Saturday, May 25, 2013

Thursday, May 14, 2009 Guysgal asks

Q: when crps goes into remission will it still show up in a triphasic bone scan

I was diagnosed with CRPS in April of this year. I may have first developed CRPS in 2004 after a deep tissue injury down the left side of my body. I had the same sypmtoms, burning pain, sharp shooting pain, alydonia, constant inflammation and zero pain relief. This all developed after I thought I had healed from the injury. It lasted for seven months and then gradually dissappeared until I felt back to normal. In December of 2008 the same symptoms reappeared but this time in my right leg. swelling, discolouration, constant pain, and an overall flu like feeling etc all unresponsive to pain medication. After doing bloodwork the doctors discovered my blood is positive for anti ana and anti ena as well which they thought may be related to a connective tissue disease. I saw a scleroderma specialist in April 2009 who diagnosed me with CRPS. By mid May the symptoms began to subside and gradually dissapear but not before causing mirror pain in my left leg and what felt like charlie horse pains in my arms. The swelling went down but would return if I over did things. The burning pain remains in my knee and I seem to have some nerve damage in my right foot and toes now. When I returned to my doctor in May to discuss the diagnosis he all but laughed me out of his office. Because the visible swelling was down and I didn't have alydonia at the time he completely disagreed with the diagnosis. He said the only accurate diagnostic tool for CRPS was a tryphasic bone scan. I asked him to send me for one to verify the diagnosis (or not). I have read about cases of CRPS that go into spontaneous remission and flare up in the future as a result of trauma or whatever. I wonder if this could be the case with me. I feel much better now than when I was in that horrible pain but I work in a locked psychiatric hospital Unit with very dangerous patients and am on my feet for 12 hour shifts. I want to make sure I can handle going back to that full time. I still have the flu like feeling and am achy. I still feel the burning in my knee only on a much milder scale. I even have pain walking on occasion still by the end of the day. I have not returned to work as my employer wants to have a difinitive diagnosis and wants me back to 100%. I feel as if I cannot ask my doctor questions as he doesn't believe I have it and he seems old school with the belief that CRPS soen't spread and that ALL of the commom symptoms must be present ALL of the time. If I have this bone scan an am in remission will it even show up that I have it. Is there a blood test that would be more accurate? I just want some answers so that if it is CRPS I can know right away the next time this happens what is going on and how to manage it. My family has a history of raynaud's, fibromyalgia and rheumatiod arthritis but I have not been diagnosed with these.

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Answers (2)
Karen Lee Richards, Health Guide
5/17/09 8:38pm

I have searched and searched for an answer to your question.  While the triphasic bone scan is said to have a 96% sensitivity and 97% specificity in diagnosing CRPS, with 99% predictability in excluding the diagnosis, I can't find any indication of how being in remission might affect those results. 

 

I know that the regional sympathetic blockade, which is considered to be one of the most important CRPS diagnostic tools, would certainly be affected by being in remission since it is dependent on the relief of pain when the blockade is done. If you're not in pain at the time, there would be no way to measure any relief. 

 

You asked if there is a blood test that would be more accurate.  Unfortunately, no.  Often blood tests and other lab work will come back normal. 

 

While remission is the exception rather than the rule with CRPS, there are some people who experience repeated episodes of CRPS alternating with periods of remission throughout their life.  In addition to physical trauma, weather and emotional stress can also play a factor in the recurrence of CRPS.

 

Ideally, you need a doctor who has a lot of experience treating RSD/CRPS.  However, that is easier said than done.  There's not any single area of medicine that specializes in CRPS and, as you've found, many doctors know little about it.  You might want to try calling doctors in your area and just asking if they have much experience treating RSD/CRPS.  In addition to general practitioners, you could try anesthesiologists, neurologists, rheumatologists, internists, and orthopaedic specialists. 

 

I wish I could give you a more definitive answer.  I hope you'll keep in touch and let me know what happens if you have the triphasic bone scan.

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5/22/09 12:44pm

Than you for your answer. I had the triphasic bone scan on May 20th. It was the most interesting test I have ever had done. I asked if the results would be effected by a possible remission or decrease in symptoms. I was told that the scan only sees the bone so the other symptoms don't have an impact on its results. My right knee lit up like a lightbulb whereas the other areas of my body were not as bright. The Dr. in the nuclear medicine department said he would not rule out CRPS as it is a clinical diagnosis and all my history and symptoms seems to point toward it. He also said that as most everything else had been ruled out he was in agreement with the diagnosis. The scan proved to me that I am not in remission but am fortunate that the pain level has decreased quite a bit over the past month. My leg is still 2.5 inches bigger than the other one and I still feel all the same pain feelings, they are just turned down in intensity. The doctor was suprised that I had been in remission for 4 years prior to this occurance and stated that often remission states are few and far between. I'll keep taking things one day at a time and get into some physio thereapy to try to work this through somehow.

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Karen Lee Richards, Health Guide
5/24/09 5:07pm

I really appreciate you letting me know how your test came out – and that the results of a triphasic bone scan would not be affected by being in remission.  Your "one day at a time" attitude is an excellent way to approach something like CRPS.  I hope the physio therapy helps and that you have another remission soon.  Thanks for sharing! – Karen

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10/ 5/11 9:35pm

I know this is late, but I'm posting so that maybe it will help someone else like me who has CRPS and is trying to learn as much as possible about how to get help, etc.  Got my CRPS from a minor neruoma removal surgery in foot. I was a runner, now am a swimmer.  A nurse friend mentioned RSD / CRPS to me 2 months after surgery, and I knew right away I needed a doc to verify cuz the the research online sure confirmed it for me! Family practice doc thought 'yes' it was CRPS, but sent me to a neurologist who said we wouldn't know for at least 6 months! Not good to wait... waiting to treat it makes it harder to put it into remission (if not impossible!). Went to a 'pain specialist' who immediately knew it was CRPS and began agressive treatment. Went to a foot doc who's website specifically mentioned 'diseases of the foot.' He very quickly was able to confirm it was CRPS. Since is starts in feet so often, a foot doc sees and treats it often, and so do 'pain specialists.'  Bottom line: if you're having difficulty getting a diagnosis, get your main doc to refer you to one of these others because pain specialists ultimately see CRPS more than anyone else. After all, they are the last option for people in chronic pain from CRPS. Good luck, everyone! I'm working toward remission through getting sympathetic nerve blocks, physical therapy, and swimming. 

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Karen Lee Richards, Health Guide
10/ 5/11 11:33pm

Good for you, Jen!  You did exactly what I wish all patients would do... you took charge of your own healthcare and didn't stop until you had an accurate diagnosis and a good treatment plan.  I wish you well and hope you will be in remission very soon.  Thank you for sharing your experience!

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10/ 1/09 4:36pm

HI MY NAME NOW IS PAIN . BE A NORMAL 40 YRS WOMEN END A 90 YRS OLD LADY, NOT MOVING FOR THIS PAIN , AGONI ALL TIME SOMETIME ASK THE SAME QUESTION OVER AND OVER AGAIN WHY ME. HAVE SURGERY TO REPAIR A THERT TENDON  END IN A WHEEL CHAIR SOON  I WHAT TO KNOW IS HELP FOR ME PLEASE LET ME KNOW. DOCTOR TELL ME THE FOUND HAVE CRPS CHRONIC PAIN FOR INJUREY O MY SURGERY IN MY LEF ANKLE

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12/12/09 5:36pm

i do not type much.i broke my right femur and right hip.i also broke my ankle right side to.i can pray for you and everyone with crps.i listen to music and read books,when i can.when i can,t i use weights to help me.my name is paintoo

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By Guysgal— Last Modified: 10/05/11, First Published: 05/14/09