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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 11-10-2008, 07:08 AM   #1
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Just diagnosed with CRPS

Hi all,

I was just diagnosed with CRPS 2 weeks ago. Crappy deal. And what pisses me off the most was that it should have been diagnosed a long time ago.

You see, 17 months ago I turned my ankle in some water at work and it never healed. I spent over a year on crutches not understanding what was wrong with me. My original ortho said that there was nothing wrong with my ankle and that it was all in my head. Even after I started at a new physio all they would tell me is that there was nothing wrong with my ankle and that it was all in my head. I know my body and I knew that there was something wrong.

I asked for a second opinion and I finally got in to see him 2 weeks ago. He looked at all the test results that I had gone through, and then he did extensive testing on my ankle and was able to confirm that it was CRPS and that it has been raging out of control for far to long. On top of that, there is mechanical issues that should have been delt with 17 months ago that never were and that is compounding the problem.

It has been a fusterating 2 weeks for me. We don't know if we are going to be able to get the pain under control any time soon, we don't know if my new meds are going to work. My new ortho is referring me to a neruologist for further testing to find out how far spred the damage is at this point.

He wanted to do surgery, but with the diagnosis of CRPS we know that that is out of the question.

It is fusterating because no one wanted to listen to me when I said that there was something wrong and that my ankle was not healing the way that it should have been.

How do you deal with a crappy situation like that? Has anyone ever had to deal with something like this?

 
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Old 11-10-2008, 05:31 PM   #2
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Smile Re: Just diagnosed with CRPS

Hi and welcome to the board. Your story of being diagnosed far after you should have is very common. I've read of SO many people who that's happened to. I had RSD for 3 years before I was diagnosed. That was back in 1986 so I guess I can understand that a little more than I can that it's still happening to people. Back then, not as much was known about it as there is now.

I'm very sorry this has happened to you, but just know that you are NOT alone. I hope that makes you feel a little better. Hang in there.

Sharon

 
Old 11-10-2008, 07:52 PM   #3
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Re: Just diagnosed with CRPS

Your story among us rsd'ers is far too common. We know something is wrong but told it's "all in your head" or are called a drug seeking junkie. That was what my ortho called me, he was the one who dx'd me to begin with!

As for being unable to have surgery, the good news is with the proper precautions before and after one can have surgery successfully with no spread or flare in pain. I've "seen" quite a few people around the web that really needed surgery for one thing or another and were fine. Have an epidural catheter with local anesthetic with or without pain meds at least 12 hrs before the surgery, then have the epidural in for 3-6 days after surgery to prevent a flare and hopefully any spread. When you keep the sympathetic nervous system "normal" it won't spread because the nerves don't flare up. All of this of course means a hospital stay of 3-7 days even for something that might be an outpatient procedure but it sure beats the heck out of what might happen without all the precautions!

I hope this helps you out! Welcome to the board but sorry it has to be because of rsd.

Hugs,

Karen

Last edited by Gaollan; 11-10-2008 at 07:57 PM.

 
Old 11-10-2008, 09:36 PM   #4
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Re: Just diagnosed with CRPS

I do agree this happens to so many of us.

It is good you are seeing a neurologist. Either one or a pain management specialist is the best you need to start proper treatment.

Good luck hun and my thoughts and prayers are with you.

 
Old 11-10-2008, 11:30 PM   #5
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Re: Just diagnosed with CRPS

The more I learn the angrier I get. Why me? What did I do that was so bad?

Right now we are fighting to find the right med's that will help me pull this thing under control. The biggest problem that I have right now is that most days I can hardly walk. I am lucky in that because this is a work related injury, I am covered by worker's compensation. With how much pain I am in all the time it is very hard just to get through normal house work. What used to take me half an hour is now taking me upwards of three or four hours.

I am currently on about 200 mg of Demerol a day just to try and control the pain, but unfortunently that is only working to control the pain caused by all the other damage done to my ankle. It is not really helping with the CRPS pain.

One of the things that I miss the most, besides being able to live a normal life and go to work every day, is sleep. I don't think I have had a good nights sleep in the last 17 months. But, I am thankful that I know what the problem is and that I know what the next steps have to be.

Has anyone ever had some of the damaged nerves removed from the affected area to help with the problem? My ortho has said that this may be an option but I am sceptical as to if this would really work and if it is such a good idea. I had a nerve cut in my left knee and I no longer have feeling in that area. My concern is that there could be more problems from removing the nerves then I have right now.

 
Old 11-11-2008, 12:14 AM   #6
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Re: Just diagnosed with CRPS

Sounds like the doc is suggesting a...I think the word is sympathectomy. That is a REALLY bad idea!! I've known some people who had it done. In all cases the pain came back even worse than before and they also had it spread rapidly throughout their body. It's certainly not something you should even contemplate doing.

As far as work comp goes, watch out. If you don't have a lawyer yet, you may very well need one soon. A doc telling them a patient has rsd is like a cuss word. LOL They start denying things left and right and generally try to screw you over. I was a wc case myself. Thought I'd mention it now in case you haven't gotten to that point yet.

Hugs,

Karen

 
Old 11-11-2008, 10:02 AM   #7
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popstarrdiva HB User
Lightbulb Re: Just diagnosed with CRPS

I am so sorry to hear about your long and painful 17 months. I too would be really angry and frustrated. I was lucky and diagnosed quickly. They set me up on the protocol treatment, but 2 things they missed were antidepressants and nerve pain drugs. This left me in a bad place for 5 months until they figured that out. Just hoping to spare you more frustration. Also check out Dr Hooshmand on the web. He is a retired RSD specialist who also wrote a huge book available at bookstores, usually custom ordered. Hang in there. Hopefully they will find some treatments to help you feel better soon. Also, make sure to educate yourself as much as possible. They wanted to do a chemical sympathectomy on me. Had I not researched I may have done it.

 
Old 11-11-2008, 11:15 AM   #8
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Unhappy Re: Just diagnosed with CRPS

This is my first post on this board, I have been reading it for a while but never felt compelled to get involved until now.

I was diagnosed about 2 months ago with RSD, 2 years after the injury that tore my rotator cuff. I have had 2 surgeries to repair my shoulder. I was lucky that my ortho recognized the signs last June and referred me to a pain specialist right away. My pain doc treated myofascial problems for 3 mths before he formally diagnosed RSD. He said at first that he was not sure if the myofascial issues werre causing the CNS pain or if it was the other way around. In any case, he has perfomed about 40 trigger point injections in my shoulder and neck which don't seem to work for very long.

I am a WC case (I'm a CPA, and I hurt myself carrying a really heavy workbag). I hired a lawyer within a few months of my injury. Even with the assistance of my lawyer, it has been very, very difficult to get services approved since the RSD label was used. I am still waiting for reimbursement for some of the drugs I take.

I am still working, but some days are really tough. My RSD is in my shoulder and causes excrutiating pain at times in my neck and my head. My hand is mostly OK, but I can no longer use it to do much or it causes my shoulder muscles to spasm which causes the neck and head pain. It gets tingly and numb but has not puffed up much or changed color.

This whole episode has been a real nightmare for me and my family. I just turned 48 and have 2 teenagers to educate. I am not comfartable telling people at work that I am sick (after all, I was out for 2 surgeries already). Who wants to hear that I am not better? When the head pain hits I can easily understand why there is a high % of RSDers who commit suidcide.

It is nice to know that there are others out there like me. I have looked for a support group in the RI area, but have not found one close by. If anyone knows of one, would you please let me know?

Sandy (from RI)

 
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Old 11-11-2008, 06:04 PM   #9
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Smile Re: Just diagnosed with CRPS

Hi Sandy,

I just wanted to say "hi" and welcome you to the board.

Sharon

 
Old 11-11-2008, 10:21 PM   #10
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Re: Just diagnosed with CRPS

Hi Brita and Sandy,
I just wanted you to know that the support here is life-saving, especially at those moments when you feel overwhelmed, angry, and even afraid..

We have some things in common: mine was an ankle injury two years ago with surgery in Feb. of this year, followed by a re-injury in May..I am working full time and this is a WC case with the waiting game of getting treatment approved...
It is increasingly painful to walk and I barely make it through the day..shopping, etc. is out unless I use the handi-cap cart in the store...my life has changed...I have had in the last two weeks several injections to the ankle that have helped a lot with pain..I take neurontin three times a day....
I am taking a day at a time and hope that my new foot specialist who is really trying to help me, can find a way to bring resolution to the pain and the complex regional pain syndrome...
I try to stay hopeful..I have purchased some chronic pain C.D.s that deal with meditation and relaxation and support and find them very helpful, especially at night when trying to fall asleep (I use little headphones)

I have shared my situation with people at work and they are so understanding and that helps me through the day...I wouldn't be able to work and pretend that everything was OK and that I just had a "sore ankle"...
So let's be hopeful together and I am wishing you good thoughts.....Take care, friends

 
Old 11-12-2008, 07:34 AM   #11
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Re: Just diagnosed with CRPS

I am lucky in one way, I am not being forced back to work right now. I have pretty much been told that until further notice I am being put on long term disability through WC. We know that the CRPS has been moving through my leg. I have had knee surgery on both knees to correct other problems and my right knee has been bugging me again and upon looking at it my ortho realized that it was being affected too.

It is hard and fusterating. I have been reading any and all information that I can find online dealing with CRPS/RSD. And I know that I have a long road to recovery. One of the big things that I have come to realize is that I am in a hard place. The longer it goes undiagnosed, the harder it becomes to control. And I know tha 17 months is a very long time in the scope of things. I am just hoping that can get on the right combonation of drugs to get it under control so that I can deal with the mechanical problems.

I don't know what is the worst, the pain or the fusteration that I know that there is little that I can do about it right now. I keep going day after day and it just does not seem to get any better. Most days it is a struggle just to get out of bed and try and get my house work done. I know that physio is supposed to help, but I have been pulled out of that because it was making matters worse. At least my husband is understanding and helping me get out of the house every day.

 
Old 11-12-2008, 05:48 PM   #12
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Angry Re: Just diagnosed with CRPS

I have had a horrific time with the staff at my pain mgmt doctor's office - repeated requests for paperwork for my attorney are just ignored, I've called after bad bouts of head pain and I can't see the physician for injections, etc. etc. It's so frustrating! I often wonder if the attitude there is due to my status as a WC client. My doctor was listed as one of the best in RI for pain mgmt, and he is really sweet. But his staff is AWFUL.

Just venting - I hope everyone else had a better day than me!

 
Old 11-12-2008, 06:07 PM   #13
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Re: Just diagnosed with CRPS

In my experience and stories from others, ill treatment at doc's office when you're a wc case is because you're a wc case.

One fine example is the doc I'm seeing now. I went there one time on wc because they were making me get a block. It was done and I was barely awake from being knocked out for it when I was shoved out the door still mostly asleep and unable to walk. All the other people there were relaxing in bed getting juice and cookies until they were fully awake and mobile.

It's highly unfair, the treatment we're made to endure at their hands. It wasn't our fault we were injured at work, it's not our fault that a piddling injury turned into a living he**. Yet we're forced to shoulder the blame and ill treatment.

Ok...I'll get off my soapbox now. LOL It's a hot spot for me and has been since day one. I'm just beyond thankful I settled out and don't have to deal with it anymore. Life really is good.

Hugs,

Karen

 
Old 11-13-2008, 04:04 AM   #14
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Re: Just diagnosed with CRPS

I can understand the living h*** that is caused by being a WC client. The first ortho I went to see who happened to the the one who did surgery on each of my knees didn't want to be bothered with looking at my ankle he just shoved a cortozone injection into it and told me that was all he could do. I was not happy or impressed. The ortho I am seeing now is great and he has done nothing but try to help. Even his stafff has been wonderful. But, that could be because he is a new ortho in my city and is looking to build his paitents and is more willing to take the time to deal with my issue. Even his staff has ben nice to me.

I wish I could settle out. I am so sick of dealing with WC. I just want to settle and be done with it and live my own life. The only good thing that has come out of this entire situation is that I have had time to focus on my writing and get published. And trust me, that is something that I am very proud of. I am going to be talking to a lawyer this week and find out if there is any way that we can settle out and I just get one last payment from WC and be done with it.

 
Old 11-14-2008, 12:10 AM   #15
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Re: Just diagnosed with CRPS

Hi Brita,
First of all.,congratulations on your writing and getting published!! That is very exciting and you should be proud of such an accomplishment in the midst of the turmoil of RSD and the WC quagmire.

When you talk about settling and getting the whole WC case resolved, would you have medical care indefinitely and for life for your RSD? It might be different in Canada because of the national medical system..and you perhaps would be able to get treatment for your work injury from your regular Canadian insurance.
In the U.S. I cannot utilize my private insurance which I get through my job for medical care for my ankle injury which i sustained at work..it must be through the worker comp insurance. This really concerns me over the next several months and perhaps years..while I try and remain optimistic, RSD may never end ( although I do try and hope that it can) and its course is unpredictable..so I think about medical care in a long term perspective and whether or not I would be able to get it in future years!! I am curious as to how you and others involved in a WC injury think about future and long term medical care for the RSD..........
I hopoe you are able to resolve your situation and can focus more time on your writing!!! (is it a novel?)
Take good care !!!

 
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