Dave,
I was already diagnosed with depression before I was diagnosed with RSD, and had been taking prozac for almost a year. It worked great for me. However i feel i may need to up the dose now that I have this new disease. I have been looking for a psychiatrist, but have been unable to find one. I have a hard time believing that talking will help me.

Therapists use many different modalities. I also felt talking wouldn't help me. I could talk circles around this all day and not really process it. My therapist was certified in EMDR (eye movement desensitization reprocessing) and hypnosis. Her certifications were listed in her Psychology Today profile. The EMDR was amazing, really helpful with moving through the trauma of repeat surgeries, life change and constant pain, as well as 'unsticking' some unhealthy belief patterns I picked up ie: I'm a burden or for you - I am weak.
Both these modalities bypass cognition and sneak in at a different level. Very effective. Hypnosis was good for maintaining calm in the storm. I had felt very depressed and anxious, this lifted pretty quickly with help.

Get support if you feel inclined to at all. There's no reason to go through this alone if you can avoid it!

This. All of this. I have powerfully felt all of these things. I am so very sorry you are going through this. You are not alone. There may be a way to get back pieces of your old self or to come to terms with a new self. I see both an acupuncturist and a therapist and it has really helped me cope. I appauld you for seeking out those resources. There are acupuncturists who help you work through the emotional as well as the physical - mine does. Where I get therapy, they also have peer support. It has been wonderful to have someone to talk to who isn't a friend and isn't a therapist. Maybe you can see if there is something like that for you where you are. Or a group might be helpful. I am doing art therapy and while it has it's ups and downs, it's helped me work on things I've had a hard time voicing or even understanding. I've also begun doing restorative yoga (you lie in poses for 20 minutes - entirely non-weight bearing) and it was the first thing besides medication that moved the pain down a notch for me. Therapeutic yoga is also a nice option - it's essentially stretching. Really any stretching helps, even though it can hurt in the moment. Meditation and mindfulness have really helped me live more in the present and not think about the past or worry about the future. That may be of interest at some point.

I do hope you find support. You are always welcome to PM me. I, like so many others here, understand the struggles of dealing with this condition. Thank you so much for reaching out and sharing your journey with us.

Hello Everyone,
This is my first post. The first real almost diagnosis of me having CRPS was just last Friday at a (new) rheumatoligist's. I am not even certain that I have it. But after reading some of these boards, and especially the "shocked" thread, it is just hitting me that others also have these odd compilations of symptoms. I'll give a brief background, but want to ask others this:do you experience episodes of flare ups and remissions? I feel a lot better today than I did three days ago. Some days, I am on my side in bed writhing in pain, and today, (with moderate pain) I went out to dinner with hubbie. Is this what you also experience?
For some background, I have been an avid mid-distance runner all my life. About three years ago, I had to stop running from the feet pain. Two years ago, I had to stop walking from the pain in my feet. I went to my PCP and started Vicodin. It helped, but I still could not go for an exercise walk. I was referred to a pain specialist and a rheumatologist. I have finally settled on a pain guy and just found a new rheumy who seems knowledgeable. Now, about two years later, after many bone scans, MRI's, x-Rays, and blood tests, my rheumy (who I just saw once and see again next Friday) has suggested I may have CRPS. I have a lot of bone issues that appear in the scans, but he seemed to think I have CRPS. It may have been because I asked him enthusiastically to be very careful when examining my feet. I was at about a 9 pain level when I hobbled into his office to see him because my pain medication was done working and i was late in taking my regular dose. He is running some blood tests for Lyme, Lupus, and other little delights, but he clearly thinks I have CRPS. He told me to sign up for Ketamine therapy asap and to look into Calmare. He said he had just seen a woman with my similar situation, but using a walker. He said she had the most substantial turn-around of her situation he had ever seen. He said last time he saw her, she was pain free and walking fine. At that point, I did not know what CRPS was. But since looking it up, I started to do as the doc suggested. I am signed up for the first available Ketonine therapy (May 2016) and had scheduled for the Rutherford NJ Calmare therapy place. But after getting my first in a three part series of neuroma injections into my feet Wednesday, I am scheduled to meet with my podiatrist to get these neuromas surgically removed - permanently. I have read that any gains in relief for CRPS can be set back from procedures, so I am re-scheduling my Calmare for after surgery.
Ok. So that's my story. Geeze, sounds like a book! Well, I will keep everyone posted on how things go with getting the nerves out of my feet removed. It's just a consult with the surgeon Monday. But if all is well, I am going to go for it. I'd rather be numb on my toes than feel like I am walking with knives through my feet. Numb sounds nice. Has anyone else had their foot nerves surgically removed?
Thank you for reading my story. I hope each of you reading this has a restful night, without pain, and wakes to a happy, pain-free morning.
: )
~ Morgan

Welcome Morgan,

I am so sorry for what you are going through. I was a three mile a day kinda gal before my foot issues. It is so hard to lose the use of your feet. Before you have surgery on the nerves in your feet I have important questions. Is your podiatrist trained in how to work on nerves? Did they do a fellowship of some kind specifically for this? Are they a member of the Association of Extremity Nerve Surgeons?

The reason I ask is some people get worse with neuroma surgery. The technique can make a huge difference in whether you develop a true stump neuroma afterwards (you can anyway) which will be just as painful. Nerves must be handled in certain ways surgically for optimal outcome and to prevent or minimize new axon development. I have had nerve surgery and know well that sometimes it is necessary, but having the right practitioner makes a difference. There is much debate over Morton's "neuromas" and how best to treat them. A second opinion is always an option if you are unsure.

On surgery, 500mg Vit C a day is current ortho recommendation for CRPS prevention, 900mg neurontin pre-op helps prevent chronic pain, and the antibiotic minocycline attenuates glia to help avert chronic if used after surgery for a week. I Just posted some links in a response to the NEW to CRPS Ten year old thread. There is one of Dr. Pradeep Chopra. Lots of good info in there. Sorry I just got up and don't have the link in front of me...

Sending Healing Love, Littlepaw

Hi Littlepaw, thank you for the insight into treating the neuromas. I'll have to ask about that and I see this doc Monday.
Have you had any neuromas removed? I heard they can grow back, but I have not heard that they get worse. I guess with any surgery, it is the surgeon who is the most important factor, as you said.
I'm sorry to hear that you used to be a runner too. I feel like a dog looking out the window at a big lawn, but not allowed to go play on it when I see a nice trail for running. Have you found any substitute for it? I have an elliptical, but it is still too much for my feet. I will surely try again. And then again. Have you found anything that can be as good a cv workout without using feet?
I am still not believing this is what the issue is, being that there are so many issues found in the scans. But my foot pain may be exceeding what is normal for what they found in them. At what point do you know for sure that CRPS is what the issue is? Pain is so subjective. If you were a runner, you must have also had a very high pain tolerance. At what point did you know it was a pain disorder? I guess I just can't believe this.
Thank you for your insights!
To the 2 nurses, I feel for you! One of my very close friends is a nurse and is having some psych issues. She said that there is such a stigma associated with "those" patients that she is afraid that someone may find out at work. It is such a challenging career that being in pain through a shift is overwhelming. I hope you can find a type of nursing that does not require all the hard physical work that is normally demanded of you.
Have a nice Friday everyone. : )

Hi Morgan,

The trick with Morton's neuroma is that it is not really a neuroma but a fibrous thickening in response to compression. Cutting the nerve to remove them can cause a true neuroma to form in response to the injury. This can happen even with the best technique. The following link gives info on both so you can see what the potential is. It is from Washington Univeristy which has probably the best nerve program in the US.

http://nerve.wustl.edu/nd_neuroma.ph...erve_disorders

The potential to grow a true neuroma from the nerve trying to heal itself by sending out new axons is one of the reasons to avoid a cut-out procedure, that and you lose the fine innervation further down. Some surgeons treat this as a nerve decompression and release ligamentous restrictions on the area. Steroid Injections can shrink the morton's neuroma and atrophy some of the fibrous problem. Ultrasound guidance will give the best results. Phenol and other neurotoxic injections can cause other problems.

I would not give up on a treatable cause contributing to your pain syndrome. It sounds like you have reasons for your pain that can and should be addressed. You could have developed CRPS in response to the problems and it could improve with treatment of underlying pain contributors. Or it could stick around, Impossible to say. But CRPS is a diagnosis of exclusion. I think you have to treat what you can and see what remains. I appeared early on in my journey to have CRPs but it was a nerve entrapment and nerve injury resulting from an orthopedic surgery. I had a neuroma-in-continuity resulting from retractor damage that had to be resected. I was much better afterwards. My CRPS came after another procedure I sadly needed further down on the same foot some months later. Nerves had just been through too much. That was why it easy to tell for me. Symptoms were prety clear month out from my last procedure.

I spend a lot of time on the bike at the gym and a LOT of time in the pool. Aqua work is the best. There is also an elliptical called an Arctrainer which gives legwork but less ankle stress. I am so hapy to be off crutches and now walking a mile, I try not to stress about what I used to do. 8 miles of hardcore high incline/decline without blinking. Hiking was my real thing. Ah well, we have to adapt.

If you don't like what your podiatrist says get another opinion. Foot and ankle orthopedics is good. Physcial MEdicine, Rehabilitation guys sometimes do a lot of foot stuff. I see one who does running medicine, knows about Morton's. does ultrasound injections etc. Finish your shots before surgery, unless they're phenol...

You can find nerve savvy podiatrists herehttp://aens.us
Good luck and keep us posted.
Sending Healing Love, Littlepaw

Hi Littlepaw,
Thank you for the exercise ideas. The heated pool is always a great feeling thing, isn't it? I'm sorry you've been through so many surgeries. You must be so happy to not be using crutches anymore. I think it's great that you are walking a mile a day! It may not be the "crazy hike" thing you used to do ; ). But it is a lot to do on hurting feet.
Thank you for the neurosurgeon link. I think I just about passed out from the pics they have posted on their home page though! Sheesh! My foot doc is definitely not on there. I am just giving this podiatrist a second chance. The first visit, he just said, " I looked at your tests and I don't know". He barely even examined my feet! But the doc who does my ultrasound neuroma steroid injections said to try him again. She was incredulous that he was so dismissive as she believes he is the best. He seems like a clown to me. But he has a last chance Monday and hubby will be there. Sometimes, I find it helps to have a line-backer looking fellow with me ahem, "encouraging" the doc to do his best.
; ). I guess having dismissive docs who downplay the severity of the pain is common. Having someone there to testify to the disabling effects of the pain seems to help. Have you heard of this with other people or experienced it yourself?
I have to schedule the second in the 3-part series of foot injections. The first set have already decreased the pain to about a 7 and it was just Wednesday that I had them. They don't seem to be shrinking permanently, but seem to come back 4 months later with a vengeance. I am thinking of the permanent surgery because the pain of getting them done is intolerable. Spine injections, I don't even flinch. But these neuromas a whole different animal. Do you have ideas for other options to get rid of the neuroma pain (or Morton's non-neuroma)? I am fine with surgery that leaves me with no feeling in my toes. Any ideas would be great since you clearly have more knowledge that this clown, I mean, podiatrist, who I see Monday. If he has no idea again Monday, he gets fired. Ohhh! I'm feeling like Donald Trump! : )
Although I'm not running a mile today, i AM going to the rabbit shelter where I volunteer to help with today's fundraiser.
Thank you for telling me that you are active and still run. You have really helped to inspire me and to give me hope that I will do that again too. I really appreciate your support and sharing of your knowledge. You are a great help!
I hope you have a great day and a great run. It is beautiful here in PA and I hope you are also having fabulous spring weather!

hi Morgan,

Thanks for the kind words. I am staying active. I hope I didn't misrepresent though, I don't run anymore, my peripheral nerve and ortho surgeons don't want me to. I am trying to increase my walk length though. I am getting out for short hikes now, easy to do in the Austin area with all the hills and creeks here. I have recently been able to get down to the cove where my gym keeps its kayaks. They are on an old quarry lake and have SUP, too. Very cool and restorative to get out on the water again!

I am so glad your injections are US guided. I would hold off scheduling anything surgical until 30-45 days after the last set. The results may very well be cumulative. It is very important at this point that you offload that neuroma as much as possible to keep the nerve from getting irritated and swelling up again. You need a big toebox and possibly to do a cutout in your insert to take pressure off the area. Enna just told me about these cool running shoes called Altra which have an anatomical toebox. They hit the 150 price point retail but 6.pm.com had them way, way cheaper. I would also recommend trying some ttime out of shoes with a toe spreader to give some space in between your digits. See if that makes any difference.

I think it's always good to have backup during appointments. Getting your honey's take on the guy is good too. Go armed with questions about what exactly he plans to do and what the expected outcome is, chance of success and failure, how many of these he does a year, etc. Both feet at once, one at a time. Does he go from the top, cut the ligament, cut the nerve, what? Are there inherent biomechanics he thinks caused this and will it just come back?
You can never ask too many questions if you are trying to decide on a surgery or a surgeon! Trust your gut. You don't have to like the doctor but you do need to feel confident in him.

Do let us know what happens. I am rooting for you. determination and grit will get you through this. I am praying that your shots will make a difference and get you back to your life.

Have a beautiful weekend. I am sending Healing Love, Littlepaw

Hi Littlepaw,
Did you say kayak? Ohhhh! That sounds wonderful! What a great way to get your feet somewhat elevated and still get that awesome workout! Can I please join your gym? 😜. We do not have gyms here that offer that, but do have canoeing and kayaking on the Brandywine River here. How is hiking for you? Is it painful with each step? Or do you have it managed such that you feel it after the exercise? I want so much to be walking or hiking, but each step is an exercise in pain. If it is like that for you? How do you work through that?
Thank you for the link to the sneaker site. I am fine spending the money on shoes that will allow me to walk without pain, or at least reduce it. Are the sneakers you refer to the ones that look like each to is separate? I'm also not sure what a toe spreader is. I have my shoes so big so that there is a lot of room in the toe box. Any pressure on the foot causes pain. I have an extraordinarily high arch in my feet so that I am prone to issues if I don't get enough arch support. So it may be that I am predisposed to foot issues.
Do you or did you have neuromas too? You had surgery on your feet. Would you do that again, being that hind sight is 20/20? It had to be tough to be in crutches and stay off them after surgery. Did you actually do that? I am having trouble staying off mine. I always want to do stuff!
Thank you for your ideas on what to ask the doc tomorrow. I hope he has better insight this time.
I hope you are out and about, maybe on the water if you have good weather. I'll pretend I'm kayaking. : ). Have a great day, and I am saying prayers for your healing because miracles DO happen! : )