You have got to stop and give yourself enormous credit for all the things you are doing. Working and taking care of a baby while trying to cope with painful and scary symptoms are more than most people could handle!
I hope that you are able to get a referral for pain management quickly as I firmly believe that there is a medication or combination of medications that will help you.
Many of us do have incurable and progressive neuropathies,but do not assume yet that you fall into this camp. You are younger than most of us and your symptoms came on quickly, so hopefully they will be able to treat not only your pain but your symptoms.
Large fiber neuropathy doesn't usually come on suddenly, it is a long term process usually accompanied by muscle weakness. I have both SFN and LFN but mine is hereditary. It will show up on and EMG/NCS.
It is really inadequate to say this to someone who is suffering as much as you are, but I do believe things will improve. You will eventually find a doctor who can help you regain a decent quality of life. Keep that in mind.
Everything seems so trite, but if there is any indulgence that makes you feel a little better, starbucks, good chocolate, really soft lounge clothes, this is a good time to treat yourself. Every day is a victory right now.
We aren't all zen masters who have managed to conquer our pain, we are just far enough along on this path to have some idea of what is going on and what helps. You will get there too.

Hi canagirl
I've been following some of your posts and have a general idea of what you're going through - sorry if I mess up on the details - insomnia last night makes for a fuzzy brain in the morning.
I understand your urgent need to relieve the pain and find answers. Your mind and body are in shock from changing from being a normal functioning person to this 'new you' which you find unacceptable, intolerable and down-right frustrating.
Five years ago, (after 10+ years of mis-diagnosis) I was given a diagnosis of a life-long auto-immune condition and was told "There is no cure - you have to learn to manage it". One of the important things that helped me was to learn to 'stop being so hard on myself'. I had to stop mentally berating myself for all things I was no longer able to do. It helps to remember to 'be kind to yourself'. I often say these 2 things when I'm going thru a tough moment. Another one which I use is 'time for a break' when I find myself over-doing things.
Consider yourself a step ahead for finding the Neurotalk website early on - it took me over 4 years - this network has helped me to manage my search and hopefully soon a diagnosis and treatment for another secondary condition which is developing.

Re your questions on pain management I came across a link by another poster earlier this morning about a useful neuro website about pain treatment. If I remember correctly it mentions that an expectation of a reduction in pain, with medication treatment, of about 30% is normal. I haven't been able to refind the post but did bookmark the site. Here's the link:

http://myelitis.org/symptoms-conditi...ropathic-pain/

Hope this helps. Stay strong in your search canagirl.

Canagirl,

Quote
"Anyway, I wanted to ask you a question about the infusion. If it works so well why doesn't everybody do it? are there long term consequences? do people become addicted? Does it stop working after "x" amount of years? Why don't u do a ketamine infusion too? why are u taking oral ketamine?"

I do not know why the Lidocaine (and Phenytoin is another) Infusions are so popular and successful here. There have been Posters from the States treated and benefitting, and all of the literature and research comes from there. There is a fair amount about usage in treatment of SFN.

There are no addiction issues, if the IV rate is too fast it can cause heart damage. I had to take a break when I had a heart attack (unrelated), but was cleared by my Consultant Cardiologist to resume 3 months later. Those 3 months were excruciating. Relief hasn't diminished after 8 years, although dosage has gone up as my weight has increased.

I don't have Ketamine Infusions simply because my PM Team don't do them and I would have to be driven way too far out of my area to benefit from getting them. The Oral Ketamine keeps me ticking over and I have dosage/timing leeway of a reasonable amount so I can target flares, having to go out, sleep…

Dave.