Reflex Sympathetic Dystrophy (RSD)

[Raindancer10]

I have been told I am meandering, been under surveillance, IME's produced pain and was badgered to death to continue or I would be told I'm being uncoopertive. I have complied with everything that a doctor has ordered, attended all appointments, tried to be normal and retain my being. My existing attorney fails to listen or advise what to do to in regards to tests and appointments and I'm feeling like I've done something bad. I've only done everything possible to maintain myself where I was at before this diagnosis. I have no help and no family. I have no maid, nor is the man I am with totally undestanding. This news now is driving me crazy. I don't even think my attorney knows hat rsd is or the dang insurance company, I was sent to a neuroligist/accupunturist because I was tired of the drugs and the didnt qualify for a pain stimulator. I drive, I cook, I even ride a bike because I am afraid of losing my strength in legs and back and the mental break helps. The wind on hand and wrist can be intolerable. But they dont see that. Now i have to wear clothing that rubs on it. I don't sleep at night and this now is not what I considered normal before my accident. I am contemplating a major move south just so i dont have to wear winter clothing that chafes me. I have spent out of pocket on tests to prove my viability as to all my pain. What do these x** really want from me. Has anyone experienced this. I need a good rsd doctor but they all say yes the doctor deals with that only to find out they know nothing hardly. My existing neuro says its hard to treat..maybe most 20% improvement is all I will ever see. Then a pain specialist turns around and says we have seen cases turn around 18 years later. I'm 57 and does that mean when I am dead in my grave? This state is horrible as to insurance and WC. How do I get them to believe that this is severe enough that I can't work. If I did something they think is proff how do you get them to see the pain. I use as much diversion and challenge every day as to what this is doing to me. I have to sleep to check out when i just cant go any furthur. Then find I can't even do that like normal people. I'm taking pain meds this week and know the stress will really make this flare up.

[Truth Seeker]

Raindancer10,

Over the years (13 plus,with RSD) I have learned, that I am the only expert as it pertains to "my" brain and body, no one but I, feels my pain, my symptoms and sensations, than why would I want to allow anyone else to rent space in my head.
If, blood was gushing out of our system, we would find medical help anywhere, but RSD is almost like an invisible disease, yet it is internally destructive.
RSD clearly is not understood, which appears to give some the right to believe, that this disease is real in our head only, such people can only be pitied for their own stupidity.
When I was diagnosed with RSD, my fear of the unknown was greater than my physical pain, at least at first, because it was spreading and changing so quickly, that it was impossible to comprehend, but even more difficult to communicate.
In the beginning, I tried to pull myself together so I would sound logical during my doctors appointments, but that only threw the power into their court, resulting in the most devastating insults to my intelligence.
If we show emotions, we are labelled as weak or delusional and if we show anger or frustrations, than we appear to have an attitude problem.
There were many times when I wanted to stick my injured foot into the doctors face, so he could see the drastic changes, rather than letting his own imagination run wild based upon what I was saying.
I am thankful, that I had lost all of my physical strength or some of these doctors visits would have played out differently.
Kicking us while we are down and out, will be pressed into memory forever, that is for sure.
We all have different pain levels, I had always known, that mine was very high, just like my fathers, but nothing on this planet could have prepared me for pain of this magnitude.
It has been said, that God does not give us more than we can handle, but I can assure you, this is deadly wrong, until or unless we reach out to HIM.
Our life will never be the same, it will be different than before RSD, but that can be a good thing in the long run.
I look the way I have always looked, except a limp a little, more when the pain is high, after all of these years I still cannot wear closed in shoes, still have trouble driving a car ( longer distances).
The benefits are ( at least in my case), my eyes and mind are wide open, more than ever before, I appreciate the power within the brain and all of its untapped resources, I found out what I am made of, but most of all, I learned what Faith is all about.
Science and history used to bore me, now they are a big part of my life.
On the negative side, I have lost many years of my life, crying has become difficult, friends and family look at me differently, because my thinking has changed completely, I have lost all trust in doctors, I fear their lack of knowledge and delusional power, financially I have taken many hits and losses.
I am sharing this with you to say, you are not alone, you will survive, but caution whom you trust.

Truth Seeker

[Raindancer10]

Dear Truth:

You are so logical and understanding of this. I cried tonight because people in here do understand and have given me more insight and support than any doctor at this time. I tend to believe I am not going to change anything Im doing ...if I do I have lost the battle. I really need the stressors to stop though. My doctor sharing the knowledge of surveillance ...hahaha welll i want to make sure they get some more for I have nothing to hide. Anything I am doing is just to maintain my independence to a degree and to function. I plan on tomorrow finding a neuroligist that can say yes this is real and no I believe you. Let me help if I am willing. Doing everything has kept me from losing muscle. My mind is tiring though. Im also going to seek opinions as to my attorneys lack of understanding of what is happening. I use to laugh now I narl, Im short, Im frustrated I'm tired...yes Im angry too. I am going to pray that God has total control and rely on my trust in HIM. I surely cant trust anyone else.

[penney]

Dear Raindancer I also cry from the pain night after night! I cry because why do WE have to go through this hell on earth! I cry because it is not just my foot and leg it is my life! I cry because I get on this web site and someone who I don't even know can say to me I understand. That means so much to me! I have learned so much more from people on here than from any Dr. I had to go back to my family Dr. and let him see my foot for any thing to be done about it. My specialist (surgeon) just kept on ignoring what I was telling him and what he could clearly see. My family Dr. ordered xrays and a bone scan the same day I saw him, I was told by an RSD group that it was to soon to show up on a scan but to do it anyway for future comparisons, but they were wrong there it was my whole foot and ankle, I could see it while she was doing the test, and I thought dear God let this be just a bone infection, but I was'nt that lucky. My family Dr. said I needed to go back to the specialist so he would know what was going on, I did'nt want to but I did, he could not ignore it any longer there it was in black and white. So he sent me to a neuro. Dr. I saw him on Monday as soon as he walked in the room he said ok I don't do feet. (He also told me that it cannot spread I explained to him that it sure can, that there are several kinds, it can just continue, that there is a mirror type image. Then I thought forget it I know more about this than you do!) I thought of course you don't thats why my surgeon sent me here. And like you I am VERY ANGRY now! I have checked around and found a neuro. Dr. my self I will see him on Friday and I hope he is as good as everyone say's he is. I pray for you and everyone who has this monster. God Bless You and good luck Penney

[reruho]

Penny,
My symptoms started 2 weeks after my injury. I was in a cast and I kept telling myself I can do this for 2 more weeks. I was also thinking of ways to remove the cast, what tool I would need and how deep to make the saw blade. I called the ortho's office to complain about the burning and swelling and I was told to take Benadryl because my skin was irritated by the cast and to elevate my arm for the swelling. At each and every appointment over the next couple of months I had the same complaints and was asking, "When will this end?????" At every exam the ortho would say hmmmm and scribble a note in my records. He never had an answer for my question.

I went to see a surgeon for another problem and he told me what was wrong. He told me to look up "RSD." He also told me to ask the ortho point blank, "Could this be RSD?" I googled it that night and there was everything, all the symptoms that made no sense because they seemed unrelated. 2 weeks later at my last ortho appointment, I asked the ortho my question and he said yes and shipped me off to pain management.

Sometimes, I wonder how long it would have been. I know it would have only been a month or two later because my primary started asking about my arm. I had gone to him for pain medication. He was ready to send me to a neurologist when I told him it was RSD and I was on my way to pain management.

Reta

[penney]

I have been seen by a foot specialist, 2 neuro. Drs. and no one has sent me to pain management yet. I think PT would be alot easier, and just everyday stuff that I try to do here around the house. I'm so wore down I'm ready to give up! Wish you the best Penney