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.

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.

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
:hug:

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

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.

:hug:

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.

:hug::hug::hug:

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

Thank you thank you :hug:

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...:rolleyes:

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 :grouphug:

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

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 :grouphug:

A great day to relax and watch a good movie or 2!! Hoping the pain/burning lets up some soon!

I'm late chiming in as usual, I'm so sorry you're dealing with all that!!
I was white knuckling it & gritting my teeth along with you as I read.

I REALLY don't know how you do it with children still at home! On better days/times it could be a good distraction in a way. But then you can't just say
I've had enough whenever you feel like it.
Please don't try to be supermom and make it simple as possible.

Bram you're such a good writer even in the midst of torture, you should be
our spokesperson!! (Like you need another duty).

Please update us when you can. Thinking of you!

Thanks AzDi :)

I'm doing ok. I've been taking it easy today while trying to move about every now and then...a tricky knife-edge. I think the double dose of Lyrica this morning has helped a bit, but I'm just shattered. My daughter's friends are here now and all being as daft as you'd expect lol, but because I rested up a lot earlier, I've been able to fake it through the few ten minute patches I needed to. they're having a good time and haven't noticed anything. I count that as an achievement!

Once they've finished eating (they're giggling and gobbling in the kitchen now) they are having the run of the ground floor, and my husband and I are going upstairs to lounge on our bed and read and chat. Might be quite nice :) The kids are sleeping (hopefully) in the lounge, so it should be nice and quiet upstairs.

We had some mental weather today in one short burst. Really high gusts of wind, along with hail. The house actually vibrated with one gust, it was weird. I'm hoping that was the peak of the low, if you know what I mean :winky:.

Now if I can just get some decent sleep....:p

I know I keep saying it, but thanks everyone. In a crisis, you are there. It's amazing. Hope you are all doing ok today and the pain is low.

Bram :grouphug:

Glad we were able to help in even the smallest of ways. Pace yourself! Your daughter is old enough to understand that Mum is doing the best she can.Keep your checklist of comfort measures handy, and YES this flare will indeed pass! Thinking of you Bram!

So sorry
 

Hi bram,
I am new to this site so I don't know you, but I still wanted to say that I am so sorry for what you are going thru. The weather here has been bad as well and I hate going out in it. It's like as soon as the door opens it's automatic pain. We are actually looking to move somewhere that does not get this kind of nasty weather. That is one trigger that I actually can remove from my life.
What part of the uk do u love in? My sister is moving there next week for 3 years for her husbands job. I will be visiting at some point while they are there.
Again, I truly hope that you get some relief soon, I will be praying for you.
Kristin

omg, Bram. I don't know how you get through all this with a child around. That has got to be so difficult. Your family will never truly know what it feels like to be you because of course, so much pain is just beyond description. I feel so bad for your having to carry such a heavy burden.

If doctors could ever feel that pain, they would dedicate their lives to solving this.

:hug:

Bram, a question - might you also have Raynauds? I've had the Raynauds Disease since childhood and I know the combo of that with the RSD really complicates things.

Bram, I hope you are feeling better today. My thoughts and prayers are with you. Take care. From your friend, Renee.

Well I did it :) I've faked my way through a whole late morning and early afternoon of child's-birthday-madness...:p

Just got back, made a cup of tea, and collapsed onto the sofa with a warm blanket over my legs. They are frozen. I'm dreading it when they wake up! I can feel the hot burn starting in my shins... It was lovely seeing them all enjoy themselves, and I managed to find places to sit down for much of it, but it was chilly anyway, and too much walking for my present state. But they had a lovely time and are still giggling away on the floor here - more like toddlers than 11-year-olds!!!

Thanks for every single message here, it always means such a lot to reach out and have you all there like a little safety net :winky:

A short rest, and then we're out again in two hours time, over to my parents house for tea. Ah, the peace of a Sunday... Ooo ouch, the cold pain is transforming into that weird searing sensitive heat pain. We are such a lucky bunch aren't we? LOL.

Hope you are all doing ok today x

Bram :grouphug:

Hi Bram
 

Wish the pain would go away for you. I am sorry you are suffering. xginnie:hug::grouphug:

That's a tricky one Sage... From what I've read, Raynauds phenomenon can occur within CRPS, as well as as a separate disease of its own. Something to do with whether it's primary or secondary Raynauds. I'm pretty sure I don't have Raynauds, the only similarity really is the cold blueness of my skin sometimes, but that is a definite part of the CRPS symptoms. I don't get the other Raynauds symptoms as far as I know!

But thanks for asking the question :) It's always good to explore a different idea with this. You never know when something just might make a difference...

Bram.

Bram, just wanted to let you know that I have been thinking about you and hope you are on your way out of this flare. My post has to be short, not having a great day myself and we are gonna attempt going out today. Visit in-laws and go the the store :eek:

Take care,
Nanc
:hug:

Thanks Nanc :)

I'm sorry you're having a rough time of it too, it's horrible when you've got to get ready and go out...when all you really want to do is crawl into bed and sleep (if at all possible)... Hope everything goes well and you feel ok with it all.

Just got back from the last outing today. I'm shattered now! My feet are burning like crazy, my back is making me walk like a bow-legged old sailor :eek: and my knees are fat balloons. Glad to be back on my sofa! Had a weird thing just now - my finger on my right hand went all hot and fat, and I washed my hands after going in the bathroom. I happened to look at my hand while washing, and my whole hand was wet, finger pads and all - except the one that was hot. The pad area to the second knuckle halfway down was completely dry. It looked so odd, the water just wouldn't stick!

Take care everyone and I hope you all sleep well tonight. I'm feeling a little more myself today, despite the obvious stuff, so I'm hoping the worst is over. Thank you all over again lol :hug:

Bram.

Thanks Bram. We went to my in-laws and then to BJ's (a wholesale club). We needed to go to the grocery store after that, but I couldn't do it. My husband said no way! Said he could see the pain in my face. I completely overdid it. I was taking prednisone for the allergic reactions and now I am having shortness of breath. I cannot tolerate much as far as steriods go, so I thought I would try a low dose of it. I guess it helped the reactions calm down, but these side effects or whatever you want to call them, are not so great.

Glad you made it through you outings, sorry it was so hard on you. Hopefully the worst is over and you can rest up and get over this flare.

That is really odd about your hand. Sorry, I can't remember, do you have CRPS in your hands or arms? I would definitely keep an eye on that hand! So bizzare!

Hope you get some sleep tonight and wake feeling better!
Nanc
:hug:

Bram, great job being there to celebrate with your daughter! I have a 14 y.o. daughter and I work really hard to try and keep her world as normal as can be. Your daughter will have good memories from this birthday! :-)

Ut oh, :( I’m late on this. I am so sorry Bram honey, for being late and for the way you’ve been feeling lately. It is more difficult than anyone who doesn’t have this would ever know to push through a flare up; mentally or physically. How we try to keep living our life to the very best of our abilities in spite of it all. Man oh man have I been in touch with that lately.

I know you wanted to feel better on your daughter’s birthday. This damn disease gets in the way of everything, doesn’t it? All the damn time it seems. Grrr! Regardless, it sounds like she had a great birthday and is none the wiser to how hard it was for her mom try push through the celebration and try to enjoy it with her.

Perhaps there was some time well spent just getting to hang out for a while with your husband. Sounds like he’s trying to help. Of course they are men and not women or mom’s, so they are doing the best they can or know how to I think.

It’s simply and utterly amazing the sheer volume of pain we endure on a daily basis. Especially when it peaks, we want so desperately for the world to understand. How do we explain the unexplainable? The invisible? And yet, we pick ourselves up.. again.. and again…. And carry on. No easy thing, but we do it.

I’m glad it is starting to settle down a bit; crps and the weather. I hope you’re able to get some rest, and some good sleep. Again, I’m sorry that I was late on this. I’ve tried at least three times today to finish this and click reply <sigh>

Thanks Vrae :)

...

I'm sort of a bit better, sort of not...I can't really describe it very well. I feel a bit weird tbh. I have an hour or so where I feel OK-ish and think I'm on my way back, and then I can feel completely wiped out. Earlier on, I felt ok and did some tidying and made a sandwich for lunch, sat down and started eating, suddenly overcome with nausea and tiredness. Not like me at all, and nothing I hadn't eaten before.

I woke this morning with a big fat lump of swelling over my left knee. Normally at night most swelling will dissipate. I've been having some deep throbbing pains in my left leg at times, then the burning more surface ones more often especially when I rest up for a bit.

Hey ho. What weird things this disease does to us... I know you guys get it.

Is there anything I should/shouldn't be doing right now? I spoke to the doc the other morning, he wasn't concerned :rolleyes: so nothing to pursue there. I'm just generally tired at the moment, tired of fighting the pain so much. I want a break...

Don't we all, hey? ;)

Hope you guys are all doing ok. I never forget all you good folk out there having it tough too and still giving your time and support to us on this site.

Bram :hug:

Hey Bram! Sorry you are having these additional issues going on. It is so hard to tell sometimes if it is CRPS or something else. But, with this delightful monster, things that happen are usually related :(

Maybe you need to relax and rest a little more. After all, you are getting over a pretty major flare. Sometimes I think I am feeling ok enough to do a few things and I start doing them and then have to immediately stop and sit. For this, I am suffering terribly today.

I sure hope you will get past this nausea too, such an awful feeling.

Take care,
Nanc
:hug:

Hi Bram!
You deserve a good long rest. Fighting the CRPS flare, taking care of home and family, hosting your daughter's birthday........and, and, and. it all takes a LOT of energy. Your body can only cope with so much at one time. If you had the flu you would take to your bed and recover. This is no different. In fact, its more important. Give yourself the permission to get some solid rest.
~ Lottie:hug:

I like this and couldn't agree more. It (rest/sleep/recovery) is required, imo. That sucks when trying to keep pace with kids still at home, a home to keep up, work/job, etc. For me, balance is becoming impossible. CRPS is winning right now.

Thanks you guys :) I am trying to R&R lol, where I can...:winky:

So many of us are also flaring right now, I do hope this calms down quickly for everyone affected, it's so hard to fight through the days... I could have easily stayed in bed this morning, but I always get up, shower and dress whenever I can, because I don't know how long a flare will last, and I can't leave my youngest to get ready and get off to school alone - she's very capable, bless her, but I want her to have as much of me as possible. I rest when she has gone!

My left shin is burning up right now, and it's only 9am!! Where's my easier morning time lol?! Darn crips :p

Take care Nanc, Vrae and Zook and anyone else having a flare...hope your day is a little better. I blame all this bizarre weather...

Bram :grouphug:

Aw im sorry Bramble :(. I also have major temperature issues. My mom says I have "manopause" LOL. Anyway I also get these things I call them the "bee stings" and my body also has major temp issues. It is 81 degrees outside and I am freezing, then I could walk into my house and be too warm, etc. Like when I'm driving (about to get my license), my mom always has to change the air conditioning at least every 5 minutes from cold to hot!:eek::D I hope you enjoy my response as I did writing it hehe.
:hug:

I thought of you last night crpsage16 :rolleyes: I had a long batch of those bee stings (great description!) while lying in bed wishing I could get to sleep.... I hate those things. Hadn't had them for a while.

We have a another big low pressure storm system coming in here, and I can feel things worsening again with the pressure dropping. I was starting to feel perhaps the worst was over, and now I feel I'm being pulled backwards again. What a weird, distressing, cruel and exhausting disease this is. Sigh.

I hope all of you are doing ok today and that everyone's recent flares are maybe starting to settle. If not, then stay warm and have that mug of hot chocolate :winky:

Bram.

HEY CRPSAGE16! Haven't heard from you in awhile! How are you doing? Are you able to see your friends and get some schoolwork done? Wishing you wellness!:cool:

HI everyone! So sorry so many of us are flaring. I guess it's the time of year? Here on the east coast of USA it has been one of the coldest darn winters in decades. And, it hasn't even been that much snow, just FREEZING! Bram - I have been trying to watch the barometer for a connection with my pain intensity, but I haven't put one together yet. Seems to be random, or at least I haven't been able to figure it out.

OK, so you asked for a chuckle to lighten your day......this one is going to be really silly......like 7 year old silly. Ready?

If the South Pole is in Antartica, where is the North Pole?



Uncle-artica!!!

HA! You can't say I didn't warn you! :-)

Lottie, you marvellously nutty muppet :winky::D

Bram.

Awful day, after a bad night. Lots of pain, pretty much everywhere, feeling very blue and fed up with it all. No one seems to care how I feel, family being careful but no one asking about it, like they just don't want to go there....crumbs I hate it all. Sitting still makes things burn and ache and hurt, but I can't move about for more than a few minutes before my knees and hips just hurt too much.

Why us, hey? Why not the bad people, the cruel people, the greedy people? Ah, the great unanswerable questions :rolleyes:

Take care everyone, hope you're doing better than me today.

Bram.

Oh Bram darling, I/we care… so very much! I do know how you feel though. There was a time when I said to my husband; I know everyone else has just gotten use to my being in pain all the time, but that doesn’t mean that I have. It can seem like they just become oblivious, or apathetic. :rolleyes: I’m so sorry hon.

I too have been in the dumps this week. I believe it is days and degrees of tolerance of all things CRPS. The pain can be so devastating. The why’s of it all can be maddening. Try, try, try to keep your thoughts from there. Ahhhh… oooommmmm… okay never mind. Chocolate, stat! Oh Bram, sure wish I could give you a gentle hug. :hug: Please know that I really do care, and you’re gonna make it through this! Hang on girl!

Thank you so much Vrae :)

I have chocolate and hazlenuts by me right now, absolutely essential today. My husband is here now and out doing things in the garden bless him. I know he just finds it hard to know what to do for the best when things are bad for me, but yes your saying about not being used to being in pain is right on the money... Poor chap just doesn't know what to do. I'd find it tricky myself. He's normally very good, bless.

Sorry you're feeling crappy too, hope things aren't too bad today. IHugs back to you too....they don't hurt lol...

Bram :hug:

What is going on here?? Seems like a lot of us are having an especially difficult time right now. Just when I think it can't get any worse, it does. I know I shouldn't think that because everything can always get worse...but seriously, like this pain is not bad enough?!?

Bram, so sorry you are having yet another rotten day! Vrae is right, we do care! We care a lot...and I wish I could give you a gentle hug too. I know what you mean too, my husband is great but there are so many times that he does not know what to do.

Vrae, sorry that you are having a rough time too! Gentle hugs to you as well :hug:

I hope our days start to improve VERY soon!

Nanc
:hug: