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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD of the Ear?!

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    Old 05-16-2004, 02:01 PM   #16
    Lizotte
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    Re: RSD of the Ear?!

    Dear Mirn:

    I have read your paragraphs at the beginning of this thread. I have a question, you can answer it or not, is the ear the initical injury site? If so what was the injury. I feel so badly for you. I just can't imagine having RSD in my ear. All the canals are connected in the head. The pain has to be horrific. Mine is in my foot, hence if I put it up during the day, the pain can be controlled. How do you relax an ear or try not to overstimulate it?

    LiZ


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    Old 05-18-2004, 06:33 PM   #17
    Michelle W
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    Re: RSD of the Ear?!

    Hi,

    I think I might also have RSD of the ear. I had surgery for TMJD, and they made an incision right in front of my ear. Now I am having problems with burning in and around my ear. I saw a pain management doctor today, and I am having a stellate ganglion block tomorrow afternoon. I think it is possible to have RSD anywhere in the body from what I understand.

    Sincerely,
    Michelle

     
    Old 05-18-2004, 07:36 PM   #18
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    Smile Re: RSD of the Ear?!

    Hi Michelle,

    Welcome to the board and good luck with your block tomorrow.

    Sharon

     
    Old 05-18-2004, 07:47 PM   #19
    sillygirl29
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    Re: RSD of the Ear?!

    Hi Michelle. I had the same open incision in front on my right ear for severe TMJD about 4 years ago and had the left scoped at the same time, so I can definitely relate. I have been told by my MFS that the pain and burning around my ear on the right side was due to bone on bone rubbing and associated inflammation in the muscles. Maybe it's been something else for that long and never realized. I wish you lots of luck and hope the earaches go away (i'm assuming you have them too). Let us know how it turns out for you.

     
    Old 05-18-2004, 08:09 PM   #20
    Horsie Nutt
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    Re: RSD of the Ear?!

    Hi Mechelle, welcome to HB. I'm sorry that you're having problems, and I wish you the best of luck tomorrow with your block. Please come back and tell us how it went.

    Cathy

     
    Old 05-18-2004, 10:08 PM   #21
    Jewel2
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    Re: RSD of the Ear?!

    Hi Michelle,

    Just wanted to add my good wishes for a successful block!

    Take care,

    Julie

     
    Old 05-19-2004, 01:28 PM   #22
    mirn
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    Re: RSD of the Ear?!

    Lizotte,

    Yes the ear was an injury site. I was a high school wrestler for 4 years and during junior season the ear filled up with puss and had to be drained and stiched back up. And then it was reinjured about 2 years later where it took a blow from someone's head also during wrestling. All this was about 3 to 4 years ago and it seems like the pain increased over time.


    Michelle W,

    I felt I was the only person in the world with RSD of the ear. I'm glad i can relate to someone. I had 4 stellate ganglion blocks (where they put the needle in your neck right?) I don't think they helped me. I think the 18 days of predisone (that I'm about to finish) helped me more even though i still feel quite a bit of burning pain and the ear sometimes flares up and is very sensitive to sunlight or changes in temperature. Keep me updated on your treatment and what helps and what doesn't. I will do the same for you. Let me ask you a few questions:

    Does your ear sweat? or when you put a tissue paper on it will it make it damp?

    In the moring is the ear all red?
    Does it flare up mostly in the evening time?
    Is it very sensitive to sunlight and feels uncomfortable when being outside?
    Do you hear popping and buzzing?
    Is the ear swollen?
    Does the ear feel better in cold temperature or warm?

    The answers in my case are: yes, yes, yes, yes, yes, cold

    Thanks, I hope the ganglion blocks helped in your case.


    Mirn

     
    Old 05-19-2004, 06:23 PM   #23
    Michelle W
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    Re: RSD of the Ear?!

    Well, I was unable to get my block today as I was running a temperature. I am not sure why I am running a temperature. I don't feel any worse today than I did a couple of weeks ago. It has be rescheduled for next week. I am going to take my temp this next week and see if I continue to run a temp.

    I had a blood test a couple of months ago, and I had a high rheumatoid factor test indicating that I might have rheumatoid arthritis. I have an appointment with a rheumatoidologist in June. It took me close to three months to get into him. As if I don't have enough problems we might throw rheumatoid arthritis in with RSD. I have heard that arthritis can cause you to run a temp.

    Mirn:

    The only symptoms I am experiencing are the burning which started out in front of my ear is now on my outer ear and behind it. It seems like it has spread to me. I also have problems with ringing and buzzing in my ear. It is sensitive to loud sounds at times. I don't have any sweating yet. At times, activities like the blowing wind, blow dryers and washing my hair seem to trigger more intense burning. My ear is not swollen yet. I have days when my ear seems to bother me worse than other days. My ear does not seem to bother me when I first wake up. It usually takes a couple of hours before it kicks in. It seems worse later in the evening, but I am not sure if that is because my medication is wearing off. I am taking Neurontin and Keppra.

    To everyone, thanks for welcoming me to the board.

    Sincerely,
    Michelle

     
    Old 05-19-2004, 07:25 PM   #24
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    Hi Michelle,

    Sorry your block had to be rescheduled. I just wanted to tell you that some people with RSD can run a low grade temp. I know I do. RSD can mess with your temperature regulation. One of the women who posts here, Julie has the opposite problem where her temp is lower than normal. Good luck.

    Sharon

     
    Old 05-19-2004, 09:14 PM   #25
    Horsie Nutt
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    Re: RSD of the Ear?!

    I'm sorry that you had to reschedule Michelle. I know how you feel, that happed to me before with the flu and my 2nd epidural infusion start date. It really sucked.

    Anyway, please keep us posted with what the rheumatologist says, as well as with your rescheduled block. I'll be keeping you in my prayers.
    Cathy

     
    Old 05-19-2004, 09:16 PM   #26
    Jewel2
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    Re: RSD of the Ear?!

    Hi Michelle,
    What Sharon said is true. Perhaps you should journal your body temp. every day for a while to see if it is consistently higher. That's what I had to do to figure out that I had a new baseline body temperature. I've pretty much leveled off at 96.4, but some days it drops into the 95 range. I wore a black, long sleeve shirt the other day while working in the 80 degree sunshine. Everybody thought I was nuts!

    Sorry you didn't get the block. I hope you can get another one soon!

    Take care,
    Julie

     
    Old 05-20-2004, 06:19 PM   #27
    sillygirl29
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    Re: RSD of the Ear?!

    Hi everyone. I was just a little curious about the temp changes. I didn't realize RSD could mess with your temp regulation, but it makes sense. Did anyone have fluctuations in their temps before their injury or RSD diagnosis. My PMD has noticed a wide fluctuation in my temps over the last year and a half. All my thyroid tests came back normal, but they noticed a slight inflammation factor (not Rheumatoid positive though). My temps can be 96 one time and almost 101 the next. After hearing some of the symptoms described by mirn and michelle, they sound eerilee (sp?) familiar, but I have never heard of RSD until about a month ago. Do you think it's possible that I've had RSD in my ear/jaw area after my surgery and that it has spread to my foot and leg after I hurt/ or not hurt (I'm not quite what I did to it) it?

     
    Old 05-22-2004, 09:53 AM   #28
    Michelle W
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    Re: RSD of the Ear?!

    I did not realize that RSD could make your temperature fluctuate. I have noticed that mine has been running about a degree high since my block was cancelled.

    This is a bit of a weird question but has anybody noticed an increase in yeast infections? I have been having a problem with this, and I have no idea why. I have went to great lengths to put myself on a low carb diet to see if it helps

    From what I have read RSD can spread, is this correct? I noticed that initially my pain was in front of my ear, but now it is in my ear, my outer ear, and behind it. Could this be typical of RSD from anyone's experience?

    Sillygirl,

    I have read where you can injure a new portion of your body and end up with RSD in that area. It seems to me that the wiring in one's body just goes crazy.

    Also, I was wondering if anyone is able to work with their RSD? I have been a stay at home mom for the past five years, but I have been hoping to go back to work or school. I am currently enrolled to take a summer class.

    RSD or the meds make me so tired.

     
    Old 05-22-2004, 05:30 PM   #29
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    Smile Re: RSD of the Ear?!

    Hi Michelle,

    The idea of the spread of RSD seems to be a controversial subject among medical practitioners, but most of us here on the board and elsewhere can answer that question with a confident "YES!!" Mine started in my left foot and I now have it in my right and left legs and left arm. I am not alone in this. I have read about so many people's stories where this has happened to them as well.

    I can't help with the infections, but a low carb diet sounds like it's worth a try.

    As far as working, some people can, some people can't. I was 15 when this started for me and I went through 6 years of college (on and off). I was in nursing school and went I got to the clinical parts where you have to work in a hospital, I realized that wasn't for me because I can't walk without crutches because of atrophy so I had to stop. That's my story, but there have been people on this board who did work. Good luck with your next block.

    Sharon

     
    Old 05-23-2004, 11:57 AM   #30
    Michelle W
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    Re: RSD of the Ear?!

    Thanks Sharon for sharing your story with me.

    I am so sorry that your RSD has spread. I know the small area where my possible RSD appears to be causes me great pain. I can't imagine having it in such a large area.

    I really worry about the financial aspect and my future if I have RSD. My medication is expensive despite my husband's insurance.

    Thanks for taking the time to answer my question.

     
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