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Diagnosed with CRPS
#11
The Ime suggested it both times I met with him. He wanted to work on it a year ago, but my surgeon said he didn't think it was that.

I think he did though, he was treating me with all the meds used for CRPS.

Eventually they sent me to pain management, and there it was confirmed.

The final test is interesting, they look for a difference in temperature between the effected area, and the same area on the other limb. A 1*change is proof. I had 3* change.

According to the pain management Dr, it is not curable, but can be put into remission with aggressive treatment.

I will certainly let everyone know how this plays out, so we all can have a bit more information to go with, even though the disease is different in every patient
 
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#12
Bump thread to top

 
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#13
It has been suggested by more then one doctor that I may also have this.

Not for sure of the symptoms but the left leg has a red coloring to it, more so around the knee. The injury was 2005 and I still have a tremendous amount of swelling to the knee with some swelling to the entire leg.
 
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#14
There are other symptoms as well. unusual sweating, or no sweating in the effected area
Temperature change between the effected area, and the normal area on the other side. 1 or more degrees different
Being unable to stand anything or anyone touching the area.
The list goes on, those are a few to catch your attention

Here is a link to read, to inform yourself

http://www.google.com/url?sa=t&rct=j&q=&...5469,d.cWc

I would like to see everyone post on this, so maybe we can help each other figure out this beast, as the medical field is only now just getting an understanding of the disease
 
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#15
http://www.youtube.com/watch?v=Zo-xQLigq...r_embedded
 
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#16
I watched the video and I do have most of the symptoms with the left knee and leg.

Eight years after the injury the knee is swollen to the point that I have to be selective of the clothes I wear because most will not fit due to the swelling plus clothes will cause pain with the leg and knee.

I have little hair growth with the leg and do not have to shave, also have the nerve pain.
 
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#17
I am around today, shoot me a message or something, ask and I will do my best to answer. Short summary on me and CRPS/RSD. I have CRPS, Types I & II, started 3/25/06 with shattering of left ankle. Went at that time from aright below knee all the way around to encompass foot. May 2011, mirrored to right lower leg.
2013 move to both hands, late 2013, is now on back.

I take 60mg MS Cotin every 8 hours, w/15 mg Instant release Morphine for breakthrough. Savella, 50 mg 2xday. 800mg Ibuprofen every 5-6 hours, 5-10 mg valium pen for muscle spasms.

Lyrica is miracle drug for RSD if you can take it, an A**H*** od'ed me on it in 2008, and now when I take it my tongue swells, until then it was the best thing since sliced bread for the nerve pain.

I am not an authority on RSD by any means, but I have learned on heck of a lot about it as all through wc I had Dr. who had never even seen a case, so I had to be my own best advocate!
The good news is,"You can get used to anything."
The bad news is,"You can get used to anything."
:-)
Sithie
 
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#18
Sithie what type of doctor should I see to make the diagnosis?

My primary and physical therapist have both mentioned I have symptoms of RSD.
 
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#19
My pain management Dr is taking care of me.
I had to change Dr's though, as the first one wasn't real familiar with RSD/CRPS.
The best you can do is educate yourself, so that you know what your in for, and how to treat it
 
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#20
BK, hi sunshine, it is good to hear from you, but I will say up front how sorry I am that RSD is making an intrusion on your life, I know it is an unwelcome unwanted diagnosis. As for getting a "good" diagnosis…My best one was from a Neurologist. It was backed up and verified by a Pain/Rehab Medicine specialist in Denver, they defining test for me was a thermal imaging test, and the sweat test, they could not make my left legs sweat even while running electricity through saline into my skin, and the thermal imaging shows the affected areas to run 2-4 degrees lower then rest of my body. Are you still fighting WC or SS? If so, RSD is often not enough to get SS, and WC I think it is totally up to your adjuster. It is a very expensive disease, they will pray for your death if they have to admit that it what you have. Ask about the lidoderm patches, they help me a great deal. Educate yourself read everything you can, and look up the things you don't understand. You want a Dr. who has experience with RSD. But, they may say they do and then proceed to treat you like any other pain patient. That is a HUGE red flag, the best, most knowledgable Dr's I've had, act differently regarding my rsd, the are very gentle in the touching and handling the areas, they strive for getting you the most "tolerable misery" you can have, I can tell you from experience, YOU HAVE TO CONTINUE USING THE AFFECTED LIMBS! If not you will lose bone density, get osteoporosis, the limb will atrophy and thing will get worse. I know it hurts, I a sorry, but use it, touch it, rub it with different types of stimuli, i.e.: cotton balls, silk, hairbrush, etc, as often as you can tolerate. Wrapping the area tightly, like you would swaddle a baby helps at times, just maintain circulation. I am shooting you my # and email via a pm, share it with dusty boy if he wants it.
The good news is,"You can get used to anything."
The bad news is,"You can get used to anything."
:-)
Sithie
 
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