[GreyHair&GreyMatter]

Is Traditional Medicine Medically Inept Or Epically Shameful And Despicable When It Comes To Treating/Curing RSDS

[birchlake]

Financial considerations are in play. It is not very profitable to research and develop medications for CRPS which is a somewhat rare condition. So the drug companies don't want to play, and we're left over using whatever we can find for other conditions prescribed off-label...........

[catra121]

Originally Posted by GreyHair&GreyMatter

Is Traditional Medicine Medically Inept Or Epically Shameful And Despicable When It Comes To Treating/Curing RSDS

Trick question?

I'd put my money on epically shameful...based soley on my own personal experience. There are good docs out there and people who are doing good work...but I've run into far too many doctors who seem like they could care less about RSD and won't even be bothered to be correctly educated about it when confronted with a case.

I have heard things like "RSD doesn't spread" and "RSD only occurs in a hand or foot not anywhere else" and I wonder where these doctors get this stuff? Even my fairly basic attempts at research on the internet pull up nothing that says stuff like this. It's not like I see different sources with contradicting opinions on these things...across the board it seems accepted that RSD DOES spread and you can have it anywhere/everywhere. So where are they getting their information? Seems to me like they have only a very very basic knowledge of the fact that RSD EXISTS but are just pulling the other stuff out of their rear ends. And who, as a patient newly diagnosed with this monster is going to know any better?

Don't get me wrong...this is a very complicated disorder that is NOT very well understood...but what gets me are the docs and members of the medical community who aren't even willing to educate themselves about the condition period when confronted with a patient who has this condition. I don't mind so much if the doctor doesn't know all about at the get go...I would imagine there are just too many diseases and conditions out there for them to know everything about all of them. But for doctors to give patients bad information or to just pawn them off on someone else because they don't feel like doing their homework? Shameful...

[kathy d]

Hi All,
Rsd seems to me to be a maze in and out of doctor's offices and no one knows what it is or if they do they send you elsewhere. It is quite frustrating at all the false things we all have been told. I was even told within the first month of being diagnosed (in Feb) that by the summer you will be better. I waited and waited...and I am still waiting. It is now six plus years and I still have it lol.

I had to laugh when Catra121 said "I would imagine there are just too many diseases and conditions out there for them to know everything about all of them." I went to an ER once and I had a very honest doctor tell me that when someone (like me) comes in and he and other doctors have no idea what it is...before seeing the patient for the first time he told me they go to the Internet and look up what we have and then come to see the patient. Great I thought but at least he was honest and then asked me what I needed him to do in order to get me some pain relief. He knew I was in bad pain and could read that I had been in the ER for the fourth time that month plus had all my test results in that hospital. I hate the egomaniacs that will say stupid things like mentioned above that rsd does not spread. I just look at them and laugh at them (I have been full body since four months after initial injury).

My goal is to write a book about living with rsd and have as many teaching hospitals as I can read it. There will be people not happy about what I write but oh well because I am writing the truth since not many doctors will tell us about it. I hope to have a laptop within the next month and will keep adding to what I already have outlined and started. Funny thing is for many years I love to write and have always wanted to write a book but could never figure out what about...until rsd showed up haha. I think it will benefit so many people living with chronic pain and if I can help one person then I will be very happy.

I personally think that if there was a cure for rsd or some treatment that could get it into remission quickly then the drug companies would never make as much money as they do now with rsd patients or any other patient needing long-term treatment. It is sad how doctors that take an oath to help people actually treat people terribly and let money get in the way of what is best for the patient. I am not saying ALL doctors but there are some out there that are good and really do care about their patients...I have only met about 3 or 4 thought unfortunately.
Best of luck to all,
kathy d

[Dr. Smith]

Originally Posted by catra121

I wonder where these doctors get this stuff?

Good thread, BTW.

The first time I read the title of this thread, I read it as "Ethically Shameful". Then upon reflection I thought it probably doesn't matter. Then upon further reflection, and thinking about what I wanted to say, I think it does matter.

Medicine knows a lot, and is learning more every day. But still, with all our technology, there is still more that medicine doesn't know than it does know. What you say is essentially true:

I would imagine there are just too many diseases and conditions out there for them to know everything about all of them.

Many doctors, including specialists, have acknowledged this, and that their savvy patients often know more about their conditions than they (the doctors) do, because the patients are suffering with [whatever] and have the time and incentive to do the research.

Medical research is more often driven by economic$ than by altruism; there is more money to be made on treatments and drugs that are patentable than on cures and treatments that aren't patentable. What's been mentioned about the rarity of the condition is also valid. Theoretically (and rhetorically) the profits from these patentable wonders should drive further future research; unfortunately, in reality they often go toward ever-increasing dividends and bonuses.

Going back to the original question/quote, Doctors often aren't aware of [RSD/CRPS] because it is not (yet/sufficiently) taught in medical schools, and they are also taught to dismiss/reject anything that is not taught in medical schools (like information gleaned from the internet and anecdotal evidence from patients). Doctors often admonish us that we shouldn't believe everything we read on the web, and for the most part I have to agree with that, but that's not the same, and doesn't mean, we shouldn't believe anything we read on the web. The legitimacy of sources is everything.

A lot of people on this site are helping themselves and others by sharing the information they glean here and elsewhere, which was not possible as little as 15-20 years ago. That, IMO, is an amazing thing.

As to the ethical part I mentioned above, I think our doctors do truly want to help us, but they have their rules and standards, and they are taught that to be ethical, they must adhere to those rules & standards. We need to help our doctors help us, but getting them to accept/listen is going to require that our homework be done carefully, come from acceptable/legitimate sources, and done to their standards. (I've had doctors dismiss/reject articles/studies from Mayo, FCOL, so this is no easy task.) We have to learn to play by their rules if we want them in the game, and I think we do.

Doc

[alt1268]

My personal experience is their are some doctors who could really care less and do not want to be bothered. (i.e. my ortho) while I get many doctors say that they are very curious to certain aspects of RSD. (i.e. the spread)
Recently I had to add abilify to my list of meds and my pcp is following that in case something goes wrong, he is close by. We were talking about my toes and feet. While one foot is cold and tawny the other is red and hot. My toes are now tan and he said he never had heard about it spreading, but was not real knowledgeable about RSD. I was so glad to hear his admittance. He further asked if I had any information, he would love to read it. WOW! I thought, its not everyday you get this response from a doctor.
Ethically, I think my pcp gave me the best response, while my ortho ignored my complaints and tried to pacifiy me by saying well your xrays look ok. Medication ethics for me falls into the same ball park, you have those who don't want to see people suffer, while others dont care. I would hope when all the options are done with my PM he will refer me for outside help that he is not familiar with.
I am not giving up. Not yet.

[Dr. Smith]

Originally Posted by alt1268

My personal experience is their are some doctors who could really care less and do not want to be bothered. (i.e. my ortho)

I've had doctors like that (not RSD/CRPS); they are not on my team. I've found others; some are healthily skeptical (as am I) but are persuadable with sufficient credible evidence, and I'm ok with that. I've had to jump through some hoops and build communication channels & trust, but that runs both ways, and I'm very satisfied with my team as a whole.

Most of the information I posted previously came from one or more of my current team.

Sounds like your PCP is a keeper. Mine will read stuff, but I have to be vigilant about sources...

Doc

[catra121]

My current PCP is great and has literally been a life saver since I found her in April. My previous one was just awful and I guess I have just had such a string of bad luck that it has disheartened me quite a bit. I know there are good doctors out there...but it just seems that they are the exception rather than the rule and that's what I find shameful.

[frenchfri1003]

Hi, Just diagnosed with RSD. My toes and feet act the same way as yours. They can be blue or red and wither hot or cold. They can be the same or different. I took pictures of my feet to bring to the vascular dr. I was shocked to see how red one could be and ashen or gray for the other one. They can also be blue. My hands are similar. There are times that either my hand or feet are burning they are so hot or ice cold and can be used as ice packs. What meds are out there to help control the symptoms and the progression.

[Jimking]

Originally Posted by GreyHair&GreyMatter

Is Traditional Medicine Medically Inept Or Epically Shameful And Despicable When It Comes To Treating/Curing RSDS

On the most part-both. If you are wealthy you'll find the best or at the very least doctors who are very interested in your well being. If you are another face in the crowd, standard insurance on the most part, you'll end up doing the shuffle, bouncing ball routine. Not good and must be addressed publicly in someway. I also believe this is not uncommon to other medical conditions.