This is my very first post here and I just found this board a couple of hours ago. I have been reading like crazy and I had what I felt was a horrible experience today with my current doctor and the need to "vent" to people who could relate, understand, offer advice...whatever.

This all started about 6 months ago when I banged my foot on a steel plate at work and had several boxes fall on my head. Obviously the first concern for everyone was my head. I could hardly move my head at all side to side, up or down for a couple of weeks. But I kept telling the doctors how much my ankle hurt. They kept looking at my foot and saying it was fine. Finally I convinced them to start me on phystical therapy, but when I got to PT I found out they only sent me there for my neck. I forced the issue and we split the time between neck and ankle, spending more time on the ankle as my neck improved. I kept telling them how much my ankle hurt...I couldn't walk. They said put MORE weight on it, try to walk without the crutches. Did that and pushed myself to the point of not being able to walk at all because the pain was too intense. Mind you, I was working this entire time as a retail manager, struggling to try to do a job where I normally spent 9 hours at least on my feet a day without walking more than I could handle.

After 2.5 months, they said they didn't know what was wrong, couldn't help me, and sent me to someone else. During this time, while trying to get ready for work one morning I stumbled a little and put full weight on my left foot (the bad one). Passed out from the pain and ended up spraining my left wrist. Got a referral to an orthapedic. Wrist got better, ankle not at all. Got a cortizone shot. No help at all. Referred me to a pain management specialist, who I am currently seeing. He is the one who first said I had symptoms of RSD.

All this leads to my current frustrations from today. I FINALLY got approval from work comp to get a lumbar sympathetic block and I got it today. I was so optimistic...after a month of waiting and being put off I would finally get this procedure and that would "cure" my pain. Err...WRONG. It didn't help with the pain at all. I actually have more pain at the moment. I had read a lot in the past month or so and I was aware that there was a chance that my pain would not go away or that even if it did it might only be for a short time. The doctor didn't tell me any of this, I had to look for it myself. But whatever...I can deal with that. It's frustrating...but I can deal. I was all prepared to ask him what the next step was and where do we go from here. My frustrations...the big ones...come from the doctor himself and his attitude.

His first statement when he sees me today prior to the LSB is about how I put him in the middle of this nasty litigation. Um...I'm receiving work comp benefits and I have a lawyer and there has been some nastiness towards me...but what on earth is he talking about? He's the fricking doctor and he is responsible for my care and making me better. The "litigation" as he terms it has nothing to do with him. Okay...weird comment...but I tried to ignore it and he talked about my pain and then went into a description about how this is a really "formal" procedure with pictures taken by the CT machine, etc. Again...it's all about the lawyers...not about my care or how this is supposed to help me. Whatever...go in for the procedure (which they completely knocked me out for).

Wake up and they ask how my pain is. It's the same. I move my foot up and down and OH YEAH...it's the same. Just as bad as ever. So they take me to the room to recover. What's your pain level they ask. Same as before. Doctor calls the nurses on the phone and when they tell him that he says he will be right down. 30 minutes later I finally see him and he goes over with me how the procedure was "textbook" and I have all the signs that it "worked" so now he's not sure that I have RSD. He says he'll see me one more time to try a cortizone shot in my ankle but then he's done with me. DONE WITH ME! OMG! I was just shocked.

I finallt have a doctor who gives me a diagnosis for my pain and all these weird symptoms I have had since the beginning. Leg is cold from knee down on my bad leg (all the previous docs ignored this and said it was just a circulation thing), hurts to wear a sock, is impossible to wear a normal shoe, tiny vibrations hurt like all begeezes, can't sleep, have burning pain all the time and deep pain regularly. I know these are not all the possible symptoms for RSD, but I don't think you have to have all of them. If this is not what I have, then what's wrong with me? Something is. And work comp forced me to go for an independent medical evaluation where they picked the doctor and he agreed that it was CRPS. Now, after apparently being harrassed by work comp lawyers and such my doctor is "not 100% convinced" and he's done with me. But in the next breath he cautions me that if I see a doctor and he wants to cut me open to surgically fix the problem that I should absolutely refuse. If he doesn't have a stong belief that I have RSD, then why would he say that?

I have been crying now for a couple of hours because this is so frustrating. I have read up on RSD...I believe without a doubt that is what I have. I am still going to PT (although at a different location than the first 3 weeks that I did at the first hospital because that was useless) and I will continue to go to PT. The doctor even wrote me out a perscription for continued long term PT. I will continue to try to push through the pain, but I need some relief, no matter how small from the pain. I have lidoderm patches...they help a little. All the meds I have tried do not help at all. Electonic stimulation at PT seems to help...but it helps less and less each time I go.

I want to work with a doctor who will help me achieve my goals of overcoming this condition so that I can fuction at least semi-normally. I have been off of work for a month now. I want to go back SO much because I miss it. I miss feeling like I am accomplishing something each day. I miss the social interaction. I truly love the work that I do and I just miss doing it. But there is too much pain and I cannot stand/walk for more than 10 minutes at a time...and even that is hard. When I get in my car after PT...I cry. I can't be that way at work. I can't run a building and be responsible for all the people in it when I can't even think straight because of the pain. I can't do the demanding physical parts of the job. So what am I supposed to do?

I just feel so distraught to have another doctor who has failed me. And what's more upsetting is that I feel like this is someone who could help me but who won't because he doesn't want to deal with the work comp people. I have a hard time standing up for myself when I am with a doctor, or anyone that I don't know or am not comfortable around. But I really want to yell at this guy and tell him to grow some fricking balls and just tell whoever is "bothering" him about me that HE is the doctor, not THEM, and that they are not qualified to question his medical decisions and assessments. They got another doctor to "assess" me and he confirmed my doc's disgnosis. So that should be the end of it. Treat the patient, that is his job, and he should tell these other people to just buzz off. Of course I CAN'T say that, it's not who I am, but I WANT to. He mentioned some other doctor who I believe he is going to refer me to. I think before I go in to see him this "one last time" I will try to see if there are any good RSD docs in the Chicago, IL area and mention the possibility of a referral to them.

Sorry this was so long, but I was just REALLY frustrated. Even just tryping it all out makes me feel a little better. Tomorrow I will try to regroup and get all my thoughts in order to figure out where to go from here. Bottom line is, I do not want to give up on myself. I know that is crucial to my recovery and I have to keep reminding myself how important it is. Thanks everyone for the opportunity to vent out these frustrations.

Welcome and we all are glad that you found us. I am so sorry that you have had to go through all that you have. You will find that you are not alone and that is the most priceless thing about this board. Keep your chin up and we never get upset with long venting posts...

Cindi

I know how it is with doctors. So just hang in there and don't give up.

Ruby

It is comforting to know that someone else out there is going through a bit of what I am. I am sorry to hear your Doctor has no bedside manner whatsoever. Regrettably my injury occured away from work and my disability insurance is saying I can go back to work and they are going to cut my benifits. Although my doctors and my job won't let me go back. I had 2 heart attacks and open heart surgery and quite frankly it was easier to deal with than this CRPS/RSD junk. I told the insurance company to send an investigator to my home and I will let him/her see my left leg and foot change colors, it is visibaly painful looking there is no mistaking that I have a problem. They of course wont do that. I hope things start going better for you soon. BTW my LSB's are not working either. Nothing seems to take the edge off the pain.

I'm sorry to hear you are going through so much.

Since this Dr. is dumping you, look at it as a blessing to find a good one. If you already have a diagnoses of RSD then when you see the next Dr. make sure you let him know that you are diagnosed with it.

It is hard to stand up to Drs. I dealt with that at the University of Colorado and to me when they have the Godlike attitude then their thinking is that they are never wrong.

My husband went through what you are talking about too. He had a WC Dr. that diagnosed him with back problems that needed surgery and when Bill went to a hearing, the Dr. said he'd never even seen him. Wierd.

You might try and find a PM/Anesteologist. They are usually pretty good on RSD.

I hope you can calm down where you can do what you need to do to find help.
When I first got RSD, I couldn't function enough to take care of my disability. If I had, I would have had it sooner. It's very hard to function with being in so much pain.

Read all you can on the RSD. One thing you might ask for when you do see the next Dr. is for some good meds to help with the pain to get you through whatever you have to go through. I realize most meds don't completely do away with RSD pain, actually none of them do but do try to get something that helps some. I have taken Methadone for years and like it but you might find others that work for you.

Stick around here for some of the support you need.

Ada

catra121, sorry to hear another human being with RSD is going through this! I'm a husband of wife with RSD and she struggled the same as you are now. She kept her condition secret from me for almost 2 years and that was 8 years ago. It got so bad for her because she was rejected by several doctors many who diagnosed her. She told me everything what was going on then I got involved and saw the treatment she described first hand and was shocked!
My advice would be to gather support from family and friends and have an advocate go to the doctors with you and speak up for you if possible. The other is vigorously find another doctor and keep doing this until you find one that will help control the pain. It is very important to get the proper treatment now. Be very careful about invasive procedures. Be leery of any doctor that wants to cut. Check to make sure you do not have trapped nerves because there is the possibility trapped nerves can mimic RSD.

My belief, why doctors act the way they do, is because of the nature of RSD, the DEA and insurance companies. Doctors fear the DEA, insurance companies will only allow doctors to do so much with limited resources dictated by the insurance company in which doctors have to abide by in their contract. Even though these are my opinions there is no doubt doctor's behavior is predicated on other forces other than the patient.

Just wanted to say thanks to everyone. I am MUCH calmer today, although still angry with the doctor. He is a PM/Anesteologist doctor and that is part of my frustration. I feel like this guy CAN help me, but just doesn't want to. I guess if that's the sort of person he is then I wouldn't want him treating me anyway. My mind has been spinning all night and all this morning about what I need to prepare for my next visit so that when I leave I have all the referrals, notes, etc that I need.

I am really grateful that I found this forum because I am making a list of what different people have found helpful. I do not know what will work for me to help with the pain, but I want to get started trying to find whatever it is. I am currently taking several things, but they do nothing to help. I want my doctor to take me off of those next time I go in. I am very scared of pills and I do not want to continue to take things that do not seem to help. The first docs I was going to kept me taking vicadin and IBpreufen for months and they didn't help at all so I finally just stopped taking them. What's the point if they don't help, but you would think that there were no other options out there the way the docs acted.

My back is KILLING me today, but I assume that's normal after a LSB. I can't stand anything touching it in the entire bottom left portion of my back and bending over brings the tears on big time. I know it's crazy, but I keep moving my ankle through exercises trying to "will" the pain away today. I really wanted the LSB to work, but no matter how hard I want it, that doesn't make it a reality.

Right now WC is refusing to pay me for my time off even though my doc wrote a note to take me off of work. My lawyer says they have no legal right to do that and there is a hearing in the beginning of Febuary for me to get my 66.6% pay. I hope that comes through because I really want to join a fitness center so that I can continue to do some of my PT stuff on a daily basis (like the treadmill and the bike). But I can't afford to unless I have some money coming in. I do everything I can do at home at least once a day, twice when I can, but I want to take as much control as I can of this thing. I have managed to keep enough function that I can walk short distances and stand for very short periods of time...but the pain is just do awful. I'm extremely stubborn and I will not give up on myself. I am 26 years old...and there are so many things that I want to do in my life. I know it's going to hurt, but I just want to keep pushing to make my life as normal as possible. Easier said than done, but I just keep convincing myself that it's the right thing.

I have very bad days where I find myself spinning out of control, angry at the world, and thinking that I will never be able to enjoy anything ever again. But those pass and I talk myself down. I run an online cross stitch board and the women on there are wonderful. They have been so supportive in letting me express my frustrations, and they share my joy in stitching which is thankfully something that I can continue to do with RSD in my left foot. It's not a very active hobby, however, so I find that sometimes I need to put it aside to keep myself moving. I try things like drawing the alphabet with my toes while stitching to keep moving. I haven't been able to concentrate much thought the past few weeks and I'm not sure if that's just because of the pain or if it's related to the meds or the fact that I am cooped up alone in the house a lot or a mix of all three. Can't sit up today so I won't be doing any stitching today unless the back feels better later. But I am currently trying to reread the Wheel of Time series by Robert Jordan and have also started reading the Angel: After the Fall graphic novels so I do some reading today.

Thanks again for the responses!

I'm dealing with alot of the same w/c problems right now to. The only thing I've done that might help is have your physical therapist request work comp to get you a take home TENS unit. I'm undermedicated lately and thats been the only thing keepin me semi-sane

Welcome to NT

It is a long intro but I don't mind reading your venting at all.

It is frustrating, and will continue to be.

RSD is hard to deal with. I'm sorry you have to deal with all this. You're not alone here.

The realities of anything but healthy and able-bodied are not pretty. I don't think this world was desiged with challenged people in mind. It's a hard row to hoe.

Never give up on yourself. Be wise to risks versus benefits. It can be made worse.

Give your injection time. It's not a quick fix. My pain management described it to me like "peeling the layers of an onion away" I had so many pain problems overlaying and mixed up together. It took a LLLOOOOOOONNNGGG time. Trial and error.

I do have bad feelings towards a few providers. I'm still working on that. It does help to vent. I still want to confront one doctor before he or I one dies. So I do identify.

Be aware that you shouldn't put anything on the internet you wouldn't want the whole world to see. The defense lawyers sometimes ask for internet correspondences concerning your claim. So, in your case, they wouldn't want to show a judge that intro. It's so believable it would only help your case. I guess it's your first time dealing with WC and doctors and claims. It can be very stressful. Be strong. You have to, to get through the process, and it is due process.

For now, a dairy to help keep up with things may help you to realize your current status and later look back to see progress, if any. List your meds and when and how you're administering those. There are techniques to taking and apply things to get the most benefit. Ask questions. My favorite doctor gave me horse liniment (DMSO or DSMO or something) to apply for 12 hrs and then shower and apply a Lidocaine patch. This was to help the skin open up to allow the lidocaine to penetrate deeper. He even made BC/BS pay $20 for it. I'm amazed at that.

More and more, it seems like doctors are not going to stand up for injured people. It's just a fact. It sounds like your current doctor may be a good doctor but would rather not testify or be involved with WC. Defense lawyers do put them through a lot, and they know how to do that. Try not to take these things personal. The system sucks, my friend. You may find better care under a doctor who will take on WC patients. They do understand that side of your problems.

I've had bad experiences too. I've heard the dopler beep and then go silent when I would raise my arm above my head, but his report did not reflect that. Comment handwritten to the contrary-not a doctor's handwriting either. Ummm. It will make you mad. and that makes 2 doctors that I consider gave me cruel care. and that's not counting the ones who didn't want to deal with car wreck patients. You'd think we had the plague or something.

You need to consider your options here. Disabled social security is for people who do not believe they'll recover within 1 year. It's not something you want to think about, but money don't grow on trees. If you need it and you qualify, you may want to assert that too. then when you get better, there's the ticket to work program and other things that allows you to get back into the workforce. I hope you don't need this option.

It seems legal problems are parallel to medical problems, thus creating financial problems in these situations. You're not going to like any of it. I still cry over things. so don't feel bad toward yourself. It is bad stuff to have to deal with and go through. Again, you're not alone here. We do understand.

The best you can hope for is to find an understanding doctor/medical providers that will work with your goals for recovery and support your claim. You have a lot to deal with. Get organized, keep receipts. Ask questions.

And for 7+ years, in the early hours of my painwrecked mornings, I would find darkness, my dog and God. I'm doing much better but I could have done without all of it.

It won't always be this way, but for now you have to do what you have to do. Just be careful and knowledgeable.

Hi Catra,

Welcome to NT !

Your story is familiar in so many ways. Most of us have also been through MULTIPLE docs just trying to find one who will listen. Finding one who can help seems to take even longer.

I admit I don't know much about the lumbar blocks. My main pain is like a burning glofball just to the left of the cervical thoracic junture, and the ache/heaviness goes to my left neck/chest/arm, so I've had a few stellate ganglion blocks. The way to tell if they got it in the right place is if you have horseness and eye redness/droop. If it lessens the pain (which can take a few days for the steroid to kick in), then it is said to definitively dx that rsd is present, BUT the lack of pain relief does not mean that rsd cannot be present.

I'd be leary of a doc who said the results PROVE that it isn't rsd before the steroids even had a chance to kick in. Reminds me of an ignorant pm doc I once saw who told me I couldn't have TOS because my main complaint was of the neck pain.....he said if it was TOS ALL of my pain had to be in front at my collarbone.

Have you been able to find a good neurologist ? A neuro who works with rsd patients might be able to point you in the direction of a good pain clinic.

Hang in there. I'm 5 years into the struggle and still looking for answers and the right medical help.

Finding NT literally saved my sanity a few years ago. I hope that you can also find comfort in knowing that there are others out there who understand....even if we can't 'fix' the problem for you.