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 01-24-2014, 05:42 PM #1
Brambledog Brambledog is offline
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Confused Flare of epic proportions...

WARNING: Angry rant / pity party.

I don't know what the heck is going on with the weather here in the UK, but there's another storm coming in, the barometer is dropping, and every cripsy bit of me is shouting loudly tonight...

The last couple of days this has been coming on, I've been feeling crappier by the day. My body doesn't know what to do, my temperature regulation is all over the shop - I'm freezing cold, but the heating is right up, my knee is blue cold, my shin is red and hot. My whole left leg is burning from lower back down to the purple corpse-like tips of my toes. My hips and back ache. My original site (left knee) is alternating between fiery hot and icy cold every few minutes. A new region, the left side of my groin FFS, is acting all kinds of crips. My R (unaffected) knee feels hot and sore. My hands ache, my arm skin is hyper sensitive. My side burns, all the way up the side of my neck and into my hairline. My head aches, the skin between my eyes is permanently furrowed with lines from pain. I feel about a hundred years old.

I hate it hate it hate it. My cheerful outlook has deserted me tonight and I just want to burst into tears. Wouldn't do much good, so I'm doing the traditional VENT out to all you kind folk who I know:

A) get it.
B) have experienced this kind of crap and lived through it.
C) give two hoots.
D) aren't going to patronise me.
E) know more than pretty much every single frickin useless doc out there.

Like all of you, my normal persona hides a lot of pain. Tonight the mask is off. This is me. And I want it to stop.

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; 01-24-2014 at 05:45 PM. Reason: It's muppetry, but less cheerful...took ages to get all the errors out :-/
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Old 01-24-2014, 05:52 PM #2
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I wish I could fly to England to see you and take all of your pain away Bram. I'm so sorry you are hurting so much. I understand how tiring this horrible disease is especially with flares. What I do when I get flares is follow your advice about getting my emergency rsd flare list and kit out and try to remind myself (like you and Vrae and Tessa and Nanc and AZDi and all the others on this forum have told me) that "this too shall pass". I hope your flare ends soon and that you have chocolate around. If not, tell your husband to get you some immediately. And remember the muppetry. That helped put a smile on my face the other night when I was hurting. I'll pray that you feel better soon my friend. Try to get some rest in the meantime. Take care. With love, Renee.
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Old 01-24-2014, 06:24 PM #3
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Oh Bram! So, so sorry you are having such a flare going on right now. I wish I had some magic words to say to make you feel better, but I don't. All I can say is that I understand how you feel. It is so frustrating! Vent away and cry if you need to...it won't help the pain, but sometimes it helps the emotional part of you. I hope this flare is short lived, especially since it is such a bad one.

I agree with Renee, eat some chocolate if that will help the emotions. Watch a funny movie...try to do something that will soothe your soul. Know that I am thinking about you and hoping you feel better soon.

Nanc
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Old 01-24-2014, 06:26 PM #4
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Oh Bram I am so sorry. I wish I could fly to England too. You and others have helped me so much already. I am seeing an amazing pain specialist next week just hope he knows a lot about RSD. I will let y'all know what I find out. I have my worse symptoms in my face around my eyes which is so scarey. I am praying for you. Wish you only the best. Jan
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Old 01-24-2014, 06:42 PM #5
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Thanks so much you amazing folk out there in the ether...

I'm off to bed to try and sleep and hope something knocks me out. I'm hoping that tomorrow I'll read this and chuckle ironically. I suspect not, but I'm hoping .

Don't know what I'd do without being able to reach out to you. And you never let me down. It's a special special feeling.



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 01-24-2014, 06:45 PM #6
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Quote:
Originally Posted by Brambledog View Post
Thanks so much you amazing folk out there in the ether...

I'm off to bed to try and sleep and hope something knocks me out. I'm hoping that tomorrow I'll read this and chuckle ironically. I suspect not, but I'm hoping .

Don't know what I'd do without being able to reach out to you. And you never let me down. It's a special special feeling.



Bram.
Sleep well...I hope! Hoping also for that chuckle tomorrow.

These people are pretty awesome aren't they? Have certainly helped me a lot lately.

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Old 01-24-2014, 09:33 PM #7
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OH BRAM! I am sorry you are hurting so badly. No one should hurt like this. Especially not our Bram, our wise sage, the one who always has the velvet words to make the rest of us feel better. It is 9:30pm on the east coast of America, I'm guessing about 3am in England (?). I can only hope that you are sleeping peacefully by now. I have been listening to Pandora via the Internet, they have lots of music to choose from, but I really like the "spa music" channel when I am hurting. It really helps to calm me. And I use lavendar aromatherapy. Have you been keeping up with your meditation during this rotten winter weather? And your epson warm baths? It has been horribly cold here too, with temps down to 3F at night and wind chills below zero farenheit. Wishing you better days Bram ~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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Old 01-25-2014, 03:59 AM #8
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Thank you thank you

I did that thing this morning where you wake up and lie there, assessing the situation and trying to work out how you feel...turned out it didn't seem too bad. I was relieved. Lay there for a while before I got up.

Fifteen minutes later I'm downstairs, dressed, with a cup of tea. And in that time my left knee has decided I've already overdone it, that burn and ache is back in all sorts of places, and my back is giving me more grief. Guys, I know this is a flare, I know the protocol for getting throughh it. But omg I have had enough already today.

Hope you chaps are doing ok today. It's a real effort today to hoist a smile up on to my face, but I'll try for a few. Just not quite yet...

Plus....get this....it's my youngest daughter's birthday and she has two friends coming for a sleepover. House needs tidying and hoovering, etc. I'm going to have to chivvy. And I'm not in a chivvying mood. And I hate being in pain in front of other people, particularly children, who aren't known for their tact. Bless.

No chuckle yet. I'll let you know if I see one.

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 01-25-2014, 04:29 AM #9
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Bram

I'm sorry you are having such a rough time lately. I've not been having much fun either but didn't really put it together with the weather.

I know you know this but it is worth saying (because I know it is also really difficult to remember when you are hurting) - this flare will pass.

It is too bad your daughter and her friends aren't a wee bit younger. If they were you could trick them into doing the housework by pretending it was a series of party games. You could even give prizes like 'best charwoman'. :P

Hang in there. The chuckles will return.

Kim

Last edited by anon6715; 01-25-2014 at 05:37 AM.
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Old 01-25-2014, 08:01 AM #10
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Still crappy. Took double my Lyrica dose this morning and am hoping that will have some effect... So tired, the burning is exhausting. I know you know this

But....my darling husband has just brought me a bacon and fried egg roll he made himself. Aww. He only learnt to fry and egg three days ago lol, but his skills are good! Delicious. Made me smile it's the simple things that help us through these times. I'm trying to concentrate on those.

Children are both out having a good time, so that's nice. House not looking too bad, just the hoovering to do and a small shopping trip. Both things my J will have to do - much though I'd love to go out, I wouldn't get far today!

Thanks so much for all your messages. Each one gives me strength and a smile, however small.

Bram
__________________
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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