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 09-02-2013, 07:31 PM #1
ALASKA MIKE ALASKA MIKE is offline
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Once you get the spasm under control you might need to visit your Chiro to prevent more spasms.
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Hoping you feel better,

ALASKA MIKE
ARACHNOIDITIS,CRPStype2/CAUSALGIA since 2004
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Vrae (09-02-2013)
Old 09-02-2013, 11:40 PM #2
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Lightbulb A lesson in pain control / stress management … when will I ever learn??

So... one would think that after almost 10 years with this monster I would know when my pain is getting out of control and to seek immediate help, because I do know that staying ahead of the pain is paramount. The short story is that the ones who said go to the ER, you were right. I know, I know, I’m as stubborn as they come.


I had been suffering for four days. Not only my back but my CRPS II was out of hand as well. I tried and tried to use the drugs I had, but in the end I needed far more than I could do at home. I had a few moments that I thought okay it’s a little better, but then WHAM!


Last night I could no longer take the pain anymore and went to the ER. Given the outrageous pain, and that today was a holiday, and not knowing exactly when I could see my doc, and not sure what he could have done in his office; I went. Kicking and screaming, but I went. I REALLY HATE the ER! BUT, it turned out to be an okay experience after all.


The first doc I saw straight up said "I don’t know what CRPS is". He also said, "you probably know more about it than I do". That was refreshing! I prefer that than trying to BS me. So after explaining my current back situation, and the back surgery that lead to CRPS, what CRPS is, my symptoms, and how all my symptoms were off the charts (back & CRPS) and how I had tried EVERYTHING I could (drugs, Epson baths, rest, etc.), they started to load me up.

They eased me in with valium, then it was a couple of 5/325 Percocet’s, then I requested Zofran, did that, and then it was a shot of dilaudid, followed by more Zofran (did I mention I don’t do these drugs well?) then a shot of toradol to reduce inflammation, and a round of Phenergan; I was feeling MUCH better. Yes, very doped up, but not in pain, and thanks to Zofran and Phenergan I wasn’t going to hurl.

I had done high doses of ibuprofen for so long in the past that my stomach couldn’t take it anymore. That was a year and a half ago, and this was the first time I’ve had any NSAID’s (toradol) since I quit them. Seemed to all work out okay. Does that mean I can take them again?? Ibuprofen was always my drug of choice. 800mg several times a day.


Anywho, came home, rested, and woke up ready to tackle my kitchen (yuck). But after four days I was glad to be out of pain (about 90%) and out of bed. I kind of pushed a little much and could start to feel things getting irritated and had to stop. Got the kitchen clean though (yay)! So like a good CRPS pt. I took more drugs, another Epson salt bath, and am now back to laying down and resting. This laying around ALL day stuff begins to make me nuts!!


After I have thought about all this, I think I know what happened. I was doing pretty good on the CRPS drugs my new doc had me on, but he gave me the max dose of Gabapentin, which tore up my stomach, and 100mg at night of amitriptyline which after time was drying my head out. Like I would wake up and my tongue would be nearly cracking and nose sore and bleeding. Soma nightly, and tramadol PRN.

I started to back off the Gaba, and quit the amitriptyline, and simultaneously all hell was breaking lose with a family issue (not my husband), AND I had been working my buns off physically (pushing myself like crazy), the clouds rolled in (rain was coming), and I started my period. Yep, that was it…. All those things combined, and BAM! I’m down for the count.

I know better with the stressful stuff, and still I have to work at healthy boundaries with extended family. My regular life is stressful enough, and anything extra… well, I just can’t do it. I need to start saying NO more often. I need to remind myself that I have a disease that feeds on stress, be it emotional or physical and I had both going on. Along with a reduction in meds, drastic change in weather, and good ole flo … it was like the perfect storm for both my back and the CRPS.

My next move is to get into the doc ASAP and get the meds worked out, and get my back further looked at. It is still tender, but I am nowhere near the pain I was in.

Thanks for listening! I sometimes post here all this crap going on with me so I will have some kind of record. And bonus, I get great feedback!

Last edited by Vrae; 09-03-2013 at 12:06 AM.
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Old 09-03-2013, 03:17 AM #3
Brambledog Brambledog is offline
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So glad you are out the other side of the nightmare and feeling more like Vrae!!

Sounds like you learnt a lot from the experience but at least you will be aware of the lead up to the perfect storm and hopefully see it off at the pass next time...

Don't beat yourself up about not spotting the danger signs. I am into my third year now (good grief is that all? Feels like more!) and still have those hindsight moments where I am in bad trouble pain wise and kind of piece the puzzle together....oh, THAT'S why I am feeling so awful....duh.... You can't be thinking about your disease every minute of every day because when all is said and done we are all trying to live our lives DESPITE the darn thing - and sometimes you can't avoid the stress of a situation, that stress can make you forget your meds or do too much, or just lose it emotionally. You aren't a robot my lovely

I'm stubborn too. I hate hospitals and doctors, and having to explain what CRPS is when you are in donkey-on-the-edge mode and just want it all to go away. But yes, four days of agony is probably just a tad overdoing it lol. Maybe give yourself two days max to try and control it yourself before seeking help? I'm so glad you had a good experience and saw a decent doc though - makes all the difference in the world. If you possibly can, please write to the hospital and say that - it might make a big difference to their overall approach to provide some positive feedback. Maybe another (less sympathetic/sensible) doc there will think twice about how he treats chronic pain patients. We can always hope!

Take it gently for a few days now and give your poor body a chance to get over those awful days. I heartily recommend a quiet afternoon with a good tv series, a bar of chocolate and a cup of tea. Ahhhhhhh. Carefully ease into more activity, and you'll be leaping rivers in a single bound in no time. Well perhaps not quite, but you know what I mean.

Sorry, am in a silly mood this morning. Husband tried to get amorous and hilarity ensued for various reasons lol. No result as it were, haha, but lots of laughter and I feel smiley for the first time in a few difficult days Autumn is here, and I am feeling it. Ouch.

Glad you are ok

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!
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Djhasty (09-04-2013), Vrae (09-03-2013)
Old 09-03-2013, 05:31 PM #4
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Quote:
Originally Posted by Brambledog View Post
I hate hospitals and doctors, and having to explain what CRPS is when you are in donkey-on-the-edge mode and just want it all to go away.

Sorry, am in a silly mood this morning. Husband tried to get amorous and hilarity ensued for various reasons lol. No result as it were, haha, but lots of laughter and I feel smiley for the first time in a few difficult days Autumn is here, and I am feeling it. Ouch.

Glad you are ok

Bram.
LMAO: Donkey on the edge...

Silly is good, and silly with your husband is real good medicine. So glad that you are smiling and feeling a bit better.

We are still waiting on Autumn but it should be arriving almost any day now. The Aspen Trees will turn beautiful shades of gold soon. It is a most incredible sight to see here. Thousand and thousands of them, with a dash of Blue Spruce Pines, and other vegetation with it's auburn, orange, and yellows all on a backdrop of the Rockies ... there's a Sunday drive with my husband coming REAL soon. We went not too long ago, and I am going to try and upload a few pics of Colorful Colorado Hope they come in large enough to see.
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Brambledog (09-04-2013)
Old 09-03-2013, 06:04 PM #5
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Glad you and hubby had a good giggle. That is the best medicine of all. Keep right on laughing. ginnie
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Brambledog (09-04-2013)
Old 09-04-2013, 02:45 AM #6
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Thanks Vrae and Ginnie

Wow Vrae. WOW. You are lucky to have such magnificent landscapes nearby - there's nothing like a beautiful something to make you feel that special kind of pain-distracting wow. I love it when just something you sees makes you smile and feel good, amazing really... We were driving home from my parents house on Sunday and there was the most amazing sunset, it went through every colour from vivid feiry orange/red to gentle lilac, all through these beautiful slivers and puffs of cloud on the horizon. We were all in a perpetual state of WOW for 20 minutes! Felt good

Have a great day both of you. Children are back at school after six long weeks, the sun is shining, the air is crisp (ow), and the house at last quiet.....ahh..... Doctor Bram prescribes a cup of tea, some calm music, and a chapter of my book before I start trying to do any chores

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!
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