hey rosie - the 'fitting' you described - this happens to my friend with RSD a lot, I didn't know other people with RSD had this too. i guess it's a stage IV thing (if people used "stages" for RSD anymore).
She's just started having her hands twist and turn to rock. It's absolutely inCREDIBLE how strong her hands are, because I do try to prevent them from twisting by fitting my hands underneath hers. Oy vey! I quickly decided to substitute a tennis ball for my hand because the crunching sounds of my hand bones gave me the shivvers <yet another feeble yolk>
All those scarves sound v. fetching and creative. You haven't marred the look with grey duct tape, have you? I don't know what they call this tape in England.
I am glad that you did not die from the pain. I hope you will have the alarming clavicle lump inspected for possible breakage. Don't want infection.
Are you bring any of your mates home with you on holiday? I don't imagine your sister is quite as helpful with scarves, indian food, etc.
Big transatlantic hug <non-painful type>
xoxoxo

Heavens! This is just awful; I'm so sorry things are escalating like this, you can have all my spoons too (if only...). You need some of those adjustable suitcase belts, perhaps. Frogga, what is this? Is it the RSD or (sorry, can't remember the name) the loose joint condition?

I'm surprised at the alcohol helping - just because when I indulge, I get very severe leg/foot cramps the day after, tapering off over a few days, unfailingly. Major bore! The true meaning of cramping one's lifestyle.

I am wondering about this high epidural procedure; obviously you couldn't have had it this time, because of the exam. But in future, if you have nothing pressing, an early treatment might bypass some of the inexorable stages you go through. No? Am I talking through my hat? Probably.

I really hope your journey goes/has gone well, you're due for *a break*, as in "gimme a.."
xxxxx all the best

wow! Frogga! and here I am whining about my pain!! girl, Please do get you clavic checked out for possiable breakage. my goodness, you do not want infection, Frogga! I felt really bad after reading all this, what?? 6 hrs. of muscle spasams?? Please, get in and checked ASAP Frogga. love ya! Desi

Oh Frogga,
I feel soooooooooo much for you. I can't imagine what your spasms are like but I do know what it is like to try for any relief you can find. It sounds like you have amazingly strong muscles that have a mind of their own. They sound like they're defiant & do what they want & not what you tell them - such as to lift your arm. I know how weird RSD makes our bodies. Hope & pray that someone, somewhere can find something to help.
Linmarie

Hey,

Thanks so much for the loan of spoons!! They got me through the journey home! (something I really didn't think was going to happen), however I am now paying the price of using every spare piece of cutlery I stole off everyone!

I think that the clavicle is just cross - mum poked it abit and decided that the bone was still there so I'd be fine, (see, this is what happens if you live with ex orthopeadic and now military nurses!) and that this is just from the spasms. I still have to have my many coloured pashminas (ditched the sling - too ugly) and now have my right arm rigged up in one which is then tied around my waist as tight as possible to keep my shoudler as still as possible short term). Some of my hand is more unlocked but it is still very very tight and sore and a lovely grey colour. The paralysis is still there and it's scaring me alot...

It's good to be back, but so hard at the same time. I didn't realise how much I rely on friends or carers until I am at home and don't have a carer around or my friends just to break the constant monotony of pain. I just want to try and distract myself but it's impossible when mums at work and I'm stuck at home in bed, (some of my care arrangements fell through and mates are all at work because I thought I'd sorted the carers for this week).

Also, I had to have one of my cats put down today because she developed a thrombosis this morning which paralysed her. I'm going to miss Izz so much - she was a constant that shared my bed at night, that knew when my pain was too bad and would just sit on my head or my pillow or my chest and lick me - all of which the RSD hated, but I knew she was trying to go "look, I understand how much this sucks, just want to say I care" and just having her on the bed removes some of the isolation that the pain gives.

The spasms are still really bad - it doesn't help that as well as the RSD I also have dystonia and HMS/EDS. The dystonia means that all my muscles get really tight and that they develop contracturs and shake and do all sorts of stupid stuff, whilst the HMS/EDS means that my ligaments etc are all too weak and so my joints sublux or dislocate easily - and mix those two together with RSD and you are slightly screwed.

Carose: Thanks for the spoon loan - I will pay you them back when you need them!!

Molly: Thanks babe - we use tennis balls as well, but sometimes the spasms hit so fast there is no time to get anything in my hand and then you have to have someones hand to try and peel back the fingers again (as I'm sure you know!). The bones crunching is the worst bit - especially watching other people's faces as they feel that happening! We did unfortunatly have to use duct tape but the scarves improved the look somehow.. (last time mum "dissapeared" she came home with some awesome pashminas she'd bought in a souk (correct spelling?) in the middle east somewhere and they are gorgeous) - and were sacrificed as slings and look very pretty.

Linmarie and Desi - thanks so much for being there for me and just letting me know that I am not going through this on my own!

Artist - the epidural sounds awesome - I am going to talk to my PM dr (who has "magically" found my notes) about because I really am struggling with the RSD at the moment. It would be great just to give my body a rest from this because I have no idea how much more it can handle from this. I know that sounds over - the - top but the RSD seems to be going on an all systems break down thing at the moment.

Thanks so much people.....

Love ya loads and thanks!

Frogga xxxxxxxxxxxxxxxxxxx

xoxoxoxoxo

frogga,

i haven't been online much recently but i'm catching up now and i'm horrified at all the junk u have had to deal with lately....i hope the doc comes thru for u with something helpful.

i'm so sorry about your cat.....it's true that pets alleviate the isolation....i'm surprised tho, to know that cat licking is useful for ill people....my pooch has me about half convinced that dog spit can cure anything......i hope one of the other cats will help fill the void.

and nice style move with the pashminas!....my cane is very colorful (well, okay, it's downright gaudy) because i say it's bad enough being disabled, but i refuse to be DRAB!

i hope, i hope, i hope that tomorrow is a better day for u.

liz

frogga..with all that you have been dealing with has brought streams of tears down my face. i wish i had some sage advise for you-but- all i can do is send you some very gentle hugs and wish you some peaceful days and nights ahead...moonstar

frogga,
You are one amazing woman. I'm so sorry for what you are going thru. I hope the docs can find something to help you. I wish I had an answer, but I'm at a total loss. I do know that when I get down, and just figure I'll never be able to do anything ever again, I think of you and I just give myself a kick in the pants and get going. I wish I had half of your determination and gumption. Even knowing how much pain you are going thru, you can still make me smile the way you write about it. sending you very very soft hugs.
Mary

Huge, huge hugs, my dear!!

Love ya loads and hoping things are going better today!

,
Nessy