Hi Loretta,
Thank you so much for responding. I'm sorry that it took so long for you to obtain a correct diagnosis. On that note, I'm glad to hear that you were eventually able to get one. I cannot believe what I am reading with respect to CRPS patients and the hurdles that many of them have had to overcome in order to get proper treatment. My mind is officially blown. It shouldn't be this difficult!
Get ready for a novel of a post... I apologize in advance!
The CRPS is in my left foot. It was triggered by an overuse injury called sesamoiditis. The sesamoid bones are tiny, pea-sized bones that are embedded within the tendon on the ball of your foot. They sit in tiny little grooves and, every time you take a step forward, they help articulate the big toe joint. Mine are prone to inflammation because I was born with one of them in two pieces (called a bipartite sesamoid bone). Either that or I fractured it - It’s very difficult to differentiate between the two. The injury occurred in July/August of 2012 as I was hiking and running a lot. It happened gradually. One day, the pain simply didn't go away.
I sought help from a local podiatrist who helped modify my running shoes so that I could continue to walk. Initially, the insert helped to offload the ball of my foot and things seemed to improve. After about a month; however, the pain came back and it was worse than when the injury was first sustained. In November/December, I noticed that my foot had begun to swell while in the shower. The heat from the shower caused my foot to turn bright red and sometimes purple. My toes felt like little blood-engorged sausages from the vasodilation. At this point, I knew that something was terribly wrong. My podiatrist asked me to track my symptoms and also made me custom orthotics to offload the ball of my foot even more. Despite weeks of conservative treatment, I was still in pain. Both my podiatrist and I began to worry at this point because most cases of sesamoiditis are resolved with treatments such as this. That being said, they can be difficult to heal and sometimes require casting and/or surgical removal of the bones. After taking x-rays two weeks ago and discovering bone loss in metatarsal heads 2-5, he diagnosed me with Reynaud's and CRPS. Joy. So not what I wanted to hear!
I did try physical therapy for a while prior to receiving the CRPS diagnosis because the literature shows that PT is a vital component to the recovery process with respect to sesamoiditis. The PT was against my podiatrist's advice; however, as he wanted me to rest the joint as much as possible. I went against his advice and did the PT anyway because my injury had gotten worse and I wanted to explore all treatment options. In some ways the PT helped, but the pain relief was always temporary and things seemed to worsen overall. The PT included active range of motion, iontophoresis, icing, and strengthening exercises. I eventually stopped attending PT due to lack of progress and tried following the advice of my podiatrist once again. Basically, I was to wear my orthotics within stiff-soled hiking boots whenever I was on my feet. No walking barefoot, no bending the joint, etc.
My CRPS symptoms include the following: My left foot sweats a lot; if my feet are cold, my left foot is much cooler; if my feet are warm, my left foot is much warmer; sometimes my left foot is cold and the right foot is warm; my left foot turns bright red/purple and aches in the shower, when I drink alcohol, when I exercise, and sometimes it turns red and hot for no reason at all; whenever I sit down, my left foot gets super cold, white, and sometimes turns purple; my left foot and ankle often feel heavy, dead, tired - I'm not 100% sure how to describe this feeling; my left foot burns sometimes despite the fact that it's freezing cold; sometimes the point tenderness on the sesamoid bones is horrible and sends shooting pain up my leg (other times it's fine); the sesamoids often ache; and sometimes I get a numb/tinging feeling in my foot; when I'm startled by a loud noise, I feel pain in my sesamoid bones; finally, when I'm extremely stressed out, my symptoms seem worse... Lately I've noticed some of these symptoms in my right foot which is really worrisome. I also have bone loss in metatarsal heads 2-5 despite the fact that I've been using my foot. The only assistive device that I've utilized has been the orthotics within the stiff-soled hiking boots. Something that I find odd - the burning pain, the aching pain, and the point tenderness is not always present (unless I were to remove the orthotic and try to walk without it). CRPS is always described as intense, burning pain 24/7. My foot never feels "normal"; however, and it's never gone back to it's normal coloring or temperature. It's always off in some way, shape or form.
I've never experienced these symptoms prior to November/December 2012. Whatever they are, they were triggered by the injury. I've considered Reynaud's, venous insufficiency, erythromelalgia, and CRPS.
No referrals have been made as he's attempting to treat this on his own. He prescribed the following: heat packs on my abdomen and lower back 3 times per day, 15 minute walks 3 time per day, limited caffeine intake, alpha lipoic acid 600 mg, B-125 complex, 1,000 mg vitamin C, 1,000 - 6,000 mg L-arginine, 1,000 mg niacin, 2 zinc lozenges, 1,000 mg calcium, 1,000 mg magnesium, 2,000 IU vitamin D-3, fish oil, and 1-3 220 Aleve pills per day. In addition, he also wants me to listen to stress reducing, self-hypnosis recordings at night.
Although many of these supplements are beneficial for Reynaud's and bone restoration, the literature only supports the use of Vitamin C and Magnesium for CRPS. In addition, these treatments worry me because, from what I've been reading, I should be employing aggressive treatment ASAP. A lot of the research suggests PT, ketamine, prednisone, etc. So far, I haven't noticed any improvement since I've been taking the supplements.
A few questions: How long does it take for improvement to show???? How long do I give these conservative treatments before requesting a referral to a pain specialist? How do I know if the pain I'm feeling in the joint is from the CRPS? In my mind, if it's CRPS related, I should be moving it despite the pain. If it's not CRPS related, I should be resting it and allowing the sesamoids to heal. To move the joint or to not move the joint, that is the question. Is a pain specialist even the person to see?
As you can see, I really need is a doctor who can answer all these questions and who is also willing to refer me out and try different treatment options... I've tried asking my podiatrist about these things but he seems very frustrated by my lack of trust. I get it, but I have to continue to advocate for myself.
My head hurts just writing this lol. Does your head hurt from reading it?
I am scheduled to see an orthopedic surgeon at the end of February who I am hoping will do an MRI or a CT to determine whether or not there is soft tissue damage in the sesamoid area. Hopefully that will help to answer my question with respect to the pain and whether or not I should start PT. From there, who knows! Hopefully he will know someone with a soft spot for CRPS patients… and if not, it’s back to square one.
That's about it. I’m a nursing student and so I can advocate for myself quite well. But no matter how many neurologists and pain specialists I call, I can’t get anywhere. No one specializes in CRPS in the same way that one might specialize in rheumatology or Parkinson’s disease… most pain clinics state that they usually only work with patients who are in the later stages of CRPS… the one neurologist I found had horrible online reviews and he was also out of network for my insurance company. There are so many road blocks. I can’t even imagine what this is like for someone with no medical background…
Anyway, I digress. Right now, I’m following my podiatrist’s orders as best I can and I’m also going to community acupuncture twice per week and spin class at the gym 3 times per week. I start my last semester of nursing school next week and I am worried that I won’t be able to complete clinical hours without extreme pain… hiking boots + hospital floors + CRPS + sesamoiditis = ouch.
Thanks for reading this. It’s one mess of a post. But I figure the more information I lay out there, the more I’m likely to get back.
<-- that's just a darned cute icon and I couldn't help but use it!