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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Newly diagnosed with RSD

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    Old 06-14-2011, 11:08 PM   #1
    walakegirl
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    Newly diagnosed with RSD

    Hi I'm new to this forum. I've been reading many of the threads for about a week or so. Very hard to swallow & I truly feel terrible for all of you that suffer from this awful condition.

    I have been told by 2 different Dr's that I have RSD, both just last week. I also have Tarsal Tunnel & Neuromas which is one reason why I think it took a few weeks for my podiatrist to consider RSD as they all have some similar symptoms. That is until my worsened.

    I want to know if any of you had any success with supplements, B12 shots, Bowen Therapy, anti inflammatory diet, physical therapy. I'm going on 2 months of a foot injury that has not yet healed. I did get 3 cortisone shots in the right foot last Thursday and started walking without crutches and the walking boot after being fitted in Brooks at a local specialized store. I can do my daily household activities, take the toddler to preschool (1 block driving from my house) and chores. Today I cooked for the 1st time & did 1 1/2 hrs of physical therapy for the 2nd day in a row.

    The PT & podiatrist say they have both dealt with RSD often and suggest I have mild RSD. Is there any such thing, or do they mean it's just the beginning? Or are they trying to come across calm so I don't panic? They both say the odds of remission are high if I keep a good attitude, do my physical therapy & learn calm down (I'm a very active/hyper gal). I'm working on quitting smoking and cut way down on my caffeine.

    I'm on Neurotin, have been or almost 2 months, it's the only thing that seems to work. I was given vicodin for a few weeks but it was not working & all I would do is cry at night.

    Also, so long as my foot is taped the pain is down, prior to the cortisone shots my pain level would double hours after the tape was removed.

    Has anyone here had a mild case and that was it? It didn't spread or progress?

    Thanks for all your feedback, thinking and praying for all of you

     
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    Old 06-15-2011, 04:17 AM   #2
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    Re: Newly diagnosed with RSD

    I would get in to a pain management dr. for sympathetic nerve blocks. According to my pm dr. that is the way to make sure it stays mild. You need to do this as soon after your dx as possible.

    Mine started out in my foot only last Oct. I've had injections in my foot and surgery on my tibia and now it is in my entire leg, arm and I have burning in my entire body. I was getting blocks since last Dec. You never know how this monster will turn. Maybe mine would be a lot better had it not been for the injection in my foot which for sure made it worse, or for the surgery I had to have on my leg. But you never know.

    I think you need to find a pain management dr. who is knowledgeable about RSD/CRPS and see what he recommends. Most will chose to do a series of blocks.

     
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    Old 06-15-2011, 09:29 AM   #3
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    Re: Newly diagnosed with RSD

    Hi walakegirl, When you say you have neuromas, I am guessing mortons neuromas? I had a mortons neuroma surgically removed in my left foot, which is what turned my world upside down. My pod dx me on paper as having causalgia from mortons neuroma in left foot, but what he told me was "you have some nerve issues from the neuroma, we will remove the neuroma and you will be good as new" He never said the word causalgia (which is RSD caused by nerve damage) If he had I would of looked it up and never done the surgery!!!! I didnt even know the word causalgia untill after I got my medical records from his office and took them to my PM and the first page from the first visit there it is causalgia, (RSD) the surgery caused my RSD to go out of control because the cut the nerve out of my foot. Please do not do the surgery to remove the neuroma. And I would seriously consider instead of a podiatrist going to an orthpedic doc who specializes in feet. pods are just not as qualified as orthos. I also had the cortisone shots in the top of the foot, which I was later told by my pm doc that they did more harm then good causing the RSD to worsen. I got one shot a week for 4 weeks and when they didnt work the pod said time for surgery. I originally started posting on this board under foot problems you can find my story and alot of others with morton neuroma horror stories there. I wish you luck try sympathetic nerve blocks. stay away from the cortisone, and find a good ortho.
    kelly

     
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    Old 06-15-2011, 09:36 AM   #4
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    Re: Newly diagnosed with RSD

    Oh yeah forgot pain management doc you need one of those they do the sympathetic nerve blocks,
    kelly

     
    Old 06-15-2011, 11:13 PM   #5
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    Re: Newly diagnosed with RSD

    if correctly treated within 3 months of the occurence, not the diagnosis it is possible to go into long term remission.
    The foloowing are bad and could lead to spreads so you must refuse them.
    Ice
    Hot & Cold Water Contrast Therapy
    Agressive Physiotherapy. Any Physio should only come after pain medication
    Operations
    Use of Needles in the affected are. (If absolutely essential a peadeatric needle must be used.

     
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    Old 06-17-2011, 02:47 PM   #6
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    Re: Newly diagnosed with RSD



    I also had foot problems and fell into the Morton's Neuroma trap. I had 2 surgeries for hammer toe that did not help the pain which was only in my right foot. I went to another surgeon who gave me an injection that took a lot of the pain away so he did the nueroma surgery and 2 weeks later my left foot along with my right foot hurt so bad I couldn't stop the pain meds. There was never any pathology done on what was supposedly removed. After 3 more surgeries they finally told me that I had CRPS. I agree, don't have nueroma surgery or any other surgery as far as that goes.

    Last edited by hb-mod; 06-18-2011 at 01:20 AM.

     
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    Old 06-17-2011, 04:06 PM   #7
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    Re: Newly diagnosed with RSD

    Wow they didnt send it to pathology that raises red flags right there!!!! what were the other 2 surgeries you had? did you use a podiatrist or an ortho?
    kelly

     
    Old 06-19-2011, 08:48 PM   #8
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    Re: Newly diagnosed with RSD

    So far, so good on day 8 of walking again for the 1st time in 2 months and many days there is no pain at all. My ankle & foot have went numb a few times from the tarsal tunnel. I have been getting my foot taped weekly, which seems to really help a lot. When I used to take the tape off the pain would double, now there is just a mild burning, nothing I can't handle. And it's always more intense in the 5th toe and down that side of my foot than anywhere else on my foot. It's so bizare. Thank you for all the replies.

    Are the Novacain shots he gave me in my tarsal nerve considered blocks? And my foot/ankle Dr is a podiatrist, Ortho & surgeon. He does not recommend surgery for the Neuromas at all. He said if I worsen at all he would send me to a neurologist. Is that the person that does the blocks?

     
    Old 06-20-2011, 12:09 PM   #9
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    Re: Newly diagnosed with RSD

    walakegirl,

    I am so glad that you pain has improved!!

    A neurologiist can do nerve blocks, however I believe most people with RSD are getting them done by an anesthesiologist that specializes in pain management. The nerve blocks use a numbing medication similar to Novacain.

    How and where did they tape your foot?

     
    Old 06-20-2011, 08:35 PM   #10
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    Re: Newly diagnosed with RSD

    Yes a neurologist can do they sympathetic nerve blocks, or the neuro may send you to a pain management doc. There are all kinds of nerve blocks, the sympathetic nerve blocks, for your foot are given a little below the bra line in your back.
    kelly

     
    Old 06-21-2011, 07:20 PM   #11
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    Re: Newly diagnosed with RSD

    Is your situation still mild? What has helped you?

     
    Old 06-28-2011, 11:47 AM   #12
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    Re: Newly diagnosed with RSD

    I'm doing good. Walking 17 minutes a day, 1 1/2 hrs of PT a day, 60+ push ups a day & pretty much back to my normal daily life with my kids, house & just starting to ease back into work after being totally immobolized for 2+ months

     
    Old 06-28-2011, 03:08 PM   #13
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    Re: Newly diagnosed with RSD

    Quote:
    Originally Posted by walakegirl View Post
    I'm doing good. Walking 17 minutes a day, 1 1/2 hrs of PT a day, 60+ push ups a day & pretty much back to my normal daily life with my kids, house & just starting to ease back into work after being totally immobolized for 2+ months
    Walakegirl,
    Tell me what treatments you are getting and what you are doing at pt. How to you get 1 1/2 hours a day?

     
    Old 06-28-2011, 03:28 PM   #14
    walakegirl
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    Re: Newly diagnosed with RSD

    I had 3 cortisone shots put it my foot the day after I was diagnosed. I started PT 4 days later. The PT massages my foot every Monday, they tape my foot 2-3x a week. They gave me 1.5 hrs of stretches & exercises to do at home every single day so it doesn't cost me as much. I'm paying cash since I had no health insurance. I met with a nutritionist who put me on a strict diet of anti inflammatory foods & about a dozen supplements. I eat a ton os veggies, fruit & fish! My fiance bought me a juicer for my birthday:-) So I juice all the stuff I can't choke down LOL

    Last edited by walakegirl; 06-28-2011 at 05:01 PM.

     
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    Old 06-28-2011, 04:15 PM   #15
    paininthefoot11
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    Re: Newly diagnosed with RSD

    Quote:
    Originally Posted by walakegirl View Post
    I had 3 cortisone shots put it my foot the day after I was diagnosed. I started PT 4 days later. The PT massages mu foot every Monday, they tape my foot 2-3x a week. They gave me 1.5 hrs of stretches & exercises to do at home every single day so it doesn't cost me as much. I'm paying cash since I had no health insurance. I met with a nutitionsit who put me on a strict diet of anti inflammatory foods & about a dozen supplements. I eat a ton os veggies, fruit & fish! My fiance bought me a juicer for my birthday:-) So I juice all the stuff I can't choke down LOL
    Can you tell me what supplements she put you on? I am taking b vitamins, magnesium and today I bought some alpha lipoic acid.

     
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