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