Re: Neuropathy & PAIN!

Posted By Pat on November 08, 1998 at 21:08:33:

In Reply to: Re: Neuropathy & PAIN! posted by CCF Neuro MD* on November 02, 1998 at 19:02:55:






    I am in so much pain from neuropathy that I don't want to live like this anymore.  Nothing I take helps the pain.  I have been on neurontin and Paxil.  I am now on 75mg. of elavil.  On the 75 mg. I was still up all night because of the pain from the heel all way up to my buttocks (pain in hands and back of arms).  I cannot lay down without pain or sit down without pain. Around 5:00 a.m.  I was finally able to fall asleep from pure exhaustion. It was  2:00 p.m. when I woke up. The 75mg. helps me to sleep, but my brains are so foggy - all I'm capable of doing is sitting up looking in space or watching tv (my feet and the back of my legs hurt too bad for me to walk).  My question is - is this the pattern of life for people who suffer with severe neuropathy?  Do people with neuropathy lead normal or productive lives or do they just sleep away their lives because of the pain?  Please tell me how to live with this disease?   Is the only solution for me is to increase my medication - and really sleep away the rest of my life?  I am a female in my forties - I haven't done everything I want to do yet!    Are there any lifestyle changes I can make to reduce the pain or therapies.   Do I need to accept the fact that because of neuropathy this is the way my life has to be and I just need to mentally adjust to it?  Please give me some advice on this.  Thank you!  
Dear Rolee,
Many people with peripheral neuropathies have various levels of pain.  Some neuropathies respond to treatment of the underlying disease.  Unfortunately, symptomatic treatment of neuropathic pain is often difficult and rarely provides complete relief.  Simple analgesics such as aspirin, acetominophen, and nonsteroidal drugs may help.  Tricyclic (elavil, desipramine, nortryptiline) are frequently used. Elavil is one of the more sedating medications; however, there are several other medications in that class of drugs that will work for a PN and cause less sedation.  Other medications that may be helpful include clonazepam (which may enhance the tricyclic effect but also cause some sedation) and carbamazepine.  Mexiletine is occasionaly used in diabetic neuropathy. Discuss these options with your doctor.  If ever you are interested in getting an evaluation at CCF, call 1-800-CCF-CARE.  Good Luck.
I sympathize with your pain. For the last three months I have experienced the worst pain of my life and have been more than frustrated with the difficulty of finding a diagnosis.  I was finally diagnosed with cervidal and trigeminal neuropathy by my primary care doctor, but the neurologist thinks I have TMJ and Anziety! Now I don't know what to think. I was first prescribed xanx and ultrum for TMJ and Panic Attacks. That did nothing for it. I have pain that begins in the face, jawline, both sides, it radiates to my neck and chest and causes me to have difficulty catching my breath, then down my arms. The pain is tremendous! Horrible! I only want to pass out when it happens, but cannot. It will last only a minute or two, but then will start again. I usually have three or four of these spasmodic episodes before it gives up and leaves me in peace. I often wake in the morning or at night with these "seizure" like attacks, and no one seems to really know what is going on. I fell the day before they started and jerked my neck. My primary care (who is an internest) feels that I damaged my sensory nerves. I do have some numbness in my legs and hands, but neither doctor seems interested. I have suffered fatigue for some years now and walk crooked, and will fall over if I close my eyes. I have no middle ear bones due to a large colesteoma removed from one side three years ago. But all the tests show nothing, and I get the feeling my doctor's want me to go away.
I am sorry to jaw on about myself, it is you that I sympathize with. I found the neurontin to be very helpful, I cut down on the number and intensity of the attacks, but you have to give it time and get the dosage high enough to help. Neurontin is helpful in Neuropathy according to what I have read, perhaps you should try it again, but not eveyone's reaction is the same. I am not made sleepy by it (not after the first dose). Keep your spirits up, the right combination may be found soon. I am not hopeful I will ever stop having this pain, the doctor told me it would be slow to heal, but maybe what he meant was that it would never heal. I try to be positive as the neurologist and internist fight over the diagnosis. Meanwhile, the neurontin helps and the pain killer (Ultrum) did nothing. Perhaps that proves something.