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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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02-05-2014, 12:41 AM | #1 | |||
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Hi my fellow RSDers, I hope you all are having a good night.
I myself am having a really hard time & have been for awhile just some days worse than others such as the past week so instead of continuing to hold it in I thought I'd vent on here cuz I'm @ my wits end My doc changed my pain meds to 2mg dilaudid trying to help with my pain but it's not worked Ive been on it since the 21st of last month & I was really praying that the change would help but it really hasn't done much more than the perk's I was on & Im to the point beyond tears I just don't know what to do I'm not sure how much more I can take of this it feels like my entire body is on fire in a vice grip & being ripped off all at the same time is the only way I can think to describe it. Im not sleeping sometimes for a couple days at a time because of the pain & I'm starting to feel like I'm gonna just lose my mind, & getting more depressed. I just don't know anymore. thank you all for being here to listen & vent to I'd feel even more alone than I already do w/out all of you & of course my mom & gma.. I hope you all are having better time than me til next time take care ps on a side note has anyone else had problems changing their mood cuz I haven't been able to change mine for a little while
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~HEIDI~ GENERALIZED RSD/CRPS stage II/III (entire body . ) since 2004 HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift> ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY . |
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02-05-2014, 11:51 AM | #2 | ||
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Go take an epsom salt soak. Relax as much as you can. I'm sorry you're hurting so much. Sounds like you're in a really bad flare. Dulaudid is a pretty strong pain med. It sucks it's not working for you. I have been on and off Lortabs for 10 yrs. A dr put me on percocet once and I had a bad hallucination. I told my husband he looked like the devil then past out. I didn't take another one. I wish I could take everyones pain away or take it on myself. I hate hearing about people hurting. I will pray you feel better soon and this horrible beast lets up its hold a bit.
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02-05-2014, 12:00 PM | #3 | |||
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Wow, I think you need to call the doctor and try something new. Trying to find pain meds that help can be hard. I know how unfair it is. I have to take muscle relaxers to sleep. It's ridiculous. I just thought...I use aspercreme for pain I can't tolerate. It helps to put the fire out for a bit.
I hope that you can find help and relief soon! good luck to you!! Heather
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--------------------------------------------------- RSD since 8/2005 Originally in left and right foot Spread in 2006 and Jan 2014 Both legs, arms. Chronic pain going back to 1992 . |
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"Thanks for this!" says: | Allanira (02-05-2014), Hana (02-11-2014), HeidiB (02-07-2014), moosey2me (02-09-2014), PamelaJune (02-13-2014) |
02-06-2014, 10:39 PM | #4 | ||
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Hi Heidi,
I'm sorry that you are having a really tough time right now. There are soooo many frustrations dealing with chronic pain. Despite my experiences, I still get zinged with getting my hopes up with any new med or treatment, when I SHOULD know that 9 times out of 10, it won't help. Do you mind me asking what you were taking before for pain ? Did you switch because it wasn't strong enough, didn't last long enough, or because of side effects ?
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. Gee, this looks like a great place to sit and have a picnic with my yummy bone ! |
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02-06-2014, 11:15 PM | #5 | ||
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Heidi - no one should have to suffer like this. I am so sorry. And I have been there more than a few times. Call the prescriber first thing in the morning to get a new plan. In the meantime, try comfort measures: warm epsom salt bath, peaceful music (i like pandora's "Spa radio" the best), call a friend., do some gentle stretching to help relax you Feel better soon ~Lottie
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1999 Chronic spine pain related to Degenerative Disc Disease, Sept 2001. C6 / C7 discectomy & fusion. Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement. July 2011 removal of broken . Artificial Disc Replacement. Woke up in recovery room with RSD Monster.: . Aug 2011 Stabilization of spine at L3/L4/L5. October 2014 Rheumatoid Arthritis. |
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02-07-2014, 02:18 AM | #6 | |||
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I'm gonna call doc first thing & see what he has to say, because this is too much pain to deal with I feel like I'm gonna just go nuts & I've just sat in my room in tears for days just cant keep feeling this way. I really had hope the new pain med (doladid 2mg) would help, but it hasn't. I got to thinking too that maybe something else is wrong so I went on WebMD today put a lot of my symptoms in & it just kept saying seek medical attrition & the things it said could be wrong made sense so gonna talk to doc about that too & see what he says to do..THANK YOU ALL for the moral support it really helps to know I have all of you from the bottom of my heart thank you
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~HEIDI~ GENERALIZED RSD/CRPS stage II/III (entire body . ) since 2004 HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift> ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY . |
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"Thanks for this!" says: | moosey2me (02-09-2014), PamelaJune (02-13-2014) |
02-07-2014, 02:34 AM | #7 | |||
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PS> on a side note I haven't been able to change "my mood" in awhile now was wondering if I'm the only one who's having the problem or anyone else having same issue & how do I fix it? I've logged out done a refresh of the page everything I can think of but noting so thought Id ask you all, thank you all again & I hope you all are having an easier time than me your all in my thoughts & my prayers
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~HEIDI~ GENERALIZED RSD/CRPS stage II/III (entire body . ) since 2004 HIP DYSPLASIA(right side), hip turned & tilted into back & aprox 2in higher than left side; <wear a shoe lift> ARTHRITIS in both hips & Pelvis; Both Ball Joints are Deteriorating; SIATICA (both sides now) & EPILEPSY . |
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02-07-2014, 07:07 AM | #8 | |||
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Can you tell me what else you are taking? I had to end up on a combo of medications. Dialudid though is very short acting. You get the high then it drops you. And most of the time doesn't touch the pain unless you take it continuously.
I ended up on a antidepressant (which helps for pain and sleep). A pain patch. Break through pain med. neurontin. And clonidine. Like I said usually it takes a combo of meds.
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. GOD help me be faithful in the midst of my suffering. Alt1268 |
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"Thanks for this!" says: | HeidiB (02-13-2014) |
02-07-2014, 07:36 AM | #9 | ||
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So sorry Heidi, I hope you start to feel a little better very soon. It is an exhausting disease to have when the pain is high and relentless...
I'm feeling crappy myself with a pain spike with these darned weather changes here in the UK, didn't sleep well, pain all over the place today, tears and frustrations ongoing. Just had a go at my poor husband about his lack of gardening interest because the sun is out for a few hours before the next storm comes in, and I'd like to sit outside for ten minutes and get some sunshine, but the garden is a neglected muddy deathtrap for me since I haven't been able to garden myself. It gets me down. Usually I'd just complain a bit, but today I'm a donkey on the edge... Know that you're not alone, and hang in there. I hope someone can help you out with some better med options quickly. Keep fighting to get what you need. BTW, haven't changed my 'mood' icon for months, I'm on the iPad, and if I try it bombs out! Thinking of you. Bram
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CRPS started in left knee after op in Aug. 2011 Spread to entire left leg and foot, left arm, right foot. Coeliac since 2007. Patella femoral arthritis both knees. Keep smiling! . Last edited by Brambledog; 02-07-2014 at 07:39 AM. Reason: I think we all know. Today I am a miserable muppet. |
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02-07-2014, 08:08 AM | #10 | ||
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I spent most of my adult life in an alternative medicine practice (primarily massage). One night during my worst episode of flames roaring off my arm with a burning cold inside, so bad I could barely breath much less sleep and I grabbed a tube of an extremely pure, high grade, essential oil cream that I used on injured patients at the clinic where I worked. I had no expectations having always used it myself and others for sports injuries and muscle strain etc. But I applied it and the next thing I knew I was waking up in the morning and my intense pain was gone. I'm not going to insist it was the cream because I don't know for sure but I think it was at least a factor. It is quite different than other creams and was also very popular with my patients on their varied injuries.
I haven't yet had a new episode of that magnitude to see if I can duplicate that result. Anyway, I have a bunch of sample packets that I still have since I had to stop seeing patients when the CRPS hit me. If you want I can send you a couple to see if it helps you. If you're interested let me know where to send them. It wouldn't cost you or me anything since I have them and I have a stamp. |
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