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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS) |
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06-26-2007, 03:11 PM | #1 | |||
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Hi all! Well, good news ! ok I went to my new pain Doc. He is "WONDERFUL", compassionate, loving, sympathetic, etc. ok, Dr. said he has seen 100's of patients with this most awful and most chronic pain anyone can ever go through.(said this RSD he also calls it CRIBS, is rare.. I didn't know this!) My stage is stage 2. Ok, THANK GOD no paralyzing my entire arm.. He said since three ganglion blocks didn't work, why even get more of these blocks done, being it my right hand, wrist, arm and shoulder. He was however mad that I was only given Vico- prophen (Vicodin with Motrin,xtra strenth.) He put me on Kadian(Time released morphine) It is a small capsule that I have to take once a day.(Their real small, but work all day and night) I have not taken 1 yet. ok.. he said he can put this RSD in remission by it just burning itself out!)<HOPE! So, he is sending me to extended (long lasting physcial therapy for as long as it takes, along with the medication>(He upped my Neurotin also at night to 600mg.) he said the dose I'm on is too small. I can drive when "He" says so. so this is what went on today. Yea!!! I finally found a good pain management Dr.who understands!!! Love, and God Bless you all! Love, Desi Oh, he gave me a web site to google it is Web MD.com
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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06-26-2007, 05:10 PM | #2 | |||
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Desi,
I'm so happy for you.. I can hear it in your voice. To finally find someone who cares. It sounds like you are it great hands. I take neurontin 600 at nite and I have been feeling much better. (also 300 mg in the morning). when do you see him again. good luck Mary |
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06-26-2007, 05:55 PM | #3 | ||
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Hi Desi,
I'm so pleased for you that it all went well, I hope the Kadian does a good job for you. Long-term physio may be exactly what you need - just make sure you don't (I mean really, do not) do too much at once, take lots of breaks. Make sure the PT instructor knows about RSD. We've had some good threads here before on this, with links to articles to take with you to give the PT people so they understand what they are dealing with. So do a search back through the forum. And don't go beyond what *you* know is too much. No pain no gain does not apply to RSD, too much PT for too long can be very harmful, specially for anyone over about 25. BTW, CRIBS=CRIPS=CRPS=RSD (sometimes called CRAPS too ) Yes, I agree, it's so good to hear the "smile in your voice", well done, another hurdle over. Take care, all the best |
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06-26-2007, 09:41 PM | #4 | ||
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YEAH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have been told by a couple of RSDers that the time release morphine (kadian) helps a lot. I will be talking to my doc about it, as I have vicodin and I take two every time the pain hits, and it still doesn't completely touch it in a bad flare up. Enough about me, sorry, this is your thread. I am so happy for you. The stress taken from having to deal with a crap doc to a good doc will probably also help with your pain. AWESOME.
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. . CHRISTINE . . I AM NOT A DRUG SEEKER, I AM A PAIN RELIEF SEEKER. |
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06-26-2007, 10:17 PM | #5 | |||
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Hi ya Mary! Many thanks my friend! "Yes' my voice is a singin' LOL I take the neurontin 300 mg. in the afternon and now, 600 in the P.M. (Before I see my pain man. doc. in one month. Oh, did I tell all you friends, that he is "So pretty" LMAO HA HA! Thanks again
Mary! Love, Desi Hi Artist! Thank you, I too hope that the Kadian does it's job. Artist, you were so very right about me using the term RSD AND the term CRPS because this pain Dr. is really on top of this and he said for me to use both too. so, thank you! (This was a while back that ya told me) Anyway, Yes, I do agree with you that long term Physio is a must. This Dr. would NOT let me go up the street(Physio place, my dad go's to) because he said that he wanted to "Keep an eye" on me! LOL From my PMD I can see the huge, and I mean, HUGE room through the glass doors where I go to have my physio. Thanks for reminding me(I would have probably forgot to tell him that too much PT for RSD is too much) Anyone over 25 LOL.. I wish I was 25.. no, I take that back.. them were my "wild days, Artist"! OMG ya had me crackin' up here with BTW, CRIBS= CRPS= RSD(sometimes called CRAPS too) Thanks again my buddy! Love, Desi Hi Christine! Yes, I too had to take two vikes because the pain was awful!! This medication( Kadian) is "Great" so far. It is expensive if you don't have Insurance!! I only had to pay $27.00 something?? for 30 .. Yes, please ask for it, sweetie.. and hey, my friend, thank you so much again! love, Desi
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I Will Always Believe in Poems, Prayers And Promises Love, Desi . |
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06-26-2007, 11:18 PM | #6 | ||
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Have been taking 300 mg neurontin for about 4 months. was to have started with 1 cap for week, increase to 2 for two weeks then to 3 caps..
Did ok with 1 cap... started 2 and I felt dizzy, tired, exhausted, fatigued all the time. plus I was not in control of self and worse, could not think straight and my sentence structure was unfinished sentence or one started and working in incomplete dictionary. NO mind .... NO pain! Cut back down to 1 cap and do OK. Suffered lots from UTI but good urologist took care of that! weight gain, some or just maintaining. Have diabetic neuropathy as am type 1 and for most part am in control. However, with the medictions, I seem to forget when to give extra bolus! Have Osteosporosis, mid to advanced stages, have rheumotoid Arthritis as well, and other problems. Suggested that I go to Pain Management physician! NO, I think Not.. I am in control not the doctor. Think PM doc is over rated and I am not taking more medications. Once the neuropathy symptoms of tingling, sharp jabbing pains, spasms, dead feelings, etc stopped, I can manage with a "tylenol arthritis" as need be or if worse a half an oxycodone cap helps. I am not a pill pusher ! So, no Pain Managment for me! Doc now suggests Lyrica............. which is the worst of the two Neurontin or Lyrica? which has the worst of side effects? Any comments on all this glorybeeric |
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