Im new here with Small fiber nueropathy
 

Hello..I am new to this site I am 30 years old and work for a cardiologist as a CNA, and I have been fighting pain for over a year and still have very little answers...First step was a primary dr with chronic pain and numbness, he then sent me to a rhuemotologist to find out if I had arthitis she sent me to physical therapy and he had diagnosed my problem as nuerological which landed me at the nuerologist...since then I had my first MRI whiched came up with possible stroke, Dr then ordered MRA and the final conclusion on that was supposedly it was artifact in the imaging..I have 49% stenosis in corotid artery and skin biopsy was positive for small fiber nueropathy..
I am in so much pain, can barely move at the end of the work day. My hands and feet are always cold and in pain. I take nuerontin 200mg three times a day and an occassional pain med ..I dont like them though make symptoms worse. they have tried giving me Savella, which mad my HR go to nearly 145 resting. I have tried CYMBALTA with the nuerotin but it gives me a terrible headache..............any advise I am scared this small fiber is turning into large fiber..does anyone know anything about Large Fiber symptoms/

Neurontin @ 200 mg 3x day = 600mg/day. That is a starter dose to start titrating up to a point where symptoms start to feel better-usually about 1800 to 3200 mgs/day in divided doses. It has to be in effect 24/7 equally.
Taking a pain killer as well, a 'cocktail' is what most PN neuro specialists Rx along with the Neurontin.
I take Tramadol (Ultram) along with my Lyrica, but took it with Neurontin for 6+ yrs before switching to Lyrica almost 4 yrs ago.

Good Choice
 

Bob's !prescription for pain reduction, Lyrica (neurontin) and Ultram (tramadol) is a good choice.
I have PN and it works quite well for me. As far as the cold extremities, there isn't much you can do for that...other than wear warm socks!

All drugs effect individuals differently. I'm taking 100 mg. neurontin as needed, and that's only been twice in the past two weeks. I don't know what the "starter" dose is, other than what the drug companies recommend (300mg. 3x/day for Neurontin according to the PDR), which (as in the case of oxycontin a few years ago) may be somewhat exaggerated - they're in the business of selling drugs. (I could make a similar comparison to dog food.)

Prevailing wisdom is to find/take the smallest dose necessary to achieve a reasonable level of comfort.

Doc

My wife is another (actually the first) example. She was originally prescribed 300mg. of Neurontin 3x/day, and it turned her into a zombie. After discussing it with her prescribing doctor, he lowered her dose to 100mg. as needed. When my neuro prescribed it for me, I discussed this with him, and he agreed to try me at a much lower dose, which is working quite well (but still not without some dulling/zombification).

Doc

you are the first person i have run accross who has been prescribed an antiepileptic drug as needed. I have read that that class of drug needs to be in your system 24/7 and that it is dangerous to abruptly discontinue use. It may result in seizures.

Hi echoes -

Guess I'm the second person you've heard of who took neurontin (but on a daily basis, not p.r.n.) and quit cold turkey because of finally having the side effects of not being able to focus my eyes normally and a cotton-filled head (this was for post-shingles neuropathy in 2003). No ill effects - maybe I was just lucky? Vision, etc. went back to normal in no time. Anyway, the neuropathy was gone by then and stayed away - that time.

But I have read that suddenly discontinuing neurontin might cause seizures and that one should taper off per the doc's instructions.

Sheltiemom

Hey Doc what would be your pain level 1-10 when you dont need the 100mg?

I asked the doctor about that. His response was:
1. That the seizure warning is for people who have previously had seizures and are taking it for that purpose (we are not).
2. We had both been on it at higher levels previously.
3. He takes it that way himself for a neuropathic problem.

Our pharmacist also had no apparent concerns, and he would speak up if he did.

I wouldn't recommend anyone do it on their own; it's something to discuss with their own doctors. I'm just relating our experiences and that it needn't necessarily be taken in high doses.

Doc

PS
 

Something I forgot to mention....

I'm taking 100 mg. gabapentin as needed. The question/concern was about stopping it abruptly causing siezure. Most people are taking almost 10X that amount (or more) daily - 300 mg. 3X/day. If someone at that level were to titrate down to get off of it, eventually they'd get down to 100 mg. - that's the smallest capsule that's made - and then to nothing. I spoze you could consider that, effectively, I'm perpetually at that last step.

I expect that if things keep progressing, I'll have to increase dosage (or find some cocktail) as others have done. But I'll always go with the minimum I need to get by.

Doc

I've given this some thought. That question really doesn't relate to my situation.
1. I have a number of chronic pain issues going on.
2. Any one of them can flare and override others at any time. Headaches generally override/rule, because they're where I live - in my head.
3. My "6" may be (and often is) someone else's "9" or "10" because when it comes to "10" being the "worst pain imaginable" I have a VERY vivid imagination (think "R" rated Vietnam war/graphic Horror movie scenes).

On a really good day (rare), I may record a 4. On an average day, a 6. On a bad/flare day (much more frequent than a good day), 7 or 8. I have only recorded higher than that once, while in an ER. So PN doesn't really enter into my way of thinking about it; it's just another symptom/source of pain.

When I need to take a gabapentin is when I cannot sleep/function without. Even at the low dose I take, the side effects are intolerable to me; it knocks me out for 2-3 days, and I cannot function normally.

Like I said, everyone is different.

Doc

This has been posted before, but it never hurts to 'freshen' memories:

Mankoski Pain Scale
Copyright © 1995, 1996, 1997 Andrea Mankoski. All rights reserved.
Right to copy with attribution freely granted.

0-- Pain Free No medication needed.

1-- Very minor annoyance - occasional minor twinges. No medication needed.

2-- Minor annoyance - occasional strong twinges. No medication needed.

3-- Annoying enough to be distracting. Mild painkillers are effective. (Aspirin, Ibuprofen.)

4 --Can be ignored if you are really involved in your work, but still distracting.
Mild painkillers relieve pain for 3-4 hours.

5-- Can't be ignored for more than 30 minutes.
Mild painkillers reduce pain for 3-4 hours.

6-- Can't be ignored for any length of time, but you can still go to work and participate in social activities.
Stronger painkillers (Codeine, Vicodin) reduce pain for 3-4 hours.

7-- Makes it difficult to concentrate, interferes with sleep You can still function with effort.
Stronger painkillers are only partially effective.
Strongest painkillers relieve pain (Oxycontin, Morphine)

8-- Physical activity severely limited. You can read and converse with effort.
Nausea and dizziness set in as factors of pain.
Stronger painkillers are minimally effective.
Strongest painkillers reduce pain for 3-4 hours.

9-- Unable to speak. Crying out or moaning uncontrollably - near delirium.
Strongest painkillers are only partially effective.

10-- Unconscious. Pain makes you pass out. Strongest painkillers are only partially effective.

Yes, and I've responded with the even better known Hochman Scale, created by an actual PM doctor, rather than a lay person.
http://www.algosresearch.org/Practic...PainScale.html

Our docs - all of them, from all disciplines including PM - don't like either of them (or any of the others I've dug up). I've been having this discussion with them for years, and they've been quite candid about it. They don't want an objective scale nor one with benchmarks; they want a subjective scale compared against each patient over time, because each patient's pain threshhold, tolerance, and perception is unique.

If anyone's docs accept them, great. Personally I haven't met any yet (other than a brief exchange with Dr. Hochman). None of the docs around here do.

I always have such a hard time knowing which is the most accurate answers with those scales. A lot of the time, my pain feels like first degree burns...some would say that's unimaginably horrible, yet others would say it's not bad at all. Like someone said earlier "I can imagine some pretty horrible things" and none of mine is in that category, but it still doesn't mean I don't want it to stop or that it isn't having a profound negative effect on my life.

Let me ask this: what number will get a doctor to believe that your pain should be treated?

How true. Pain is different for everyone. Some people endure much more pain than others and say their pain is less. I have a very high threshold for pain, some people have very low thresholds.

I have headaches all the time, never gone. I go to work with head pain that many would stay in bed with. Movements make me dizzy when the pain is bad and people do not understand this. We have a delivery man that has a clipboard we must sign when he drops off items...he will wiggle it back and forth for my reaction, I just can not convince him it's not funny. If he truly understood what he was doing to me, he wouldn't do it, yet some people just can't fathom what you are going through.

We all have different levels we can handle and these levels can change according to the day. I wish everyone could be painfree, would be so wonderful.
:hug:

The pain scores are relative for each person. Ideally the scores are used as one tool to measure a response to treatment. Regardless of the number, if you are debilitated from the pain you should be treated. The response to treatment is measured by, among other things, your change in pain score coupled with your functional improvement. If your doc isn't doing it this way, try to find another.

Neurontin is titrated in 100 mg increments. Ideally start at 100 mg/day and increase the dosage by 100 mg increments every 2-3 days. You do this until you either get the desired improvements in symptoms or until you experience side effects from the medications. Many people experience sedation, but this can improve over time. Again, not easy to find a doc who will do it this way or knows how to do it this way. Hope that helps