Are you sure it is a correct dx? If trauma was involved perhaps RSD/CRPS...:confused:
We have a forum for that also.. if you want to read about it and the symptoms -
http://neurotalk.psychcentral.com/forum21.html

Hey canagirl :)
 

I had chemo for a rare uterine cancer....the chemo was a combo of taxol/carbo. They said I was pre-diabetic going into this and the chemo jumped my A1C up to 8.7. A month after chemo ended I could barely walk. That was in May 2013.....had to be my own advocate after PCP ran all the normal tests (complete blood work for neuropathy, back x-rays, neck MRI, and the 2 nerve tests, can't remember the names now) I knew absolutely nothing about neuropathy and the nerve specialist that ran the tests was really snarky and said I had very mild symptoms within the normal range. I was in so much pain and had no idea what to do. Went to a foot and ankle dr....he agreed with the PCP that it was neuropathy caused by diabetes/chemo. He was the first dr I saw that mentioned small fiber neuropathy. I read about it and called and asked him to do a biopsy. I was crazy at that point to find out what was wrong and give a name to it. My PCP had put me on a small amount of gabapentin and was giving me hydro. The skin biopsy confirmed severe small fiber neuropathy. I had no A and C fibers left in my feet.

So the journey began.....I started seeing a neuro (we are limited here in neuro's and I was not fond of this one) I could no longer drive and had to (still have to) sit in the back seat with my feet up off the floorboards (the vibrations of the car set my feet off). I got up to 2700 mg of gabapentin and started hearing voices in other rooms......muffled voices and music.....I had to go back down to 1800 mgs a day to get rid of this side effect which was very unsettling.

I stayed on the hydro (against my neuro's advise) and then he added Cymbalta. It also caused mental issues if I got above 30 mgs. But I stayed on the 30 for awhile because it helped clear my head which was always foggy. Then he tried Lyrica....that gave me a horrible stomach ache. Like you have as a kid when you eat too much cotton candy. He made me stay on it 3 weeks because he said he had NEVER heard of this side effect....well it didn't go away until I stopped the Lyrica. During the Lyrica phase I came off the gabapentin. Then I had proof the gabapentin helped some so I was able to go back on it after I came off the Lyrica.

I was told by 3 dr's that there was nothing else to be done except pain management. All suggested I go to a pain mgmt. clinic. I finally broke down last Sept/Oct and went. It was the best decision I have made since this started. He started me off on a BuTrans patch at 5mcg/hr with Percocet for breakthrough pain. I've titrated up and will start a 15mcg/hr patch this Saturday. I have to use the Percocet everyday so it's really not for breakthrough pain at this time but part of the pain plan. We're working toward getting the patch up to give me enough relief that I do only use the Percocet for breakthrough pain.

It's a slow process but I have gotten some pain relief from this mixture of gabapentin, BuTrans patch and Percocet.

My pain dr seems to think my best bet will be a SCS. I am not ready for that and may never be. Scares me to death to think of having something implanted in my back.

Sorry this was so long and thanks to anyone brave enough to read this small novel.

You people are amazing and even though I don't post a lot now (due to pain, depression) I do follow everyone on here.

Personal info: female, will be 53 in May, married to Bubba for 35 years, 2 grown children and 6 grandchildren, 2 chi-chi's (Charlie and Angus) and Bob.....my 20 lb cat ! Also outside cat "Black Kitty" because I never gave him a name...lol....Filed for disability and was approved in 2013. And St George Island is my favorite place in the whole world.

Debi from Georgia

Slowly I turned, inch by inch
 

Could not resist ripping off the three stooges. As it has been two years, I feel one year was a descent marked by pain that moves and changes. Left side involvement 60 days after trauma. At the worst I could not manage a sidewalk curb using a walker. Now I am practicing walking without the walker at all(inside the house). Lost 60lbs and now gained 20 back, still need to lose a lot because I know that would help my mobility. There are few hard facts with Neuropathy as I read posts,the old disclaimer applies"results may vary". Good Luck, Ken in Texas.

Please help! What else can cause these symptoms?
 

Hello,

I am waiting for a skin biopsy so I don't know whether or not I have SFN. However, for the last 6 months I have literally been burning head to toe all the time. It started a year ago with full blown head to toe 100/minute muscle twitching. Present symptoms: I have twitching, electrical sensations, burning, tingling, prickling. These sensations are literally 24/7, happen all the same time. I am in agony. My Dr. doesn't think this is SFN b/c I don't show clinical evidence of SFN. If it's not, what else could it be? I need to point my Dr. in the right direction (I have seen 3) and they all say nothing wrong with you, sorry I won't see you again.

Tests so far
MRI - head, neck, full back - all normal
EMG - right leg and left arm - came back with carpal tunnel in left arm
EEg - normal
Bloodwork - Ca, Mg, Potassium, glucose, iron, B12, copper, ANA, lyme, Igg, Iga, Igm, female hormones, testosterone, (some more I can't remember) - all normal
Urine - norepinephrine, cortisol - normal

What else could this be? What I have them look for? Please help. I'm only 30 I can't imagine living life like this. I don't know how to keep going. Please don't read and move, please respond. I need all your help.

You said
 

in an earlier post that you took a medication that triggered everything. That would be huge for many sufferers who search for a cause. Your symptoms sound like others here that have Chemo Induced PN, Search CIPN and tell the story of what this medication was, Perhaps someone else has been there. Good Luck, Ken in Texas.

What was the trauma mentioned in this thread?
http://neurotalk.psychcentral.com/thread216927.html

the medication started the twitching ( I think but DR say no). But I had, NO burning pain,tingling, or prickling until a naturopath ran a current of electricity through me that was supposed to help my tissues expel toxins (the medication) and lead to healing.

Hi canagirl, before onset of symtoms what medication was it you took if you don't mind me asking, they think mine could have been caused by metronidazole.

Hi Ken,

I really appreciate your responses. I feel so alone and don't know where to turn. I really do need responses from everyone that I can.

Thank you so much.

Canagirl,
I think it would be helpful if you could tell your story from the beginning. I don't think anyone has enough details to be able to offer their ideas or compare to their conditions. The skin burning is consistent with SFN. That is all I can say.

i started using gabapentine for the last 5 mouths but i am getting of it because its not doing anything.
And secondly i am not in that much pain its these days more stiffness and numbness that i have to deal with and ofcourse a little bit of tingling in my feet.

Maybe someone who knows more than me about this can chime in, but my current understanding is that a skin biopsy is the only way of showing "clinical evidence" of SFN. All the other tests would be normal. Or am I misunderstanding?

Like many here I try not to harp on unduly about the awful side effects of drugs because I know I'm unusually intolerant and don't want to put people off drugs that may well help them tremendously. In my experience of pain - whether neuropathic, joint, headache or GI or other - it is very subjective so what one person can tolerate is very different to another. I have had three babies, two very large, and only had a bit of gas and air for one of them - the other two were both born the wrong way round and it was exceptionally painful. So I think I have quite a high pain threshold but a very low one for tolerating drugs - whether they affect my skin, my hair, my tummy or my mood - I hate feeling that I'm poisoning my body - try as I have to see these drugs as my magic potions.

For me the best of the nerve pain symptomatic drugs was Amitriptyline which I took for three years. I discovered by accident (forgot to take them away with me!) one day that it was causing the heart palpitations which were pretty
heavy going so I just had to stop.

I have a conflict here because I wouldn't want anyone to be in pain unnecessarily but some of the drugs I've been prescribed have been very problematic - swelling of the face and neck and ears, awful red itchy rashes, nausea and sickness both ends 24/7, drunken dizziness and anger, nose bleeds, hives - you name it I've suffered from it. One Parkinson's drug I was tried on for RLS had me falling asleep on the middle of a beach in the rain while walking the dogs! So I wouldn't know where to start with advising you - this wouldn't be appropriate I feel as these drugs are well tolerated and very helpful to many. It's not that I'm not in pain - it's just that the way I respond to pain might be very different to the way you do.

Joe,
Thank you for your input. My sister-in-law came down with shingles about 3 yrs ago. Her pain is over one eye. The doctor is still prescribing Cymbalta once a day and Lyrica twice a day. Hubby went with her to doctor's appointment last Friday asking specifically about decreasing and eliminating those two meds. He said he would reduce Lyrica; but felt when she originally came to see him, she appeared to have some depression. Who wouldn't have some depression with Shingles. Will pass this info on to hubby/sister-in-law.
Thanks again.

Gerry

I heard certain pain drugs, lose thier effectiveness, overtime once you take them, and you build tolerance.

Originally My PM did gradually up my prescriptions until I came to an acceptable point in dealing with the remaining pain.
I've been on my same dose of Oxycontin, Percocet, etc. for about the past 4 yrs. My pain is still 24/7; but tolerable. When the need for breakthu med arises, I take the Percocet. Usually 3 -3 1/2. My scrip calls for a max of 4 per day. I can still tell they are working.



Gerry

On more than one occasion I have had to clarify that I do not suffer from generalized anxiety or depression related to a chemical imbalance but that they are for me, circumstances of living with PN.

I have also learned (the hard way) to describe symptoms and convey my experiences in a calm manner. I need medical help and the last thing I want is to trigger my doctor's own fight or flight response. :eek:

Ah, remaining calm with the physician.


I think it was about a year ago we had a heated conversation over testing or medicating further. I wanted one or the other. He saw hemming and hawing as talking points.

So, he says "Let's check that blood pressure, eh?", assuming some crazy number is coming- 120/80.

I think what gets me ramped up most is I have so much I'd like to talk about.

The neurotin had caused me much more pain than what I was having before.