ROFLOL Imagine how silly I looked. My PT and I had worked on different projects through the church, so she and I were very good friends. When she told me that we were going to give Flash Card Recognition a try, I laughed my rear end off and made a joke of it saying, 'That's ridiculous. I'll get all 10 out of 10 correct on that test.' And then I failed miserably and had to buy her lunch. I do not like to lose! I can still feel the sting of my defeat. GRIN!! ROFLOL hahahahahahahaha

EDIT: What took me the longest to understand about CRPS is the FACT that this disease is first and foremost a Neurological Disease involving the Brain, Spinal Cord, and Every Nerve running through the body. It is first and foremost about these seats, it is secondarily about where pain is exhibited in the body in a certain sense. That is why those who know and understand this disease best seek to retrain the brain as a part of therapy. IMO that is one of the best approaches. And what makes it so difficult to deal with is, CRPS is aggressive. In many cases, if you take one step forward in progress, it strikes you back four steps and makes you pay the price for your attempt. It's like trying to chase someone out of the house that you really don't want there, and they just keep moving from room to room, wrecking more rooms as they move trying to avoid you! In the toughest cases, one treatment works for a while and the patient thinks, 'Great, I'm showing progress. It looks like I'm finally going to beat this 'Monster.'" Then the technique stops working and the person crashes and actually gets worse! That is hard to take. Been there! Done That!

I just want to give a respectful reminder that CRPS is a spectrum and has highly variable presentations and outcomes. It sounds like Spike is talking about the worst cases. We must all remember that many people improve. The people who do best are probably not on a forum.

Some patients will do well with aggressive therapy, others will have to go very slowly and be very kind to their bodies, listening to every nuance in order to avoid flare.

I had to be gentle with my own rehab due to the nature of my surgeries. The important thing for me was to be relentlessly persistent in the gentlest fashion. Some things did make me worse and I had to judge whether to try them again less aggressively or just wait a while. There are some things I can't do with my foot (owing to the deficits from the injury)and I have to recognize that. But with ongoing work, many things have gradually improved over time and I am able to do things now that I couldn't earlier on.

Listen to your own wisdom, keep trying and undertake the work of getting better with patience and kindness. Gains do come.

Thank you to all for your thoughtful responses.

Thank you for explaining it this way, it kind of clicked. I DO keep thinking, if I can just fix my foot, it’ll all go away. But, sounds like it’s going to be a bit more involved than that…

Thank you, I breathed a sigh of relief when I read this.

I'll check this out!

Ugh, I so don’t want to go spend more money on doctors telling me they don’t know what’s wrong… Last month my small group insurance at work went up by about 40%, as we’d reached the deadline for getting an ACA compliant policy. So I’m paying about $90 more a month in premiums for lesser coverage, now every GP visit is $50 and specialist visit is $70. Plus my Cymbalta copay went up by $65 a month. And I’m already so overwhelmed with being a wife, mother to a 4 and 6 year old, working full-time. Anyway, I’ll quit my groaning, like ANYONE wants to deal with this...

So I’ve started looking up PM doctors through my insurance, but looks like I’ll be starting with my PCP because I have an HMO. I’m hoping to make an appt this week. Again, thanks to you all. I’ll keep you posted.

You may want to ask your Primary Care Physician the very simple questions, "How much do you know about CRPS?" and "How many cases of the disease have you treated?" Getting proper, early care is vitally important.

Speed bump,

I am in a major city with excellent doctors, but have found that there is little knowledge about CRPS here and so far none of my doctors seems interested in learning.

The best help and support I got was online. It was exactly the same case as when I was my parents' caregiver-quite frankly the real world did not offer much, but the cyber world was there for me 24/7 with practical and affordable advice.

Do whatever it takes to get LDN, for the sake of your children. It has few side-effects, is cheap and effect. Watch the Pradeep Chopra videos recommended by Littlepaw.

I'm confused. Are you advising this person not to seek professional medical care from a Doctor and rely only on the internet for information and care? I am really confused. In my opinion, having an exceptional CRPS educated doctor is invaluable. Granted, the internet is great and a person can glean a lot of very helpful information from you and others as well as well documented sites, but there is no replacement for a caring, patient oriented Doctor, who knows their stuff. Is there? And if they are invaluable, they certainly are worth hunting for if they are to be found in one's area of the country. Don't you think? Or are you just saying that finding a qualified doctor is difficult to do, which is true, because of the lack of information in the community about CRPS? What am I missing?

There is definitely no substitute for skilled and knowledgeable doctors.

I personally didn't get the impression Bio was telling anyone not to seek medical care, but saying that it is difficult to find doctors who know CRPS. I have to agree that it is a challenge reiterated by many here and a reason many of us see several doctors before settling on one. I am deeply grateful to mine but it did take a while to find him.

There are so many good tips online from a patient's perspective for living with CRPS (and access to the latest research and treatment info) that I can see where the internet is helpful. It is certainly a great place for support like Bio said. But like everything, it's always good to consult the experts before embarking on something new.

Hi SpeedBump,

Great information from everyone else already.

Relevant to your thread topic, I chose self treatment when the recommendation of nerve blocks and a revolving cocktail of drugs, potentially followed by a spinal implant, didn't make sense to me as healing methods. As short term modalities - sure - (excluding the SCS) - but these were being presented as the only treatment methods available. In addition to seeing at least 5 specialists at local for-profit hospitals, I went to a well known teaching hospital and pain management center supposedly "specializing" in RSD (they called it CRPS.) No PT, no OT, no mental health counseling, no antioxidant/nutritional recommendations... All the things I thought were really important were not being offered or even mentioned as treatment. Again - not against short term fixes as long as the broader recovery goal is kept in context. Immediately post-diagnosis, narcotics really helped me with the pain early on and were invaluable.

Going wholly solo is definitely not for everyone, and to be absolutely clear, I would have LOVED to have a PCP or specialist with me as a knowledgeable partner in battling RSD. Unfortunately the medical field just isn't set up for that to be an option, unless you get very very lucky or are very very persistent (or both). I was really scared to go solo but personally felt like it was my only option.

I've been blessedly free of symptoms for three years now; here's a link to the stuff I got into: http://neurotalk.psychcentral.com/thread205597.html