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 10-01-2013, 07:38 PM #1
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Default Another Flare

Great. I feel another flare coming on. Well at least a had a few tolerable days of pain. Looks like it's going to be a long night for me. Hands are killing me. Pain under left rib near my heart. Gotta go to cardiologist, gastro dr., etc. soon. Don't have much space left in my dr calendar for many more appts. I feel so sick to my stomach. Hope you guys have better night than me. Bye for now.
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Old 10-01-2013, 07:55 PM #2
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So sorry you are feeling so rough tonight. I sure hope if it is a flare, that it is not a bad or long-lasting one. It is important that you make those appointments...I totally get it about so many appointments, it gets old I know.

Hope you can get over this flare quickly and have a better tomorrow.
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Old 10-02-2013, 03:34 AM #3
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Sorry you're feeling so rubbish, it's scary isn't it. I'm in one myself since yesterday. My feet started burning badly by late morning (always a bad sign) and were just bright red all across the soles like a baboon's bum. The heat coming off them was incredible. Nothing helped. That was a low point - I looked like hell by bedtime

I hope yours passes quickly (and mine!) and you can feel a bit better. I keep telling myself it is a flare, it will pass, this isn't forever. Sometimes it helps, other times it sounds like a cruel joke... But it will pass. Keep believing

Take care,

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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Old 10-02-2013, 09:23 AM #4
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Default I hope your night wasn't as bad as you thought

RSD- Renee,

I am so sorry you are in a flare!! I'm hoping you had a good nights sleep and that today will be better for you. Gosh living with CRPS is like playing dodge ball all day with a blind fold on!! My heart goes out to you while you face this day.

Tessa
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Old 10-02-2013, 11:40 AM #5
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Thanks everyone.

I was up early in the night with pain, but slept a little later on.
It wasn't as bad a flare as last week, but bad enough that I started wondering if I could take this pain much longer. I'm so tired of this relentless disease.

Then my son called me from college out of the blue (he's a night owl like me) and we talked and laughed about our lives.
He made me feel so much better just by being there. I didn't tell him how bad I felt, but after hearing his voice, I actually felt a little better. Mentally and physicially. It's strange how life works isn't it. After that I fell asleep for the rest of the night and feel that the flare is over now. Thank goodness it was a short one. Anyway, thanks again for your caring and support too. You all mean so much to me too and knowing you care helps me get through the rough patches too. I hope I'm not venting too much though.

And Bram, I hope your flare ends soon and your feet feel better soon. I'm sorry your had a bad night too.

Thanks again Nanc, Bram, Tessa and all my other very special rsd friends. You all mean so much too me. You're like my extended family. I hope you all have wonderfully pain-free day today.
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Old 10-02-2013, 11:55 AM #6
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How exactly does a flare feel? Obviously everybody is going to be different, I'm just at the beggining of this awful path.

I ask because almost two weeks ago I kind of overdid it, came home and the next day could barely move. Since then my feet have been on fire and my SI joint has been especially sore. Last night I put some capcasian cream on the feet, didn't feel it at all, but I can feel it a little this morning. I'm hoping that helps my circulation enough to stabilize the pain so I can walk. My tremors also started up again about a week ago, then got worse after having to take DH to the ER. Between the overdoing it and stress I'm a shaky bag of pain.

What else might the flares include? Is it just increase in pain and the symptoms I currently have?
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Old 10-02-2013, 12:47 PM #7
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Hi chaos

I suspect our flares are slightly different from one another, but I'll tell you my definition lol. Yours does sound like a flare, I hope it passes soon...

Normally (ahhh. What is normal anymore?!) I have pain, but I can tolerate it and still get on with my usual life (usual life now lol). I have the icy cold pain, some burning hot pain, usually in the evening, aches and pins and needles stuff.

During a flare (like now ) I feel generally lousy on top - I am tired, have a headache, I feel slightly spaced and wobbly, I am weaker, stumble more, am more clumsy, and struggle to formulate sentences at times. I have to check my writing and correct this a lot more! My pain levels are higher and I can have some weird pains in unusual places, or just unexpected pain in the usual places. It feels as though every synptom i can have happens all at once. I was out just now and had really bad pain suddenly in my arm and shoulder, and my hand has the freshly-sandpapered feeling... My knee hurts worse and is prone to giving way, clothes feel more uncomfortable, i ache all over.... Basically it's like CRPS-squared.

Going by history, this will hopefully only last until the weather has settled a bit again (we are working up to a load of rain right now, pressure is falling), about 3-7 days. If I'm unlucky it will be more major, and might last 2-3 weeks or more. They will be long days, where I just want to hibernate and feel sorry for myself, and definitely not pretend to cope just fine with it all. I'll want to plead with a doc to give me something that works on it, but I know nothing really does for me, so I normally try to avoid it.

For me, that's a flare. I have to keep reminding myself that they pass. Just typing now is making my fingertips and hands hurt... Most of my flares are either weather-related or because I've done something stupid and overdone things majorly. I try to learn from experience lol, but the weather ones I can't control, and they seem very cruel

You learn to get through by doing whatever makes you feel a tiny bit better. Warm baths, epsoms, warmth, relaxation, meditation, massage, soft lighting and music, nice food, a few treats, good conversation with nice people who know you are feeling crappy... and of course raiding your meds bag for something if it gets bad.

Good luck with your flare, and I hope things settle soon - if they don't, then go to see your pain doc, as you might be experiencing a general worsening of your CRPS and need a meds review. Hopefully thats not the case. Keep exercising gently when you can as it does help...

PM me anytime if you want to, I am on every day!

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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Old 10-02-2013, 12:59 PM #8
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Quote:
Originally Posted by chaos View Post
How exactly does a flare feel? Obviously everybody is going to be different, I'm just at the beggining of this awful path.

I ask because almost two weeks ago I kind of overdid it, came home and the next day could barely move. Since then my feet have been on fire and my SI joint has been especially sore. Last night I put some capcasian cream on the feet, didn't feel it at all, but I can feel it a little this morning. I'm hoping that helps my circulation enough to stabilize the pain so I can walk. My tremors also started up again about a week ago, then got worse after having to take DH to the ER. Between the overdoing it and stress I'm a shaky bag of pain.

What else might the flares include? Is it just increase in pain and the symptoms I currently have?
Flares are different for everyone, and mine vary too, but I'll try to describe the best way I can what they felt like to me last night.
It started with a deep aching, burning pain in my stomach which got increasingly worse over the course of a few hours. It feels like aching and burning from the inside out. Then the pain spread to the my limbs. (My arms, hands, legs and feet.) That pain feels like a deep aching cold pain in my bones and then a burning electrical like pain. That burning pain makes it so bad, that even putting a sheet on my skin hurt. It can last for me from hours to days, but "luckily" last night it was only a few hours. The meds help numb the pain. The combo of neurontin and percocet help me with that. If I didn't have those meds, I don't think I would be able to go on. My hands hurt so much that even picking up the remote for my tv hurt and my feet hurt if I tried to stand. And on top of that my Fibromyalgia caused more pain too. It made all of bones hurt if the slightest pressure was applied to them. The bones in my ribcage and feet hurt the most last night because of this. And then the acid in my stomach got worse and caused burning and nausea. My rsd hand felt colder than my other hand and started spasming. It felt like everytime I typed (even though I didn't type that much ) I started getting a vibrating, burning pain that increased the more I typed and then it started cramping up and got really cold. And my fingertips hurt when they push on the keys and the mouse.
I had to stop and go lie down because of all of this. Lying down seems to help sometimes. I find too that when I'm having a less painful day, that I try to do more and then pay for it for a few days after. The pain increases ad I can barely move. Well I hope this helps and that you feel better soon so that you can enjoy your day.
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