain of Arthritis and PN).

I have just begun taking Methylprednisolone which is a potent anti-inflammatory, as well.

I also exercise in the water and with the stationary machines in the gym.

Meditation and relaxation exercises are key to managing my pain, as well.

Fear can increase pain, as does tension, stress, and all negative emotions.

I wish you wellness and recovery in the coming year.

Hugs, Elaine

i never heard the term profound peripheral neuropathy until you used it....im assuming that that means severe? in other words on my emg report the description went from mild/moderate to moderate/severe to severe. so im guessing that profound is the same as severe.

I was curious about that myself. Some medical conditions are categorized as mild, moderate, severe, or profound—profound being a degree beyond severe.

I know that in some cases (e.g. hearing loss) the term is measurable/objective/quantifiable, but in others it may be subjective—I don't know for sure.

Doc

Actually, my first neurologist used profound peripheral neuropathy in his written evaluation of the EMG.

1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

I didn't question it because I had so much going on at the time (torn meniscus stuck in my left knee joint) 3 moves in 5 months, one 18 hours from the other, and a zillion other things. I didn't even understand how bad my PN was! I didn't even KNOW I had it until it was found and was already profound. Isn't that bizarre. Clearly I am not well attuned to what is going on.

When my new Duke neurologist ran the EMG again in November, four years later, he compared the results, and said they were the same.

I then said, oh then my legs aren't worse!

My Duke neurologist said: Your legs CAN'T GET WORSE, when the nerve is gone and gives no response, it can't do less than no response.

So my first doctor used the term 'profound' to mean 'total and complete'.

I was so dumfounded by the diagnosis and the following misery with my knee surgery and moves, and further medical problems, that I just let the whole thing slide.

As it turns out, there wasn't anything I could do about the PN, then or now. I am learning to live with it.

To accept that I have a degree of pain and discomfort, and that I always sit unless I'm doing something simple (unloading the dishwasher, doing laundry) and only exercise at the health club.

I kept thinking I should be doing more. But now I know that profound PN is like profound hearing loss. It isn't commonly used related to PN, but my first neurologist was an older man, of European origin, and may have used 'old-fashioned terminology".


Profound Hearing Loss 80 dB or more Difficulty hearing and understanding, even with amplification

Profound is the most hearing loss you can have. Fortunately I only have moderate hearing loss, with one ear actually recovering some hearing because my loss is related to Menierie's and can come and go.

Hugs, Elaine

ElaineD,
I would not be so sure there nothing you can do for your PN. I'm not saying I know what it is, but just because your doctor says there is nothing you can do about it doesn't make it so. There is a lot out there that mainstream doctors do not know about. There is the potential that something exists that could help you, regarding supplementation, diet, exercise, stress, acupuncture, a nerve stimulation device, chiropractic, traditional Chinese medicine, surgery, or something else. Keep searching and don't give up hope.
Ron

That doesn't agree with the Wiki article (see previous post). Not being argumentative; just noting—and curious about—the difference.

Doc

In my experience doctors say lots of strange and sometimes
inaccurate or misleading things. They may be brief and use words that are not exactly representative of what is showing up.
Some doctors tell young PNers who show up here, after little testing, that they will be in a wheelchair soon, and that is it!
The range of statements, is quite large, and often closes doors to patients, rather than opening opportunities.

I believe there is always hope when it comes to healing.
Doctors do lots of things, test and give drugs typically (which may be toxic to nerves even--and usually won't admit it) but they do not really enable healing, when it comes to nerve damage.
We have known for many years that the peripheral nerves are capable of healing. My cut and damaged nerves severed by surgery when I was 12, in my left foot, were numb for decades.
But when I was around 40, I noticed I could feel things again in that instep and toes! They did grow back and heal...not 100%, but quite a bit. It took time though.

If you, Elaine, are not in a wheelchair all the time, but can still walk and get around, and feel something in your legs...pain, etc, then the nerves are not totally dead. You may need a mobility aid to help you balance, but I don't recall reading about braces or foot drop interventions yet.

Here is an interesting nerve path illustration, that can be moved to view in 360 degrees.
http://www.innerbody.com/anatomy/nervous/leg-foot
It shows the major nerves in your report.

If you do not have foot drop, and require braces on the affected foot, then you have some peroneal nerve activity.

Since you have stated that you don't know where your feet are, that suggests afferent damage. Afferent proproceptive nerves, are myelinated, and those may be damaged. However, it is odd you have no hand/arm involvement yet, even though you have an autoimmune issue, which typically does attack myelin everywhere.
So you are a puzzling mixture of nerve damage.
Here is a handy site to explain the 4 major fibers in afferent nerves:
http://neurotalk.psychcentral.com/thread194446.html

When you didn't "know" you managed all that moving stress. It is remarkable. So I do think you are a remarkable person.

I do think you should do all you can to prevent falls, by using appropriate walking sticks, canes, or walkers. I just bought a walker for myself...a brand new one I found at a garage sale!
It is waiting in the closet in case my walking deteriorates further.
I have a left hip tendon issue, which impairs me more and more.
But not yet. (I have many stairs to contend with, 15 of them to get to my front door, and another 13 to get to my bedroom and studio.) Some days I use my walking stick in the house, for those stairs, and other times not.

Constantly keeping that word "profound" in your mind, I think is
not constructive to any healing that might be there for you. 4 yrs is not a very long time in PN terms... nerves are not speedy in recovery. Most of the medical stuff we are exposed to today, is temporary. New information will be coming down the pike in the near future, and that may reverse what you are hearing now from your medical reports. It all remains quite tenuous IMO.

I think this is important. I know that's easy for me to say as I have been pretty "lucky", but I did a lot better than "expected" or "predicted" by the experts.

Both neurologists I saw and the medical people in rehab told me to expect no "cure". And while technically they may have been right - my nerves haven't fully healed - I am doing 80% better than 9 months ago. Again, partly down to "luck", but partly down to me trying everything I could try after sifting through the advice on this forum.

I'm not exaggerating when I say that if I had fully accepted their professional opinion that I might be going round in a wheelchair right now.

And thinking about it: having sural nerves that are completely "dead" (EMG wise) might be called "profound" too.

To the OP - Jason, you might - given the history with alcohol - also look into vitamin B1 in the form of Benfotiamine. (150mg/day) It's one of the vitamins that get "flushed out" when consuming alcohol, and B1 treatments are common in countries like Japan.

Yes I have been seen by a neurologist they did the test where they shock you and the one where they stick you with needle I don't remember what the test was called but the neurologist told me to file for disability.the neurologist sent the results to my primary at the time I have not seen the results.I am currently going through doc change so records are hard to come by.what I am sure of is the amount of pain I am in is anyone taking any stronger pain med. And if so what and how much

Interesting comments, interesting topic.

I have found that people relate very very differently to doctors, and that there are many many kinds of doctors. I have also found that there is great suspicion of medical science and the pharmaceutical companies, as well as of government agencies and programs.

Truly it is a challenge to manage all of the information and our own medical conditions, especially for those of us with more than the average number of issues.

I also know that individual experiences, even LOTS of individual experiences are NOT research data. Our human nature values personal accounts far above objective scientific data, which is why we seek them so avidly. I also know that what works for me may be terrible for you, and that what works for me now, may cease to work, or actually cause me a problem.

Life is fraught with challenges!

My husband has PHD in biology taught and did transplantation immunology research in a Medical School in Boston for 25 years. While there, he taught Gross anatomy, dissection of the human body, to medical students for 10 years. He is still teaching anatomy and physiology at nearby college, part time, at age 74. He knows exactly every single part of our bodies. His knowledge is stunning. He carried out kidney and heart transplants in rats, dogs and goats. I wouldn't hesitate to have him perform an emergency tracheotomy for me if he had to.

I am not scientific at all, have only an MBA, and worked in business and academia, so I'm at a disadvantage when it comes to medical things, at a personal level. I rely upon my husband, research, and most of all on forums like this one. Always realizing that we have to screen out some sources and types of information.

On one of my forums recently a poster constantly said that Adrenaline is bad for your body. I tried to sort that out, but she was adamant. Adrenaline = bad.

And I do make errors. Certainly my entire PN isn't profound. The loss in my Axonal Nerve is the only profound loss that I have. The others are less than profound. I do have foot drop, which is why I trip on a flat floor. Walking is so hard for me that I prefer not to attempt it for any length of time, it exhausts me, and with both auto immune and immune deficiency conditions, I cannot afford to become over tired. I rely on my health club activity for true exercise.

I see that there is a definition of deafness beyond profound! The range I looked at was described by the Beltone hearing aid people, and I should have known better than to use their definitions. I imagine the hearing aid folks don't deal with absolute and total hearing loss, so it doesn't get on their chart.

I have a walker on hand, but if I needed one I would get one with more bells and whistles and a seat.

I tried taking weight adjusted doses of Jarrow Formula Methyl-B-12 for 18 months, with the hope that my PN was myelin sheath damage related, and might heal. But no healing has occurred. Now I just take the Methy B-12 as a supplement.

I've consulted with physical therapists and learned how to use a cane properly, and I have a cane. I really do think that if I needed assistance, I would prefer a walker. Right now I just don't walk any distance without someone's arm, or a grocery cart!

The one thing I know now is that at 71, and with my PN of unknown cause having remained the same for 4 years, it is unlikely that it will progress.

However, with new, strange diagnoses and conditions dropping on me every year (Primary Immune Deficiency Disorder and copper deficiency just to name two recent ones) I have no idea what the future brings.

I am optimistic about my IVIG treatments, now that I'm taking Medrol and the reaction to the IgG is negligible. I'm dutifully taking my copper supplements daily, and have reduced my proton pump inhibitor intake by half, hoping to increase absorption of both iron and copper.

So perhaps (if I'm not tempting fate too much) 2014 will be a bit more manageable and 'ordinary'. I so prefer calm, ordinary days.

Hugs, Elaine

I have been thinking about you.... Did you ever have the DNA MTHFR tested (DNA)???.... with the heart blockage and all, if you
have that mutation (which up to 40% are now thought to have in US)... you'd need methylfolate too to go along with the methylB12.

The myelin repair supplements, involve, methylB12, activated B6 called P5P, and methylfolate. Fish oil is needed to contribute the
fatty acids for the repair of the myelin sheath. People with the MTHFR mutation cannot activate or methylate B12 and folic acid properly.

If you search "myelin repair multiple sclerosis", you'll find an even longer list of suggested supplements, on a site specifically for MS patients.

It is unfortunate that you take that high dose Lipitor. Studies from MS research show that statins, block the nerve growth factors involved in myelin regeneration. At one time MS was thought to benefit from the anti-inflammatory aspects touted by Big Pharma. So there was a study using high dose Zocor, which is more lipophilic than Lipitor, and it was a dismal failure...the people were taken off, and the results led to the discovery of this unique damage by statins to prevent remyelination. So taking only the high dose B12 would not help you much, I don't think for your goals.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2671276/
While this is a very complex article, if you skip to the discussion, it is summarized there.

The FDA has already suggested that Zocor (simvastatin) no longer be used. Simvastatin is the most lipophilic of the statins, which means it penetrates the brain and nerves(which are fatty=lipids). And there are studies showing that very potent statins like Crestor are effective in very small infrequent doses!
This is just one example:
http://www.ncbi.nlm.nih.gov/pubmed/21784377
Why not do this for all if it is effective? That is what Dr. Jay Cohen MD recommends...in those who MUST have a statin. Get by the with lowest dose possible. I think you'd, enjoy his website, Elaine.

The word Axonal, just means that the axon of the nerve is damaged. It may be myelin damage if the axon is myelinated, or not. Only the C fibers that are afferent (going to the brain) in the periphery, are unmyelinated. That link I gave above here has drawings and explanations of the terms. All nerves have axons. The axon is the long sending portion of the nerve. The nerve body also has dendrites, which typically connect to axons.
This link shows that graphically:
http://en.wikipedia.org/wiki/Axon

and
http://faculty.washington.edu/chudler/cv.html
(afferent fibers)

This link has a graphic of the 4 types of afferent nerves showing the various fiber types. 3 of the types are variously myelinated, and the C-fibers are not.

Peroneal nerve damage below the knee, is often traumatic in nature. Crossing the legs alot will even cause it. But it can come from activities, like jumping and landing, or various exercises, or knee damage, surgery, or inflammation (which can compress the nerve behind the knee). If your damage is compressive in nature, or trauma induced in some way, this might explain why it has not spread. Toxic neuropathies, diabetes, autoimmune, vaccine injuries, often are all over the body. Trauma or compressive ones, often are more contained.

But the bottom line, is that PN is very complex, so much so that doctors don't even really understand it. CMT patients are often not even diagnosed properly, as Kitt often mentions in her posts.

So yes, many of us are skeptical. I've had PN in my hands and feet since I was about 30 (I am 67 now)...it crested during my pregnancy when I lost 80% of my hands -- revealed by an EMG in my 5th month. I could still do some things, but not hold a pen or lift a pot by the handle, or sew/crochet anymore. It did resolve mostly after my son was born, and it taught me a huge lesson! I still have to wear my wrist supports at night in bursts, I still have flares, like this summer when I sprained my right hand opening a tight jar), but for the most part my hands have not needed surgery. I also have osteoarthritis significantly and spurring in many joints), and also hereditary angioedema (a new diagnosis--following a major drug reaction this Feb 2013.)

I use my magnesium lotion faithfully now, with great appreciation and thank the powers that be, for it! What a small thing with a big PAY OFF! That is just an example of keeping up with stuff. A poster came here to tell us about it...so that is how I learned of its existence. After all these years, there is still hope... and the Morton Epsom lotion, is just one pay off for me and everyone else here!

OK, I admit this is half jokingly: http://well.blogs.nytimes.com/2013/1...ligament/?_r=0 ;)

I do understand where you come from though, and yes, as much as it may surprise you, I do believe 100% in the scientific method.

That doesn't mean that docs are always right or represent the ultimate "science". They are not. And the smart ones actually are acutely aware of it.

We currently know surprisingly little about how our brain works. So all I was trying to say is that telling people there's nothing that can be done might just not be giving the full picture, and might be doing their patients a disservice.

I believe that would be EMG/NCV testing. It would be interesting for you to find out the results. JMO

get the results directly from the neurologists office.

EMG (electromyography)
http://en.wikipedia.org/wiki/Electromyography

Nerve Conduction Study
http://en.wikipedia.org/wiki/Nerve_conduction_study

That's a nifty little graphic :cool2:; it reminds me of the software I'm working with now—highlighting elements hovered over.

I agree wholeheartedly.

For those contemplating canes, walkers, etc.... Don't forget your local Lions Club. I think most people are aware that they accept donations of useable eyeglasses, but they do the same with canes, walkers, wheelchairs, crutches, sick room equip., etc. In some communities they have warehouses full of stuff just collecting dust & rust because people don't know/think of it, and it's free (but I've always given/sent a donation).

Doc

The MDA has a loan closet as well for those who are members and have one of the diseases that they cover.

I only paid $10 for a brand new walker with 2 wheels. I thought it was a "deal". This was a huge sale, with many disability aids along with other things. The fellow who ran the sale, knew about many of the aids and was very helpful for me, and took it to my car even. He had a special handicapped bicycle too he was demonstrating to another person.

I sort of fell into it...going past doing some errands with hubby.
He looked at me and said ....."What for???"... and I said for the "future". I thought it might be handy for malls etc.:rolleyes:

Hi Susanne,
It's really unbelievable that both of you are calling it deep bone pain. That's was one of the first things that I noticed early on. It felt like when you desperately need to flex after an intense work out.

The thing is my son told me a few nights ago that he experiences deep bone pain especially at night. It makes him have to get out of bed and walk. I told him that I know exactly what he is talking about.

Now that I think about it, I hope this isn't something hereditary. I might see a geneticist after the holidays.

I hope not!

How old is your son? Mine is 29 now and has pretty severe symptoms, including the loss of his piano playing skills, as his hands get numb after a few minutes. He walks over on his ankles and wears braces. As a child he had the slapping gait, he was as light as a feather but sounded like a herd of elephants when he walked, and he always complained that his feet hurt. This was long before we knew what we had.

My son is 29 also. He is very heavy footed but so am I. I don't think it is anything unusual. His gait was fine as a child. He was very involved in sports.
The only things I remember his continually complaining about as a teenager was acid reflux. He also has had back and neck pain. He does not complain about his feet at all.
My father always complained about pain in his legs as he got older. He use to have to bend over and put his hands on the step ahead of him to go up steps. My mother thought it was due to the years of working on freight trains.
My fathers brother had neuropathy but he was a heavy drinker.
Who knows guess I'm grabbing at straws again trying to figure this out. I just go through this every now and then. Thanks!

For a second there I thought he was going to say (as the punchline goes), "Ten dollars is ten dollars" :p

Doc

Hi Jason,
I have all the symptoms you do with pain associated with the disease and am taking gabapentin. What pain pills are you taking I need something besides garbapentin they help but not enough. I have very few good days. If you find out any information share it with me. This is new to me just a month.

What medication and dosage works for one person isn't really relevant for another—there are too many factors and variables. If your pain isn't being adequately addressed, you need to have a candid discussion with your doctor.

How to talk to your doctor about chronic pain

Doc