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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD or not?

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    Old 07-02-2012, 12:53 AM   #1
    ddarken's Avatar
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    RSD or not?

    Hi all! I'm sorry for the length this post will be, but I'm really hoping for your opinions and I feel you need to know it all so I can get the best response. I'm a 29 year old female. I was rear ended at between 30-40 mph on 2/27/12. No pain initially and then a few hours later started with pain down my whole spine, left shoulder, and right hip. Figured it was whiplash. Saw the dr the next day who gave me muscle relaxers and ordered PT. A few days later I noticed a lot of swelling in my left shoulder and scapula and started having burning in the left forearm with some numbness in the hand. This continued for a few weeks on a daily basis, but not constantly. It's also never been so painful that it can't be touched, however, any form of heat, including sunlight or skin to skin contact on my forearm was painful. I was also noticing that my forearm would periodically get much cooler than the rest of my arm and I'd always be wondering where the breeze was coming from. Then about 3 weeks after the accident, I wake up and all my symptoms are now in my right forearm as well!! I began having periodic rashes that would come out of nowhere, be very itchy, and then stop itching instantly and disappear as quickly as they came on. I went to my primary who said she had no clue what was going on. I had an X-ray of my spine and shoulder which showed some loss of lordosis in the cervical, slight scoliosis of the lumbar, and the shoulder was normal. I then had a ct of my cervical which showed a tiny bone spur between c-6 and c-7. I was told the bone spur is too small to be causing any problems. So then they sent me to a neurologist who did and emg which was normal. We talked about rsd and he said it was possible, but he doesn't diagnose that condition and referred me to a pain management dr. The pain dr immediately said there's no way it's rsd because that condition doesn't come from whiplash. He said it comes from crush injuries or broken bones and would not discuss it further. He put me on lyrica and started cervical epidural injections assuming I have a pinched nerve. They did no good. He says now if I keep taking as much norco as I have been (5 a day), he's going to send me to a spinal surgeon for eval for back surgery! I just saw my primary last week and she's diagnosed me with fibromyalgia and started me in savella. At this point, in addition to already mentioned symptoms, I have increased back pain, almost daily headaches at the base of my skull, and it may just be me but I swear my skin is getting thinner. I can see all my veins right through my skin. And in the sunlight, my forearms have this sort of shiny metallic look. It's not very noticeable, but I notice since its my body. I've also noticed at times my forearms look very red, like all my blood vessels have suddenly dilated for no reason. I honestly feel I have both fibromyalgia and rsd, but my neurologist says he no longer needs to see me and my pain dr won't give me any diagnosis because he thinks it's all related to whiplash. My left shoulder has now been swollen for over 4 months and I have constant muscle spasms. All my drs either think I'm making it up or grossly exaggerating. I'm currently on lyrica 50mg tid, savella 50mg bid, norco 10/325 q 4-6 hrs prn, amrix 15mg at bedtime prn, tizanidine 4mg q 8 hrs prn for headaches, Tylenol 3 q 4-6 hrs for pain 1-5, and also I'm now on phentermine as well to try to get some of the weight off I gained from the lyrica! I should also mention I'm an RN. I was between patients homes when I was hit. I have been off work since 3/26/12. I just had my IME and of course the dr lied and twisted all my words, saying I'm not even hurt and accusing me of faking. He said I'm at MMI and should be released for full duty. I'm very upset and frustrated and I'm just looking for some feedback. Thank you so much for reading this!!

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    Old 07-02-2012, 07:37 AM   #2
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    Re: RSD or not?

    Wow, these IME docs are awful (although I have read of a few good experiences on here). I am worker's comp and had my IME 2 weeks ago and I am still waiting on any kind of report. Go figure.

    Old 07-05-2012, 11:59 PM   #3
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    Re: RSD or not?

    Hi there -- welcome! Is there any way to get a second pain management opinion? I would accept the referral to a spine surgeon to talk over your options, keeping in mind that these are simply options. Perhaps a spine surgeon would have more familiarity with CRPS/RSD? Or, at least more so than your primary care doctor! If you go to a spine surgeon, maybe a neurosurgeon who specializes in cervical issues would be a good fit to make sure you have a good work-up, appropriate testing, and a proper diagnosis?

    If you have any PT appointments remaining, I would also consider looking for a PT who is qualified to do PT for CRPS and try to get a second set of eyes on your issues from this perspective. Or maybe you could ask for a new round of PT with a new therapist, if you can locate an appropriate PT. I had luck with major hospital PT departments.

    Good luck with getting a good diagnosis and hopefully effective treatment.

    Old 07-20-2012, 05:00 PM   #4
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    Re: RSD or not?

    Hello and welcome,

    In my own personal opinion, your PM doctor sucks and I would like for you to tell him I said that! It has been proven that RSD can arise from even a simple wrist sprain, and if he does not know that you REALLY need to go find another PM doc in a hurry.

    Your results from the IME are typical, that's what they are paid to do - judge in their employer's favor.

    I am not a doctor, but sounds like another misdiagnosed case of RSD to me. I think you had best go get a second opinion from another PM in your area fast, time is not on your side.
    I am not a Doctor - Please DO NOT construe anything above as medical advice. Everything I post is from my own personal research and/or experiences.

    Old 08-01-2012, 03:42 PM   #5
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    Re: RSD or not?

    The doctor should be selling snake oil medicine. RSD can absolutely be caused by whiplash. The problem with most doctors is RSD is not easily seen on an Xray or MRI. If they can't see it they don't believe it is there. There is an imaging test that can be done (they inject a dye) and put you into some big machine that helps a competent RSD guy to diagnose it. The important thing about RSD is is can be treated or abated only very early in its onset. After that, it is too late. All this from ten years experience.

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    Old 08-01-2012, 04:36 PM   #6
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    Re: RSD or not?

    ddarken, I'm sorry for all that you're going through. The only recommendation I can offer is in the way of an RSD/PM specialist in your area. Dr. Michael Rock at Our Lady of Resurrection in Chicago not only specializes in RSD, he had the disease as a child, so he understands it intimately. Dr. Lubenow at Rush in Chicago also specializes in RSD. As someone already responded here--indeed you can get RSD from something as minor as a simple sprain. I can't say whether you have RSD, but it sounds like you need to see a PM who has treated RSD specifically and for a number of patients to rule it in or rule it out for sure. I hope this helps. Good luck to you.

    Last edited by Hushie; 08-01-2012 at 04:47 PM.

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