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  • RSD Systemic - attacking other organs

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    Old 08-21-2005, 03:41 PM   #1
    palarin
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    RSD Systemic - attacking other organs

    Hi Everyone,

    Its been a little while since I posted anything. I was diagnosed with Systemic RSD earlier this year after living with RSD for the past 4 years in my lower back and extremities.

    Recently, I was told that the RSD is now starting to attack my internal organs because I started having severe burning pain in my lower stomach in which pain pills do nothing for it. I literally scream through each episode because the pain is unbearable. I had a colonoscopy and some other tests however they all came back negative therefore the doctor feels that the RSD is now starting to attack my interal organs.

    Has anyone ever come across this type of problem?

    Thanks,
    Maria

     
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    Old 08-21-2005, 04:57 PM   #2
    sharon1030
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    Smile Re: RSD Systemic - attacking other organs

    Hi Maria,

    I can't help you with your question...I'm sorry you're feeling so bad and I'll keep you in my prayers.

    Sharon

     
    Old 08-21-2005, 08:34 PM   #3
    Gaollan
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    Re: RSD Systemic - attacking other organs

    My best friend has the exact same thing. It's in her chest wall, so we worry about her heart and it's in her bladder and stomach also. I know someone in another group I'm in that has had a heart attack because of the RSD. I've heard stories of others that it has also gone internal too. I also came across this in my reasearch of RSD when I first got it.
    I'm so sorry that you have to deal with yet another change and it's this bad. ((((((((((((((((HUGS))))))))))))))) for you. I hope something will ease that pain.

    Karen

     
    Old 08-22-2005, 07:46 AM   #4
    feelbad
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    Re: RSD Systemic - attacking other organs

    This could also be more attributed to the actual sns damage that you suffered that caused the RSD to occur.i am having horrid symptoms all over my body and it is mostly attributed to my damaged sympathetic.What else is going on as far as any bizarre symptoms?believe me I can soo relate.Marcia
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    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 08-22-2005, 12:26 PM   #5
    palarin
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    Re: RSD Systemic - attacking other organs

    Chest pain, Burning pain in my abdomen, Burning just about all over, swelling in feet, legs, arms, & hands, redness, joint pain, difficulty getting up and starting to move, muscle spasms, sometimes I can't feel my arms at all, fatigue, depression (don't we all?), I use a quad cane because I can't walk with my left foot all the way down at all. I can't walk more than 5 ft without being in horrible pain so if I do go out, I either take my scooter or go somewhere that has electric scooters available. I had to fight my insurance company for 9 months but they finally got me a scooter. I've also applied for Disability because the doctors have told me that I can no longer work. I totally agree with them on that one. I was denied the first time but we are working on my appeal.

    Surgery #1 (3/2002) Spinal Cord Stimulator Impant
    Surgery #2 (11/2003) Cyst removal in the maxillary sinus cavity
    Surgery #3 (3/2004) Spinal Cord Stimulator Replaced due to broken leads
    Surgery #4 (9/2004) Spinal Cord Stimulator Removed, due to legs given out, ring/pinky finger numbness, incontinence. Insurance insisted that the stimulator be removed in order to do MRI's on me.
    Diagnosed: (10/2004) Syringomyelia (syrinx) at C7, found a mass in my Chest wall, also found a Mass on my Adrenal gland by my left kidney. Status: unable to remove syrinx due to its location and it is not causing any of my problems. The other two masses are being monitored for growth changes.
    Surgery #5 (1/2005) Spinal Cord Stimulator Implant
    Surgery #6??? - Currently looking into having a Morphine Pump implant to help aliviate all of the medication I am on. I have already trialed it and I think that it helped me. Does anyone else currently have a morphine pump?

    God Bless,
    Maria

     
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    Old 08-22-2005, 04:27 PM   #6
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    Hi Maria,

    I have had a pump with morphine and bupivacaine for the past four years and it helps me tremendously. I am off all oral narcotics. I do have MSIR for breakthrough, but haven't needed it in a long time. I think the bupivacaine helps more than the morphine does. It's similar to novicaine and marcaine and is kind of like a permanent block, with no numbness...although I do get numb when I lay on my left side for too long, but that's because the catheter is pointing to that side...it goes away when I'm off that side for too long. It's not such a bad side-effect, actually. If I were you, I'd ask about the bupicacaine too...not all docs use it, but it's been a lifesaver for me. Good luck and if you have any more questions, let me know.

    Sharon

     
    Old 08-23-2005, 05:32 AM   #7
    feelbad
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    Re: RSD Systemic - attacking other organs

    If you post a pump question on the pain management board you will get many responses there.Alot of people who post there have these.wish I could be more helpful.by the way, considering the location in your C spine where your biggest problems are, it very well could be the SNS damage that is causing some of your symptoms.Unfortunetly there is not alot you can really do as far as treatments.marcia
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    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 08-29-2005, 08:59 PM   #8
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    Re: RSD Systemic - attacking other organs

    Quote:
    Originally Posted by palarin
    Hi Everyone,

    Its been a little while since I posted anything. I was diagnosed with Systemic RSD earlier this year after living with RSD for the past 4 years in my lower back and extremities.

    Recently, I was told that the RSD is now starting to attack my internal organs because I started having severe burning pain in my lower stomach in which pain pills do nothing for it. I literally scream through each episode because the pain is unbearable. I had a colonoscopy and some other tests however they all came back negative therefore the doctor feels that the RSD is now starting to attack my interal organs.

    Has anyone ever come across this type of problem?

    Thanks,
    Maria

     
    Old 09-08-2005, 05:58 PM   #9
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    Re: RSD Systemic - attacking other organs

    Hello,
    My good friends 12 year old daughter has been diagnosed with RSD in her chest wall. None of the drs. in our area have been able to help her with the pain (which gets worse every day!). Do any of you know of a physician (anywhere) that has experience with RSD in this area ? Apparently seeing it in the chest area is not something that happens often.
    Thanks!

     
    Old 09-08-2005, 09:39 PM   #10
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    Re: RSD Systemic - attacking other organs

    Hello and Welcome,

    What area is she in? United States?

    I am so sorry that she is having to experience this at such a young age. She is very lucky to have someone like you on her side. We RSD'ers need a very strong Support group. Never stop believing in her and tell her Mom to stay strong. Let me know where she is located and I will do some research.

    Kim

     
    Old 09-09-2005, 03:46 AM   #11
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    Re: RSD Systemic - attacking other organs

    We are near St. Louis. None of the Drs. she's been to (Childrens, Barnes) have experience with RSD in the chest area. She is in constant pain, missing a ton of school and this has consumed their lives. Any help would be appreciated...thank-you

     
    Old 09-09-2005, 08:28 AM   #12
    Budko
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    Re: RSD Systemic - attacking other organs

    I can't believe this, I only found one Doctor. He is not in Pediatrics, but it is worth a try. Do you mind me asking, what trauma led to the RSD? What Treatment has she already received? Besides the pain, does she have skin changes or other problems?


    I can not post Phone Numbers, so you will have to look up his Number.
    Missouri Dr. Anthony Guarino
    Washington University Pain Management Center, St. Louis, Missouri, 63141

    Good Luck,

    Kim

     
    Old 09-09-2005, 11:04 AM   #13
    stlpal
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    Re: RSD Systemic - attacking other organs

    Her initial injury was from weight-lifting in gym class at school and was diagnosed as Costochondritis.

    She has had numerous rounds of steroid therapy, high doses of ibuprfen, is on elavil and zanaflex right now. Her pain level is typically at a 8 in her chest, and has recently developed recurring sharp, shooting pains in her stomach area (these are usually a 10). She was diagnosed with Krohns Disease between the Costo and the RSD.

    Thank-you for the information.

    Good luck to you,
    Michele

     
    Old 09-09-2005, 01:24 PM   #14
    Budko
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    Re: RSD Systemic - attacking other organs

    Michele,

    I did some more research and I was curious as to where they (Pain Mgt Dr)say the RSD is? Who Dx her with RSD - what type of Doc? What symptoms is she experiencing with RSD? I researched on Costochondritis and found that the pain is a sharp shooting pain and it waxes and wanes and does not go away. With RSD, you usally get constant burning pains, some may be sharp. I described most of my shooting pains as a hot poker sticking in my eye, face, arm, etc.. Now with Crohn's Disease, My Mother has had it for 20 years, this is a little more complicated. Is her Chron's under control? Once they removed my Mom's large Intestines she has been pain free as far as her stomach, but, there is always a but, She has Chron's in her joints and eyes. Which is causing horrible pain, weakness and Ocular problems.

    Let me highlight a little about RSD for you, so that you can understand why all Questions. When I get interested in helping someone you can't stop me.

    RSD is brought on by Injury, which she did have, usally it is in a Limb - Hand, leg, knee, elbow, wrist, shoulder, neck, not to say RSD can't happen somewhere else. The pain is a burning feeling and never ending. Most RSD'ers have Temp. Issues. Almost like your Thermostat is broken. If the Temp changes one way or the other, you will either go into a Cold Spell (Bad Goose Bumps, like you have hypothermia) or into Heat Stroke (almost, Feels like it). She will also have some type of sweats, either cold sweats or hot sweats, really bad at night. What about Insomnia? Most of us get it. My best Insomnia Record is 5 days. Holy Moly! Talk about being, Coo Coo. Have they done a bone density on her? I would say the Majority of us, have some type of Bone Loss. What about skin patterns and changes? This is very common.

    Please don't think that I am prying, I just want to help and I understand you are a friend and don't have all the info., but something inside of me, is telling me to Question the RSD DX. Have they talk about any type of Ganglion Block, yet? If this is really RSD, she needs to be treated ASAP. No ***** footing around. I was just dx with RSD this year, but I have been suffering for almost 4 years. I am at the point in my RSD where there is no longer treatment for me, only pain management. You will find that this is very common, becuase Docs just don't know enough about RSD, to get a fast DX.

    Have a great day!
    Kim

     
    Old 09-09-2005, 03:08 PM   #15
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    Re: RSD Systemic - attacking other organs

    Kim,
    Thanks so much for all the information, I appreciate the help!! I am pretty close to the situation as this family is my only family in the St. Louis area (they've sort of adopted me).

    I am not aware of any hot or cold sweats - night or day. Jada does spike a fever once in awhile but not too much higher than normal. Her sleep is interrupted by the pain but I don't think she has insomnia (I do - - - you'll find out if we keep chatting). Interesting you mention ocular problems in Crohns...although you don't mention what kind your Mom had, Jada had perfect vision until this past year. She had to get glasses and the correction needed was pretty significant. There has been no bone scan done. They've done CT's and MRIs and have ruled out any 'medical' reason for her pain.

    Some additional history - when the Costo first happened, she was asked not to participate in gym. Subsequent to that directive from her family practice provider, she was forced to do push-ups by the gym teacher. She's been in pain ever since. She was put on steroids for the Costo, and developed strep a short time later. Apparently steroids negate the effects of an antibiotic and her case of strep was worse than any I've seen. She developed severe pain in the right side of the abdomen and was hospitalized after some initial tests done for the Crohns (the external exam) didn't show anything. Appendicitis was ruled out as well. They did an MRI (I think), then biopsied the area where the inflammation was in her intestines which lead to the Crohns dx.

    The shooting pain in her stomach just started recently. If her chest is touched any time, the pain sends her through the roof. PT didn't help - they gave her a TENS unit, her chest pain and sensitivity seems to have worsened since then. She doesn't mention burning, just excruciating pain.

    The doctor who diagnosed the Crohns was a GI doc. A rheumatologist diagnosed the RSD. She had a whole team looking in on her when she was in the hospital - she was what they called a "strange" case). She was seeing a pain mgt. doc who recently asked that they find another doctor - he doesn't know much about RSD in the chest.

    They are at their whits end and she is becoming more and more depressed every day. She isn't really physically active but loves school and is very smart. SHe has only attended 4 days so far this year - - - which adds to her depression.

    They have not mentioned doing any sort of block on her.

    Any additional info you can give I appreicate, thanks again so much for all your help.
    Michele

     
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