Thanks Miriam, that does help to know there are others like me. At first my Dr.'s thought I had small fiber neuropathy, but the skin biopsy was negative, so now they are just calling in neuropathic pain. I think a big part of me now doesn't care so much what they want to call it, I just hope to get better pain relief. Lyrica helps, but I'm still in alot of pain.

I am sorry you are in soo much pain. How are you now? It sounds like you could have rsd, reflex sympathetic dystrophy and/or thyroid issuesthat make your muscles screen with pain. Get on a gluten free diet and visit the rsd forum here in neurotalk. Try vitamin infusions live vitamin c iv's. That's what has helped me.

Good luck. Private message me if you are still in pain.

Thanks Jane,

I did ask my Dr. about RSD, and they say no, that is not it either. I have tried Gluten free diet, it didn't help either. Thyroid is normal too. I'm waiting until November, when I can have all my tests done again. I am seeing a pain specialist, but she says she has never seen anyone with my type of pain. I just started Low dose Naltrexone therapy. So far its not helping.

I just became part of this support group. It's a year after you first posted. I hope you have found something that gives you relief. I had the same symptoms starting a year ago myself. I have since learned that my docs went through a protocol of prescribing pain relief medication based on least likely to cause addition to probably cause at least some short term addition. That is also least effective to most effective. My neurologist told me repeatedly that Oxycontin was not effective for nerve pain. So do the pain specialist. It worked for me!!! What I take now is Lyrica 200 times twice, Cymbalta, and the oxy times two. No pain to speak of and I am fully functional.
Everyone is different though. You need to find the combination that works for you.

My experience is that docs and patients don't always have the same agenda. Mine, but not theirs, was pain relief first, cause second.

Everyone, including the Mayo Clinic, was confounded by my symptoms as they are yours. If it is not textbook symptoms they tend to call it idiopathic. I hope you findbthe cause and get relief.

I too am new to this thread. I have nerve pain throughout my body, its severity varies from minor to moderate. I also have problems with severe anxiety so whatever it is seems to have really compromised my nervous system. I've been this way for 10 years. I suffered the first 5 years with just ibuprofen. The last 5 years I've been on Lexapro, it has helped the anxiety but not the pain so much.

My GP has run a lot of blood work since 2001 when the symptoms started. I've had CBC, metabolic panel, calcium, heavy metals, CPK, Lipase, ANA, thyroid panel, Lyme, VIT D 25 OH, cortisol, urine tests for metanephrines & catecholamines, lipid panel, liver enzymes, liver and thyroid ultrasounds, abdominal CT, head MRI, electromylogram w/nerve velocity testing.. and probably a dozen more than I forgot to list. They're all normal. I am happy that everything looks good, but disappointed at the same time since I've suffered many years. My GP has all but given up on running any more tests.

I've seen 4 neurologists, even the head of neurology here at Ohio State University who said he'd never seen anything like it before. Neuropathies present with weakness and/or sensory distortions (numbness, etc). I can feel everything fine, I just have widespread pain.

I started a gluten-free diet about 5 days ago and will stick with it for 6 months and see if there is any improvement.

I'm new here too, and can relate to so many who have posted in this thread.

I've been experiencing what doctors tell me is "neurological pain" for about 2 years (along with a host of other symptoms) with no identified cause. My bloodwork always comes back normal so doctors tell me that I'm just depressed. The only neurologist I went to looked at my reflexes (which were fine) and prescribed me anti-depressants. I used to resist this conclusion because I was never depressed before my health started to decline, but now I'm tired of looking for answers and never finding any.

I'm only 21 and I feel like every day it gets a little bit worse. If it continues like this I don't see much of a future for myself.

I've tried flexeril and cymbalta and both made me violently sick. The only relief I have is pot and that doesn't do well for my fatigue. The only thing that's really helped me was vitamin D and melatonin.

Living with unidentified pain is tough. I hope everyone here finds some answers.

Its been a year and 4 months since I started with my all over body neuropathic pain. I still have no diagnosis. I just ran a bunch of tests again, still nothing. I'm taking Lyrica 275 mg. a day and Elavil 40 mg. a day. It helps but I'm still in alot of pain. My pain Dr. said she does not think Strong Opiates will work for my neuropathic pain. She is now talking about referring me for Ketamine infusions. I have a poor quality of life and I try to stay strong for my family. Just feel so frustrated at how hard it is to get good pain management.

I always find it disheartening when I hear someone is in neuropathic pain and is told that opiates and other strong pain relievers do not work for their type pain. My neurologist held that opinion until proved wrong. Fortunately my PCP prescribed Oxycodone when the usual drugs for neuropathic pain ( entire body) gave only partial relief. At one point I was on 40mg times twice a day. Now I am down to only 10mg twice a day. Because I do not like the idea of being on a potentially addictive drug, I have attempted four times in the last six months to stop taking the Oxycodone. Each time the neuropathic pain increases to the point that I am in bearable, but constant, pain. Each time I have gone back on the Oxycodone and the pain recedes. I have reached the point that I have accepted and am willing to live with the potential addictive quality of the drug in return for a more normal quality of life. I have no doubt that most Drs. Feel they are doing what is best for their patients by not prescribing things like Oxycodone on a long term basis. However, they do a disservice by leaving their patients in pain when there is a possibility of relief. It is a mindset I have found with many Drs. That is difficult to change. Hope you find something that works for you.

That potential, among chronic pain patients with no prior histories of substance abuse or psychological problems, is actually very small, but due to the fear-mongering sensationalism of media and politics, most people have been made unduly afraid.

What's more, if that very small portion of patients don't manifest symptoms of addiction within a very short time, the chances of their becoming addicted in the future is virtually nil. Chronic pain patients don't just suddenly become addicts.

Most doctors know this, and would rather prescribe appropriately for their patients pain, reduce their sense of suffering, and improve their quality of life. But the doctors have been made victims of this same ignorance and insanity about pain and pain medications.

Google: politics of pain

http://www.chronicpainrevolutions.co...ic-pain/75.htm

http://www.health.com/health/conditi...9482_1,00.html

(and many, many more...)

Doc

I am sorry you are in so much pain. Two things I want to say. I have NP in my ankles, opiates do work for NP. You should be allowed to try one, as your quality of life is being effected so badly. Also I have had two ketamine infusions in my spine, and they did give me some relief from my cervical spine issues. If you do not get this pain physician to help you better, get another opinion. I know many people on this site who do get some kind of relief with medicines. All protocals should be tried to get you in a position where you have a better quality of life. I so wish you all the best, and i hope a speedy solution can be found for you.