Hi, I am new and have learned a lot already from reading through old posts. I wanted to introduce myself and also maybe get some opinions whether I even belong here... ?

I was recently diagnosed with possible CRPS by a podiatrist and referred to a pain management doc to confirm the diagnosis. I have to wait 2 weeks for the appointment and I am going nuts researching this condition in the meantime...

It started after a foot sprain in October. It seemed to get better for about a month but never fully recovered. Xray and MRI were normal. An orthopedist put me in a cam boot in November, and that made my pain worse. Shoes that I had previously been able to wear now felt uncomfortably tight and painful. The pain was mostly when weight-bearing, annoying but not unbearable pain, still able to walk with careful choice of footwear, and not a burning pain. Aching or sometimes sharp pain if I put weight on just the wrong part of my foot.

Then I noticed the color and temperature changes in mid-December. My affected foot gets cold to the touch and purple/blue-ish in the evenings. It is bright pink when I wake up the next morning. The temperature never feels warm or hot. It varies from normal temperature to cold, and it will ache and feel stiff when it gets cold. The podiatrist saw the color change and felt the cold when he saw me, and that's why he diagnosed possbile CRPS. He also gave me a cortisone injection, and that has helped with the pain but not the color/temperature weirdness.

It is about 3 months from the initial injury. If this is CRPS, shouldn't it be warm/hot at this stage? Am I already in the chronic (cold) phase? Are there other conditions to rule out? I made a neurology appointment as well, but the wait time is a whole month for that! I know people can't diagnose me on a message board, but maybe you will have some thoughts that would lead me in the right direction. It's very hard to sit here and wait for appointments when I read about how treatment works best within 3 months. I may already have missed that window

I, too, was diagnosed three months ago. In addition to the x-ray and MRI, I had a bone scan which seemed to confirm the diagnosis. I have already had two spinal injections and am awaiting the third. Sometimes my foot is cold, other times warm. In the morning it almost looks like the other but quite quickly it swells and turns pink but no longer gets bluish-purple. I have purchased a pair of New Balance shoes that are two sizes longer and four sizes wider to accommodate the swelling. I have approximately 4-6 hours a day where I can function reasonably normally, then I have to sit an elevate. More often than not it is stiff at night.

According to the NINDS, CRPS affects women more than men and tends to peak out at age 40; lucky me, I'm a 67-year old male! Go figure. Although the CRPS is affecting my left foot, it was either the spine surgery I had or the two infections I developed a week after surgery. Take your pick.

I was told by the hospital itself that, despite being a university hospital complete with a medical school, they have no one who regularly treats CRPS. I am under the care of my neurosurgeon who admitted that, in 30-odd years of practice, I am the only patient he has had to get CRPS, and the pain specialist. I am on Lyrica, which is an anti-convulsant but is also prescribed for neuropathy. You didn't mention anything other than a cortisone shot. Of the two shots I've had, one was anesthetic while the second was anesthetic and cortisone.

So perhaps those are the differences that perhaps you might investigate; a) a bone scan, b) a prescription for the neuropathy, c) the composition of future injections.

Wish you the best!

Hi, thanks for that reply. That is helpful. Sorry to hear you are dealing with a similar condition. I am a 39 year old woman, so I guess I'll fit right in here (yay)

On further questioning of my podiatrist, the injection he gave me last week was a peripheral nerve block injection combining steroid and anesthetic. He suspects CRPS type II with an injury to the sural nerve in my foot. The injection he gave me was in my foot near this nerve. Not a spinal injection. It's been one week since I got it, and it's still helping a lot with the pain.

I'm seeing a physiatrist in a few days for EMG/nerve conduction testing to find out more about the possible nerve injury and maybe get some PT started. Then I have to wait another 10 days to see the pain management doctor who treats a lot of CRPS cases and does spinal sympathetic nerve block injections. I don't know which of those two doctors would order a bone scan and/or neuropathy medication, but I will ask about it.

Are you doing any PT at all? Is that helping?

Thanks!

Not as yet. I'm waiting for the third shot. A few weeks after I have an appointment for a physical with my PCP. We'll discuss PT then. I would think that either doctor could prescribe whatever medication they believe might be effective and complementary to what is already being administered.

My shots are spinal because I've had three surgeries from L3 to S1; a laminectomy at L3, a decompression/fusion at L4-L5 and a discectomy at L5-S1. All three relieved nerve pain that ran down my left leg to my foot. The last one, the discectomy, is the likely culprit that triggered the CRPS, at least that's what the neurosurgeon thinks. The medical report of the surgery does not suggest that there was any damage accidentally done to a nerve. So I guess I'm just lucky!

There's 3 stages,

hot
hot-cold (skin red to blue / marbled)
cold (chronic)

I am in the chronic stage. I was diagnosed almost 3 years into it, so the condition fully had its effect (including severe osteoporosis). PT at this point no longer does a thing for me. I have had PT in the past, for almost a year without any other treatment / medication and I got *significantly* worse.

I would get help asap! Maybe another pain doctor somewhere else, wherever you can be seen most early. This is urgent!

I wouldn't focus too much on the "stages" of CRPS...I think that is generally considered old thinking because people go through stages in different orders, are in one and then can go back to it later, skip stages, etc.

There are definitely some key things that SOUND like CRPS but many times CRPS is a diagnosis of exclusion (rule out a bunch of other stuff and then you know if it's CRPS) but it is good that they are identifying it so early. Even if it ends up not being CRPS it's far better to treat it like it is until you find out it's something else because there are certain things that can make the CRPS worse and cause it to progress further/be harder to get to remission.

So in the mean time while you wait to see pain management and neurology...avoid ice/cold as much as possible as well as immobilization. Immobilizing is bad so even just stretching exercises are good if weight bearing is too hard.

My CRPS is on it's 10th year and for me it has always been cold. The pain itself is burning but the temp change in my various CRPS areas is always it gets very cold and that started happening almost immediately. It was the first symptom aside from the intense pain that was an indicator of CRPS (and was ignored by every doctor until I got to a pain management doctor). But I also think that many things were done in the beginning (ice, immobilization, etc) that caused my condition to progress faster.

Unfortunately I never responded well to medications or other treatments. In December of 2017 I got a DRG Spinal Cord stimulator and that has been life changing for my CRPS pain in my left leg from the knee down...so I am mobile now at least. But heat always has helped so if you can, maybe try some warm baths with epsom salts to give you some relief. Because you are only 3 months in, you may respond better to some of the treatments like sympathetic blocks or medications and physical therapy. Many, many people go into remission if they catch it early enough and treat it properly.

I wish you all the best luck in sorting this out.

I don't have much to add to Catra's excellent post/advice.

My CRPS journey is also a decade long now and is somewhat similar except I don't have a stimulator. I am treating it with a medicinal cocktail and a "keep it moving" attitude and I am religious about daily therapy and exercise.

Results for me are mixed. Symptoms vary from day to day; relatively stable in my original right foot, but more active the last couple years as it spread from my right foot to my left foot. I am still able to walk without assist at this point and hopefully can keep that independence.

Best of luck to you; please keep us updated!

Hi, thank you for all these replies! I didn’t check in for a little while because this site was causing a lot of anxiety, but I’m feeling calmer now that I’ve gotten in to see the right doctors. Just to update, I have finally seen the neurologist who ruled out nerve injury. Saw the pain mgmt doctor who seems knowledgeable about CRPS, and I am going for my first sympathetic nerve block injection tomorrow. That plus gabapentin and referral to a PT who treats CRPS. There is a also neuropsychologist in my area as well who treats CRPS, but I haven’t seen her. I’m not sure if I should? It’s such a struggle to find the right providers, get on their schedules, get approvals from insurance, etc. I have never been so pushy in my life just to get care in a timely fashion! A very stressful situation... Hopefully I am still early enough for some of this stuff to help.

Good luck to you on your journey. A new diagnosis can be frightening, but I'm sure you'll find your way. Never stop fighting for good care!

I missed that "window" of immediate treatment, by several years, so I have never focused much on what they do if it's caught early. What you describe, at least to me, does sound a lot like what we see with CRPS, so your podiatrist may be one of the best and brightest among us, and you may need to thank your lucky stars he threw CRPS out there, because if it is CRPS, then what you need to do in my opinion, is anything and everything they do when CRPS is caught early...whatever they are saying that is.

In other words, treat it like it is and do whatever they do when caught early. This disease is #1 on the pain scale for a good reason, because it's horrific at best, and at worst, many of us can tell you there are no words for a life with it, particularly if it goes systemic (body wide). I am not trying to scare you, but I am trying to motivate you to not play around with this and do whatever they do when it's caught early to improve your prognosis. I couldn't be more emphatic than I am, trying to use written words to emphasize how important this might be for you.

Sure...seek your confirmation by others, but in the immediate, and starting right now, plan for the worst, hope for the best, and to that end, find out what you need to if your podiatrist was right, it is CRPS, you are in the early stages, and you can't afford to wait a month to see somebody to speak words to you. Also, if it is CRPS and the person you wait a month to see isn't as bright as your podiatrist, and misdiagnoses it as "not CRPS" when we later learn it is/was....who pays the cost for that failure to diagnose properly....not the person you waited to see.

It happens....it happened to me.....I saw doctors who spent a lot of time making a diagnosis, a very long time, and I learned after the fact what that would cost me. I should have seen lots of doctors until somebody got it right, but hindsight is 20/20....and you are very fortunate here and now, because regardless of the other professionals you see, you already know what it might be, and if so, what you need to do about it, if your podiatrist is right.

All the best and I hope your podiatrist was wrong, but what you describe sounds CRPS...and, frankly, at least for me, the tell tale signs didn't show up like neon signs until much later in the progression of the disease...maybe because I didnt know what to look for, since noone was telling me "CRPS," but still, CRPS has been progressive for me, so it's very likely you won't see, right now, what you will see in years to come, if your podiatrist is correct.