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Old 02-04-2012, 05:24 AM   #1
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crps 1 or 2 or both

First time posting...looking for answers, like everyone else.
Initial injury in 2010 and saw same Ortho entire time, had 2 opinions, and
MRI's,NCV/EMG, 3 PHASE BONE SCANS and was told CRPS 10 mths ago at one of
the 2nd opinions and after a long wait and a pain clinic referral and more MRI's
went for another 2nd opinion (dr #7) to a yet different ortho dr. who said CRPS 1 or CRPS 2 or both....(trying to keep to the facts and make it short after 1 1/2yrs is difficult)...This last dr. said get a Physiatrist, and nerve blocks. I have looked on line at Physiatrist and they sound good, I am not sure they are the right folks for CRPS..no dr. to this point has bothered to explain this CRPS to me, all I know of it is what I've read online....trying to understand it all and make good decisions. Please help me and lead me in the right direction.
Thank you for any ideas!!!

 
Old 02-04-2012, 09:13 AM   #2
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Re: crps 1 or 2 or both

If you have CRPS in arm does it cause full body chills???

 
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Old 02-04-2012, 02:29 PM   #3
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Re: crps 1 or 2 or both

Hey Josana,

It is been awhile since I have been on this site but I still like to check in every once in awhile. U sound like the typical RSD patient who visit one doctor after another without getting the proper diagnosis much less the proper treatment. Since there is really not one or two tests that can correctly diagnose a person with this disorder, it is made base upon the observation of the clinician as well as the symptoms reported by the patient.
With this being the case, if you visit 10 different doctors then you will probably get 7 different diagnosis. This is why it is so important that you educated yourself since this is not a very well know disorder in the medical community. So you need to read, read, and read some more because this disorder is a race again time and right now you are lagging behind.

It does not seem like you have received much in treatment much less a proper diagnosis. U need to find a pain management specialist (Anesthesiologist) who has experience dealing with RSD patients ASAP!!!! This is the doctor who does the nerve blocks. Usually, the best outcomes are achieved if you are diagnosed and receive proper treatment( nerve blocks, medication and physical therapy) within the first 6 months after onset of this disorder. The more time that pass the less responsive it is towards treatment. At 18+ months without proper a dx and treatment too you dont have time to waste....
Also CRPS I or II is basically the same except II involves damage to a nerve such as falling and displacing bones in the wrist vs falling and displacing bones in the wrist plus tearing one of the nerves located in that area.

How did u get it and what type of treatment are u receiving now?


Hope this helps....

 
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Old 02-05-2012, 07:21 AM   #4
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Re: crps 1 or 2 or both

Thank u so much for responding Flaminghands (love the name)...and I completely agree with everything u said. This is w/c so they are extremely slow and I feel like I am the only one with any sense of urgency. Never in my life have I had to deal with such a slow process. The original injury was my hand was crushed in a large industrial door. First dr. said Contusion and I was sent back to work and braced for 8mths. I kept telling Ortho it burned like crazy and he kept telling me nerve injuries can take 3,6,9,12 mths to heal and the pain I felt was normal. First MRI said neuritis/neuralgia and then EMG/NCV said tenosynovitis and carpal tunnel with sprain/strain..still sent me back to work with a few limitations like no grasping. Bone scans looked ok which to dr meant see u don't have anything wrong. Even though I was in pain everyday..burning,stabbing,swelling etc I believed the Ortho cause doesn't everyone want to believe they don't need any surgery and it will all heal in time? Finally 8 mths into this I get IME and that dr. said CRPS well I had never heard of that even with all my online investigating I did not see.
When 1st dr. saw IME he says well that is what I've been saying all along..NO u did not...I would have looked it up! 3 mths later I finally go to Pain Clinic...where they have me do 3 more MRI's..results stopped the whole thing as there were partial to probably completely torn ligaments and tendons and tennis elbow and torn TFCC wrist, torn UCL elbow, and possible nerve impinged in Cspine. Pain clinic at that point said get another Ortho opinion I am not an Ortho. It took 5 additional mths of arguing with dr. and w/c to get that appt with a dr. I chose. Results CRPS 1 or CRPS 2 or BOTH and DON'T let anyone do surgery on you as CRPS will get worse. So, basically now I have all these injuries that cannot be fixed and CRPS.
So now I am waiting again to see if they will let me have a Physiatrist, who deals with nerve,bone,soft tissue and nerve blocks etc. so I'm told, cause I want the best person there is. After reading the CRPS websites BUNCHES OF TIMES...I feel like I may be in the category of ABC syndrome, b/c cold takes pain away an always has...Ice was the only thing they gave me.
So this is where I stand, except for the fact the nerve was part of initial injury and not sure if that pertains to ABC syndrome, I suppose I will have to figure out my dx by myself. Never thought a yr and 1/2 ago I would be in this shape. I have educated myself so much I now feel I should be given a Medical degree and Law degree....LOL....Thanks so much and any advice anyone has I am thrilled to hear.......:wav e:

Last edited by josana; 02-06-2012 at 06:16 AM.

 
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Old 02-05-2012, 07:07 PM   #5
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Re: crps 1 or 2 or both

Quote:
Originally Posted by josana View Post
Thank u so much for responding Flaminghands (love the name)...and I completely agree with everything u said. This is w/c so they are extremely slow and I feel like I am the only one with any sense of urgency. Never in my life have I had to deal with such a slow process. The original injury was my hand was crushed in a large industrial trash compactor door. First dr. said Contusion and I was sent back to work and braced for 8mths. I kept telling Ortho it burned like crazy and he kept telling me nerve injuries can take 3,6,9,12 mths to heal and the pain I felt was normal. First MRI said neuritis/neuralgia and then EMG/NCV said tenosynovitis and carpal tunnel with sprain/strain..still sent me back to work with a few limitations like no grasping. Bone scans looked ok which to dr meant see u don't have anything wrong. Even though I was in pain everyday..burning,stabbing,swelling etc I believed the Ortho cause doesn't everyone want to believe they don't need any surgery and it will all heal in time? Finally 8 mths into this I get IME and that dr. said CRPS well I had never heard of that even with all my online investigating I did not see.
When 1st dr. saw IME he says well that is what I've been saying all along..NO u did not...I would have looked it up! 3 mths later I finally go to Pain Clinic...where they have me do 3 more MRI's..results stopped the whole thing as there were partial to probably completely torn ligaments and tendons and tennis elbow and torn TFCC wrist, torn UCL elbow, and possible nerve impinged in Cspine. Pain clinic at that point said get another Ortho opinion I am not an Ortho. It took 5 additional mths of arguing with dr. and w/c to get that appt with a dr. I chose. Results CRPS 1 or CRPS 2 or BOTH.
So now I am waiting again to see if they will let me have a Physiatrist, who deals with nerve,bone,soft tissue and nerve blocks etc. so I'm told, cause I want the best person there is. After reading the CRPS websites BUNCHES OF TIMES...I feel like I may be in the category of ABC syndrome, b/c cold takes pain away an always has...Ice was the only thing they gave me.
So this is where I stand, except for the fact the nerve was part of initial injury and not sure if that pertains to ABC syndrome, I suppose I will have to figure out my dx by myself. Never thought a yr and 1/2 ago I would be in this shape. I have educated myself so much I now feel I should be given a Medical degree and Law degree....LOL....Thanks so much and any advice anyone has I am thrilled to hear.......:wav e:
Hi Josana, I feel sooooo bad for you sweetie! Your story is somewhat like mine in the fact that NO doctors would listen to me or help me. They just kept passing me along to someone else or told me it was normal. (my ortho Dr) My PCP kept telling me to stop drinking coffee and do more PT and that she had no idea what was wrong with my feet! My RSD was brought on by two knee surgeries and I ended up with horrific burning pain, feel like my feet are in vice grips with someone stabbing them with a cork screw. And of course the bizarre color changes and terrible swelling. I have lots of other strange, awful symptoms too. Anyway, I really just wanted to tell you I know exactly what you are going through!!! DO NOT give up! Keep pushing hard and stick to your guns no matter what anyone tells you. This disease strikes so fast and it is so important that you strike back fast. What are the drs telling you to do next? Do you have a PM Dr that has treated RSD before and is super familiar with it? If not, are you calling PM clinics in your area to find one that deals with RSD? I know you are w/c, and I don't know how much that restricts what drs you can see, but I cant stress how important it is to get a super knowledgeable PM that knows and treats RSD. I hope I haven't upset you with what I have said, just really want you to get the right kind of help you need as soon as you can sweetie. All of us on here know just how you feel and where you're at so post as much as you need to and someone is on here most of the time that can help or at least give you a cyber hug when you need it. I hope that some or anything I have said can help you even if its just to let you know you are not alone. *gentle hug* I hope my rambling on helped if even just a little. Hang in there sweetie and remember NO ice!!!!! Ice makes RSD worse. I hope you are having a painfree night and try to hang in best you can. Karen

Last edited by hatemyfeet; 02-05-2012 at 07:16 PM. Reason: adding on.

 
Old 02-06-2012, 06:24 AM   #6
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Re: crps 1 or 2 or both

Thank u Karen..I am not doing any treatment at all right now, I am waiting for w/c to decide what I can do....it's ridiculous how long they delay things. I am trying to get the best person I can. I'm sorry for all your pain, I know it's tuff, we all just want our lives back, feel horrible for each and everyone of us on this site. It's good to have someone to ramble on with as most folks, although they have good intentions, are not going to understand pain that can't be seen. If there is any way I could do something for all of us I would. I am thankful for all suggestions and hugs!!

 
Old 02-06-2012, 05:11 PM   #7
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Re: crps 1 or 2 or both

Bless your heart Josana! No treatment at all? You must be in so much pain. I remember when I first got RSD and was without treatment...it was a very hard time for me and my husband. I hope that your doctor is at least doing something to help with your pain. You seem like such a sweet lady and I pray you are able to get some relief soon! *hugs* Karen

 
Old 02-07-2012, 08:32 AM   #8
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Re: crps 1 or 2 or both

Thank u......he told me to ICE it, my Dr. and I do have some Lortab if it gets horrible...just waiting and waiting and waiting and hoping and hoping for some answers very quickly.
So yes, I have had terrible time getting anything done and am hoping and praying the w/c folks will allow me to go where I want and start some treatment.Thanks again

 
Old 02-07-2012, 06:58 PM   #9
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Re: crps 1 or 2 or both

Hi Josana, I am in shock that your Dr told you to ice!!!!! Was it the ortho Dr that told you to use ice? Still cant get over they told you that, wow. My RSD causes SEVERE burning too, so I know how you feel. Then the other half the time my feet are ice cubes and that's super painful as well. From what I have read, most RSDers have more problems with cold than hot. Then there are the few of us that have the dreaded "hot" RSD. At least that's what I call it. I know its really hard not to want to ice but it really will make it worse. Sucks I know. Whatevere Dr told you to ice should have their med license taken away. I swear some drs know less about this then we do. Sheesh... when I went to pt in the beginning they iced me too. Now my RSD is spreading at breakneck speed, feet, ankles, back of legs, knees, and hands. (trying to creep up arms). I think I am ranting, sorry about that. You just bring back a lot of memories about what drs told me and did to me in the beginning. I so dearly hope that w/c gets off their butts and start helping you! You must be so angry, man alive I hate "the system " sometimes. Do you have a PCP that you see? I ask because one of the BEST things for the evil burning is lidocaine patches. You just stick them on and they numb your skin. Its the closest thing to bliss next to ice. And we know that's a major no-no. Can you call your PCP and ask them to call in a rx for the patches?? I hope you're having a good night hon and I wish there was a way I could help more. If you can get the lidocaine patches, let me know if they give you some relief sweetie. Karen

Last edited by hatemyfeet; 02-07-2012 at 07:02 PM. Reason: added on.

 
Old 02-08-2012, 06:42 AM   #10
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Re: crps 1 or 2 or both

Ortho told me to ice it cause that is what i told him helps with the pain, i am allergic to ibuprophen (?) and he kept insisting that I don't have CRPS, even though IME said I did and then pain clinic said get another opinion when MRI showed so many things wrong with arm, and then next and different Ortho dr. said CRPS 1 OR 2 OR BOTH and don't let anyone do surgery on injuries as it will make it worse and that is where i am right now. Can you have both 1 and 2?? I was reading and I think maybe I have the angry "C" backfiring CRPS...cause I like cold. Says you should have prolotherapy and not symp.block. so I don't know. Dr. keeps saying I don't have classic CRPS, whatever that means....maybe it is "C" . Did go to therapy briefly and they helped a lot, but they stopped sending me. I did not like the machine that feels like sand and warms up, can't remember what it was called. Love to keep my hand in the air conditioning vent in car. Is it ok to put cold water on it from faucet?? That relieves pain for a bit too! I have not had any blocks as yet or anything, so I will ask about patches. I did try on my own Capaisan cream that is hot, didn't do a thing for me. I hope your pain and treatments will help u and stop the spreading. Thanks so much for all your ideas...will check them out..as I am trying everything I can at this point.

 
Old 02-08-2012, 06:57 AM   #11
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Re: crps 1 or 2 or both

Hi Josana, I don't know if you can have 1 & 2 together. Not even sure how much that matters?? I also don't know if the cold water is bad. Geez, I hope someone that knows more about this awful disease will hop on here and give you better answers than I can. I just feel so bad for you and I pray you can get somerelief sweetie. Keep on posting on here and one of the wonderful super knowledgeable RSD folks will answer all your questions. Wish I could be more help. let me know about the lidocaine patches and try to hang in there best you can. *hugs* Karen

 
Old 02-09-2012, 06:30 AM   #12
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Re: crps 1 or 2 or both

Cold water is only slightly better than Ice. Try lukewarm I used to get a lot of relief by stiicking my hand in our swimming pool.

 
Old 02-09-2012, 06:50 AM   #13
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Re: crps 1 or 2 or both

cute!.....I can decide on a lot of things, it's just a matter of convincing others!
AND...The only thing I can count on is that I can count on nothing!
Attempting to return to original Ortho for appt tomorrow to tell him all the things that have
gone on in past 6 mths....and demanding he send me to CRPS specialist now that I have 2 IME's saying CRPS, and that he needs to do it NOW!!!
And of course I will say it nicely, I hope!
Thanks for the water info...guess I should tell w/c I need a pool built for medicinal reasons.

 
Old 02-09-2012, 07:05 AM   #14
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Re: crps 1 or 2 or both

Quote:
Originally Posted by josana View Post
cute!.....I can decide on a lot of things, it's just a matter of convincing others!
AND...The only thing I can count on is that I can count on nothing!
Attempting to return to original Ortho for appt tomorrow to tell him all the things that have
gone on in past 6 mths....and demanding he send me to CRPS specialist now that I have 2 IME's saying CRPS, and that he needs to do it NOW!!!
And of course I will say it nicely, I hope!
Thanks for the water info...guess I should tell w/c I need a pool built for medicinal reasons.
Hey Josana, you are cracking me up this morning...thank you!! I called my original ortho dr and left a pretty condescending message about how to diagnosis RSD/CRPS and that I would be available to talk to him at his earliest convenience to go over the stages of RSD and how to spot them because obviously he did not cover it in medical school. I did not use curse words or raise my voice, just offered my assisitance with future patients. It's a good thing I won't EVER go back to him for any treatment, don't think they would let me in the door. I hope you have better luck with your ortho than I did. *hugs* Karen

 
Old 02-09-2012, 07:25 AM   #15
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Re: crps 1 or 2 or both

Tell your ortho's that they should refer to your condition as FIIKS, F'ed if I Know Syndrome

 
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