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 .

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

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

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!

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.

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...

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

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

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