Now that I feel more comfortable here and am posting more, I thought you all would like to know a little about me. I am a married female, 62 years of age. I was diagnosed over four years ago with unspecified neuropathy. It all started one day with the big toe on my right foot that was numb. I noticed it after work and just thought it had rubbed on my shoe. The next thing I knew, fairly quickly, was the big toe on my left foot was numb. It progressed from there to all my toes. I went to a podiatrist first and when this was beyond his realm, my family physician sent me to a neurologist. He ran a bunch of tests, but the one I remember most was the EMG and the needles. I really need to get copies of everything from this neurologist as I do not think I am going back to him. I see him once a year and he asks me questions and tests my reflexes in my knees and tells me to come back in a year. I have asked if we should be doing more tests of some kind and he never seems inclined to order any more.

I have been taking B-12 vitamin (1,000 a day, sometimes two a day) recommended by Rose (last blood test had my B-12 level at 2037) and B-complex. I think I need to start on the Omega 3 fish oil next. I also take a daily multivitamin from GNC. I was put on Neurontin for over a year, maybe two. I also take Tramadol. This is the only pain medication I have been on. I did not write information down when I changed medicines, so my dates of when I changed may be a little off. Neurontin finally stopped working and I was taking more and more of it. The numbness is always there. I then went to Tegretol which seemed to work, but I did not like the way it made me feel. I don't sleep very well, but my body seems to have adjusted to it. I sleep for 2-3 hours then awake for maybe 1-2 and then able to get back to sleep. The bottoms of my feet get so sore, but I have lost a lot of natural padding. I seem to be able to walk although not really comfortably for any great length of time. My legs do feel weak at times. I also have Baker's cyst behind both knees for which I take Piroxicam. This medicine really works as I could hardly walk before starting it. Doctor says they rarely do anything for this condition.

I retired in June 2004 after working practically all my life and have three small grandchildren, so am on the go quite a bit. In thinking back, I remember when I was very young, 8, 9, 10 maybe, that my legs were like this and my mother telling me it was just growing pains. It seems now in looking back that my legs were always kind of on the weak side. My hands seem weaker than before all this began, but not to the point where it is a problem.

I did physical therapy in November-December 2005 using the Anodyne system. This therapy did work for me. I ordered a home unit when I finished with PT on the recommendation of the therapist and with help from them, was approved by my insurance company. I received the unit the first week in January and used it faithfully every day for three months (according to directions received with unit). I then went to 2-3 times a week.

There is a website where you can read more information on this type of therapy - http://www.anodynetherapy.com/Resources.htm.

I have been on Lyrica (300mg) since spring 2006 and it has done wonders for me. I had heard of this medicine through my podiatrist and when I had my last visit with the neurologist, I fully intended to mention Lyric and forgot. I talked to my regular doctor and asked him if he could prescribe it for me as I was not returning to the neurologist. I occasionally have a slight balance problem, but do not experience any tiredness, no brain fog (had that with Neurontin), and no diarrhea. I still take the Tramadol (mainly at night) as the Lyrica does not 100% take care of the burning sensations. I also continue to use the home Anodyne therapy unit. All of these in combination have made my quality of life 75% better than it was a year ago.

I have to say I do not have pain as such, but rather a burning sensation and weird feelings in my toes at times. When I have been on my feet for any length of time, they hurt as in a soreness, but not what I call pain. With all the testing I went through, nothing was found that would cause me to have this PN condition. I have just recently been diagnosed as prediabetic, which may account for this PN although it has been over four years since this all started. I have found that when I eat things with sugar or if I get upset, my feet do feel worse.

Hope I haven’t been too boring for you!

Diana Shaffer

Diana,

Since you have just burning...and numbness, I'd suggest you do a
high dose of Thiamine for a month or two. At least 300mg a day in divided
doses. See if you are one of those folks who need much more B1 than others.
This is a genetic issue. YOu will not spend alot of $$ for it, and it may work for you. (benign stuff as well).

I found Thiamine very useful while I was taking Lasix (which happens to deplete it). So even when I am not using the Lasix much now (like before), I keep up with the Thiamine. I notice alot of difference if I stop using it.

Also watch your diet... I find certain tomato sauces and other high histamine foods increase burning sensations. Also AlkaSeltzer with aspirin also stops burning for me quickly (if you can take aspirin). I have more burning in the summer than the winter, for some reason.

fraught with frustrations.

After a very initial diagnosis by my GP and a referral to neuro's, it got soo bad the GP suggested I go to the ER. At first it was the toes, couple of days later the fingers, few more days-on the way to the ER it was both whole feet, and hands. While in the ER the wrists went into full fledged pain mode and the feet pain migrated up to the knees! All in a 14 hour waiting period. The resident at the ER got the diagnosis and referral of my condition off ....you guessed IT! THE INTERNET!!!! I'm betting that's ONE resident who will not MISS PN onset symptoms in the future. I was one miserable human-it hurt soo much I couldn't even cry-didn't have the energy and hadn't slept in 4 days!

The neuro on call I now refer to as the 'quack'. This neuro just flat out believed the neuropathy could not get worse if I was following his 'program' - it was/did. He'd done only base tests: Simple blood panel, urine tests and basic Nerve Conduction tests. As my neuropathy progressed-I was written off as a nutter.

It was my PODIATRIST, who works with lots of stroke, cancer and diabetes patient's feet, who suggested that I get a second opinion as the neuropathy was still 'progressing' up my legs to my seat. His comment was that 'this doesn't sound right'.

I did get that 2nd and as a result my diagnosis was changed to CIDP. That podiatrist essentially saved my life and life quality, because, as a result, I got all the tests and a real diagnosis. Now, I'm getting the meds and treatments that work from a neuro who listens to me when I say things are good, status-quo, or not GOOD.

I, for one, won't go into all the gory details of pain, how to describe it etc. Others are more articulate on that subject. It is a truly subjective issue to 'define'. I do suggest that you 'web' up 'Mankowski Pain Scale' which I've found is the best manner of describing your pains. Docs, I believe, keep the true descriptions we utter of our pains hidden in their 'Secret Code Books'.

Hope this all helps - j

I have found her knowledge in this quarter better than most docs!

Keep in mind, that's not an insult to docs, per se, rather that they have a big enuf job keeping up with their own fields' advances and their patients!

I'm glad that your neuro was able to get you on a good set of meds, but WHY do you not plan to continue to see him? Or are you planning to see an Endo, for your pre-diabetes? You have one life, there may be factors such as access or costs that prevent you, but, IF you can..do check it all out.. for the future, just in case?

Better to head it all off at the pass, than find yourself in a new, worse situation. Some exercises to help can be found at:
www.epodiatry.com/ankle-sprain.htm
www.aofas.org/i4a/pages/index.cfm?pageid=3330

Also, get some marbles from a dollar store- a dozen will do. Work to pick them up w/your toes [I put my marbles on a towell to keep them from rolling] and let them go-in a dish. Repeat until you're up to doing it well w/each foot for 3 minutes. It's very hard at first, but it give a workout to the front half of your foot - I learned this one in PT last year when I'd one broken metatarsal foot and grade 3 ankle sprain on the other. - j

Hi Diana, My progression was very similiar to yours, first one big toe and then the other , then the toes, ball of my foot, etc. I dont have muscle weakness though. They do get tired easily but are still strong. Also the botooms of my feet are very sore especially in the ball and heel areas and especially when i walk. It really feels like I am walking on broken bones. No cause was found for my PN after extensive testing, but I am sure it was toxin related.

Thank you MrsD and dahlek for the great suggestions. I do need to place an order with iHerb, so will add the B1 to it. As for not going back to neuro, I just don't feel like he is willing to try more to maybe find an answer to my problem. I wonder why he did not mention Lyrica to see if this was something I wanted to try. Oh well, I took care of that.

HeyJoe – how long have you had this condition? I know what you mean about the bottoms and balls of your feet. I take 150mg of Lyrica in the a.m. and 150mg in the p.m. Depending of what I have done that day, I can always tell if I have waited too long to take the p.m. pill. Sometimes I have to take it before dinner and sometimes I can wait until I go to bed.

I was doing a drug interaction check http://www.medscape.com/druginfo/druginterchecker on everything I take and found a confliction between Tramadol and Prozac. I would like to stop the Prozac and start on, is it SAMe that would be appropriate here?

Severe Interaction
TRAMADOL/SSRI'S; DULOXETINE
Tramadol Oral and Prozac Oral may interact based on the potential interaction between TRAMADOL and SSRI'S; DULOXETINE.

Tramadol/Selective Serotonin Reuptake Inhibitors; Duloxetine
This information is generalized and not intended as specific medical advice. Consult your healthcare professional before taking or discontinuing any drug or commencing any course of treatment.

MONOGRAPH TITLE: Tramadol/Selective Serotonin Reuptake Inhibitors; Duloxetine
SEVERITY LEVEL: 2-Severe Interaction: Action is required to reduce the risk of severe adverse interaction.

MECHANISM OF ACTION: The concurrent administration of tramadol and a selective serotonin reuptake inhibitor or duloxetine, a selective serotonin and norepinephrine reuptake inhibitor, may result in additive blockade of serotonin reuptake, resulting in central serotonergic hyperstimulation. The selective serotonin reuptake inhibitors and duloxetine may inhibit the metabolism of tramadol at CYP P-450-2D6, which may decrease its effectiveness by decreasing its transformation to its active metabolite, and may lower the seizure threshold.

CLINICAL EFFECTS: The concurrent administration may result in serotonin syndrome. Symptoms of serotonin syndrome may include irritability, altered consciousness, double vision, nausea, confusion, anxiety, hyperthermia, increased muscle tone, rigidity, myoclonus, rapid fluctuations in vital signs, and coma. Serotonin syndrome may result in death. Concurrent administration may also increase the risk of seizures and decrease the effectiveness of tramadol.

PREDISPOSING FACTORS: Predisposing factors include a history of seizures or epilepsy, a recognized risk for seizures (head trauma, metabolic disorders, alcohol, drug withdrawal, or infections of the central nervous system), or a genetic defect in CYP P-450-2D6.

PATIENT MANAGEMENT: If concurrent therapy is warranted, patients should be closely monitored for signs and symptoms of serotonin syndrome, seizure activity, and decreased tramadol effectiveness. Tramadol may need to be discontinued.
The manufacturer of duloxetine states that concurrent use of tramadol is not recommended.(1)

I have gotten much support, information, suggestions, ideas to try and I THANK YOU all very much.

diana

I have had PN for 5 years now. By the way Walmart has 250mg of B1 which is very cheap, less than 4 dollars i think.

Mrs D. Maybe there are others besides me, who would like to know what high histamine foods are. Could you give us an idea?

Thanks,
Cathie

P.S. Forgot to add that I tried the AlkaSeltzer and found it helped quite a lot with the burning. I was taking it nearly every day, but my liver enzymes elevated. Could this cause this?

Hi Diana, nice to meet you! Do you know what kind of pn you have? Does the doctor call it axonal? length-dependent? small fiber? Do you have any idea of your work-up? I don't know if you've checked the charts on lizajane.org, but they can help you see how vigorous your workup has been.

Are you okay with the risk/reward ratio of the Piroxacam? It is one of the anti-inflammatories associated with increased risk of heart attack.

From the Red Box Warning:

People who take nonsteroidal anti-inflammatory medications (NSAIDs) (other than aspirin) such as piroxicam may have a higher risk of having a heart attack or a stroke than people who do not take these medications. These events may happen without warning and may cause death. This risk may be higher for people who take NSAIDs for a long time. Tell your doctor if you or anyone in your family has or has ever had heart disease, a heart attack, or a stroke, if you smoke, and if you have or have ever had high cholesterol, high blood pressure, or diabetes. Get emergency medical help right away if you experience any of the following symptoms: chest pain, shortness of breath, weakness in one part or side of the body, or slurred speech.If you will be undergoing a coronary artery bypass graft (CABG; a type of heart surgery), you should not take piroxicam right before or right after the surgery.NSAIDs such as piroxicam may cause ulcers, bleeding, or holes in the stomach or intestine. These problems may develop at any time during treatment, may happen without warning symptoms, and may cause death. The risk may be higher for people who take NSAIDs for a long time, are older in age, have poor health, or drink large amounts of alcohol while you are taking piroxicam. Tell your doctor if you take any of the following medications: anticoagulants ('blood thinners') such as warfarin (Coumadin); aspirin; other NSAIDs such as ibuprofen (Advil, Motrin) and naproxen (Aleve, Naprosyn); or oral steroids such as dexamethasone (Decadron, Dexone), methylprednisolone (Medrol), and prednisone (Deltasone). Also tell your doctor if you have or have ever had ulcers or bleeding in your stomach or intestines or other bleeding disorders. If you experience any of the following symptoms, stop taking piroxicam and call your doctor: stomach pain, heartburn, vomiting a substance that is bloody or looks like coffee grounds, blood in the stool, or black and tarry stools.Keep all appointments with your doctor and the laboratory. Your doctor will monitor your symptoms carefully and will probably order certain tests to check your body's response to piroxicam. Be sure to tell your doctor how you are feeling so that your doctor can prescribe the right amount of medication to treat your condition with the lowest risk of serious side effects.Your doctor or pharmacist will give you the manufacturer's patient information sheet (Medication Guide) when you begin treatment with piroxicam and each time you refill your prescription. Read the information carefully and ask your doctor or pharmacist if you have any questions. You can also visit the Food and Drug Administration (FDA) website (http://www.fda.gov/cder) or the manufacturer's website to obtain the Medication Guide

LizaJane, thank you so much for your concern. I rarely take the Piroxacam anymore. I always was on the lowest dose there was. Yes, I was aware and the doctor told me to only take it when needed. I haven't had much trouble in awhile.

As far as what kind of PN I have - no, the only thing the neuro ever said was unspecified. Yes, I have looked at your charts and no I do not know/can't remember what my workup was other than the EMG and an MRI on my back which showed nothing pressing anywhere. Now with the prediabetes popping into the picture, I am wondering if this has been it all along. As I said, I need to get all my original reports and then fill in the charts where I can.

The following paragraph is a repeat from one of my earlier replies and I would like to hear thoughts and/or opinions if there are any.

I was doing a drug interaction check http://www.medscape.com/druginfo/druginterchecker on everything I take and found a confliction between Tramadol and Prozac. I would like to stop the Prozac and start on, is it SAMe that would be appropriate here?

Thank you all again.

diana