[unrouley1]

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 . 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?

ang

[Vicc]

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

[unrouley1]

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..."

!!!!!!!!!!!!!

it feels good to be validated with all of this information. it really does. but it doesn't make my arm stop hurting. and it doesn't stop people from being insensitive. i'm just thankful that i'm not imagining an illness.

[coachV]

unrouley,

i'm glad to meet u, but so sorry that it's this way....bacause u have rsd.

it sounds as if u have a well-informed doc who believes what u say....many of here went to far too many docs before we found one who would listen and accept what we said......i read several years ago that the average rsd patient saw 13 or 14 doctors before finding one who would help, and the stories i've heard here make me think it's true.

u may have similar results with your next block.....or, unfortunately, results that r nowhere near as good......there r people here who get wonderful relief from blocks, some who find them useless, and some - like me - who have mixed results....sometimes excellent, sometimes poor.....i hope u fall into the 'excellent' category.

the only suggestion i have regarding the situation with your hubby is to teach him about rsd......i had to print things out and stand over my hub till he read them....left on his own, he would put the stuff aside saying "i'll read it later', so i'd say "oh no, please...this is really good and i want u to see it right away so we can talk about it"......didn't always work, but it did help....he's still not very supportive, but he's better than he was.....your hub's comment about "researching too much" sounds a bit like my guy, and he needs to know what the 2 of u r facing.....he also needs to understand that this isn't imaginary or exaggerated.

many of us have had to deal with insensitive comments from folks who have NO idea what they're talking about.....my sis-in-law, to this day insists i have artritis and that i'm making a big deal out of nothing, so i've stopped spending time around her.....i've learned to stay away form those who minimize my problems.

PLEASE feel free to come here and vent.....none of us can stop your pain, tho we all wish we could help each other that way, but we can offer empathy, information and understanding.

i hope all goes well with your block on manday....let us know, okay?

liz

[Jomar]

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.

[HWRSD]

Originally Posted by unrouley1

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 . 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?

ang

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

[unrouley1]

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."
ang

[Jomar]

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

[Sandel]

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..

Big soft hugs
Sandra

[JOAN_M]

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