NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Puzzled... (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/19004-puzzled.html)

Quote:

Originally Posted by Sandel (Post 95788)

I would write down everything that is happening to you now Ang.. as the symptoms come back and show it to the doc that is doin the shots, expecialy any extra symptoms you get like your leg joinin the pain party.. thats just nasty hon.. Show him or tell him everything you feel between.

I haven't had cortisone or streroid shots myself but I have had some odd and mostly temporary effects from the lumbar sympathetic blocks I had a year ago

Big soft hugs
Sandra
:hug:

I totally agree with Sandra - Write down EVERYTHING - Even things you think as only minor - AND - Get your husband involved with your treatment and care as much as you can - knowledge is power and also strength.

Question for you Sandra - You've mentioned odd effects - What did you experience? Since hubby started blocks he has this brown spot on the center top of his hand - It comes and goes - but goes mostly with heat OR with another block - It's pretty wierd but a lot of the things he's experienced since this round of RSD are wierd - Really different from the first round BUT again, he's on way different meds too and it's in his arm this time....

Anyone else experience these "spots"? Are they from the meds or from the RSD? Any thoughts??

HWRSD

ang,

I'm Sorry that you also have to battle the RSD monster, but be assured that this is a very informed and helpful place to come for support and information.

When someone is stricken with RSD it is hard for their loved ones to understand, but arm yourself with information to share with your husband. If he doesn't want to read it, take him along on your next doctor visit and ask the doctor to talk to him about the seriousness of what you are experiencing.

Please do consider all of the advice offered to you here, and carefully document things so that you can provide good feedback to your doctor as treatment moves forward.

Be encouraged,

EJ

shoulder surgery

Quote:

Originally Posted by unrouley1 (Post 95442)

i was recently diagnosed with RSD. i had shoulder surgery and i guess the RSD came as result of it. the pain was so bad and nobody believed me when i said that i felt like someone was burning a hole thru my arm... well, nobody until i saw a dr. who knew what he was up against.

i had a shot in my neck on friday and felt instantly fabulous! the pain was gone and i was jumping around like a freak in the office :winky: . i had been so miserable that i couldn't believe the immediate results.

it has been a day and a half since the shot - ok. i was wrong. i got the shot on thursday. this memory thing is ridiculous. so it's been 2 and a half days since the shot and it is losing its effect. not only is it burning in my arm, it feels like i have a hole burning thru my upper thigh. what is THAT all about?

i am on a slew of medication - hydrocodone, gabapentin, amitriptyline for sleep and methadone. the combo has been somewhat effective, but i'm getting scared that the awful pain is going to come back and stay. i get another shot on monday, but the nurse forewarned me that it would probably have a lesser effect.

long story short, i'm just frightened most of all. my husband doesn't want to hear me complain. he actually said that he thought i was excited to have this because i was researching it too much in his opinion. he makes me feel crazy.

can somebody please say something positive?:confused:

ang

hi ang, i'm new here and i was just reading one of your old posts where you were talking about getting rsd after shoulder surgery. I was wondering what kind of surgery it was? I had a rotator cuff repair and then i had a second surgery to remove scar tissue that had built up. I guess I'm just looking for someone else who's gone through the same thing. hope you are having a decent day, oh and by the way i laughed out loud when i read about your near miss with the tens unit. sounds like something i would do! hope to hear from you. jennifer

hey jennifer - it was rotator cuff surgery. the tear wasn't a complete one, so there was no repair on the muscle, but i had bone spurs shaved off and acromioplasty. i've had 3 knee surgeries and this was by far the worst joint surgery EVER.

welcome to the boards. looks like we are in the same area...

:hug:
ang

Family support makes a difference: a citation for hubby!

Hi there - the RSDA has a very good packet of information for family and friends of people with RSD. I highly recommend it.
Also - there is some research you could cite for him that shows that family support actually reduces the level of pain you feel! :winky: (and the opposite is true, too - lack of support makes your pain and depression worse, but you are already feeling the effects of that ...)

Pain, negative mood, and perceived support in chronic pain patients: A daily diary study of people with reflex sympathetic dystrophy syndrome. Journal of Consulting and Clinical Psychology 67:5, 776-785 (1999) "Perceived support had both main and buffering (interaction) effects on negative mood and a main effect on pain."

:hug:

shoulder surgery

Quote:

Originally Posted by unrouley1 (Post 105051)

hey ang,

i pm'd you (i think) it was my first time so i hope i did it right. if you get it will you pm me back? i too had a bone spur and a tendon debrided and i think i also had acromioplasty(can't remember now it's been three years) how long after your surgery were you diagnosed? did you have trouble with frozen shoulder? i am about an hour north of you. i should have told you where i lived when i pm'd you but forgot, i am having a lot of trouble with memory and organizing my thoughts!:( also have insomnia which doesn't help. took lunesta last night for the first time and it definitely DID NOT work. so i guess i wasted $120.00:( i hate it when i can't sleep cuz i sit there and worry and smoke lots of cigs(i know how bad that is) i also end up taking more pain pills cuz i'm awake longer. it's a no win situation. xanax definitely works but my dr. doesn't want to give it to me. i'm so sick of stupid drs. sorry, don't know how i got going on this rant:D anyway, hope to hear from you soon. sounds like we have lots in common! jen