Well I have tried Lyrica,neurontin,cymbalta. All with bad jittery,nausea,out of body feeling. So now he wants me to try elavil. I was going to wait but my symptoms are worse and am sick from the pain meds I think so need to try. Last night I thought I was dying from the pain and from feeling so dizzy and nausea. I was suppose to have another emg though the others showed nothing and a ssp today but moved it to Thurs as I feel so bad. I can barely get out of bed but this is a joy compared to yesterday where I was groaning. Does anyone take elavil?Also how can I be in so much pain for 3 months in just one leg and now the past 3 days also have severe horrible in the other with new issues like numbing and feeling like I can't walk?Also how can one be in this severe of pain and all the tests show nothing? I had emg both the needles and electric current and now another on thurs. I had a mri of spine/brain,mri of ankle/foot,doppler,bone scans,xrays with just showing inflamatory. I have had 2 nerve shots with no relief. If anything all the docs make me worse. The pt made me worse and when I wore the shoe I was crying the next day in pain.Its like the aftermath. Any thoughts?

Hi Daniella, I was taking Endep, same thing as Elavil [ amitriptyline ] it did help some, i was on 25 mg in the morning & 150 mg at night, the night time dose initially helped with sleep, gave me a very dry mouth and increased appetite, but otherwise found it reasonably easy to take, i use to take 300mg slow release tramadol x 2 per day, the combination worked well for me, but we all don't necessarily react the same to drugs.
good luck
Brian

Daniella,

Have you had a skin biopsy for small fiber neuropathy? Small fiber neuropathy doesn't show up on EMG.

Some people, like myself are extremely sensitive to anticholinergics and serotonergics which comprise most of the antidepressants. Elavil (amitriptyline) is very anticholinergic. Some drugs are also antidopaminergic and that causes restless leg for people. We all have a unique drug tolerance fingerprint, that actually can be genetically tested, however, due to expense, it is not routinely done. What works for some people is absolute disaster for others. Blood levels of Elavil need to be monitored and many physicians simply do not do it. I get horribly ill on any serotonin reuptake inhibitor and had bad experiences with tramadol and cymbalta and everything in between. Elavil was not for me either. It has taken multiple bad reactions for the medical professionals to see what happens to me on those drugs. It is now finally documented that I can not tolerate those medications.

There are many neurotransmitters that are affected by small fiber neuropathy and the current medical approach is hit or miss, because that is all there is. It is so complex.

It sounds like something is definitely wrong, but some diagnoses, are ones arrived at by 'ruling out' others over a period of time. It seems that the skin biopsies, which are actually biopsies of nerves in your skin would answer the small fiber neuropathy question.

My suggestion is to try to get to a good neurological research center that does advanced testing. It took me about 10 years of being diagnosed with fibromyalgia and psych disorders, and other stuff, before a cardiologist figured out my cardiac response to maximal exercise was abnormal and he got me to a very good neurologist.

There are neurologists and there are neurologists.....some treat the mundane and some really search and dig for what is really wrong. I have not only peripheral neuropathy (sensory and autonomic) but also something not functioning in my central nervous system as well. Healthwise, I am on shaky ground. I am eternally grateful for a neurologist who understands what he knows and does not know, and is very frank with me. He is also very compassionate. I go to a research center affiliated with a medical college.

On the orthotic shoe, you have to get used to them. Wear it only as long as you can tolerate. It can take months to get used to them. I have orthotics in my shoe and it took forever to get used to them. Every two years or so, they need to be refit...and I am getting to that time again.

Hang in there. Somedays are worse than others, and you will have some good days again. Keep in touch with your doctors and get support where ever you can.

Thanks and I'm sorry for all you guys have been through. I agree everyone is different with meds and I'm starting to feel I'm not one to tolerate these as they all give me bad symptoms.Why does the blood need to be monitored on elavil? I have not had that skin test? On Thurs I have an ssp I think and another emg. My neuro is suppose to be one of the best in the area but so far not thrilled. My mom has been looking out of state to take me somewhere. The mayo clinic has a long wait and a specialist I think at the Denver Clinic felt he couldn't help me. I fear soon I will not be able to walk. I'm laying here in horrible pain and now I'm getting so much numb feelings.My whole body is aching even my arms but the legs are what give me the pain.With peripheral it seems like there is no cure unless meds help and the underlying problem. So depressing.Thank you.

I'm really sorry that you are in such constant pain. I'm not on Elavil but nortriptyline, a close analgoue. When I asked my neuro about the switch, he backed me off of Lyrica, neurontin was no help for me, he told me that nortriptyline generally has fewer side affects than Elavil. I do get the dry mouth but it doesn't stop me going to sleep. I'm also on tramadol 3x a day.

Cyclelops has a really good point about the skin biopsy. Small fiber disease does not show up on emg or nc studies - these are only useful for large fiber disease. The skin biopsy will at least give you a way to follow the progression or improvement, both do happen, of the PN.
I don't know where you live but people on the forum have had success w/ the neuro group at John Hopkins and I know Melody has frequently commented very highly about the care she and her husband get at Cornell-Weill in NYC. I've been very happy w/ the care I've gotten from the UPenn neuro group in Philadelphia and I understand that the Cleveland Clinic also has a very well respected neuro group although like every place it may take some effort to find a really good neurologist.

I hope you get some relief soon - best of luck.

Alkymst

Hi Daniella, if you can't take any meds for any relief, i have read previous posts in the past that say they do find some ease with electro stimulation, like " The Rebuilder ", or a " T.E.N.S machine " ,may be worth a thought if you can't take any medication, by the way, i have never taken Lyrica or Cymbalta but i couldn't take that Neurotin stuff either, it give me the same reactions as you describe, awful feeling, but i had no trouble with 300 mg Slow Release Tramadol, no brain fog or any other side affects for me.

Anyway you might like to read up about the Rebuilder- http://www.rebuildermedical.com/

and also Transcutaneous Electrical Nerve Stimulation (TENS) machine, is a similar device that doesn't use water, its a therapy that uses low-voltage electrical current for pain relief.
Here is a little bit of info about a TENS machine,

You do TENS with a small, battery-powered machine about the size of a pocket radio. Usually, you connect two electrodes (wires that conduct electrical current) from the machine to your skin. The electrodes are often placed on the area of pain or at a pressure point, creating a circuit of electrical impulses that travels along nerve fibers.
When the current is delivered, some people experience less pain. This may be because the electricity from the electrodes stimulates the nerves in an affected area and sends signals to the brain that "scramble" normal pain signals. Another theory is that the electrical stimulation of the nerves may help the body to produce natural painkillers called endorphins, which may block the perception of pain.
You can set the TENS machine for different wavelength frequencies, such as a steady flow of electrical current or a burst of electrical current, and for intensity of electrical current.

I think that the TENS would be a lot cheaper than the rebuilder machine, there may be free trials i am not sure, i wouldn't buy one without trying it out first, just a thought that may help you.

all the best
Brian

Thank you. My mom has also been looking at other tests and I'm going to ask about the skin test. I have an apt with the pain clinic on Mon and am hoping that they can offer some other non med routes cause I do have a hard time. It seems like my syptoms are spreading like even my arm is numb a little not like the leg pain but still. Do most people here have isolated pain or is it through? Mine for 3 months was so isolated and now this week it has really changed. The other leg is super painful and now the arm is numb.Thanks again for your help

Some PNer/s only have it in one place, like the feet and only stays there, others have it in the hands and feet, some progress start off in the feet and goes body wide this is why its extremely important to find a neuro that is a PN specialist, not just a normal neuro.
A skin biopsy won't tell what is causing your pain, it only good for comparison reasons to check if your nerve damage is getting worse or better, but normally you will know that, just by how you feel anyway.
Thermal testing is normally used first, it only a computor that they put a couple of electrodes on your painfull area and see how the nerves react when a cold or hot sensation is given to you through those electrodes, they normally can tell the small nerve damage that way and a skin biopsy is left as a last resort because its time consuming which means expensive.
good luck
Brian

The 'skin test' is an epidermal nerve fiber biopsy, taken at 4 sites, the foot near the ankle, the calf near the knee, the inner thigh and the inner fore arm near the elbow. It is taken by punch biopsy after a small amount of local anesthesia is injected. They do bleed for a few days as you have a small hole about the size of an 'emoticon' and about one fourth inch deep, perhaps more, depending on who does it. It is an in office procedure, however, will likely need to be sent to a major medical center neurology department for interpretation and it can take up to 6 weeks to get results.

You will likely have better luck with a physician referral to a major medical center. See if you can get one of your doctors to call a research facility. Waiting lists are very long.

Did you have pain after your skin biopsy,in the biosy site???

Daniella you are going through pain,which leads to stress,anxiety and
depression,and by now fear. Most of have been through all of these.
My family Dr. got me into the Mayo Clinic far sooner than i could. The
Cleveland Clinic is very good. We might be able to help with a place
if you want to let us know the area you live in. But as i said perhaps
your family Dr. could help your Mom. There are all kinds of meds,at
first it can be hit and miss. Can you think of a place you love,the ocean,
the woods and go there in your mind, some place you love try to smell the
trees,or the salt water. If you can do it off you go from the pain if only
for a short time. I bet you need to sleep there are sleep aids please if you
haven't tell the Dr. very firmly what you need. You may want to try a pain
Clinic. If you do take all of your records..Those shoes are hard to get use
to,they take a little time,sometimes you have to take them back so they
can adjust them. Also if they haven't,ask for a diabectic fasting test.
Please keep posting there are so many people here that are willing to help.
and there good at it why we have and are going through it.
Many blessings and much luck. Sue