OMG Shay, you've had your fair share of it, haven't you! I'm so sorry to hear that it has spread. Spread in me too.

First from both knees, to both legs fully (disability) and then in 2008 it spread to my arms/hands/shoulders (for which the treatment still works thank God).

My legs are totaled I'm afraid.

So sorry to hear about all that spread. It is interesting that you said that the treatment still works for your arms/hands/shoulders. I have also found that the ketamine infusions wipe out the pain in the spread areas and keep it away for longer than in the original area.

Right now I am waiting for some gastro testing. My PM told me that it appears to be running the full body course. I feel that for the most part I have been fortunate. I can still walk and use all limbs. I really want to have this heartburn and slow movement of food checked out. I have had heartburn for many years, long before the CRPS, but it is more intense now. I am hoping for the least harmful of causes.

Lately it seems like there is always some health issue popping up. I think part of it is my age and not CRPS.

Wishing you a low/no pain day.

Shay

I fear there's been a little assuming done here. I don't get infusions for my arms/hands/shoulders, but something else entirely (calcitonin shots). It is *the* most well-known treatment for CRPS in Belgium for lower stages.

Sorry, I reread my post and realized how you might think I assumed that you were getting ketamine infusions. I didn't. I was just trying to say that my treatment which happens to be ketamine infusions also does a much better job on the spread areas than the original site. Sorry I wasn't clear and thank you for responding.


Shay

Oh okay, no biggie! I thought you had indeed assumed that. And I just didn't want to be forthright on the issue.

Hi. This is the first time I'm on one of these forums. After 4 years of suffering, I finally found a doctor who thinks he knows what's wrong with me.

It started when I wanted to lose weight and decided to do those Insanity videos in my basement. The problem was that I wasn't wearing any shoes, which is stupid, I know, but I didn't know any better. Insanity workouts involve high impact exercise, which means a lot of jumping up and down. One move I did was going into a plan or push up position, then clapping my hands together, then fall back on my hands, if that makes sense! ha. really good for me. One day I noticed swelling in my ankle and tried resting it and stopped exercising.

Here's the worst part, I didn't go to the doctor. I have no idea why. I was lazy, depressed, and to overwhelmed to take care of myself (this is true in many areas of my health). Eventually I see a couple of physical therapists and a foot and knee surgeon. All diagnose me with tendonitis but I can tell they're really confused and not confident with that. They were shocked by my symptoms.

So that brings me to what I've been experiencing. My left foot has changed permanently. It is always a little puffy in the area below the toes and around my ankle. I feel soreness in my foot, ankle, and calf. I get aching pain and my feet kill me after walking for a bit, even with comfortable sneakers on. When my feet are elevated for a long time, they look pretty normal (only if you look closely will you see that the left is a little big), but when I'm sitting for a long time or I walk in flat shoes, they swell big time, especially my left foot. Wearing sneakers or boots do a good job of compressing the foot and swelling is minimal. Worst symptom of all has been the foot dragging and swinging out, which causes me to bump into things. I trip up the stairs and I think I have some sort of foot drop. Last winter I was walking and all of a sudden I realized I was falling. I didn't trip over anything, just fell forward. I'm also pretty vain about this stuff. As a young woman, it's pretty devastating when you have ankles that swell like crazy. I look like an old lady with edema in her legs due to old age. Really attractive. Now I'm noticing the same symptoms in my right foot and in my hands. I've been really clumsy dropping things and such.

I can't tell you the cycle I've gone through, giving up and then thinking, "There has to be a reason for all of this. What's the cause?" A couple of weeks ago I went to the doctor and laid out all my symptoms online (with Zocdoc). I wanted him to have a diagnosis by the time I got there. He told me this is the presumptive one, so here I am.

To sum up, my symptoms are:

-pain in foot, ankle, calf
-extreme swelling
-edema/pitting
-red spots when I walk
-semi foot drop
-possible spread to right ankle and hands (dropping things)

Here are some pics

Sorry for the long post. It's a scary diagnosis and I hope it can get better. If anyone has thoughts let me know. Thanks. I'm eager to hear your stories too and eager to exchange stories about our journeys.

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Hi Outlander,

I am so sorry for what you're going through. We all know how hard it is getting this figured out. There is definitely a lot of emotional and cognitive bargaining that goes on. That said, there is always hope. Even if you have CRPS, 80% of patients improve over time according to major researchers.

CRPS is a diagnosis of exclusion and if a contributing cause can be found and treated it can make a difference in your outcome. If you have not had imaging or nerve conduction studies done those could give important information. CRPS could be causing your foot to turn out but there could be other causes such as nerve compression. Please don't settle for this unless all possibilities have been exhausted.

Hang in there and come visit on the main forum. You are not alone.

Outlander,

Welcome to the forum. I am so sorry to hear about your possible diagnosis of CRPS. It is a scary diagnosis, but there is hope. Please take Littlepaw's advice:

CRPS is a diagnosis of exclusion and if a contributing cause can be found and treated it can make a difference in your outcome. If you have not had imaging or nerve conduction studies done those could give important information. CRPS could be causing your foot to turn out but there could be other causes such as nerve compression. Please don't settle for this unless all possibilities have been exhausted.

I know a woman who definitely had CRPS in other areas of her body, so when she developed pack pain and was told that the CRPS had spread, she accepted it. Several months later a different doctor diagnosed a spinal infection which was treated and the back pain went away. Moral of the story: Make sure all possibilities are ruled out or otherwise you may be suffering needlessly.

With that said, I hope that you share your journey with the forum. We can learn from each other and having others who understand our pain and frustrations helps us deal with it all.

Shay

Thanks littlepaw and shay. I am going back to the doctor on 11/8 to have nerve conduction studies done. my neurologist wants me to get some blood work done to rule out other possibilities, like diabetes, vit b12 deficiency and something about tssh (not sure what that is). i also wonder if there is some ankle instability because i feel clicking in at least one ankle and when i wear the right shoes i don't swell as much. I will ask all these questions, but i'm afraid. i always think doctors believe people like us are hypochondriacs or have munchausen's syndrome because we want to get to the bottom of what's going on. i'll keep you guys updated.