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.

--may be due to cervical spine damage that might have well occurred in the fall. The distribution of symptoms seems to match up pretty well with cervical disc herniations or even frank cervical fracture pressing on the nerve roots and causing damage to axons into shoulder/arms/hands. What did the MRI show? Was the skin punch biopsy done only at the thigh and calf, or was an above elbow site included--in other words, according to what was the determination of small fiber neuropathy made? Do you have copies of your test results (you should) to share with us?

Since CRPS/RSD can also involve damage or destruction of axonal nerve fibers you might be"co-morbid" with damage stemming from multiple conditions. I am also interested in that you are indicating a first appointment with a neurologist now--it would seem with all this you should have been referred to one a long time ago . . .

In any case, I think your questions should involve how were your diagnoses arrived at, and is further testing indicated to try to find causes. Both impact upon possible treatment, whether that would be mostly symptomatic or aimed at a specific cause (again, you don't mention if you've had any treatment for any of this in the past).

In the meantime, do look through some of the material at the top of this board under the "Useful websites" area, which has a lot of links to databases that provide information about various neuropathy causes and presentations. Particularly, check out the Washington University neuromuscular database, written in doctor shorthand but very comprehensive:


Small Fiber Sensory

Pain Differential Diagnosis

Local cervical lesions

Welcome to the board...there is great knowledge and support here as you can see from Glenn's post.

My heart goes out to you with having to deal with nerve damage and care for a 21 month old...I have a 6 year old and it is a challenge at times but also a wonderful blessing that I try to focus on.

Anyway...I do not know much about CRPS but I found a website that seems to have some great info @ American RSDHope - American RSDHope Organization, How to contact us, You may have already been there but it should help develop some knowledge and questions regarding some of your issues.

But like Glenn said...first make sure of a diagnosis and then find a good therapeutic path forward...find the target first before shooting the arrow.

Sven

Thanks Sven...I appreciate that. I am familiar with the links you posted but appreciate the thought. I have actually been a pretty active member on the Neurotalk RSD forum since my diagnosis of RSD...I have found that the people on Neurotalk are very supportive and very helpful. I try to be one of the helpful and knowledgeable people on the RSD forum sharing my experiences, thoughts, and support...but with small fiber neuropathy I am again the newbie in need of assistance. Thank you for your post...you are both right that I need a confirmation of diagnosis before I get too far ahead of myself. After 10...almost 11 months 0f this I am just in that, "Okay...so now that we know this...how to I get my life back?" phase.

it might help to make a sort of timeline post on when you developed rsd and from what and when you developed sfn and anything relevant in between. i found it very hard to follow the timeline of your first post and to me at least i thought your rsd was from you fall last year, until the last post i read from you.

Gotchya...that's my fault for trying to give a short version...after 7 years the history gets very long and convoluted and I never know sometimes if it's better to just get to the point of the current stuff or give the long epic saga that has been my journey with RSD and now this latest fall off a ladder.

Thanks...I will definitely check those out. Also thank you for the suggestions on questions to ask...that helps a lot.

As for my MRI...the shoulder one was normal and the only thing the MRI of the cervical spine showed was indication of tendinitis. MRI for cervical spine was done in May and MRI for shoulder was done in January.

The skin punch biopsy was done in my left arm at a site above the elbow and one below...took me 4 weeks to heal from that and those areas are still tender...the joys of RSD.

My EMG was normal. The only thing besides the skin punch biopsy that was abnormal was the ultrasound I had done on my left shoulder. The dr couldn't see something he was looking for and the muscle wasn't moving correctly...but both of these things were dismissed after the MRI results came back.

I did see a neurologist way back when...5 years ago I think...for the RSD. He was not helpful at all...just one dr in the string of doctors I saw who referred me somewhere else until I eventually ended up with a doctor who wanted to actually help me achieve my goal of functioning again and getting back to work. She is the one that diagnosed the serotonin syndrome and helped me get off all med. She got me the in home physical therapy that got me on my feet and ordered the TENS unit for me. She is the one who helped me with tDCS treatments. So once I was off all meds and able to return to work and life in general with just the use of a walker...I didn't really need anything else from doctors and specialists. I just lived with the pain every day, had great coping mechanisms, things I did every day to keep the pain levels lower, changed my diet to help with inflammation, etc. Honestly...going through the process of getting the RSD diagnosis and then going through the process of what happened after it spread and string of either incompetent, lazy, or uncaring doctors...I very much lost my faith in the medical community in general.

Unfortunately this fall off the ladder has changed everything and I need to see these specialists. The pain dr really seems to know his stuff and actually has given me hope that I may actually get some pain relief. This process has not exactly restored my faith in doctors but hopefully the neurologist the pain dr referred me to is going to be just as helpful.

My response is in regards to meds (which I realize you want to get off of). However, I've used amitriptyline for both CRPS and SFN and wonder if you've tried it at any point? I had SFN in my feet for a year starting in 2005; then the following year developed CRPS resulting from thumb surgery. (Fortunately I recovered from that in 9 months with lots of hand therapy). For the CRPS I took 75 mg. amitriptyline divided through the day, and for the SFN which has returned, I take a single dose of 60 mg. before bed time. The only significant side effect has been dry mouth. It definitely helped with the CRPS pain. I don't think it helps with my SFN pain, but my pain is mainly at night and the amitriptyline does help me get to sleep and stay asleep. This and medical marijuana have allowed me to avoid having to try any other meds which I fear would have worse side effects. Good luck with finding answers and relief.

Thank you so much for your reply! I did take Amitriptyline for about 6-7 months at one point for my CRPS when I wasn't sleeping at all (like no more than 15 minutes at a stretch because the pain was so bad) and it helped me sleep and I was consistently getting 3 consecutive hours with that. It unfortunately did not do much to help with my pain levels...but I know for a fact that when I am better rested that I can cope with the pain much better. I was able to get off of that after doing tDCS treatments which helped me get 6-8 hours of sleep a night without meds. Now with this new stuff after my fall that all went to heck...but they have me on Tizanidine which is helping me get 4-6 hours of sleep a night and I am grateful for that.

Thanks again for your reply and your insight into this issue!