Kai,
I'miss sorry to tell you that this has been a very slow site for quite a while.
I believe there are some active Chronic Pain sites on FB.

I'm so sorry for your pain.
Believe me, there are many of us that have been through months, sometimes years, of searching for answers and help.

Don'the give up.
You are not alone.
Hugs
JC

Sorry for the mistypes. Rough morning.

Thank you so much jayceee I will try facebook.

I wanted to reply but it's been so many years since I had a baby I hoped someone with more recent experience would comment. But I think my nerve problems first started after I had my son and a long labor then epidural-C-section. I developed sciatica but had numerous aches and pains and a numb left foot for a long time. They gave out valium for nerve spasms then, and that helped.

I hope you feel better soon.

What your experiencing and the type of symptoms you talk about sound like problems in your Sensory Nerves. Sensory Nerve Damage or otherwise known as Peripheral Neuropathy is generally caused by a Virus; an autoimmune virus such as Guillain-Barré syndrome or Multiple Sclerosis; Motor Neuron Disease such as Lou Gehrigs Disease; Infectious Disease such as Lyme, Herpes or Hep C.; it can also be caused by severe Nutritional Deficiencies, mainly B6 and B12.

Newer tests and ones you've not had would be a "skin biopsy" where Dr.'s can measure the density of nerve fibers in the area of skin is measured. In Peripheral Neuropathy, the density of the Peripheral Nerves is reduced. This test is also used to monitor progression of Neuropathy and response to treatment. Another test would be a Nerve Biopsy, a small sample is taken and evaluated for damage or disease. Have your Dr.'s ever done a Nerve Conduction Study, which is different than an EMG.

This a lot of info. to throw out, but that's what I do, I research it and find as much info as I can. Has your Dr.'s tested you for any of the diseases or viruses listed? Peripheral Neuropathy doesn't just start for no reason, something is causing it, and the fact that it's all over your body points more towards some type of virus. I'd ask to be tested for any/all of those tests that you can be tested for. Some there are no tests for, a Diagnosis comes from eliminating symptoms and other negative tests until you get to the right one. I would also focus on seeing a Neurologist, he's going to be your best shot at figuring out what is happening to your sensory nerves. If he's not willing to help anymore, I'd get a new Neuro and get some testing done.

And not that it helps but I know this is not in your head. I have Peripheral Neuropathy, half the time my feet sting and needleprick so bad, I bang them on the floor to make it stop....at times my legs go completely dead from the knees down, and the little sharp stings, they feel like bee stings, I'll be sitting on the couch writing or drawing and it will feel like a bee has stung me, hurts like hell and of course there's no bee there, its just the screwed up nerves. Mine is only in my legs and hands, I can't imagine how maddening it would be if my whole body were to feel like it.

Take care,

And the Chronic Pain boards on FB are listed as Closed Groups, unless a select few have created one with a different type of name.

I don'the know any specifics of the FB groups. ( Haven'the joined a CP group there).
But, for ' closed' Caregivers of Stroke Survivors groups.. you just request to join.

Kai, doesn'the mean you can'tell stilll try to get help here, too.

Complex Regional pain Disorder. Your pain sounds exactly like mine. It took time for a name for my pain. Mine was brought on from a surgery for Thoracic Outlet Syndrome. Something so dumb like a kink in the artery of my shoulder. I have been living with this for 7 years.

Hi. I am sorry for all of the pain you are going through. Life with chronic pain sucks....I know personally. Keep in mind that one of the side effects of Lyrica is depression and suicidal thoughts. I can't take the stuff. If you would, just for my piece of mind, do some research on the drug so that you are informed. Actually any drug that you take. Drugs.com is a good place to get all the info you need, make up a med list, and check for interactions with other meds. Prayers being sent.

Hi. I have nerve damage too and have similar pain and sensations you describe so I know how you feel. Have you ever been to a Pain Management Specialist or clinic? I went to one for a few years and he had me try a lot of different types and combos of medications until I found one that helped ease some of the severe stabbing pains. It was hard trying different ones that either did nothing at all or had shocking side effects but it ended up worth it in the long run. Good luck with getting a diagnosis, I really hope you eventually find a doc who can help. Take care.

Yes, the worst part of it all is appearing to be normal. Unless you are screaming out in pain no one believes u. Many prayers being sent and much love. Keep coming back.

It's odd that even pain docs sometimes allow themselves to be fooled by how a person looks. Even before I had a pain problem, I knew that one can't judge how another person is feeling by how they look. It's a rookie mistake that somehow gets overlooked by many professionals.

I find that "pain deniers" are one of the most taxing things I have to deal with. I enjoyed a very slight improvement over the Summer due to some expensive treatments from far away that I dc'd in August. But, even the slight improvement kicked me back over the line from constantly so miserable I'd prefer death to constantly miserable, but happier, again. I was nonplussed to note that even my very supportive GP seemed moderately surprised that I didn't seem depressed, and that it was, actually, just as I've been saying, that the pain makes me exhausted and sick - I'm not clinically depressed. If I were, I would experience symptoms of depression independent of my pain level. Instead, the two things are 100% correlated. She'd fallen prey to the prevailing misconception that the emotional aspect of chronic pain symptoms somehow equals clinical depression. Chronic pain can exacerbate pre-existing clinical depression; but feelings of sadness and hopelessness, as well as a loss of a feeling of vitality are normal responses to chronic pain in a mentally healthy individual. Assuming that pain causes depression across the board, in every, or even most cases, is wrong-headed and leads to abuse of patients (by denying their ability to accurately notice and describe their subjective experience, something that is understood to be a mistake in other realms, such as sexual abuse), as well as leads professionals to redirect their efforts away from what is needed to useless wastes of time (something many of us have experienced) via misdiagnoses and unhelpful treatments.

Not sure if your still hanging around or not....but, has anyone looked at the possibility of nerve damage during your son's birth? This started not too long afterwards and its not unheard of for things to get screwed up during labor. This just sticks in my head, nerve pain is hard to diagnose and narcotics don't really do much for nerve pain...but if this were related to the birth, they might be able to concentrate a more specific search.