[olecyn]

Yesterday AM I felt so much better after Dr. J started me me on Utram ER and I increased my Lexapro on my own.
He feels that surgery may cause more reprocustions of CRPS, RSD & FM.
So its another catch 22.
My issue is getting down the swelling from the subclavian artery and veins and calming down the throbbing ulnar nerve in my extremities.

Well, I took a couple of hours to clean (me clean? my housekeeper moved to Oregon) the sunroom from ALL the dirt, soot and crap from the fires. A new housekeeper starts next week.

Started feeling achy and lethargic around 1pm, layed down slept for 3 hours.
My girfirend came over to be my hands to put up holiday
Well, within 20 minutes my whole body shut down like it did last April when I called 911.
The aches, pains, inability to move my extremities and temp spike.
She imediately drove me home and I dropped a handful of my narcotic pharmacy.
I refused to go sit in the ER for 6 hrs.
She sat with me till my body calmed down.

I cried knowing I couldnt go see my grandkids today and go to a home tour which I won a free ticket.
This is crap
At least with chemo you counted the days when it was over.
And knew you could DO IT
With TOS its a walking alien never knowing when its going to turn on you at the worst moment in time.

As I re visit the RSD, CRPS and FM sites, it is so understandable.
But seems to be increasing.
Why??

Called this afternoon to leave a message for Doc J what had happened and they connected me immediately with his partner, Dr Shimizo.
I just wanted to let him know what happened and if there was something else I should have done.
He was so kind and agreed that I did the right thing with the drug combinations.
I am so lucky and grateful to have a caring group to actually get on the phone with me.

Some said this on the board
My pain and flares DO NOT abide by dr's 9-5, M-F schedule
We need to know what to do, what pain we are treating and with what drugs, exercise or movement.

So thats my story
Back to bed and more muscle relaxing crazy drugs.

[johannakat]

Sorry Cyn

I wish for better days ahead.

[dabbo]

cyn- sorry you're in such hell-pain. I hope that it subsisdes.... Its nice of the doc to call back and check...

[dawn3063]

Hi Cyndy,
I am so sorry to hear that you had such a bad day. I can totally relate with you today. My day started out pretty good, I had a great chat with my Mom and with a wonderful fellow TOS'er on the phone this am and then I decided to get cleaned up and do a few chores and BAM I stared to get so achy and sore and then came the nasty headache.. So I had to open the pharmacy again and take the break thru pain meds, migraine meds and back to bed...
My headache is better but still lingering my right arm is beyond sore and heavy and I still feel hung over from all the meds... I can only hope I will get some sleep tonight and tomorrow will be better...
I do hope your doing better too... Dr J sounds like he is taking great care of you and it makes sense about the surgery.. My second surgery created RSD and only made my TOS worse, Much worse...
Gentle Hugs
Dawn

[tshadow]

I'm coming out of two weeks of hell. Pure moaning, squeezing, tears eaking out, crying out "why God, why God", type of pain, that leaves ER guys with making really comforting statements like, "never seen this before."

Cyndy, Cyndy, Cyndy, I wish I could fly in and touch you with a magic rose stem and make it go away "poof" and also leave us with a killer pair of shoes.

From reading your post, I wonder if the cleaning of soot, initially caused the inflammatory cycle, while you slept it grew, and then, while working with your friend (pointing where you want something, thinking, and not lying still) pushed you into a top-notch flare.

Who knows...

I am still befuddled by these flares.

One day swimming seems to ease a flare...other days, paddle boarding seems to start one up.

Evil flare be gone by Nov. 3, please and leave us all alone.

[olecyn]

Catch 22, Dawn, HUH?
I want the right arm and hand swelling throbbing and pain to be gone
But if this CRPS as Doc J calls it all increases I'm trading one for the other

Originally Posted by dawn3063

Hi Cyndy,
I am so sorry to hear that you had such a bad day. I can totally relate with you today. My day started out pretty good, I had a great chat with my Mom and with a wonderful fellow TOS'er on the phone this am and then I decided to get cleaned up and do a few chores and BAM I stared to get so achy and sore and then came the nasty headache.. So I had to open the pharmacy again and take the break thru pain meds, migraine meds and back to bed...
My headache is better but still lingering my right arm is beyond sore and heavy and I still feel hung over from all the meds... I can only hope I will get some sleep tonight and tomorrow will be better...
I do hope your doing better too... Dr J sounds like he is taking great care of you and it makes sense about the surgery.. My second surgery created RSD and only made my TOS worse, Much worse...
Gentle Hugs
Dawn

[olecyn]

POOF!
Is the correct adjective
Be gone, be gone

Originally Posted by tshadow

I'm coming out of two weeks of hell. Pure moaning, squeezing, tears eaking out, crying out "why God, why God", type of pain, that leaves ER guys with making really comforting statements like, "never seen this before."

Cyndy, Cyndy, Cyndy, I wish I could fly in and touch you with a magic rose stem and make it go away "poof" and also leave us with a killer pair of shoes.

From reading your post, I wonder if the cleaning of soot, initially caused the inflammatory cycle, while you slept it grew, and then, while working with your friend (pointing where you want something, thinking, and not lying still) pushed you into a top-notch flare.

Who knows...

I am still befuddled by these flares.

One day swimming seems to ease a flare...other days, paddle boarding seems to start one up.

Evil flare be gone by Nov. 3, please and leave us all alone.

[olecyn]

I missed my grandkids yesterday
I missed a home tour
I will probably miss seeing my 2 year old precious one today and see their new beautiful home.
Just cannot get in the car and ride for all those hours
I feel like a junkie
Hung over with cotton mouth

Sleep, sleep , sleep
Yawn...
back to bed

[Jomar]

Everything I think of saying sounds so feeble

peace and soft hugs, hang in there

[Dolfinz]

Sorry your having such a bad flare.. I to have been in Hell week also !! My right shoulder and my right hand have been swelling and throbbing too.. This week is obiously a bad week for all us TOSer's ! I know mine is weather related also.

Hope everyone has a better week !!