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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

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    Old 06-04-2006, 02:04 AM   #1
    tiogagurl
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    Unhappy Please help

    It's almost 2am where I am. I can't sleep. I was getting a lot better, I thought I did too much on Friday and I was ok until tonight. I went to go to sleep and the pain took me by surprise and I almost threw up. The burning is by the outside of my knee now too...I'm so confused. . I'm usually positive but this is just out of my league.

    Emily

     
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    Old 06-04-2006, 08:07 AM   #2
    jessemom
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    Re: Please help

    Hi Emily,
    This is so new to me, but I can tell you that, for me, the intensity and type of pain comes and goes (never goes away completely) and moves around. I started with an injury to my left knee, but now have burning and redness on the opposite knee and thigh since last week. As if that weren't enough, I'm now getting burning and stiffness in and around my right shoulder. I guess there's no where or why about RSD...it does what it wants. Stay positive, try to cope and as I've been told by others on the boards, tell your Doctor about any changes. If he or she doesn't listen, get someone else!
    Keep the faith,
    Vicki

     
    Old 06-04-2006, 10:15 AM   #3
    tiogagurl
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    Re: Please help

    Thanks! Yeah I am recently diagnosed too, it started with an torn muscle/tendon in my left hip then spread to my foot. I've had it for 5 months and was officially diagnosed in May.

    It sounds like you were diagnosed early too - you know we both have a good chance to recover/go into remission. What meds are you taking? Are you doing PT - what kind of stuff are you doing?

    Thanks again!

    Emily

     
    Old 06-04-2006, 04:17 PM   #4
    jessemom
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    Re: Please help

    Hi Emily,
    I'm taking neurontin (don't like it at all-makes me very foggy and irritable), vicodin and ambien. I was on Xanax, but stopped because it wasn't helping and I felt I didn't need another addictive substance. I just switched to the new Ambien CR, but I still wake up with pain after an hour or so and will probably stop taking that, too. I do PT when I can, but my therapist is very cautious and won't allow me to do much when I'm having a flare-up. In the last two weeks, my RSD seems to be spreading. First to the opposite knee and thigh and then today I started feeling the burning and sensitivity in my neck and the front of my shoulder, near my armpit. The worst part is convincing myself that I'm not crazy and I'm not bringing all this on myself. I'm calling my PM Dr tomorrow to see what we can do about these new symptoms. I hope he has some answers. This is a very strange syndrome and not too many people, or Doctors, know about it or understand it. That makes it more difficult to cope with.
    I hope you have a Dr that you trust and understands RSD. That seems to be the most important thing. There are some really good people on this board, who've been dealing with it a long time and have great attitudes. "Talk" to peole here. It truly helps! Everyone has their own treatment plan and what works for one person doesn't necessarily work for another, but it's good to get as much feedback as you can so you have options. Keep the faith and keep in touch with everyone here!
    Vicki

     
    Old 06-04-2006, 05:46 PM   #5
    sharon1030
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    Smile Re: Please help

    Hi Emily,

    I'm sorry you're having a bad spurt right now. You're still positive....just a positive person having a bad time right now. Hopefully, it will ease up soon. Try to hang in there.

    Vicki, you are NOT crazy and this is NOT in your head. It is real. You try to hang in too.

    Sharon

     
    Old 06-04-2006, 09:50 PM   #6
    daylilyfan
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    Re: Please help

    Emily
    I went back and looked at some of your past posts to see what sorts of things you are doing for yourself. You mentioned imagry and also homeopothy and gels.

    I'll let you know some things that have helped me.

    the book/CD combo "Break Through Pain" by Shinzen Young. It is about a sort of meditation.. I guess guided meditation? on chronic pain. He is a monk who has used the deep meditations to help chronic pain people for over 25 years. I have tried to do meditation for years (pre-RSD) - without success. But this book and tape really makes so much sense to me. It has helped me set my mind apart from the pain. I used to get that pain so bad that I WAS vomiting. And, almost passing out. This CD helped me get control of that. I am still not close to mastering the technique, but when the pain gets really bad - say I am at work.... I can go to the restroom, lock myself in a stall, and calm myself down, thinking of this CD. In 10 minutes I can decrease my pain more than taking 2 vicoden. When the pain is really bad... the kind where it makes you sick to your stomach? Well, he has a way of looking at it, a meditation, where you can learn to float within that pain, and well, it's hard to explain here. It has really helped me. And for less than $20. It has kept me working and off narcotics.
    Do a Google for "Practical Steps for Transforming Physical Pain Into Spiritual Growth by Shinzen Young" And close to the top of the list should be a page that explains a lot of what the book is all about. If it takes you to a list of articles on the shinzen.org site, just look down through till you get to the one called "Break Through Pain"
    I guess I just can't say enough about what this book has done to help me. When my massage therapist gave me this book, I was laying in bed crying and only sleeping a couple hours a day, actually screaming out many times a day, going to work, but crying most of the day. It was just awful. I was almost ready to vomit one minute or pass out the next. I started working with this, and within a month, the nausea was pretty well gone, next went the light head. Most of the pain was still there - I was just dealing with it differently.

    going to a really good massage therapist. This is SO important. I went to a pain mgmt specialist at the Clev. Clinic just to be sure my local docs and I were on the right track with my treatment. She told me that since I had been going to a massage therapist since my initial injury... it is probably why I don't have the touch sensitivity or wind sensitivity that so many do. It helps with muscle spasms, tone, so many things. When I first was injured, my RSD set in within a few days, and that's right when I started with the massage - I started with 3 times a week, and now, 8 months later, I go once a week. After I had RSD 6 weeks, I got my "real" diagnosis and went for my first block. The morning of my second block, I went for a massage first. The doc almost did not do the second block because the massage therapist had reduced the redness, increased the temperature etc... all the things the block would do. We did not continue blocks after that. BUT you have to get a GOOD therapist. Find one that does cranial sacral therapy... that at least means that they have had a lot of training.

    Baclofen -- this meant so much to me for the electric shock pains, the muscle spasms, over all pain, and also helps you sleep.

    I'm trying to go the no pain med route... I have vicoden if I need it.. but I really try to only take it if I am desperate. Since I still work, and drive, I feel I should try not to take narcotics. I usually take about 6 or 8 a month. Instead, I take other meds.. and quite a few, but they all have their part. Topamax ( am trying to phase down on this ) baclofen, Flexeril (another muscle relaxer as I have terrible muscle spasms with mine) and clonadine which helped quite a bit. If there is any way you can try the clonadine, it really helped that deep down pain. It is a blood pressure med, but my doc uses it a lot on people that don't have high blood pressure. Since I do, I can use it at it's highest dose. It comes in a patch, which is catapres, it's more expensive than using the pills... which come in generic, and for me have been just as effective.

    Now, homeopothy.... arnica gel helps a bit, but I have to use quite a lot, and it gets expensive. My massage therapist makes an oil for me in an olive oil base that has jojoba oil, then oils of basil, thyme, marjoram, lavender, cypress, peppermint, oregano, and arnica. It gets just a bit warm, and is supposed to work with the "vibrations".. I don't know, she gives it to me, so it doesn't cost me anything, and it is very soothing. The gentle warmth helps the muscles relax, and the oil does help with spasms.

    I also find that taking capsules of ginger root, tumeric, bromelain and garlic help with the inflammation. I have never been able to take the modern anti inflammatories like Celebrex, and am afraid to take Mortin and that stuff long term, so I do these natural ones. I also take Grape seed extract, cherry extract (jury is still out on this one.. may be a waste of money) and flax seed oil for their anti oxidents. The Tumeric has some pain relieving qualities as well. Magnesium, Zinc help muscle pain... learned that from having Fibromyalgia for years. Those I take at night cause that combo can help with sleep. I also take a product called Joint Mobility Factors by Michaels. It has boswellia in it as one of it's many ingredients which is also a natural pain reliever. It has Glucosamine and a bunch of other stuff too... I just went to the local health food store, and sat down with their biggest reference book - the one they recommened as the best info - and looked up circulation, inflammation, nerve pain, chronic pain etc.. and then bought the stuff that showed up as helping in most of them. I started them one at a time, each week... I can tell you that I notice if I don't take the tumeric and the bromelain for sure.

    Now the gels. Other than the arnica. Oh... also on the arnica. you can get little arnica tablets you can let dissolve under your tounge. I find those are good when you over do it. No, they are not like taking a heavy drug, but they do seem to help some.

    Have you tried Lidoderm patches? If you have insurance, by all means, try them. They can be tricky to stick on certain places, but you can use paper tape to stick the corners down if you have to. I didn't think they helped much at first. Then the specialist at the Clev. Clinic said to use them daily for a month before deciding if they worked or not for me. I tried that, and then I seemed to notice that they did help. You wear one for 12 hours. If your insurance will pay for them, get your doc to write them for you so that you have enough to cover your entire area if you can - you can wear up to 3 at a time.

    There is something even better, but some people wrote on another board I am on, that they did become allergic if they used this gel all the time. So, I was told to alternate with the lidoderm patches, or not to use the cream 24/7... this cream needs to be made at a compounding pharmacy. I send for mine at a 90 day mail in.. and we get 125 (I think it's grams) a month...
    amitryptyline 2%
    bupivacaine 2%
    gabapentin 5%
    ketamine 5%
    ketoprofen 5% -- One woman wrote that hers has 10%
    lidocaine 2%
    in lidoderm base
    My doc has for me to use it 3 to 5 times a day, and I usually use it twice a day when I alternate with the lidoderm patches. One pharmacy made this and the cream was thick, like crisco, and the 90 day place made it and it was thinner like a thin salad dressing. It has to do with the base they use.. so if you have trouble applying it, work with the pharmacy on the base they use.

    I know so well that nausea from the pain. Try the Shinzen Young CD/Book. Since you said imagry helped you, I think that the Shinzen book will really help you.

    Good luck.
    Jules

    edited for spelling error (I am sure there are more I did not catch!)

    Last edited by daylilyfan; 06-04-2006 at 10:01 PM.

     
    Old 06-04-2006, 11:22 PM   #7
    tiogagurl
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    Re: Please help

    Aww Sharon you made me laugh haha! "Just a positive person having a bad day!" I'm so glad that I have you guys to understand.

    I'm seeing an RSD specialist soon. I stopped taking narcotics so that is why the pain has been escalating again I think, and probably doing more activity than I should. I am off crutches now so I tend to be impatient about easing in to things...

    Hopefully I can sleep better tonight...I tried to take it easy today.

    Thank you,
    Emily

     
    Old 06-04-2006, 11:34 PM   #8
    tiogagurl
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    Smile Re: Please help

    Jules,
    Thanks soo much for all the info!! I'm a 20 college student/athlete (or was). As a psychology major I am very interested in alternative pain management methods also! I will definetly check out the book.

    I had a very bad experience with a massage therapist, but your story encourages me to find a better one. Basically when my therapist began to work on my sites I had to beg her to stop and left in a fit of pain and distress - the burning actually increased. I will try to find someone who works with cranial sacral therapy though.

    I'll talk to my doctor and the RSD specialist I'm seeing soon about the other meds....is baclofen an anti-depressant? I'm taking Pamelor and it has helped with the electric pain some, but it makes me have racing thoughts sometimes.

    I am encouraged that you going pain-med free! Good luck!
    Emily

     
    Old 06-05-2006, 02:06 AM   #9
    daylilyfan
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    Re: Please help

    Emily
    Baclofen is a muscle relaxer. I don't take any anti depressants. I have tried several, but can't take the side effects. I am still interested in trying one called trazadone, but my doc thinks it is to sedating to try. But a lot of the reading I am doing lists it as one of the top antidepressants for pain relief and also for help sleeping.

    About the massage therapy. I didn't say it didn't hurt. When I started, I cried it hurt so bad. After a couple weeks, my body knew what was coming and I would start to cry when I entered the small building that she is located in. BUT - the more she worked, the better it became. I only cry now if it is a VERY bad day when I go. Then, by the time I leave, she has worked her magic, and I am a LOT better. Massage therapy takes time for this type of thing. Each therapist has to learn what level of touch to use on you - even if you don't have RSD. If your therapist did not know anything about RSD, it would be helpful to take some info in ahead of time so that the therapist knows what sort of problem they will be working with.

    The reason I mentioned cranial sacral is that the woman I go to explained to me that in order to take classes in cranial sacral therapy, you have to have taken a lot of other classes first - you have to have attained a certain skill level. SO - she said that people with painful conditions like fibromyalgia should look for therapists that can do cranial sacral because it shows that they have at least taken a certain level of training - and not just graduated from one class a few weeks ago.

    You may have to just talk to a few therapists first to see who you want to have work on you. See who has the most experience. Call a couple Rheumatologists to see if they have any they recommend to their fibromyalgia patients. They would have "light" hands.

     
    Old 06-05-2006, 05:58 PM   #10
    sharon1030
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    Smile Re: Please help

    Hi Emily,

    I hope you sleep better .

    Sharon

     
    Old 06-06-2006, 03:47 AM   #11
    cblasingame
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    Re: Please help

    hi Emily, I take remeron..its an anti depressant....and I take it just as much for sllep as anything else, Ive tried others and cant tolerate the side effects or cant sleep. this one is awesome..truly. I finally sleep better than ever...I take 45 mg before bed. A funny story to go along with th remeron,...I had to stop reading novels as i would fall aslepe with the book in my hand and lose my place, the next night I would use all of my awake time looking for my place..then whammmmmmmmm out again...losing my place AGAIN!! it became a vicous circle, so magazines are my reading material of choice nowat bedtime!! remeron is definaltely worth a try, I know a couple others on here take it as well. Good luck...C

     
    Old 06-06-2006, 03:21 PM   #12
    jumpin-jimmy
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    Re: Please help

    hi emily!
    I know what your going through! I had rotator cuff surgery march 22nd and rsd started almost immediately. I had 5 ganglion nerve blocks which didn't seem to help, and I hope they aren't going to go much further, cause they are very painful! The pain is never ending, and my bed is the chair, haven't been able to sleep in bed because of the pain, and the dr. that is giving the nerve blocks said 2 more, and then I don't know what to do from there! We have to stay positive (which is REALLY hard) and hope that we all get relief.If you hang in there I will hang in there right with you!

     
    Old 06-06-2006, 04:27 PM   #13
    tiogagurl
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    Re: Please help

    Hi C,
    I'll ask my doctor about remeron...yeah I take Pamelor (nortriptline) and although it works pretty well most of the time I get racing thoughts (a side effect) and am sedated a lot...I started taking a higher dose a month ago and my boyfriend has noticed I'm not my usual self, but then again that is the RSD in me too. I'm seeing my doctor soon and will ask about that. Thanks for your support...haha I totally can relate to the reading thing at night! I tell my friends that if they call me late, I reserve the right to not remember anything in the morning haha!

    Emily

     
    Old 06-06-2006, 04:49 PM   #14
    tiogagurl
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    Re: Please help

    Hi jumpin-jimmy,
    I'm new to RSD too!! I've had it for over five months, officially diagnosed May 23, which was good because now I am seeing the right doctors and starting better physical therapy, and I think it's working.

    I know that you probably feel like no one can understand your pain, but the people here do. It's also important for you to know that not moving makes the pain worse, and can make RSD more likely to spread. That may not be what you want to hear, and I know that sometimes all we want to do is curl up into a ball on our beds and cry, which is has a time and place, but it is really important to get up and move, just start by doing a little at a time. You should have your doctor refer you to a Physical Medicine and Rehab doctor, or a Physical therapist who has experience treating RSD. DO NOT USE ICE. When my doctors didn't know I had RSD, they had me icing three times a day and my pain got worse!

    Anyway - Physical therapy and light exercise is your best friend right now! Also, it sounds like you need some better meds, have you seen a pain management doctor? Meds are meant to help you move around and lead a "as normal as possible life", whatever that means.

    Don't be afraid of PT - the cornerstone of RSD recovery is desensitization, which you can also do on your own. I will share what my doctor told me - 15 out of the 20 RSD patients he has treated have fully recovered!! I hope to be 16 out of 21! So here are things you can do

    1) get some various materials, like a feather, kleenex, soft cotton, a towel, - start out with gently touching them to your sensitive areas - at least once a day, do it while watching TV or something, first it may hurt but after awhile the sensations will be dulled. You need to reteach your sympathetic nerves what sensations feel like - that not everything is painful! Work up the roughness gradually.

    2) in the shower or using a washcloth - alternate cool and warm (2-3 minutes each) on your shoulder. I use tubs filled with water since RSD is in my leg. This may sound painful, and it is at first - but you have to take a leap of faith. You have to believe that you have a chance to recover, because you do! Anyone who is new to RSD has a chance. Also - be your own advocate when it comes to doctors, pts, etc. I cannot emphasize this enough. My old PT had no idea what he was doing, had never treated RSD - and I've stopped going to him! Don't feel bad about hurting feelings - this is your body and your life...no one elses! You deserve the best, up to date treatment, no less. Don't let any doctors write you off.
    I'm rooting for you and keep us updated! You can do it!
    Emily

     
    Old 06-06-2006, 06:10 PM   #15
    daylilyfan
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    Re: Please help

    Physical / occupational therapy....
    I went to one about a month after my injury - well actually my original injury was caused by a therapist... but I stopped going when she injured me... then after we figured out about the RSD and I went for my first block, they sent me right away to occupational therapy. They said they had treated RSD, and so I did what they told me. They were really pushing me to stretch further, even if it hurts. That I won't get better unless I work through the pain. Well, after 3 months, I was getting worse. I finally could not take it any more, and I quit. It turned out that the therapist had only treated one other person with RSD. He was trying, he wanted to help. After I stopped going, I stopped all the exercises, and then I waited about 2-3 weeks to let things settle down, and I started all over my self. I did almost all the exercises, but much less aggresive. I worked up to it much slower. I made baby steps - but I was not getting worse.

    Several months later, I went to a doctor at the Clev. Clinic with lots of experience with RSD. She sent me for an evaluation with an occupational therapist at the Clev. Clinic with a LOT of experience with RSD. When I explained what the first therapist was having me do - she was so upset. She said it is critical to go easy with the therapy.. you can't over do it. You need to go to the point of being slightly uncomfortable with the stretches, but not to point of pain. She took away almost all the exercises. She said I must be able to do 3 of them **correctly** before I can start on others. The first therapist was not seeing that my scapula is frozen in place, not allowing me to stretch like I should so no matter how I tried, I would not have been able to do what he wanted. It is a 3 hour drive to see the new therapist, so I only go every 6 weeks. BUT - she knows how to help THE RIGHT WAY....

    My point here is yes, therapy is KEY... but make sure it's the right thing. It should not give you a lot more pain. The first place I went to was having me do things that brought me so much pain, I was nearly passing out, and I did vomit a couple times while there from the pain. That seems to make the RSD "mad" and make it spread.

    The new one said "slow and gentle wins the RSD race.

    Emily - if your doctor is curing 15 of 20 people with RSD, he's a miracle worker. Most sites I have read say 70% will spread and get worse. My pain doc said that "very few" go into remission. The Clev. Clinic specialist (not Stanton Hicks) told me that I likely had it in my foot in 2001 through 2004 from the records I took to her. Her comment on that was "you are one of the lucky few who experienced remission. Since you had it once, perhaps you will be really really lucky and have it again"... That certainly is a different view than your doc's 75% remission rate. You are very lucky to be seeing a doctor with such good success. You will have to keep us posted on what types of treatments he does so that we might gain insight into how he achieves such high rate of success.

    However, having a positive attitude is always important. I know I am clinging to the thread of hope that I won't have to live another 40 or 50 years with this pain. And, I intend to do everything I possibly can to make this RSD go away!!!

     
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