Confused and looking for guidance
 

Hello. I am reaching out for any suggestions thoughts etc.
At the end of August, I developed pain in my left foot primarily between the 3rd and 4th metatarsal. At the end of September, a podiatrist diagnosed mortons neuroma/overuse from walking after identifying an aggravated nerve by both touching it and by ultrasound and administered two cortisone injections(9/30&10/7) . After the 1st cortisone shot, I began to experience tingling, numbing and burning in the left foot which progressed to the right foot. By the end of October, both of my feet were red, burning and I could no longer wear shoes. My podiatrist told me this was pain out of proportion and dx'd complex regional pain syndrome and referred to a pain management doctor who also believed I had CRPS. During this time, I also started to notice tingling in my hands and arms. I told my PM doctor and he said CRPS doesn't spread in that pattern. In mid November, my hands were slightly red and sensitive. also over a few days I had tingling sensations in my upper torso and I now have some intermittent slight burning. My PM doctor said that once the gabapentin started working and my foot symptoms calmed down the rest of my symptoms should subside. At this point, I was concerned about the CRPS spreading so I met with a neurologist who had a lot of experience working with CRPS. He believes that I have small fiber neuropathy. he is ordering blood work including an Athena panel plus he is going to do a skin biopsy. He is also recommending a 10 day outpatient ketamine infusion with follow up boosters. He said regardless if my diagnosis is SFN or CRPS, the treatment would be the same. The treatment is going to cost $450.00 per day and it is not covered by insurance. he thinks it is being caused by an autoimmune condition, He asked about symptoms prior to the mortons neuroma, however I didn't have any symptoms at all. So I am now really confused by I font know if it is CRPS or SFN. Does anybody have experience with this or with ketamine infusions? Should I get a third opinion? Just not sure what to do? Thanks for reading!

Plus
 

I also have had CRPS in my lower extremity like 18 years ago which went into remission after a few years of high doses of neurontin. I also had Lyme disease 1o years ago that went into remission after 18 months of weekly bicillin injections.

Additional information
 

just wanted to add that I iced my feet 3x a day for a month. So I am wondering did I somehow damage the nerves in my feet which led to small fiber neuropathy?? And I have been prescribed so many medications! PM prescribed gabapentin 600 mg 4 x a day and nortriptyline 50 mg at night(he thinks it's CRPS) neurologist prescribed mexiletine 150 mg 2x a day and went to a psychiatrist because I was getting anxious/depressed with the CPRS dx and she prescribed nasal ketamine 3x a day, namenda 28 mg and low dose naltrexone 4.5 mg per day. SHe also said that she could treat my pain.

Please
 

Please help me get a handle on all of this!!!

Hi Sophie,

A percentage of CRPS patients have been found to have SFN. The research on this was done by Dr. Louise Oaklander from U Mass who purported that even CRPS 1 patients have nerve damage that wasn't showing on large fiber conduction tests. You won't be a freak case if you do indeed have both.

I am glad that you've found such a thorough neurologist. It is worth looking at autoimmune components as some CRPS is autoimmune driven and recent research on the use of IVIG was encouraging in the treatment of these cases. In the mean time you might consider oral steroids which are a frontline treatment for CRPS and would dampen down your immune system if it is driving this. standard dosing per studies is 10mg 3x daily for ten days. I had some improvement with this early on though I had to do two rounds of it to keep things calm.

I am a fan of ketamine infusions, having had a positive response to this myself. Not everyone responds to them but many people do. It is possible that infusions could be a real game changer for you as far as knocking the pain down and unwinding some of the cascade that happens in response to ongoing pain input. Ketamine is a powerful treatment for various causes of pain so I'd hope that even if it is autoimmune you could benefit from breaking the pain cycle some.

There are different protocols for ketamine, not all are 10 days. My own were done very differently, 2x a week at first then titrating down. I now just go for quarterly boosters. This served to make it more affordable, spreading them out and allowed us to monitor my response before committing to them. I pay $300 per infusion and I am in a major and expensive city to live in. You can call around to see if anyone is cheaper. I had to cold call clinics, as not all them have infusions listed as a treatment.

I hope you find what you need soon. Don't give up hope. My journey has been long but I am doing well. Early on I had mirror pain but that has resolved. I also had a lot of weird buzzing in other areas when my nerves were the most overloaded. I am praying for you and hoping thing settle for you soon.

Sending hugs and healing love, :hug:

Thank you
 

Thank you Little Paw for responding to my post(and all my other posts). These past 2.5 months have been hard especially since prior to October when all this started I was healthy(healthy diet and working out regularly)working FT in a job I loved and loving my family and friends. I should have stayed far away from the podiatrist that i used because all this started with the cortisone shots. The website for this doctor states stop foot pain fast..when I saw that I should have walked away! I don't know if I have crps or SFN? I hope somehow somebody figures out what is going on. I am going to pursue the ketamine infusions as I learned that they are covered by my insurance. What have I got to lose? The treatment protocol is 10 days and I believe a two day booster is done 2 weeks after the initial treatment. Thanks again!! I really do appreciate it!!

I had a similar experience. My neuropathy had an acute phase where it spread all over my body. My primary physician at the time first called it fibromyalgia, then CRPS....but really it was small and large fiber neuropathy.

Has your neurologist ordered a bone scan?

I wouldn't think that icing your feet caused this. You have torso burning which points to issues with the nerve roots in your spine.

Thank you
 

No he is going to do a skin test and he has also ordered blood work and Athena bloodwork. He is also recommending 10 day ketamine infusion

Question
 

What happened after your acute phase was over?
Is your current treatment helping you?