I think one of the biggest problems with RSD is idiot doctors. RSD causes extreme pain, there were discussions on whether it was neurological many years ago. That has been proven, it's neurological, but how it actually acts we do not know. The receptors that react to injury and pain don't know when to shut down. Because of the intense pain, misdiagnosis and mystery of this disease we get STRESSED!!! Stress can make RSD worse. Counseling works for some just to let the relentless frustration out! My advise - Kick the doctor out of your life, call a good friend, have a glass of wine and a long bubble bath and last but not least - Find a new doctor! I still haven't found one who I would call responsive. Good LUCK!

Thanks Artist, Emilys Grandma, CZZ74, HubbyWithRSD, Nikmcjo, Tayla4Me, Frogga, Allentgamer and SeptMystic for all your input!! I am very thankful for your thoughts on this. It helps me to hear from other's opinions. Sometimes I think everyone thinks it's me-- I have had quite a few problems with Docs since my RSD began, in searching for a dx, and figuring out things/ treatment.

The problem is, it is SO hard to find an RSD Doc! The Doc and I now disagree but he continues to treat me in the fashion I need/ want at the time (meds, pt). Looks like I might be Dr hunting for a while until I find the exact one I need.

He definately needs an education in RSD!! He isn't specifically an RSD Doc, he is in pain management.

My Doc states, when I say that it cannot be psychological because it started (duh) when I had an injury- "Well, many people have it and plenty didn't have an injury that started it", telling me that stress that people cannot handle is why they get RSD (they never truly learned to deal with stress properly) AND you know what else? He says that CERTAIN PERSONALITY TRAITS DISPOSE YOU TO DEVELOPING RSD! (Very responsible and high achieving people get it). How many Docs these days actually believe that?

So, the theory is (from my Doc) that if you get the psychological help you so need (because, you see, you "did this to yourself", and are psychologically messed up, cuz you cannot deal with stress), you will get better. Um, no. I don't think so. So, I go to a psychologist, they analyze me, and from there figure out what caused my RSD- what stresses in my life caused it.

****~~~~****~~~~****~~~~****~~~~****~~~~****~~~~
Frogga, No! I do not think he is at all willing to contact other Docs- he is a know-it-all, NEVER willing to admit he doesn't know the answers to a question I ask. He will skirt around some topics that I ask him.

Oh, yeah- he is all into me seeing a psychologist for pain coping skills BUT I have to FIRST be evaluated to find out why I have RSD- what stress in my life caused it.

Well well well, the only way he treats RSD is meds (certain anti-epleptics, narcotics and ant-depressants), psychological intervention and physical therapy.

And, this is no misunderstanding between the two of us... I know someone else who went through the same thing! I wish it was just misunderstanding. NO, he thinks I am psychologically messed up. ARGH!

He says "it's not neurological, it's a pain syndrome". That's it. He doesn't SAY it's psychological, but that IS what he believes (read my above post).

i attended a meeting with a pt who asked me to bring my wife in also so he could describe my condition to her so that we could best manage it. the pt said that i had chronic pain syndrome and that the problem was in my head and that i should attend his chronic pain syndrome classes. after 4years of misdiagnoses my wife was in tears. the wonderful thing about medicine is when they make tremendous breakthroughs in their understanding of certain conditions, what happens to all those who were standing up professing the validity of the previous notions of the way things are. find someone who knows what they are talking about. good luck

Hi KateLynne,

Hope you're feeling better - and getting more help. If you must go back to this doc (I realize some people have had their family doc for years, so...) then at least take along the PDFs which you can download from the link in my post in "useful sites" -
http://neurotalk.psychcentral.com/sh...6756#post76756

Doctors in Holland have spent more time and money on research into RSD than any other nation on earth, and have very recently published their combined findings and recommendations. You can read about it in my other post.

They are in PDF form, one written for patients and one for physicians. Any doctor anywhere in the world will respect these publications, all the physicians involved are very highly respected in the medical profession.

Give both to your doctor so he can see what you are reading and understanding - he will have to address your concerns properly, then.

Just as an aside, I grudge spending time educating doctors (hey, they get paid enough..) but if it's the only way...

I just wish you could give the doc a nice big bill for the free education along with the PDFs
all the best!

Yeah!


Sometimes I do think that if I can educate the Doc and others who I deal with, maybe it will help them with future patients. Even if I leave them and never deal with them again, they will have other patients with RSD!

I will look into those PDFs. Thanks. Maybe I'll try and educate him.

Hi KatieLynn!

I had a few thoughts while reading this post and responses.

First and most important, Where are you located. General, town (state if it applies) or country area location. Maybe as a group, we can help you locate a good doctor. There are alot of members here and with a new post and a little urgency, as a newsgroup maybe we can all pitch in. I see this all the time in this and other groups, and the turnouts are usually good (from what I have seen, I belong to about 10 different ones)


Next, just my 2 cents...

I have read the following RSD is Physical but... because of it and its lovely effects the mental comes in. We have discussed these a number of times here in this group. Depression, suicide and all that.

If you are coping well, then YEA!

***This Doctor may think he is the cat's meow... All I am hearing is the cat screaming and seeing a flaying flying spaz cat... RUNNNNNNNNN!

and hitting head on ceiling

Third, although there is alot that I have read with Type A personality persons having this condition, disease whatever you want to call it. There is no PROOF of common thread of events that causes a person to have this diagnoses.

Anyone, with it can tell you their neuro horror stories and we all see differences on how it effects our nervous system. (((As I sit here with tremors and pain.))) Loud constant noises overload me personally... but it does not mean that it happens that way for you.

We are all different. Individual RSD symptoms based on the INDIVIDUAL.

Gentle Hugs, My friend with hopes for better days!

The sun is shining here! Taunting me to go into the cold but I am not....

AWESOME, I'M Happy, it's almost spring....

Rain

Hello Rainbow: Doctors and other so-called professionals make statements without any scientific proof and people believe them because the doctors are educated and, therefore, know what they are saying. This has caused much harm to innocent people.

Years ago, doctors told people with ulcers that they had them because of a "Type A" personality. Years later it was proven that the ulcers were caused by a virus and could be cured with an antibiotic. I wonder how many people suffered and died because of this misconception. Can you imagine going to a doctor when you had an ulcer and he told you to try to manage your stress better. What a crock! There is no way that it could be proven that a "Type A" personality was the cause simply because it was not so.

How many mothers went to their graves who in their lifetime were made to feel guilty because their children had autism? These mothers loved their children but were told they were cold and distant thereby causing the autism in their children. Families could be torn apart because of what the doctors claimed.

I would ask any doctor who claimed something was "all in my head" to show me absolute proof that this was so, after all s/he is making an absolute diagnosis.

Here is something worth remembering as some people still do not think scientifically, even some "scientists"!! They would (wrongly) think that the following is true:

All Indians wear feathers, therefore all people who wear feathers are Indians.

Regards, Lil

Artist recently posted a couple of links to sites reflecting the exciting work of some young Dutch RSD researchers, prominently among them, Drs. van der Laan and Frank J. Huygen. (Readers with a moderate amount of grey hair will recall the enthusiasm Frans from Holland had for the overlap between Dr. Huygen's work and the Marshall Protocol.) The practitioners’ guide is very helpful, although I wish there had been a greater discussion of immunotherapies.

So as a compliment to Artist’s posting, I just put up on the "Useful Sites" page references to articles by the "Dutch group" on immunological issues that I had already posted in a couple of threads but neglected to put up under the "Useful Sites" heading, where each article can be accessed online, free of charge.

As noted in the post, one of the articles in particular should knock the socks off of any doc that reads it. Here they be: http://neurotalk.psychcentral.com/sh...6756#post76756

Mike

As a follow up to my last, this piece of correspondence might get your doctor's attention, even if it is a little esoteric: Frank J.P.M. Huygen, MD, et al, "Successful Treatment of CRPS 1 with Anti-TNF", J Pain Symptom Manage. 2004 Feb;27(2):101-3.

Attached Files

Successful Treatment of CRPS 1with Anti-TNF.pdf (57.2 KB, 81 views)