I, like many of you, visited with relatives the past few days and the topic of CRPS came up. I have a large family and between all of us we have 3 nurses, a pharmacist, a physician assistant, and a med student. We had a very interesting conversation with some agreement and some disagreement.

One of the topics we debated centered on diagnosing CRPS. Because it is so important to start treatment as early as possible are some doctors forced to make a premature diagnosis? Are they trying to rule out or confirm? I was under the impression that the only way to “diagnose” CRPS was to rule out all other conditions. So do you start treatment before you are able to make a firm diagnosis? Or are doctors too quick to write a prescription without looking into other causes of the symptoms?

We have all been told the CRPS is not as rare as once believed. Is this because people are becoming more aware or because not everyone is using the same criteria? Many of us saw several doctors in a variety of specialties before receiving our final diagnosis. However, is one specialty better qualified to make the diagnosis than others? I was very fortunate that my doctors remained in constant contact with each other before deciding on CRPS. My personal opinion is that CRPS requires a multidisciplinary approach. Many times in hospitals they have “teams” for certain condition. One common team is the “stroke team” which consists of neurology, cardiovascular, physical therapy and others.

Sorry for such a long post. I just really wanted to know what others who share in this living hell think about this.

http://www.painmanagement.org.uk/com...iagnosing-crps
If CRPS is even suspected it must be treated as such because treatments used for similar disorders can cause permanent damage to CRPS sufferers

I agree with you completely. I know that early treatment is essential for a possible remission. The question is while treating for possible CRPS do you stop looking for other causes?

I am not famillar with healthcare and insurance in other countries so I am hoping someone can help me. Unfortunately in the US insurance companies often dictate care because of refusal to pay for procedures, medications or tests. Is this common in other countries?

Rsd is for sure a puzzle to us ,the best way to fight back is knowledge, I hope this can help just in case you missed ,
www.rsds.org. And www.rsdhope.org ,good luck and we are here for you gentle hugs Jesika .

I would say no...you don't stop looking for other causes in my opinion. You should treat it like CRPS until you know it's something else and stay away from anything invasive if there is even the suspicion of CRPS...but you can't stop looking for other causes. Even once you KNOW you have CRPS...you have to be careful not to just assume all symptoms are caused by the CRPS because you could miss something that is easily treatable by assuming it's just another CRPS symptom.

in the early stages i had all the rsd sypmtoms. now they have spread and gone internal. was lucky to have drs work well together to help me manage my pain even though they can't make it go into remission. hope yours does and that you feel better soon.

Thank you for all of your feedback I know I will use it in future conversations. I feel I have an interesting position with having so many family members in the field of medicine. One of the things I have learned here is that most patients are more knowledgable than some doctors. I am more than happy to take what I have learned and share it with anyone who will listen. Thank you all so much!

In australia, under our medicare system the general practioner is the gatekeeper deciding on most tests and treatment referrals. There will usually be an out of pocket component to the cost. Some categories of people eg pensioners, children may be bulk billed for the full cost with no co-payment. Specialised tests eg MRIs can only be ordered by a specialist doctor. I believe it's more generous than in US, though current govt is trying to gradually wind it back. Compensible claims go through insurance and I understand are more similar to your system.

Booklover

I'd guess that there are many different forms and types of RSD and that most involve a compromise of the sympathetic nervous system. This can manifest in many many ways.

I'd also guess that the SNS stays active after an injury and what's needed is a device that can see this activity. When it starts it can be easily fixed but it becomes entrenched if it's allowed to go on for more than a couple years. It seems that until we have mental problems doctors are reluctant to diagnose it.

This disease might be wiped out in ten or twenty years but this might not help sufferers and merely prevent new cases.

Worldwide there have been over 46,000 clinical Trials for cancer for RSD that number is 94. I don't expect a cure in my lifetime and probably not in this century unless there is a dramatic increase in research funding