Recently diagnosed w/ Small Fiber Neuropathy -- now what?
 

Hi everyone. I'm new to this forum; was recently diagnosed with Small Fiber Neuropathy and today found out I tested negative for just about every potential cause (autoimmune diseases, diabetes, HIV, hepatitis, etc.).

It's good news, but I'm very confused, frustrated and anxious.

First off, let me say, my neurologist is fantastic--one of the top in his field at a fine hospital (NYU). He is extremely thorough and I trust his opinion.

I am a 40-yr-old female, in good health, about 20 lbs. overweight, but in reasonably good shape (worked out 3x a week until 2 months ago) and fairly healthy diet (no fast food or soda; lots of veggies, whole grains, lean meat).

A few years ago, I began experiencing numbness, tingling and burning in my feet. In 2011, I finally had an EMG & MRI. Results showed nothing. Then, earlier this year, the tingling and numbness turned to PAIN, so I had another MRI--this time it showed nerve damage & edema in both feet/ankles. Skin biopsies on ankle & hip showed Small Fiber Neuropathy.

I started on 300mg gabapentin in late April, now up to 1200mg. But it doesn't help w/ the pain and it makes me drowsy and foggy. I also have blurred vision, shortness of breath and short-term memory loss. And I feel physically exhausted ALL day (I walk with a cane & take the subway to work each day--lots of stairs!).

Now, my doc suggests I try Cymbalta, but I want to read more about it first. Also, he did say my B12 was slightly low, so I'll start taking 1000mcg a day.

Though I have my share of stress and anxiety, I'm happily married, have a good job, 2 cats and close-knit family. I'm generally a happy person, but after 2 months of pain and limited mobility, I'm sad, listless and indifferent. Part of it is not being able to exercise--that's my stress relief. Also, living in NYC, I'm used to walking EVERYWHERE and I miss it terribly. Now, I'm depressed most of the time. I feel like I'm missing out on everything, but at the same time, I don't want to take part in anything because I can't enjoy it.

I'm also horribly sad and frustrated because, after months of tests, we have not determined any cause for my pain and immobility. I'm overwhelmed by the notion that this pain could just continue indefinitely.

So that's my story. I'm considering acupuncture, homeopathic or dietary remedies (other than B12). I wonder if Cymbalta would help with depression or make it worse? Any advice or suggestions would be helpful!

Thanks for listening and be well...

APJH

apjh,
 

All the symptoms you are complaining are the same side effects my sister-in-law had from the gabapentin. She had come down with Shingles; but that was the least of her problems. The big problem was the gabapentin/neurontin (generic). The doctor also wanted to put her on Cymbalta as well. My sister-in-law is not married 76 and lives alone. Thank God my husband listened to my pleading to get her off the gabapentin and not to let her take the Cymbalta.

For a while, we were very concerned about her memory problems and she also was quite unbalanced when walking.,living along was very worrisome. Since she is off the gabapentin, as well as other meds the doctor had prescribed, She is back to her old self again.

Some time ago, I was on the Cymbalta for a week. All I did was want to lay down and got even more depressed. I had doctor stop the Cymbalta; especially when I told my surgeon, who did my fusion, this pain specialist put me on this. I get migraines and at times, take Imitrex. Cymbalta warns especially about people using migraine meds that this can be lethal. My surgeon actually called the pain doctor to inform him that I should not be on this.

I have throid disease and take synthroid. You really should see an endocrinologist. I started with hyperthroid disease about 15 years ago, and eventually went into low throid. I remain hypothroid (low throid). I see my endocrinologist every 4 to 6 moonths and get my blood tested for my throid.

I have PN and am now under the care of a different Pain Specialist. Unfortunately, I have had spine fusion, along with the edema and burning of the feet and ankles and I do take Oxycontin every 6 hrs. and Oxycodone (percocet) for breakthru pain. I don't like being on a narcotic; but it helps get me thru the day. Fortunately, this does not affect my memory or make me too sleepy. In fact, because of the pain when laying down, I do take Ambien CR every night as well.

I hope you can get meds adjusted to a place where you can tolerate the pain. You may need to see a Pain Specialist as well as an endocrinologist.

Gerry

Most of us here seem to be on gabapentin. It primarily is a nerve dampener, it works for the burning and electrical zaps, not for the sharp pain or stiffness. I am one of the few here who do not have any side effects, weight gain, water retention, etc. I am on 1800 mg. daily. I do notice a difference if I forget to take it.

It doesn't help everyone, however, and some find the side effects intolerable. Lyrica is another possibility. Even with the anti-convulsives, many of us take pain killers for breakthrough pain. I take oxycodone to get though demanding days, long car rides, etc.

Has your neurologist thoroughly investigated the possibility that you have a hereditary neuropathy? I have CMT type 2 , and was about your age when the symptoms became painful. Has anyone in your family had trouble with their feet and legs, walking, worn braces, etc. it can set in at any age and varies greatly even within families.

My last question would be whether you are or have been on any triglyceride or cholesterol lowering medication. While I have some pain and usually use a hiking pole for balance, when I was on Tricor I could barely walk and was in intense pain with no balance at all. My neurologist suggested that I might want to go off that. I improved immediately, but it may have started a decline because my CMT has progressed quickly since then, which is unusual.

Is stiffness and difficulty going up steps or hills among your symptoms? I am losing the ability to go up stairs at all, it is vey painful. I also tend to catch my feet because I drag them slightly. If this sounds like you, investigate hereditary sensory motor neuropathy or CMT.

I hope that you get some relief

Do you know your B12 numbers? Slightly low to a doctor today, could be significantly low, because the lab ranges are so low.

1000mcg may be rather low if you are very low.
For people who have damage, and are low 5000mcg a day on an empty stomach will provide more response. You may want to find out your actual result for that B12.

Did you have Vit D tested too? That would be a good idea as well.

And--
 

--I'd check on the completeness of the work-up (I suspect I know who you saw at NYU) with the Liza Jane spreadsheets:

www.lizajane.org

Unfortunately, unless there's a screamingly obvious cause of small-fiber neuropathy, such as diabetes, it can be especially hard to pin down the cause (predominantly small-fiber neuropathies have a higher "idiopathic" rate on first and second-line investigation than any other type).

Hi APJH, Welcome.

IMO, if the gabapentin is not helping the pain, and causing those kinds of side effects, there doesn't seem to be any upside to continuing it, so ask your doctor to wean you off of it (abrubt cessation is not recommended).
http://en.wikipedia.org/wiki/Gabapentin#Withdrawal

Before trying Cymbalta, you might ask your doctor to indulge you and try:
100 mg. Stabilized R-Lipoic Acid (1/day)
500 mg. Acetyl L Carnitine (2/day, 12 hrs. apart)
100 mg. Pantothenic Acid (1/day)

You can take these with the B-12, which should be on an empty stomach.

Cymbalta may help your pain symptoms, but AFAIK, has little/no value in arresting/reversing neuropathy, and has a higher side effects profile.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000274/

The above combination of OTC supplements may help your pain symptoms (with higher safety and lower side effect profiles) and may help nerve damage as well. If you don't see any results within 30-60 days, you probably won't.

Please feel free to google/check out any/all of this, and more information can be found in the PN Tips, Resources, Supplements & Other Treatments Sub-Forum and in the "Sticky" threads at the top of this forum.

Exercise is important; there's a recent thread on that (and more in the archives). I have similar mobility limitations/cane, but Tai Chi is working for me.

Doc

Re B12
 

[QUOTE=mrsD;883295]Do you know your B12 numbers? Slightly low to a doctor today, could be significantly low, because the lab ranges are so low.

Doc said my B12 numbers were at the low end of the normal range. I started taking 1000mcg today, as directed. I see my regular MD next week and will ask him if he thinks I should increase it.

Thanks for your response!
APJH

Thanks! My blood test results are on their way to me so that I can review them. I did get a copy of the prescription for the blood work-up and my doc had checked off a dozen things to check for, plus wrote in another half-dozen, so I believe it was fairly complete.

Thanks for your response!
APJH

Hi Susanne. Thanks for your response. What is CMT?

We have no neuropathy in our immediate family, though I may dig a bit deeper into this possibility.

Thanks again for your response. This is all a big mystery to unravel!
APJH

Thanks so much for your response. I'm going to print out the list of meds you provided and take it to my doc next week. Let's see what he says.

As for exercise, I may go back to swimming, which I used to do for years. It's the most low-impact exercise and won't exacerbate my symptoms or worsen the pain (I hope). I just need to get my heart rate up again!

Thanks and all the best to you.
APJH

Are you taking cyanocobalamin or methylcobalamin?

When using oral you should take on an empty stomach as food will block absorption.

Here is the B12 informational thread with medical citations:
http://neurotalk.psychcentral.com/thread85103.html

Low end of the old normal range is at or below 200.
The new cut off for normal is 400 (US units)
Methylcobalamin is best now, because the cyano form has to be converted to the methyl anyway. If you have a genetic error in this conversion (which is pretty common--- 10-30% of people have this called the MTHFR polymorphism), you cannot make methyl form from cyano and it won't work. Methyl form is very inexpensive and affordable and available online at many outlets today.

Since only about 10mcg is absorbed from 1000mcg oral, it will take a while to get up to a better level. Hence the higher dose will work better and faster. But that is your choice after all.
The oral absorption only really works well on an empty stomach as well, so make sure you do that at least.

We see so many people here who are not being given adequate treatment for B12 deficiencies. So if you know all this information already, please excuse me, but a large number of those coming here are either never tested, and/or never treated properly. Many doctors don't even know what methylcobalamin is (the biologically active form for B12).

Think about this:

When starting a new regimen for PN, it can be best to go slowly.

Now you know you are low in B12, so give this a while to work.
It might just fix everything, and you won't need much else.

Adding in RX drugs and a list of supplements may then cloud the issue. It is best to add in one thing at time, and wait a month or so to see if it works. RX drugs do not heal, they only block perception of symptoms.
The other supplements (including the B12) can lead to real healing.

CMT is Charcot Marie Tooth, also known as hereditary sensory motor neuropathy. There is no way of knowing how many idiopathic cases are actually hereditary. I was not able to get medical history from my father which delayed my diagnosis,but many people do not realize they have it, or it may even skip a generation. How are you on steps? Are the muscles in back of your legs unusually tight?

Hi Suzanne,

CMT does not really skip a generation. It's just that symptoms might not be that evident and so they are blamed on something else.

You are quite right that many people do not realize that CMT is what they have. There are so very many types of it. There are mutations which are considered rare. CMT has often been misdiagnosed as something else even today. A person needs to have a neurologist who is an expert when it comes to CMT.

Symptoms can become evident when you are young, old or in-between. Or as I said they may not be that evident. Symptoms vary greatly even within the same family. It is complicated for sure. :(

Mrs.D, does the effectiveness of supplements is impede when taken along side the prescribed medicines?

Thanks:hug:

I don't believe so. But I do think that if there are improvements when you are taking many things, it will be difficult to pin down what is doing what.

In this thread the original poster has a diagnosis of low B12.
That should be attended to first, to see if improvements occur with supplementing it.

For Idiopathic patients with no B12 deficiency then typically they are on some RX medications when they come here. And many times are not getting the relief expected. So adding in some supplements, may help and turn things around. It is easier to
spot these improvements, because they were stalled using what the doctors gave. Each case is somewhat unique, therefore.

People with terrible dietary habits or gluten intolerance, may be low in many things as well (magnesium, antioxidants, B1). And people with mito damage, may need the combos (CoQ-10 +Acetyl carnitine + lipoic acid) for improving mitochondrial functions.

These are examples, of why I tend to ask lots of questions...because the answers may point to a different approach for that poster.

By all means. Just don't be surprised if he scoffs (he may or may not), but he shouldn't have any objections to your trying them. My own experience went something like this:

I got retested and a second opinion at a major medical center (which creatures do tend to be on the conservative side). The PN specialist there, who's supposed to be the best guy in the area, told me there was nothing to do, and gave me a prescription for gabapentin. Having done some homework in advance, I asked him about R-Lipoic Acid & Acetyl L Carnitine (I didn't learn of Pantothenic Acid until later) and his response was, "Well, I've heard they're doing something with that in Europe, but we don't have any studies supporting it here. If the gabapentin doesn't work, I might mention those others to a patient if they want to [try them]." (That's actually pretty close to his exact words.) I don't know if it was just him, or that he's a cog in the AMA/Med school machine, but his response sounded pretty lame to me; Europe isn't exactly Lower Slobbovia. I did manage to talk him into writing the prescription for a lower dose (again, from homework and previous experience).

Some of the more progressive doctors are on board, or getting on board, with these supplements; the more stodgy conservative Citadel dwellers aren't - they're quite frankly behind the times. I have no idea where your doctor may be on this; I hope he's one of the savvy ones. ;) My current doctor is much more open-minded/progressive, and we have a great rapport/relationship.

Links to studies and other information supporting use of these supplements can be found in the PN Tips, Resources, Supplements & Other Treatments Sub-Forum, in the "Sticky" threads at the top of this forum, or by searching Google and/or WIKIPEDIA.

I have the same philosophy as MrsD's in that:
I tried B12 first (and I'm still taking it to keep my nerves fed), and after a month I began the R-Lipoic Acid (which worked very well for me). A month later I tried Acetyl l Carnitine, and after learning of it a few months after that, I added the Pantothenic Acid (B5) and had further improvement.

I mentioned the three of them together, and have no reservations about recommending trying them together, because there is so much evidence that they work in conjunction. Seperate or together is up to you.

By use of just supplements, lifestyle changes, and to a lesser extent diet, I've halted the progression of my PN and actually gotten some improvement.
http://neurotalk.psychcentral.com/post880426-220.html

Doc

I like when you (or doctors) ask more questions. This helps us reveal some details which we think may be insignificant to our condition. Also, when you ask questions, this means that you are really interested to help.

Thank you for your concern to all of us.

Hi, I like all the anwers everyone has given you. Starting with the supplements may be how you want to start. However, I do take Cymbalta. I tried all the anticonvulsants and a few other meds before taking Cymbalta. I have to tell you it was the first thing to help with my pain. Everyone is right, this med will not help to cure your SFN but it may give you some relief. It may even have the extra feature of helping your depression.
I remember how it was in the beginning. I have had this for just about 4 years now. The most important thing to remember is you do get use to it. (I know it sounds crazy). You learn to live with it if you don't allow it to take over your life. Take one day at a time. Remember there are alot of people here that can help. :hug:

Are you saying I should quit taking the gabapentin and just try the B12 by itself? Or just that I should hold off on switching to Cymbalta or another painkiller? (I've been taking B12 for 5 days now, but I will ask my doc if I can increase from 1000mcg to 5000mcg.)

Thanks!
APJH

If you start the B12 and Cymbalta together, and start to feel better, you won't subjectively know which is doing the job.

But if you are so uncomfortable, and miserable not starting the Cymbalta is only prolonging that.

It will take a month or more on B12 to see if there is any difference.

But I certainly wouldn't add in other supplements with either of these two things, yet.

You are already on gabapentin, and know how much that is working, right? (or not)

Not everyone who comes here has a definite low B12 test result already in hand.
All I am suggesting is that the low B12 when corrected may help alot.

Cymbalta does not work for everyone...and it remains the only antidepressant with potential toxic liver reactions. So considerations about that need to be considered. (benefit vs. risk).

If your gabapentin is working for you, you don't need to change it at this time. But this drug also is not reliable, and new studies show only about 30% of patients find it works for them.

Hi Doc. Thanks for your advice. I did talk to my doctor at length and he thinks, based on my history, symptoms, etc., that Cymbalta will help with both pain and depression. So I've started on 30mg a day, while I wean off the gabapentin (down from 900mg to 600mg so far).

I am taking B-12 daily, as my number was quite low (270), though my doc says I shouldn't take more than 1000mcg for now.

Thanks again for your input.

Be well,
APJH

Hi mrsD. My B12 number is 270--according to my doc, that's the very low end of the normal range. So he thinks 1000mcg a day is enough for me.

My doc requested more blood tests, specifically to look for other vitamin deficiencies that my neuro didn't test for, including vit D.

Thanks for your input!

Be well,
APJH

Hi again. Gabapentin really has not worked for me, even after increasing the dose from 300mg to 1200mg. I don't want to take more because of how drowsy and foggy it makes me--it's hard to work while taking it.

So, I've decided to start Cymbalta 30mg, along with B12, while weaning off the gabapentin (down to 600mg now).

We'll see how this goes.

Thanks for your input and be well!
APJH

So then expect a long wait to raise your levels and then see results. I hope you are using the active methyl form of B12 and not the cyano. Some people cannot methylate cyano version to its active form so it will work.
You must take it on an empty stomach, as presence of food impairs passive absorption in the intestine.
The new cutoff for "normal" now is recognized as 400. So you are well below that.

Only about 10mcg will be optimally absorbed orally from 1000mcg oral. There is a study that measured this:

http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

For people with long term low B12, faster treatment makes more sense. You don't just need to bring up a level, you need to replenish all your tissues.

But it is your decision in the end.

IOW, he scoffed. :rolleyes: I had a professor once who used to say, "If you can't get in the front door, try the back door, or a window." The big question is, does he have any objections to your trying the supplements recommended? If not, wait until the Cymbalta has settled in (I'm not conversant with Cymbalta off the top of my head, so however long that is) and you've established a baseline (normalized how you feel) and try adding in one supplement at a time for a month, then add or try another. Eventually, you'll find what works for you and what doesn't, and hopefully be on the road to improvement, and may be able to wean off the Cymbalta. Cymbalta may treat symptoms, but won't halt or improve the nerve damage.

In the meantime, research Cymbalta (if you haven't already - it can be funky stuff) and keep reading up on what ails you. We have to become our own advocates. ;)

Doc

Flaky skin?
 

Saw my doctor last week and he told me to be on the lookout for flaky skin or redness on my feet and ankles, where the worst of my neuropathy is.

Since then, I've noticed the skin on my feet has become quite flaky. Does anyone know how this relates to SFN and if I need to do anything about it?

Thanks and be well,
APJH

He may be concerned about RSD/CRPS - or not.

If it were me, I might give him a call and let him know, and ask why he said that.

Doc

There are other causes of extremely dry skin...flaking.

1) low intake of Essential fatty acids is one common cause.

This would be flax oil and fish oil. You could start orally at 1 gram of flax and 3 grams of fish oil to start. (you can also use Krill oil, instead of fish oil...it is more potent so 2 of them a day should be enough.)

2)If your circulation to the feet is impaired then nutrients cannot get down there. If you soak in epsom salts daily, the skin will soften and the dryness will improve. Magnesium may not get to your feet for the same reason I gave above. People who take baths tend to have softer skin than people who shower. Soaking in a tub tends to hydrate the skin much better. You can also put epsom salts in the bath tub...but be careful getting out, as it can be slippery.
6-8 oz in of salts in a bathtub of lukewarm water is often sufficient. Soak at least 1/2 hr or so.

3) you could try high dose Biotin, 5 or 10mg a day to improve skin tone.

4) There are magnesium lotions and creams you can put on your feet. Epsom-It and Kirkman magnesium cream are two good ones. Available on the net easily.

Susanne C: I've been on Crestor and Lovesa for triglycerides and cholesterol for years. Crestor brought my LDLs down some and my HDLs were ok but my triglycerides were extremely high. So I got Rx for Lovesa. Next blood test showed all readings to be great. LDL low HDL high and Triglycerides normal. All good stuff. But I have never heard about balance issues associated with these drugs. I can walk ok but I hope the cops never pull me over and do a "walk the line" test. I'd flunk and be in the drunk tank in no time. When I walk down the hall in my house, I use my hands to keep from bumping into the walls. I have trip over the smallest imperfections in a sidewalk. I fear walking at night in a poorly lite area because I can't see the walk or my feet. So my question is, what are the alternatives? I am finally in good shape lipids wise after 40 years of bad triglycerides. But I may be getting osteoporosis (probably from some other drug I'm taking) and tripping and breaking something is now my worst fear.

For me I went off the Tricor immediately. My triglycerides were 512 when my doctor freaked out and put me on it. The Tricor brought it down to 360. Losing some weight, watching white flour and sugar, and walking along with taking fish oil have kept it in the low 300's, without the Tricor. My CMT is the only health problem I care about, so I don't really worry about the numbers. There is something called hereditary high triglycerides which is benign, so I assume it is that as my blood pressure is excellent and I have no heart risk markers.
Only you can decide whether it is worth going off of it to see if your balance improves and whether you are willing or able to put serious effort into lifestyle changes, if they are even warranted in your case. You may already be doing all you can in that area.
I can only say again that my balance improved a lot when I went off them. It isn't great now, but I have been going downhill the last little while. It s still much better than while I was on the Tricor.

If you take statins, what you can for yourself is next to useless.

Statins, including Crestor (the most potent and toxic) damage nerves and muscles. You will not fix or correct that as long as you take it or another statin. And if you have been on a statin long term, there may be damage that does not respond to any supplements or anything you can do to reverse it.

That is between you and your doctor, however. But the tide is turning daily against statins. We provide information your doctor does not give you so you can make a more informed choice.

http://neurotalk.psychcentral.com/post665830-5.html

And new information has come to light that statins, actually cause and promote diabetes:

http://www.nytimes.com/2012/03/05/op...tin-users.html

and other effects:
http://neurotalk.psychcentral.com/post677460-8.html

Statins have an uncertain or minor risk for someone with CMT.


http://www.cmtausa.org/index.php?opt...d=68&Itemid=42

I think that they are generally contraindicated for neuropathy, not sure whether worse if you have CMT, but it was my neurologist who suggested I stop taking them.

Statins can cause weakness and muscle pain to name a few side effects even with the general population. I personally know at least two people (general population) that this has happened to.

It would seem that the side effects are worse for someone with CMT as we already are weaker, have muscle pain, etc.

Dear APJH,

I to am new to this forum (several months) and have found a HUGE amount of information regarding PN. Mrs.D suggestion about the B12 should be further investigated. A book I found interesting on this subject is "Could it Be B12?" by Pacholok and Stuart. This book shows many examples of how low B12 can effect many parts/systems of the human body.

Sincerely,

Judie