Thanks Nanc you lovely girl. You're all lovely :) so kind and caring and snuggly and warm....aww.

Yes it's weird isn't it? So many of us. I blame this succession of weather systems brewing round the States and then coming over here loaded with Atlantic water. Yikes. The barometer is going up and down like a frickin yo-yo. And the pain ramps up with every change... Wtf?!

My now lovely super supportive and snuggly husband (bless him, he does try hard) has just brought me in a big bag of Cadburys pebbles. Omg it's fatal. I have just had a glass of wine, and am now on a cup of tea and a chocolate overload :D Can you get drunk on chocolate? Maybe I'll find out.

I still feel crappy, but I'm smiling a bit because you care and it means the world. Thank you thank you.

Hope you guys are doing ok this evening too, let's all hang in there together shall we lol?

Bram :grouphug:

Have your lovely husband fire up a toasty fire to warm you!

I have been so bad I have not been on much,,Sorry I sure hope everyone out here gets feeling better soon..I wonder---Has everyone been having the last 3 weeks from you know where???I have and it sounds like others have..I feel so bad for you all.But the one best thing,we are not alone..Love ya all ..we are FAMILY here..and are deeply needed..:grouphug:

My thoughts are with you..You never get used to this pain 24 hours 7 days a week..hang strong..God Bless:hug:

Moosey I'm so sorry you're having a bad time too....so many of us struggling at the moment :confused:

Take care of yourself, and thank you for your kind thoughts. Everyone is so supportive...it's immensely kind and always lofts my spirits a bit :)

Bram :hug:

Saw your post and thought of this and thought of you.
 

Sorry. I'm new on here so apologies if I haven't done this correctly. I read your rant and felt your anguish. Nothing can really be done to change it all but I guess somehow what you are going through will change you. The trick is to believe there is a reason and that the reason has some kind of meaning which will eventually turn to your good. Easy to say I know and hard to hold on to. In the meantime, prayers and thoughts are with you.

Thank you SLH100, I appreciate your kindness a lot - welcome to the forum. Do you have CRPS yourself? If so, I hope you are having a good day today.

I am dealing with my illness just like everyone else here, but I don't seek a reason for it. The kindness of people like yourself who take the trouble to write a line and think of me is enough, and every little bit of understanding on this forum is worth gold :)

Bram.

Wel I've lost it. Hip pain is horrific today every move I make, burning and shooting down my leg and around my crappy knee too. Burst into tears after even playing piano made it worse, no relief in any position. Don't know what to do with myself, poor husband and daughter don't know what to say so say very little...I hate this damn disease, it's so awful on a bad day, you just can't put those feelings and emotions into words.

Hope you guys are doing ok, hope someone out there in the research world is pushing hard to find a way of relieving this pain...

Bram.

I am so sorry to be reading this Bram. Was just thinking about you and was so hoping that things were improving :(. I really wish there was something that would relieve this horrific pain for you...I know you wish this too. Take is easy and hope you get some relief VERY soon!!

I sure hope someone out there is the research world is working on this too. Somethings gotta give!

Gentle hugs,
Nanc
:hug:

Thank you so much Nanc x

Oh, Bram, I'm sorry you keep having such a rotten time. You really are on a roll lately. I hope that you get some relief soon.

I know what you mean about trying to articulate what you are feeling on the worst days. I think that as understanding as our other halves try to be, I can't see how they could really understand. I don't think I could have imagined it before I experienced it. I'm not sure I've really wrapped my head around it yet, myself.

Hang in there and keep fighting the good fight, even when fighting means just continuing to breathe.

:hug:

Thanks Kim, that's so nice of you :) Hope you're doing ok.

Bram.

Oh Bram...I am so sorry you are having such a rough time right now. It really sucks that you just can't seem to catch a break lately. You're in my thoughts and I hope you start to feel better soon.

Thanks catra :) honestly don't know what I'd do without you all some days x

My hip is still awful, still can't get comfortable anywhere. Grr. On a whimsically delightful note, overnight my shoulder joint has started hurting in a very similar way - it doesn't feel like a draught/muscular thing, but the joint itself aching. And it's not even on my left side where my CRPS is - its on the right!!!!!!! OMG will this ever end?

The weather here is ridiculous. There is water everywhere. Ive had to cancel my work the last two days as pupils just can't get in easily. It's cold and wet, and it's only getting worse out there.

If I had any cash laid by, I'd be on a plane to somewhere warm in a flash. I hate this. I'm trying to get my positive mood back, but it's tricky right now! :rolleyes:

Thank you everyone who has spared a moment to pop in here and boost me up, it's such a help, as I know you know ;)

Bram :hug:

In December my boyfriend's nephew accidentally kicked my left (RSD) ankle while rough housing with my boyfriend. After that...the RSD pain spread up to my left hip (highest it went before on that leg was my knee)...and it's been bothering me ever since. I am a total "jeans and t-shirt" type of girl and I haven't been able to wear jeans (or any normal pants) in months because of it (except for my oversized flannel lined jeans that are literally 2 sizes too big that I wear for fishing). Everyone at work keeps commenting on how cute I look these past few months with my leggings and long tops (very trendy). I sort of want to scream in those moments because there is no way they can understand that the reason I am wearing leggings is because the pain is too bad to wear anything else. Even with the leggings...that pain in the hip area is barely tolerable.

I am hoping that when the weather gets better that I will see some improvement with the pain. This has been a ROUGH winter. We've gotten over 5 feet of snow, had multiple days with wind chills at -30F to -50F. Just such a crummy winter that feels like it will never end. But spring will be here before we know it, right?

I keep telling myself that catra!!

Wow, the reasons some folk like yourself have either had spread or started CRPS in the first place are just so mad. Cruel, almost ridiculous that you can end up with such a nightmare situation as a result of something normally minor. It's why I'm so nervous of hurting myself now...yikes. Hope you're doing ok today though.

Bram.

These post just brake my heart reading about all the pain everyone is in..And the bad thing is how and when will it stop..So sorry you guys are bad off too..it is so strange how something so small could end up this this..God bless you all.Please get feeling better soon..Keep warm and toasty it might help..:hug:

Can hardly move today, hips and back awful, really down and fed up, can't get comfy, don't know what to do, floods everywhere here, can't get to docs easily. Gonna take some major pain meds in a mo but they don't usually work so have fingers crossed. Had bad arrhythmia all evening yesterday, weird and unsettling. Crumbs guys, life has shrunk!

You all ok? Take care out there xx

Bram.

Take care and take it easy today Bram. I will be sending good thoughts your way and hope you feel better soon.

Saw docs, had ECG, heart is ok, thinks the arrhythmia is caused by all the pain...:rolleyes: I'd laugh if it weren't so unfunny!

Have inflammation and 'problems' with my sacro-iliac joint. Asked him if it could be anything to do with the CRPS, and he went...."C, R,..?" I said the full name and he said 'oh right' in a careless way. Examined my hip movement, always fun anyway :rolleyes:, but he was really hands on, quite rough, and didn't ask or warn me when he grabbed my CRPS knee and thigh with his cold hands. Asking me if it hurt when he was yanking my leg around. Why yes it did hurt. When he pressed bits of my SIJ it was horrendous pain and hot burn, so he was pretty content with the dx.

I asked if the CRPS had any link and he was very dismissive of the idea. Hmm. Hard to take that seriously when he wasn't sure what it was... I have some voltarol gel stuff for it, and regular paracetamol (I laughed hollowly). Must avoid bending and twisting. Lol. Tell my kids and pets that. He thinks it will subside in a few weeks time.

Oh it hurts such a lot. No position is comfortable. Sitting on the sofa is very bad, but that's best for when I rest my feet and legs. Ho hum. Going to have to lie down :( upstairs....on my own. Boo.

Hope you guys are doing ok x

Bram :grouphug:

not sounding too well wish you the best..thinking of you and praying..

Hey Bram, glad you were able to make it to the doctor...sorry he was so ignorant and dismissive. Maybe when you get past this rough time, you should considering finding a new one. I know that is easier said than done. I am in the process of trying to find a new PM doctor.

Glad your heart is ok. I imagine all that pain you are in would cause some issues with it. The "fun" of CRPS never seems to end does it?

Hopefully lying down will help alleviate some of that SIJ pain. I have been spending a couple of days a week lying in bed. I get up in the morning, shower, dress, eat, etc. Then sitting up in the recliner hurts too much, so back to bed I go! Luckily we are in a one-level house, so I do not have to worry about going upstairs and being alone. This is where I am right now and husband is out shoveling snow from round one. Round two should be coming through in the next hour or so...2-4 more inches of snow to come. We had snow, then sleet and freezing rain, now more snow. Love looking at the snow, but this weather is hell on me.

Anyway, take it easy, get some rest and feel better. I will continue to have you in my thoughts.
Nanc
:hug:

My heart rate is almost always high now. When things got worse and started to spread...every time they measured my heart rate it was between 140-160 at rest. Really freaked out the ER docs when I went in once. Everything checked out okay and the consensus in the end what that is was high due to the pain. Which means I pretty much always have a HR over 100 and it's usually over 150 when I have a flare up.

I'm sorry you're not doing well. It's so frustrating to take the effort to go to the doctor or ER or whatever and you end up leaving no better off than if you had just stayed home...sometimes worse. Take care...and I hope you feel better soon.

Hi Bram ! So sorry you are suffering so badly. I have had problems with my Sacro-Iliac Joint too. I had a pain management doctor inject it with lidocaine and a steroid concoction. Helped a lot. Also, physical therapy helped with alignment. It sounds like you have quite a bit of inflammation in and around the joint and maybe an injection would cool it off.

On another note - you have mentioned in your posts that you have pupils - what do you teach?

Bram, Im sorry the doc was so insensitive. Even if he wasn't familiar with CRPS, he should warn patients before grabbing them.

I hope you are feeling at least a bit better today. I would say when it rains it pours bit rain is a sensitive subject at the moment. If only the weather would settle down. Surely it will soon and you can get back to your normal cripsy fun without all the extras you've been having.

Take care and don't ask too much of yourself.

Kim

Catra, moosey, Nanc, Lottie and Kim

:grouphug:

Now you see things might hurt a lot, but I'm smiling. So thank you for caring, it means such a lot.

Kim - It never rains but it pours :D Lol at you. Cheeky but oh so true isn't it? As I lie here, the rain forecast for today - the month's worth in one day - has just started. We'll have to wait and see how bad it is...yikes.

Lottie - you have the SI joint thing too, ouch. I'm so glad the injection helped you. I'm wary of it because I had a joint injection into my knee before the surgery and it didn't do a darned thing, made it worse if anything. I don't think I could risk it. My body doesn't seem to react well to a lot of things :rolleyes: Do you have any advice re the best positions for calming things down there - sitting, lying positions etc, is standing good or bad?! The doc just said no twisting or bending movements. Are there any movements/exercises I can do to help it along? He mentioned core strength and I know it's something I need to work on, but he said not until it's a bit easier...thanks for any advice you have in advance!

Catra - crumbs that really is high. Maybe hearts react in different ways to the stress of it? My HR is normally pretty low at around 60bpm, but it's the arrhythmia that mine seems to chuck in with the bad pain flares. Cracks me up on these HR checker phone apps (my husband has one lol) - I did mine and it said my HR was excellent if I was in good physical fitness...:eek: hmm. I hope yours is doing ok at the moment, anything to do with cardiac stuff is always worrying...

Nanc - I'm planning on spending today mostly in bed, although obviously I'm already fed up with it :rolleyes: I've always been very strict about getting up and dressed every day in a kind of defiant gesture...as you say, I'll get up and shower and dress, and then get back in! It's Valentines Day as well...and although we weren't planning anything particular (VDay is for the young-uns lol) it's a bit much to have to spend it lying down. Especially when that's not in a good way! Grr. Poor chap. I haven't even been able to get out to get him a card. First time ever. Going to make him one before he gets back from work :winky: I long for a bungalow now, irony hey? I've been watching all the snow hitting the states and it looks so grim, we are all getting it in the neck one way or another :rolleyes: Stay war and take care x

Moosey - thank you for thinking of me, it's always comforting to not feel alone with this kind of thing, and it means a lot when you know those folk have the same problems themselves and actually understand it... Hope your day is a good one.

Not sure this lying down lark will be tolerable for long....do I have to lie literally flat on my back??? :eek: Take care of yourselves you fab folk, and thank you thank you again.

Bram :hug:

Let down again by the doctors
 

Bram, so sorry you had to be confronted by such an ignorant and uncaring individual who is supposed to be there to provide us with general care. I truly feel that so many practitioners out there believe we are putting it all on so as to access drugs. I for one am over it and wrote a letter if complaint to the last practitioner who was dismissive of me and my pain levels. I since got an authority from my PM who in conjunction with my GP can now issue me the strong medication as and when required and no one, no one, can accuse me of being a drug seeker.
As for his manhandling of your poor limb, this is disgusting, I'm speechless he could demonstrate such a lack of compassion and show his complete and utter ignorance of CRPS.
How is the arythmia today, do they know what it causing it? Do you need further tests.
Thinking if you and wishing the strongest positive thoughts and hoping you can fund the time to be kind and gentle to yourself and slow down. :hug:

Thanks Pamela, yes he was a complete ****, but he's not my regular doc. I only saw him because he was the only one with a free appt when nurse thought I should see someone...just my luck lol. That's a good idea to get a letter from the pain doc, mine is quite good, maybe she would do something similar for me. I don't use much by way of pain meds these days (wish I could some days :rolleyes:) but it would be nice not to get that disbelieving god-you-make-a-fuss kind of attitude...

The arrhythmia is still there sometimes, I'm trying to ignore it. They didn't see the need for further tests or anything, just putting it down to the pain. If it continues I'll demand to see a cardio to get everything checked properly. The ECG was fine, so I'm hoping it'll settle down.

Thanks for your kindness, everyone is so nice :)

Bram. In bed. Ouching. Wish I could move without the need to make a noise!!