Does pain come and go?

Hello,

Yes, as crazy as it may seem, this is actually a fairly common pattern for CRPS. You read a lot that CRPS is characterized by constant, burning pain, but in fact, anything goes: I too experienced brief periods in which I had no pain, only then to have the pain come back without warning, sometimes just in my foot, but sometimes with a deep aching, stabbing or spasmodic quality along with or instead of the burning, and it would quickly go all the way up to my hip (original injury was to the left knee only, CRPS-type symptoms got much worse and more constant after I had knee surgery to "fix" some loose cartilage). Ofcourse, I know now that surgery is usually a bad idea if you already have CRPS-type symptoms, unless going without the surgery is definitely going to result in definite bad outcome for whatever reason: Like you need your appendix taken out because it may rupture. Or in your case, you may have needed a surgery to repair your fibula, to head off a virtual 100% chance of developing arthritis and chronic pain?? Just guessing, but that's a pretty common scenario. On the bright side, up to 80% of CRPS patients recover in the first calendar year, with or without treatment. Younger patients seem to do better in this way, too. On the downside, if you have the condition for 2 or more years, currently your chances of recovery are only about 10%.

That being said, as long as your pain is confined to one limb, you are still in the category of patients who may benefit from selective nerve block injection, or steroid medications to reduce systemic inflammation (Which is ALWAYS present in early CRPS). After the first few months, these interventions aren't that helpful. Don't know who you're treating with, but if not somebody who is current with the research findings, and is only treating your pain, you may need to find out whoever your regional expert is. Treating for symptoms only may not result in a cure, though it can help you get through your day and sleep better at night, for sure. I'm a nurse, and had seen CRPS confined to one limb in several of my patients; even so, it took just over 2 years to get a firm diagnosis since my signs and symptoms spread so fast after my knee surgery. What I learned was that even very famous CRPS doctors aren't always current in their understanding of the science behind CRPS: Many of them don't understand about the phenomenon of centralization of pain, AKA Central Sensitization. This is why you get some otherwise smart and competent doctors not understanding how your symptoms can spread and/or change over time.

So the more you read, and research online, the better you can advocate for yourself.

The thing to keep in mind is, the symptoms are the result of the injury-induced changes in the chemistry of the body part that suffered the original injury: Sort of an "inflammatory soup" develops there, and bathes the local nerve endings in your skin and around your small blood vessels, especially. Those nerve endings send a distress call to your central nervous system, which registers and transmits pain/chemical/inflammatory signaling to your conscious mind, but also back to the injured body part. And whereas in normal healing this would go away as you healed from the injury, in CRPS, it becomes a sort of short-circuit that maintains itself, even after the original injury appears to be healed up. Once it's in your central nervous system, it can spread to higher up on the injured limb, or even spread in some people to a different limb or other body part. I eventually ended up with it in my body and my face, but usually the left side of my face only. Or even just my left ear. Doesn't hurt much in my face or ear, and the color changes are temporary, but boy does it look weird! I had a Resident physician run out of the room to get his Attending physician, when this happened at a routine doctor's appointment! But it was gone by the time the Attending came to the room, so I'm pretty sure he thought his Resident was over-reacting, if not full-on Making Stuff Up...

Don't let anybody give you any crap about where, when, why, or how severely you have symptoms. Every CRPS patient  is a little different: You become the expert on YOU, since you're the only one who knows how you feel at any given time, and what your triggers are.

I found it helpful to jot down what I was doing when my symptoms were the worst, and when I was feeling my best. I did this for about the first 6-8 months, to try and understand what was happening. After a while, I could clearly see patterns: I used to think that rainy weather made me feel the worst, but it turned out that it was more like the CHANGE in the weather (and specifically, a big change in barometric pressure) that did it: Especially if the barometer dropped really far, I would feel more limb pain of the burning and aching varieties, and I'd be dizzy and have no energy. Sometimes, I'd even have a weird, croaky laryngitis in the morning. Still don't entirely understand why, but it became pretty predictable on rainy days. Also, getting over-tired, or being under extra stress of any kind, made the pain worse: Sometimes much worse, and immediately! I made my room as dark and quiet as possible and would go in and lie down, meditate or use controlled breathing, to get a handle on it. Cold weather makes the sensations of cold and pain in my extremities much worse; the first Chicago winter I had CRPS, I didn't understand how the weather was figuring in, and so was in a state of anxiety and dread that the worsening of my symptoms was going to be permanent. It wasn't: When spring came, I felt about 50% better, overall... Until the barometer dropped like a stone just before the rains came, that is

Wishing you best possible outcome! Happy to answer more questions as needed, anytime, if you find it helpful

Thanks so much for your thoughtful and very helpful reply, Sabrina!  What a strange phenomenon CRPS is turning out to be.  I'll experience short periods with very minor symptoms and pain, which is an improvement, only to be hit with a vengeance later on.  With each flare-up, more parts of my body are being grossly affected (the majority of my right leg and now my right hand and arm).  I'm still hopeful for recovery but I am getting discouraged.  Anyway, thank you again!

Hi Moonlitt,

If not already done, check out Dr. Pradeep Chopra and Dr. Jay Joshi giving RSD/CRPS lectures on YouTube. These guys are up-to-date experts. It sounds as if your pain has become centralized, so you will need to find a doctor who understands and can give specific treatment for centralization in all likelihood.

Big problem: Even doctors who have been treating CRPS for decades may still be in a place where they 1) Believe that CRPS does spread, but don't believe anybody has figured out why or how, or 2) Keep treating the symptoms of pain, anxiety and insomnia instead of also treating the thing that perpetuates and eventually worsens the condition in many patients (Barring frank nerve injury or infection, etc., that's central sensitization).

My BIL is a doctor, who teaches at a famous medical center. He is not a pain specialist, but he is well acquainted with the doctors who are. These folks see CRPS patients from all across the country. Don't know how it is now in 2018, but as of 2014, they were saying on a pod cast that there's no such thing as full-body CRPS; it's got to be some sort of neuralgia, that has other comorbidities (Fancy way of saying contributing factors, in this case, illnesses and the like). The term Central Sensitization never even showed up once in that conversation: Zip. Nada...Despite the fact that since 2009 there has been definitive proof that CRPS 1 is usually a small fiber nerve injury, and spreads via the nervous system. Scary!

Yes pain comes and goes. Mine gets really bad if I'm in cold weather or I've been on my feet for too long.

It always seems to get worse at night.