Puzzled...
 

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 really hate to say this, but your experience is all too common; from docs missing the problem and hoping that it will just go away to spouses (husbands usually) who want to pretend this nightmare is just attention seeking.

I'm sorry this disease struck you, but the one tiny sliver of silver in this otherwise very black cloud is that you found us...you now have a new bunch of friends that you will probably come to think of as family; people who understand what you're going through and somehow manage to comfort and support one another despite (or maybe because of) our own pain.

I hope your husband is just having problems coping with the fact that the woman he loves is suffering and he can't understand why or how to help. If he's a good man, you can probably select a few posts from here, save them in a single folder, and let him read the when he's ready.

If he's a jerk, he'll eventually bail out (us guys are good at that), and though you may feel otherwise at the time, that will be the best thing he could do for you. You don't need the extra aggrevation on top of this.

The bad news is that the effects of the block will fade. You will soon learn that symptoms do spread to other parts of the body. Hopefully, you will read one of my posts on symptom migration and begin taking grape seed extract (GSE) to at least delay this happening.

Hang in there, my new friend. The road is hard and bumpy, but you will meet people here who are living proof that you can survive RSD, and find enough joy and humor in life to keep going...Vic

<sigh>
 

as i sit in my room, i hear my husband outside playing bags with the neighbor. laughing. having fun... i could just vomit.

i'm sitting here in my bedroom crying because i am scared of the unknown and scared of what i am learning. i am in pain and i am so weary of it all. i thought it quite odd that the pain dr. immediately prescribed all these meds - hydrocodone, gabapentin, amitriptyline and methadone. then i read what RSD really does to your body. and i read that i'm not crazy or imagining things.

of course, nobody i know has ever heard of RSD and just shrugs it off with a simple, "oh, i'm sorry..."

Do you recall the name or the kind of block/shot that the dr did?

You might mention sweetly to hubby that you are researching for knowledge and for emotional support for a unusual condition.
Getting thoughts, reassurance and help from other people that do have this same condition.
Then again you might need to have him go to the dr with you so he can hear first hand that it is a real thing.

I"ll agree with others that have said this is pretty much the "norm" with blocks - My hubby is on a oral pill that he takes in between blocks that is supposed to "extend" the effects and "carry him through" until the next block. I forget the name but will get it for you. It is NOT a miracle med but it helps with some relief. Maybe this is something you can talk with your doc about?

Also - His pain mgmt doc is getting him off the lyrica, hydrocodone, muscle relaxant he anything else he was on - with the conflicting side effects - he was having horrible mood swings, sleeping all the time or not at all, double the cramping, spasms, etc....it was a night mare - the slew of things that were going on with him. Also he said that when one takes all those meds all together they can compound or double the effects of each other - The pm doc said we were all lucky he didnt wind up dead from an overdose with everything he was on....

So they are taking him down (weaning hm off) to just the blocks, this pill, and ibupro.

HWRSD

i'm not exactly sure what the shot contained... i asked the nurse when she called to confirm the time for the second shot and she said it was a steroid. are there different kinds? i don't want to sound dumb, but i didn't know what to ask.

since going to the pain dr., i have just done what he told me to do. i have taken the meds as prescribed - methadone 5mg 3x daily, gabapentin 2x daily and then the amitriptyline at bedtime. i have not taken any norco. i have been reading a lot on drug dependency and the dangers of it all, but this combination i am taking is working for me. i haven't really had a lengthy talk with the dr. about the illness so i am just a puppet on strings right now. my education is coming from you guys.

can someone tell me what i should ask the next time i go in for a shot? i go tomorrow at 10:30 and i want to be prepared.

thanks again for all of the positive feedback and "nurturing.":winky:
ang

here's a list of threads on blocks if you haven't seen them yet-
Key Word(s): block ; Forum: Reflex Sympathetic Dystrophy

http://neurotalk.psychcentral.com/se...searchid=66082

hello there
 

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

An I do know that wanna dance feeling, that wow din't know just how much pain you are realy in till it's alla sudden gone feeling... woo-hoo!! *sigh* I miss it.. To me it was kinda like dead silence after a tornado (as I'd imagined it). I see pain as noise alot. sounds odd but I am lol

I agree that getting your hubby to go see your doc with ya would be of benifit as ta waking him up to your reality, I would discuss this with your doc first so he is aware of the situation.. doc sounds on board for you thats a big chunk of your battles.. I had a doc whose attitude was similar to your mans, it's a learning experience for them but the information is out there, you just need to open their eyes eh.

It is also a normal progression with RSD that the limbic system is involved and depression usualy is a big part of it, we all here know this and it can help so much just to talk to someone who understands, but it can also help you if you understand this is whats happening to you, might help take the edge off some.

Any time you wanna tell us whats happening how yr feeling is good for everyone.. :grouphug:

Big soft hugs
Sandra
:hug:

HI,
I am so sorry for your diagnosis. one thing people will say here, that will help the most, is that we know and we understand ... and that will be the best you can get some days.
i have learned over the years that most family and friends will never understand what this is like because it is so impossible to describe and it does not 'look' bad in many cases. some will be helpful and some will move away because they cannot 'get it'. i have stayed married and we have denied together, cried together, been angry together, and we have had times when he is so frustrated with this monster and what it has done to our life that we have each ended up in counseling separately. you do what you have to do to get through each day. it is ne day at a time.
you entire life does change and i hope you can change along with it and learn to adjust. you will have the good days and the bad and it is so important to fill the good ones with what means the most to you. it is also imoportant to let go of the things that hurt and are too much for you, and not care what people think as you do that. RSD is all about taking care of yourself. there is no cure, and there are no answers as far as treatments or medications that work for everyone. if and when it spreads is also a mystery.
i wish you the best and hope you find what works for you. joan

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
 

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
 

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