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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Old 12-11-2012, 12:30 PM #1
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Frown Wish me luck!

I go the see the specialist today! it is just the initial "consultation" but I'm hoping they can at least give me something stronger for pain. I barely slept last night. Pain kept waking me up and i was very sweaty for some reason. It was not just left left arm/hand i was sweaty for some weird reason.....anyways...off I go!
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Old 12-11-2012, 04:59 PM #2
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Default Sitting, Waiting, Wishing,Hoping

so....went to the new Doctors office. Saw the nurse didn't get to talk to doctor. But they have me scheduled fro an appointment 12/19 for my first nerve block. Also "recommended" Lyrica with my other medications. However she couldn't write me a prescription and sent the "order" to my PCP. Grr..and my doctors office is totally booked until next week. I tried calling my doctors assistant to let the doctor know to be expecting it and that I am in large amounts of pain. So to hopefully expedite the prescription order and take it ...I don't know if it will help but I'm hoping it does. I really don't want to be going to the er every week just because I can't take the pain, if my doctors could help with a simple prescription. Also apparently Lyrica is very expensive!! I don't have the money for it out of pocket...about 196.00 for a 60 day supply,...so claims manager is trying to get temp $$ for that sending me a check but wouldn't be here until next week as well.....none of which helps the pain I'm in. MY fiance and I are arguing all the time. He says that since he had to wait 3 years waiting for carpal tunnel to be diagnosed and surgically repaired that he knows exactly what I'm feeling and that I just need to "deal" with it. And not to "put on a face"? I guess I look like I'm in pain........I tried telling him he doesn't know exactly what I'm feeling or how much I can handle because he's not me. I just don;t think he gets the level that CRPS goes to.....and not sure he cares he actually said he worried that I'm not going to be able to take care of him......anyways I'm rambling now......but It's all just stressing me out and making things worse so thank you to all who let me vent on them and took the time to listen to me "bit$h".




Side note do you know what I can expect from the procedure? down time or how long it takes? Does it hurt?
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Old 12-11-2012, 05:44 PM #3
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Hi Emily,

Hopefully your doctor's office can process and expedite the Lyrica......as long as the prescription has been recommended, it will hopefully not have any snags. What are the other meds you are currently on? Yes, some are quite expensive. I just finished a trial of Cymbalta (no help for me) and it was about the same cost as what you quoted for Lyrica. But one thing I've found out about CRPS is that while there certainly are unique symptoms and meds that help, everybody is unique and there is always going to be some trial and error with finding what meds work for YOU.

Most of us (all?) can relate to the pain level and only those of us with CRPS can truly understand it. CRPS is hardly the same as carpal tunnel, but you wouldn't be the first couple to have issues because of chronic pain. Has your fiancee done any reading on CRPS? You may want to find some good articles and ask him to please read them as a favor to you. But compassion and understanding are traits that aren't usually quickly learned.

As for the nerve block, where is your CRPS and what type of block is scheduled? My nerve blocks didn't hurt very much at all; under the hands of an experienced doctor you should be fine! Abnormal sweating is not at all uncommon with CRPS; just so you know.

Good luck and keep us updated!
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Old 12-11-2012, 06:43 PM #4
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Birch,
My CRPS is in my left arm from my bicep to my hand. The block is supposed to be out in my neck. I hoping it will work, saying multiple prayers. My 7yr old said she is "prayering" for me so that has to mean more


Also I did give him info on CRPS he doesn't think I have a "syndrome". I told him 2 different doctors agree with the diagnosis. With himj I seriously don;t know what to do. He has pain issues as well ie herniated C6 & C7 in lower neck. And I still do things, however slowly,like try to clean as best I can. I even dish up his dinner and bring it to him. It's hard to lift or carry anything w/o pain though. And he literally said today He's worried because and I quote "What if something bad happened to me, how could you take care of me?" He also said I need to learn how to deal with this with no medication..........I don't see how this is going to last with that kind of thinking. I tried explaining if I try to have -0- medication I would end up crying most of the time. He still just said you just have to "cope" with it.....and kept turning it to HIS needs.I'm at a loss of what I can do there.
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Old 12-11-2012, 06:46 PM #5
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Default Does anyone have ideas?

I would be grateful to anyone who has suggestions on how I can help my fiance understand!!!! IThe stress is just making everything else worse!!!
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Old 12-11-2012, 07:02 PM #6
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I hate to say this, but it is a very bad sign that your boyfriend has this self centered attitude. A relationship today, is ideally egalitarian. Not Paternalistic. You are seeing an aspect of your boyfriend, that you may not have totally accepted or understood.

Many men feel like they "need" to be taken care of...ie. have a "mother" instead of a wife! a partner in life.

You are not going to change him overnight, or maybe ever! If you attend counseling, you will learn all this from the therapist.

Male centered relationships only last as long as the woman can serve the male and his needs. If the woman becomes ill, or refuses, then that is IT for this type of situation.

If your boyfriend is into partnership, the give and take back and forth with both partners will change with time as various situations demand, and return to baseline or whatever is needed.

At this point, I'd be careful what you say to him and do. He may just need some time to adjust. But if he doesn't... you'll have to decide what to do then.
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Old 12-11-2012, 07:21 PM #7
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You stated you were looking for something stronger for the pain. And also you go to the ER weekly? Using the emergency room to obtain prescriptions is something the doctors office could possibly see with drug monitoring, and it may raise flags. They can run your name and see every ER visit and narcotic prescriptions issued to you. That is just some food for thought if the doctor is reluctant to write for you.
Also, neurontin is a good med and costs much less than lyrica.

I can't say much as far as the significant other goes. Try bringing him to an apt so he can hear what the doc says. Or show him some literature on your condition, there is plenty out there.
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Old 12-11-2012, 08:56 PM #8
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Oh yes the trips to the er 1st one was recommended by 1 of my doc's as no one could see me and the urgent cares in my areas don't "treat pain". so in both cases I was forced to the E.R. And I wpuld explain taht to my doctor as well. I have tried Neurontin it's generic form is Gabapentin, and the side effets for me were horrendous.
And unfortunately I have showed him information. And he has gone to 1 appt where they put lidocain patches on. I still can't believe he said he was upset because "what if" something really bad happened to him how is he supposed tpo take care of me?......he doesn't seem to get it that something REALLY bad has already happened to ME. But then he has said this was my fault in the first place. Said that if I hadn't been in the E.R. it wouldn't have happened........

I think this is close to over. I need someone who can support, love, and take care of me when I need it the most. He seems to either no9t get how bad this is or is pretending it isn't. Either that or his video games and online friends are truly more important to him.....this is seriously the last thing I needed. I don't even have enought money to move out if I wanted to..
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Old 12-11-2012, 09:56 PM #9
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I wear a lido patch and it's awesome. But on the expensive side I thought.
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Old 12-12-2012, 03:39 AM #10
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Make him watch youtube, my video is THe RSD Fighters Anthem and there are many others, if his attitude doesn't change then you are better off without him
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