I was recently diagnosed with small fiber neuropathy based on a skin punch biopsy and pin prick tests. Sorry this is so long...I tried to make my long and complicated history as short as possible here.

I have reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome type 1 (CRPS). I have that in my left leg and entire upper body from my waist to my neck, including both arms and hands. I was using a walker to help with balance and pain (and to have a seat always near by to rest). Back in October...I fell off the top of a 10 ft ladder at work, landed on some metal bars, which then collapsed and I fell to the floor. My left arm (the one that was reaching for something) got stuck momentarily while I fell which turned me from falling sideways to falling on my back. Ever since then I have had severe pain in my left arm, shoulder, and neck along with numbness, tingling, and electrical type pain...as well as a ripping/tearing pain in the back portion of my shoulder along the scapula. After 10 months of various doctors, MRIs, EMG, physical evaluations, and now the skin punch biopsy...I have been diagnosed with SFN...either caused by the trauma of the fall or aggravated by it.

I have my first appointment with a neurologist coming up soon (my pain doctor referred me to her and also wrote an order for blood work to test for other causes of SFN so that I will have those results when I go in).

So my question for you guys is: What sort of questions should I have for this neurologist?

I've learned a lot about RSD as time went on and it's one of those situations where I wish I had known at the start what questions to ask and what things to be wary of (red flags that maybe the doctor doesn't know as much as they think they do). I feel like having RSD really complicates things. I really would rather not take daily meds...I was off all meds prior to this accident and now I am taking Lyrica, Tizanidine (for sleep...I was only getting 1-2 hours of sleep without it), Meloxicam, and have lidocaine patches. I honestly want to get off all of those as soon as possible...but unfortunately I just wasn't able to function before. Except for the Tizanidine helping with the sleeping...I haven't noticed a difference in the pain levels from these other meds. I was previously on Neurontin for the RSD and it had ZERO impact on my pain levels...much less than Lyrica (which I was previously on but came off of after a bad case of serotonin syndrome when I went off all meds and then stayed off all meds)...though now I don't notice any help from Lyrica either.

I have a 21 month old daughter who was 10 months old when this all started...my main priority is getting myself to a point where I can function as normally as possible so that I can take care of her, go out and do things with her, play with her more, etc.

I want to be prepared when I go in to see the neurologist...but I frankly don't know where to start. I don't have any information regarding my skin punch biopsy results other than that they confirm a SFN diagnosis.

Thanks for reading and any insight or suggestions would be greatly appreciated.