I am reaching out for much needed information. After spending hours researching anything that closely resembled my situation, I am now more confused and scared!
Over the summer, I developed a mortons neuroma in my left foot (I suspect I have one in my right foot as well). It became somewhat painful and I consulted with a podiatrist in September/mid to end of September and she gave me two cortisone injections. Within a week of the 2nd injection, I started to get a burning sensation. By the end of October, I had severe burning, tingling, foot feeling cold than hot, intermittent numbnesses, skin color changes etc which than spread to the other foot. Podiatrist than said it was pain out of proportion and dxd CRPS. I started seeing a PM doctor who started me on gabapentin 1200 mg per day and he will start sympathetic nerve blocks this Wednesday.
The PM doctor feels confident that this is treatable because the diagnosis was made early. However, these are my concerns:
I am not sure if I have CRPS 1 or CRPS 2? PM didn't say either way but if this involves a nerve in my foot (Podiatrist said it was very small??) wouldn't it be CRPS 2? From what I read in this forum, than no matter what treatment I get for my feet the pain will not go away or lessen unless the mortons neuroma is addressed?
I really am desperate for any input/suggestions about my situation.
I had to go on a leave of absence from work because the burning(Which is only on the bottom of my feet) became so severe and I found it hard to actually put any pressure on my feet. The bottoms of my feet just burn 24/7,

Hi Sophie and Welcome,

I am so sorry for what you're going through. We all know how frightening this can be. But you are not alone and there are definitely reasons for hope. The majority of people with CRPS (80% according to Cleveland Clinic's Dr. Michael Stanton Hicks) improve over time.

Treatment for either CRPS 1 or 2 will be very similar; pain control, exercise, PT, anti-oxidents, stress reduction etc. Though a nerve injury can have its own set of issues and be a complicating factor there is still potential for healing. I had a severe, complicated nerve injury (worst kind possible) and had to have a repair so we know that I have CRPS 2. That said my symptoms are improved and under control with ongoing treatment. Recovery was slow and took a lot of aqua therapy and gradual weightbearing but I am able to walk and do what I need each day.

My best advice is to be cautious about any nerve destroying interventions in your foot. Phenol injections for Morton's neuroma can make things worse. Surgery, if ever pursued would be best done by someone with peripheral nerve training so they know how to handle the nerve properly to prevent a true neuroma from forming. Could you have damage to the nerve from your injections? It is possible but risks for this are lower if your injections were ultrasound guided. That interdigital nerve is small as your podiatrist said but even CRPS 1 appears to have damage to the small fibers in the skin of some CRPS patients according to Dr. Louise Oaklander. I would try not to worry too much about that at this point. If it makes you feel better you could ask for an ultrasound of that nerve which would show swelling or constriction. If your podiatrist hasn't done much of that a Physical Medicine doctor who treats Morton's could take a look. The pain in your other foot could be mirror pain, something I had originally that was not true CRPS but pain jumping across the spinal cord from pain being very intense. Mine resolved as I got better.

Nerves can be really fussy. If you are having even minor swelling in your feet now that could be contributing to aggravation of the nerve which can accumulate fluid and swelling itself. Any recommendation they have for footwear may be helpful and will be conservative treatment for the neuroma. Offloading pressure and also providing adequate support to give a little space between the toes are good strategies. Make sure you have an adequately large toe box. Try toe spreaders for short periods when off your feet. Get in a pool and swim. It will help your circulation and swelling while starting imperative exercise. You might also try a round of oral steroids which are recommended as an early treatment and can break the inflammatory cycle that gets CRPS going.

Hang in there and try not to stress too hard. I know it's easier said than done. But you beat this beast once before and we're all hoping you're going to beat again!

Sending hugs and healing love,

CRPS 1 is without nerve damage or RSD; CRPS 2 is with nerve damage (causalgia).

Ask your PM doctor for more information. A podriatist can only do so much. Ask for referrals to pain management. In my country pain clinics know the most about CRPS (treat it all round, not just the pain).

I wish you all the best for your upcoming appointment. Keep us posted.

It is a journey, has been for all of us. Good luck!

THank you Littlepaw for your words of encouragement! I am in such a bad place right now and it happened so quickly...I don't even recognize myself right now...I look in the mirror and I look hollow and empty. I know this will pass at some point though!

Thank you Marleen for your post! I don't feel so alone now! Not a good time for me right now and your response meant a lot.

We're all in this together. So many RSD patients out there. I hope you get the best care.

Good luck for your appointment tomorrow.

thank you Marleen

SHould I talk to my PM doctor about the MN? I told him about it at our first meeting but he didn't see to concerned about it. Or should I wait and see how I respond to the sympathetic nerve block on Wednesday and the gabapentin? I will search the threads again about blocks but I did watch (forget his name-Dr chop raps video) and he said nerve blocks really don't help. I just have this nagging feeling that my left foot/mortons neuroma is coming into play in all of this or it could have been the cortisone shots. All I know is that it is creating a lot of painful burning

Sophie, I really feel your emotional pain right now. I have a tendency to worry and stress out over the decisions that need to be made regarding treatments. Stress overload tends to worsen our pain. I try to deal with it using mindfulness exercises and by preparing in writing every question or comment I have to address with my doctor(s).


"SHould I talk to my PM doctor about the MN? I told him about it at our first meeting but he didn't see to concerned about it. Or should I wait and see how I respond to the sympathetic nerve block on Wednesday and the gabapentin? I will search the threads again about blocks but I did watch (forget his name-Dr chop raps video) and he said nerve blocks really don't help. I just have this nagging feeling that my left foot/mortons neuroma is coming into play in all of this or it could have been the cortisone shots. All I know is that it is creating a lot of painful burning"

I believe you should address all of these issues with your doctor. Whether you do that before or after your nerve block is up to you. If I am not mistaken, you had nerve blocks with your first encounter with CRPS and you eventually went into remission. Be prepared with a written list and listen closely to the doctor's responses. Leaving issues unspoken will only add to your stress.

Try to think positively. You went into remission before and you can do it again!

I will keep you in my thoughts and prayers. Remember we are here for you and care.

Shay

THank you Shay ! I am trying to stay positive however my fear gets the worst of me! I know I went into remission once. I had basically forgotten what that whole experience felt like but wow it's pretty much the same thing with the exception thAt I could at least walk! I think that not being able to walk, stand for more than 5 mins or wear any kind of shoe has kind of sent me over the edge! I'm holding on and glad that I found this site!!!!
These kind of sites were not around when I first got RSD! Thank you again