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 11-11-2013, 08:17 AM #11
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Yes i too get major headaches from opiates but since i stopped taking them my
pain is less and no headaches. I found that the opiates increased my pain when they start to ware off so what you do is take another then another and its just a vicious cycle. Hi i am Mike i have crps of my entire right side started from RSI milking cows have had for seven years now i am from New Zealand i am 36 divorced not long after i got crps just looking for others who understand what i am going through. Hope what i said helped in some way
Hello Mike - Welcome to the group and thanks for sharing!
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Old 11-11-2013, 10:01 AM #12
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Originally Posted by freebird36 View Post
Yes i too get major headaches from opiates but since i stopped taking them my
pain is less and no headaches. I found that the opiates increased my pain when they start to ware off so what you do is take another then another and its just a vicious cycle. Hi i am Mike i have crps of my entire right side started from RSI milking cows have had for seven years now i am from New Zealand i am 36 divorced not long after i got crps just looking for others who understand what i am going through. Hope what i said helped in some way
Hi Mike from New Zealand! Thanks for the response and welcome to the group! So sorry to hear that you too have this damn monster. You've found a good spot in this group as we really do understand what you're going through and the support is amazing.
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 11-11-2013, 10:30 AM #13
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Oh Gosh.. I can so relate!! I'm so glad your husband has come out on top again and can provide you with much needed insurance; what a blessing! It is a blessing, now if I can afford to use it. We are still hanging on by our fingernails while he works to obtain his degree and tries to make not only his share, but my share too. I don't mean to sound negative, just wanted to be real about our situation. It's fragile.

BTW.. I've discussed MMJ with my provider and they are okay with me using it but, for whatever reason don't themselves write the scripts for it. If things get much worse, I'm going to give it a shot!

I did the same thing long ago and like you found that they don't / won't write that Rx. Just crazy to me, but whatever. Yep, if you decide to try MMJ you'll have to go to an MMJ doctor. I feel pretty lucky that I live in an area that it is even possible. Having a legit place to purchase it has sure taken the seediness and underground feeling out of it. That is good news for those who can benefit and don't want to be in dark alley somewhere trying to purchase it.

If I may suggest a couple of things that make a little dent in my pain that might also help you based on what I've read recently from you. But of course! Please! Medicated compound cream is even better than volteran gel.. that is on my list for my convo on wednesday. Brown's Pharmacy makes one with Ketamine and Baclophen ut oh, I don't do baclophen as I had a horrible reaction to it, but I am anxious to try anything ketamine. (sp?) which I use like a bath on all limbs 3xper day. Butrans is the patch I am on.. haven't heard of it but will check it out for sure.I started at 5mcg/hour but once my arms became symptomatic we have increased the dosage to 10mcg/hr but, I only add the second patch when I can't get pain under control by other means. The patch gave me the same headache as other pain meds for about 2 days, nausea/vomiting lasted almost a week and the fogginess about the same. By the second week I didn't even notice I was on 24 hour med control except that my level 10 pain was much less frequent and my moods (directly related to pain levels) was markedly improved. Physically I was able to do more, sleep also improved from waking nearly every hour to sleeping for 2-3 without waking. Sadly as symptoms spread sleep isn't as good anymore yeah, that stinks doesn't it? I'm a 2-3 hr girl myself... ug. The other thing I can't live without is the lidoderm patches..yes, these are on my list. It's been a while since I've had any and they are a lifesaver at times for sure. without them intimacy would be even more difficult. lol.. they aren't sexy but they sure help with sensitivity for long enough to make it enjoyable sorry if that was TMI. Never TMI, I have had the electric shock in that area too, and Oh My Gawd... OUCH! Sounds like yours is much more prevalent in that area. You should be so proud of yourself that you have found and seek out workarounds.

Oh the muscle aches.. my legs feel like I ran a marathon every single day ugh! I feel for you.. wishn' for a better tomorrow for all!

Tessa

Thanks so much for sharing Tessa! You really strike me as a pretty together gal and I envy that. (If you're faking it, don't stop, I enjoy it! lol) I am SO TRYING to get "IT", all of "IT" together (lol). Right now I am muddling my way through. My plan, yep I have one (lol), is to get the biz wound down and it could take years to get my house in order again from the sheer slow pace of it all. While I work on that, I must find a way to get my health, pain and weight under control. I pass a mirror and don't even recognize myself. Enough of that, what I am trying to say is, thank you for all of the wonderful advice!
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CRPS II Full Body via L5-S1 Discectomy Surgery in 2004
Symptoms started upon waking from surgery in right foot/leg, mirrored to left foot/leg and then EVERYWHERE else.

Vision without action is a daydream. Action without vision is a nightmare. Japanese proverb,
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Old 11-11-2013, 03:36 PM #14
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Thanks so much for sharing Tessa! You really strike me as a pretty together gal and I envy that. (If you're faking it, don't stop, I enjoy it! lol) lol.. then I'll keep faking Truth is, I'm only together when I'm not a wreck thankfully you can't see me through this forum I am SO TRYING to get "IT", all of "IT" together (lol). Right now I am muddling my way through. keep trying and when you figure "it" out let me know so maybe I don't keep running into my wall!! My plan, yep I have one (lol), is to get the biz wound down and it could take years to get my house in order again from the sheer slow pace of it all. lol.. all I want for Christmas is a week long maid .. I tried singing that for a year.. didn't work for me but maybe it will work for you While I work on that, I must find a way to get my health, pain and weight under control. I pass a mirror and don't even recognize myself. ditto.. what helped me manage my own weight especially since on Gabapentin is not touching anything in a box, or with corn, or soy.. haha.. it's tough to find anything without it but it works! Enough of that, what I am trying to say is, thank you for all of the wonderful advice!
Oh.. thank you.. I often wonder if I should post at all .. Thank you!!


Lol.. always be real!! I never took the comments as negative in any way especially with regard to your husband! The reality is we are also hangn’ by a very ‘thready’ shoestring and have been since my accident precipitated this whole mess. I think at last count our medical bills were nearing 1.7M (12 surgeries, 35+ days in the hospital, 16 weeks laying in a hospital bed in my living room and I think somewhere near 256 doctor’s office visits to treat the many different body parts that were injured… lol.. yes I completely understand as does my husband, it is a huge responsibility to take on the weight of what we were once accustomed to financially. I commend all those who act in this manner graciously!! BTW – I wasn’t sharing the above to minimize your situation the truth is, we are all facing our own Gigantium (lol is that even a word?!) pile of bills and no matter what the size if the funds are there they cause huge stressors! Thank goodness we have somehow managed not to lose everything but, we have obviously had to give up many of life’s pleasures along the way and at times that does cause guilt and/or resentment that if left unaddressed can really wreak havoc on a marriage. I’ve learned this the hard way!

Haha, I’ve actually sat in the office of an MMJ place and even though it was legit, it still felt ‘seedy’ so I snuck out.. that was several months ago! I should just do it, I have never been against it and even partook on a few occasions just for pleasure so I honestly don’t know why I am even hesitant. I guess mostly it stems from reading somewhere that some doctors won’t prescribe medications if you are supplementing with MMJ even in the legalized states. Thankfully my doctor is okay with it.. but what if I have to change? Ugh.. IDK

I personally wouldn't discount the compound cream just because of your past experience with it. It will be a small amount and isn't processed the same via a cream as it would be through IV or otherwise. I still use the volteran only because I find that switching things up keeps it working better for longer. Sometimes I have to stop a certain medication for a few days to re-up its effectiveness My doctors promote that and say it is a common occurrence with neuropathic pain to become tolerant of meds no matter how it is administered, I hope your team will work with you on this as well.
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