What my Doctor told me is ridiculous! What do you think?
 

My Doctor told me that Reflex Sympathetic Dystrophy is not neurological; it is a pain syndrome.

What do you think? How would you have responded to him?

Is it or is it not neurological?

He continues to say that anyone with this needs counselling, and that it is caused majorly by stress. He says stress is a major part of causing a pain syndrome, especially Reflex Sympathetic Dystrophy. :mad: :mad:

hi,

Did he say neurological or psychological? Huge difference; but either way if he's telling you that then he's a bad doctor, so bad that I hardly know where to begin. You must not go back to him. Ever.

Just my $0.2 worth!
all the best.

let him walk in your shoes for ONE day.......
 

What do you think? How would you have responded to him?

Is it or is it not neurological?

He continues to say that anyone with this needs counselling, and that it is caused majorly by stress. He says stress is a major part of causing a pain syndrome, especially Reflex Sympathetic Dystrophy. :mad: :mad:

me thinks you need to find a new doctor..............sorry you had such bad luck with this one..............

Forgot to say - no one really knows what RSD is.

Except that it isn't "all in the mind". If he thinks he knows then he's a fool, and if he won't at least read up on it then he's a bigger fool and if he thinks it's neurological and that that's how diseases of the nervous system should be treated, then he's an even bigger fool.

From what you say, continuing to see this doctor could be more dangerous to you than RSD itself.

Enough, my blood pressure is rising.....:)
all the best.

well I would
 

Refer or print for him, Mayo, cleveland cllinic, Johns Hopkins, Harvard, Yale, publlications on rsd, list all websites then run dont walk out of there and never ever go back.


Just for the sake of educating the fool so he doesnt hurt the next RSD patient too.

All I got to say about that little comment is :yikes: :Bang-Head: - Get rid of him!!!

Dude. Sorry about ur doctor. He has no clue what he is talking about. RSD is sooo real. I'd like to see him live 5 minutes with it and tell you that it is all in your mind.

I have to admit, some of it is mental. For example, if someone comes near you, you cringe because you don't want them to touch you in fear of more pain. That is mental in a way, but the result of them touching you is very real. And sure, stress might make RSD seem worse, but it is definetly 100% not the cause. I have never been a stressful person and I got RSD.

And RSD is neurological. Don't listen to that doctor. I also agree that you need to get a new doctor that knows what RSD is. He sounds like a doctor that I had. My foot swelled up 4 times it's size (not directly from RSD, it was a bad reaction to a vasodiolater cream for foot to help with circulation issues with RSD) and she said it was just a rash when my foot was black, blue, purple, red, and other pretty colors. I'm only 15 and I could tell it was NOT a rash. And guess what, it wasn't! But get a new doctor ASAP.

Good luck :grouphug:

:eek: Your response should be to not ever see him again and as someone has suggested, send him as much current data on the disease as possible!
What an absolute tosser?? What physiology is he suggesting that causes a "pain syndrome"?Any doctor who can't figure that out needs to be de-registered.
Might pay to name him and shame him!!

Hey

that dr sounds like he doesn't want to know about RSD and is basing his knowledge of RSD onto stuff circulated 20 or so years ago. I think you have to decide whether he WILL learn what it is or whether he refuses to. Also - is he your "specialist" or your PCP? In the UK in med school less than a day is spent on chronic pain conditions and of that RSD is mentioned for about 10 minutes and a GP (PCP) is unlikely to see many cases - so he might be educatable. These are just some ideas you might want to think about when discussing doctors.. and before you change drs.

1) Is he willing to contact drs with a speciality in RSD?
2) is he willing to try a multitudes of treatments/ drugs etc to try and get it "under control".
3) He is correct saying that RSD is a pain syndrome BUT it has neurological effects, rheumatological effects, psychiatric/psychological effects, orthopaedic effects etc etc etc.. therefore will he treat this in a holistic manner?
4) are you on opiates? if you went to a new dr would they continue prescribing them?
5) how much further is it for another dr? are there any that know about RSD?
6) what are his views on physio? if he believes that RSD is due to stress then has he suggested a pain management course which will teach you how to handle stress etc?

I really hope that this gets sorted out! It might be a misunderstanding and he might be willing to learn about it - but if not then you need to find someone else, who you are comfortable with and who understands what this life is like, even if they only understand to a certain extent!

Good luck and love

FRxxxxxxxxxxxxxx

Crps
 

Sounds like that doctor is in the Complex Regional Pain Syndrome camp.

A real shame there cause even though he is referring to CRPS, it still is not a phsycological disorder. They have pretty much proved that. They just cant tell you why your in pain lol :rolleyes:

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!:grouphug:

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? :eek:

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. :mad:

****~~~~****~~~~****~~~~****~~~~****~~~~****~~~~
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! :mad:

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).

try not to worry
 

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...:Dunno:

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

Yeah! :icon_lol: :winky:


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. :rolleyes:

Location comes to mind
 

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)
:grouphug:

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. :Sob: :circlelove: :grouphug:

If you are coping well, then YEA! :D

***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!

:Trapeze 2: 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.... :cool: :hug: :grouphug:

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.

Hi Diamond Lil!

Thanks for agreeing with me on that type A stuff. I was trying to say it but I think you did a better job! :hug:

Rain

Just playing devils advocate for a moment. Why does it matter what he calls it? Nothing is really known or set in stone with RSD. A pain syndrome is no less legitimate than a neurological illness. I think a lot of us with RSD have been be littled or under treated. It tends to cause people to be defensive and be less open to ideas that don't seem "serious". A pain syndrome is a serious thing. I have had RSD since I was a little kid and I have been down all the roads. It took a long time to let go of that defensiveness.
I just encourage everyone to be open to what ALL doctors say. Some are right and some are wrong but the fact is there is not enough evidence in any direction to say what rsd is. It isn't in our heads but our heads can hasten or impede recovery, function, pain levels. Our heads are more powerful than any disease or syndrome. It can be a trap to over identify with your condition. If too much of your life is invested in being in pain you won't get better.
If your friends are fellow patients or your socalization consists more of support groups than outside interests then flip that around. For every RSD post or blog entry write to a group you share a health interest in, even if you can no longer participate. SOmetimes the incentive to get better disapears because with out the condition we wouldn't know who we are or how others would know us. It is not a character flaw or a weakness, it is human nature to integrate every chronic situation in our lives into a way to serve us in some way. Every person with and illness can find at least one way to make the disease work for them or else we would all jump off the bridge. SOme people make it a way to reach and educate others, some use to to keep people close, others to push them away.............
I encourage people to take an honest look at how you make it work for you ( a normal natural thing to do! Nothing shameful about it!) and then be sure you have other ways to meet that need in the event that you do get better. It is hard to keep it all in balance and we rarely ever do but just always stay aware of the tendancies and traps.
The research on chronic pain treatment is very tainted due to the fact that Doctors don't treat the psychology of chronic illness. I have know patients who get a SCS and for the first 6 months they feel great. Then they realize that all thier friends were sick and now they don't have anything in common with them. They suddenly have to work after years of being home. People don't check on them as much. The world gets very bid very fast. Because they feel ashamed of wanting the life they knew best the SCS suddenly doesn't work anymore or the don't pay attention on the steps and fall down and get hurt again........ Feel all that is normal and doesn't mean they were faking all along or that they enjoyed being ill. But we have been made to prove we are in pain and beg for attention that we wouldn't never admit that to the doctors!
Some much is out of balance in the treatment of RSD, try to keep an open mind and an open heart. I hope this is not offensive to anyone. Believe me it comes from a caring place of MUCH experience. Blessings

Hi Mommyjen,

I'm not certain who your post is directed at, who do you think here is preferring to be sick rather than well?

I think fixating on the "pain syndrome" phrase is unfair, I would have thought it is clear that this post is about doctors either trying to treat their patients for a psychosomatic disease rather than one with physiological causes, or who are hopelessly out of date. As has been shown in other posts, a doctor's education includes minimal information on CRPS/RSD.

I certainly won't be open to listening to "ALL doctors" some really are (using a phrase recently introduced to the forum which I love) pindick doctors who tell us that RSD is "all in the head" or follow debunked protocols.

I think you're delivering your lecture to the wrong people here. I can't think of anyone on this forum who is the pathetic wallowing miseryguts you seem to be talking about.

Good for you to be such a breezy, pull-your-socks-up "shape up and fly right" sort of person; I think we're all allowed to live our lives and deal with our problems in our own individual way and don't need marshalling or lecturing.

Having said all that, sounds like you've got your pain issues sorted out by a very caring and excellent doctor. You're very lucky indeed.

All the best :)

This is exactly what I was talking. about where do you read that I accuse anyone of wanting to be ill???? In fact I have validated that we are and are mde to feel like it is our fault. The is no lecture but it appears to be exactly in the right place.

Just a little note here - For the Doc who thinks this is all in your head....I have a friend who is being told this same exact thing from an IME, the IME states that this friend has Munchausen....So I know EXACTLY what your going through right now and the frustrations. This IME was bought & paid for by the oppositions insurance company and this "diagnosis" (which btw he is unqualified to actually diagnose) was nothing but a sham!

My point is this...My friend had a MMPI aka psych test just a few short years before the RSD, she had to have the test before having a sugery. The Psych Doc then stated that she was a sound, stable individual and a good canidate for surgery and should have successful results as she had a good, positive personality and attitude.

SOOOOOOOOOO - Mr Joker Dr with the "it's all in your head attitude" and it's a "Predisposed personality trait" - Go Powder Your Fanny!!!

Do they do this with people who have arthritis!!!?? NO, because they can "see" it on a scan - Unfortunately it's impossible at this point to for sure 100% see RSD - Thus...the disbelievers....

How does your Dr explain such things as temperature changes, skin lesions, muscle spasms, things like that, that are symptoms/signs of RSD?

It really p*sses me off when Doctors do this to their patients. All it does is cause them further undue stress AND stress can make the RSD worse. Something someone with RSD does not need!! Again...best advice - find a real Dr and not this quack who obviously does not have the education or knowledge behind him.

I do have good doctors but my condition is as unpredictible and hard to manage as any of you. I got this at 3 after an accident. It ate my childhood and much of my adult life. I am on long term narcotic therapy and in and out of a wheel chair. I have 2 babies and my socks are never all the way up!

I agree hubby, those situations are what causes people to overdentify with illness. We have to live it to prove it. They need to help us live WITH and AROUND it!

Why does it matter???!!! Do you really want to be told that you have a psychological problem/ mental illness that caused your body to "do this to itself", and that you need psychological help? You would believe it if the doctor told you that you that you needed psych-help?

It matters because I need to feel 100% confident and secure with my Dr.. If he believes that I have a psychiatric illness and I KNOW I DON'T (my RSD started with an injury) then would you really tell me to stay with him anyway, even though I am uncomfortable??

Hi Mommyjen,

I don't understand what "causes people to overidentify with illness" means, could you explain, please?

All the best.

Hey,

This is hard one.

Mommy Jen - I can see to a point where you are coming from. However, I don't feel you phrased it in an appropriate manner. If what you mean is that it is important to try and keep living in the "real" world as well as the RSD world then I understand you. HOWEVER, I personally believe it is very important to have support from others who know what you are going through. I cannot think of a single person on this board who feels as you express. I have met one person like that with RSD (not from this board) and her symptoms were far more psychological than physiological - but it was shown by her and her doctors that she had conversion (went in to a mental unit and was walking within 2 days just through "normalisation" instead of physio etc.) However, this is very rare.

I developed RSD when I was 16. It is horrible to live with. I am now 21 and at uni. However, my "normal" mates have no idea what RSD is, they don't know what to say other than "poor you" which is something that I don't believe in. At the moment I am thinking of having a DBS inserted - most of my mates don't even understand what it would do - they are all for it if I want to do it, but they cannot understand the fear involved with messing with RSD and surgery. PERSONALLY I use this message board to enable me to be "more" normal. By talking to others with RSD I get the support I need and am then able to rarely talk about the RSD with my friends - who don't understand anyway (if this makes sense?). As you talk to people on here you get to know them and develop friendships - based on understanding and caring, empathy and support.

If I may be so bold as to ask, but if you believe support groups are so wrong.. then why are you here? If you were to look through the archives of this site then you would discover that some people get better, some people get worse, some stay the same... being a "support" group doesn't disable us, but enables us. Yes, we must live in reality, but at the same time, pain is all our realities and though you may have found amazing narcotic and social means to manage your pain some of us haven't.

Reality and the real world are important. But so is OUR DAILY REALITY of pain, suffering and disability. Several people on this site are house or bed bound through pain. I don't know if your RSD/ pain has ever been bad enough for this - but I know from experience that non RSDers don't understand this. They don't know what to say, though they want to visit they are scared they'll say the wrong thing, and after a while they stop visiting because they don't know what to say. you're the 17yr old sobbing in bed because you can't move and it hurts so much whilst they waited abit longer to visit because they still had hangovers from the night before.

If I woke up tomorrow and was pain free then I would do everything this RSD has stopped me doing. I would throw the wheelchair away, kiss goodbye to the carers and continue with my life. As would many people on this board. Is the relapse you are talking about a results of your own experiences? I have known people with RSD recover - and it is hard, there are psychological difficulties with adjusting to being more normal - generally to do with trying to pace themselves to AVOID the flares or deterioation in their condition - they discover that as they can run/ walk or whatever and want to do it all the time - then they are injured and back at square one.

I don't feel that many people on this site will appreciate this almost evangelical call to abandon other RSDers and pretend to be normal and let our disabilities work for us (that means I will soon be a circus freak - coming soon to a town near you - the amazing agonised pretzel queen) - it may have worked for you, it works to a small extent with me, but everyone on this site is an individual fighting their own battles. Have you considered that perhaps the thing that stops some people throwing themselves off bridges is that they are understood? That other people understand the agony, loneliness, fear etc of living with this? I am guessing from your message that you have never felt alone with this disease, never had questions and in fact must be an absoloutly amazing wonderwoman who can cope with all the emotional and physical aspects of this evil condition without help.

If so. Please share your magic ways with us so that we too can be cured, or at least cured to a point where we don't need support from others even if we still need wheelchairs and medication. If not, then please think in future about possible distress you may be causing people and that until you have walked/ rolled/ crawled/ been pushed a mile in another person's shoes you don't know what they are going through.

Frogga

ulcers are caused by bacteria, not virus......

This has really touched a nerve but I am glad people are talking. You all are inferring all kinds of wrong nformation from my post which I understand because of the tendancy to be defensive. I NEVER said support groups are wrong! I never said I don't support the idea. I did say for every support group you go to try to balance it with another interest. I am not accusing, singling out or denegrating anyone. If you notice I include myself in all of the pitfalls I talk about. Please really read the words and don't try to assign tone, we rarely ever do that correctly. Frogga, I happen to think you are a great example of keeping balance.:)

Being understood as a way of coping illustrates my point. That is the way in which you have made it work. You have found commerades in arms and that is how you spin it to to work and not kill you.

Where you are getting the wonder woman notion I have no idea. I spent 9 yrs being flown across country working with an intensive therapist and pain team on learning to live with this due to the severity of my condition. I do not need to pit my pain experience against anyone elses because it doesn't matter "who hurts the worst" You have done to me exactly what you claim to hate whe doctors do to you. You have be littled my experience as not as "bad" as the rest of you. I am only trying to expose another side of the coin that helped me find a little emotional peace. I have to imagine some else could benefit.

MommyjenppI am sorry for your RSD.

Perhaps . are you trying to say "focus on the things that you CAN do, and try to incorporate other people into your life, even if it is exploring a web-site about an activity that you can no longer do, but STILL interests you, rather than being in such despair and pain that it is tempting to isolate yourself from the outside world, in SPITE of the RSD?"

Brokenwings

Hello pabb: I know that ulcers are caused by bacteria and not a virus but did not catch the mistake until after I posted and was too lazy to change it. By the way, I make mistakes with what word to use quite frequently now. Last week my neighbor cleared the snow from my driveway and I called him and thanked him for mowing it for me.:o Regards, Lil

Mommyjen: Quote:"Sometimes the incentive to get better disappears because without the conditon we wouldn't know who we are or how others would know us."
That sounds pretty straightforward to me or have I somehow miscontrued your sentence?
Yes, it does matter what the doctor calls it because s/he will manage your case accordingly. You are in pain? No meds for you, just try to relax.:rolleyes:
The people on this board are supportive, caring people trying to help each other deal with our reality. No one here is trying to get the trophy for being in the most pain for the longest time. We just want to help each other. Regards, Lil

Mommyjen--Also, i would like to add: There are MANY people on this Forum who have had RSD for a long time; for others, they have just gotten diagnosed with it, or have had in for a year or two.

ACCEPTING and ADAPTING to ANY serious injury or disease, such as RSD takes TIME, and every individual handles it in a DIFFERENT way. Just because something is "different" does not mean that it is WRONG.

In addition, although I am relatively new to this site, there are ALSO numerous discussions of HOBBIES or other INTERESTS that people here on this forum have been engaging in, or EXPLORING. We are SHARING with each other OTHER POSITIVE activites that we have found that we are ABLE to engage in, in SPITE of the RSD, and hope that the information may be of use to others.

Unfortunately, some of the individuals on this Forum have PERMANENT impairments, either from actual damage to their ulnar nerves, sciatic, nerves,thoracic complex, etc., in ADDITION to their RSD. Even IF the RSD was CURED, they would STILL be left with a disability UNRELATED to the RSD.

Nine years is a LONG time to adapt, and it is wonderful that you have a found a way to do so for YOU, given the severity of your condition.

For others, they are just beginning to find ways that works for THEM, and their UNIQUE circumstances.

There is no "right" or "wrong", just DIFFERENT.

Brokenwings

Why a good quality knowledge Dr matters
 

You should definately not stay with a Dr your uncomfortable with...

ALSO - Mommyjen - First a question: Has anyone ever doubted your condition or pretty much called you a liar?

Until you have it happen to you and someone accuses you of something like Munchausen OR your are faced with family or friends who are disbelievers OR a Dr who thinks its "all in your head" you have no idea what it feels like to be attacked like that. You question yourself, your doctors, your sanity, and your character is attacked. To top it all off and this is probably the worst - Good quality medical treatment is delayed or never done at all. It is a horrible position to be put into.

So, It DOES matter what people think. How else can you get adequate treatment?! How will you be treated by others out in public? Will your physical needs be met? (Pillows for your arm at the family birthday party...Special seating at the restaurant for you to have a little more room for your leg...A ride to the Dr because you are feeling miserable that day...these are just a few examples)

RSD is something you cant see....Like I said - Do they attack, judge or question people who have Arthritis? MS? Epilepsy? Lupus? Diabetes? NO they don't because they have found the cause, root of the problem or you can physically see the issue. Why do they do this with RSD?!!? It has been MORE then proven that RSD is NOT a psychological disorder....yet their are still these ding-dongs out there who keep on trying to put of off as someone being "dramatic", "faking", "lying", "has a pre-disposed disposition" - It makes me want to GAG!!!

People who have this condition need to have compassionate, caring people around them. Understanding people who will work with them for a positive outcome. A Dr who wants to say "it's all in their head" is nothing but a thorn in the patience side and will do nothing but bring them down. Thats why it's important to have a Dr who is knowledgeable, understanding, compassionate, listens, wants to work with the patient for the best possible outcome and one who BELIEVES the patient.

My husband and I have talked about this often....He can not wait for the day he can go back to work. It has killed him to have to rely on me for financial support. He has always been a proud individual, one who provided for his family. He wants it back that way....He stays positive even tho this is our 2nd round with RSD (which was a major shock - we never thought it would occur from this surgery on his arm). He is preparing to go back to school, as he realizes the use of his arms could be limited, he will probably never go back to his previous work and he does not know how long this will last...We keep hoping for the same results as his leg - Where he is not completely pain free but is at least functional. He is not homebound, and even when it hurts like h*ll when he's having to take pain meds just to function, he still volunteers/works with the youth in the area in two different things, he attends church, goes shopping, and goes to our kids school functions, etc. RSD has not and will not completely take over his life.

He does not wallow around in self-pity - He works hard at his physical therapy, does his home exercises, is taking action to ensure the best results for his future, and remains as positive as possible. Some days it's tough - but he does it because thats the type of "pre-disposed personality or disposition" he has.....

hubby
 

I have such respect and compassion for your husband. He is trying to do the dance and believe me it will serve him so well. You sound like you walk right beside him. My husband is like that. I too miss what I wanted to do for work but I havae found a way to have my dream job! I sell antiques literally from my bed! LOL I started the whole thing with 100.00 and now I have a house full of interesting fun things and a prorfit each month. That kind of activity for my mind is crucial. RSD can;t get near my business. That is where I find the me who isfighting the pain and medications. I can be bright and funny and I can be successful every day. I pray your huband finds that place. Walk beside him and I can ever help in an way just ask.