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

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



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 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 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... 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 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 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 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??? Take care of yourselves you fab folk, and thank you thank you again.

Bram

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.

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 ) 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!!