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lumbar sympathetic

Posted by kay on 12/22/02 at 09:35 (103732)

my ortho gave up on me........he said there was nothing more he could do. he is sending me to a pain clinic he says. i cry. i am so defeated and tired of the pain.
i go to the pain doc. she is very nice and was very thorough. she wants to do a lumbar sympathetic block i believe it is called. she said this will tell if i have a slight case of rsd. she thinks i do.
i am scared of having it but i am willing to try anything at this point.
six years ago i had the endoscopic surgery with out any improvement. last june i had the open partial release (1/3) and tarsal tunnel release. now i have burning pain (scar tissue on nerves or rsd?) my foot still hurts and i cannot stand to be on my feet any longer than 5-10 minutes.
i feel like my life is over.
i am taking neurontin for the burning sensations.
kay

Re: lumbar sympathetic

Pam B on 12/22/02 at 12:57 (103754)

Kay, you are not alone.......I too have just began pain management and they have done two blocks and I have had relief.......I have been told I am in stage two of RSD.....I know how defeated you feel, and I can sympathize with it.....I have also been put on neurontin in addition to Vicodin and Lidoderm patches.......it sounds to me like you need to go to your family doc also.....depression and anxiety go hand in hand with these issues.......they have me on Wellbutrin and Xanax for that.......I did not want to face the reality of the disease when they told me I had it.....it took a few days for it to sink in.....they gave me some very good litertaure to read and it was helpful in addition to giving me some really good websites to research........See, my doc told me with the first block that RSD was a working diagoses until they seen if I got relief from the blocks......they scheduled them in a series of three and I have had two and have the third next week......I did get relief which confirmed the RSD diagnoses.......it is good that you are going to the pain docs now because if you do have this, you want early treatment so hopefully it will go into remission or at least provide relief from your pain.......I am so sorry you are hurting so bad and I sure do understand how you feel.....and it is so hard at this time of year to just not do anything......not to mention I know you want your life back.......but know your not alone.......this board is full of people that understand your pain both physically and mentally......as hard as it is, try to remain positive and please let us konw how this all is going.......I will be glad to provide you with my email address if you would like it.......you take care and know your not alone......God Bless and know my prayers are with you......take care and keep in touch.......Pam :)

Re: Life should get better for you!

BrianG on 12/22/02 at 14:53 (103770)

Hi Kay,

Believe it or not, you should should feel a little more hopefull now that you are bieng referred to a pain clinic. If you get lucky, and have a compassionate doctor, your life is going to take a turn for the better. The Neurontin can sometimes help with nerve type pain, but typcically you'll need a different type of pain med for the tendon and inflamaton type pain.

Try to work closely with your doctor, to ensure you are getting meds that will work for you. Communicate with her weekly, if thats what it takes. Normaly you'll be started on a small amount of pain med, and then gradually have your dose increased until you are comfertable. The pain will always be there, but you should be surprised at how your quality of life improves. Don't be surprised if you end up on a coctail of meds, to treat the pain, depression, inflamation, etc. Remember to take your meds at the prescribed times. It's much easier to keep you pain under control with a daily dosage, than to back off when your feeling better, and then have to try to catch up and put the fire out, once you've had a relapse! Not all pain docs are created equall. If you feel that yours is not listening to you, and only wants to go by the book, it's time to look for someone else with more compassion. I pray you find a doc who will try his best to help you. You have the right not to suffer!!!!!!

Good luck
BrianG

Re: lumbar sympathetic

Sharon W on 12/22/02 at 19:17 (103789)

Kay,

You had your TTS surgery just a few weeks before I did; I remember seeing your posts. It's good to hear from you again, but I'm very sorry about all the pain you are in.

Brian is right-- a good pain clinic can help you to get back to a life that is manageable. Reducing the pain should definitely be top priority right now. Just be sure to tell them exactly how bad it really is -- some people seem to get kind of shy when it comes to talking about pain, and then they may not get the treatment they need.

My thoughts are with you.

Sharon

Re: lumbar sympathetic

kay on 12/22/02 at 20:39 (103796)

pam when you had your first block did you know if you had relief right away? or did you have to go home and walk around to figure it out. i am kind of confused as how they will tell if its rsd.

kay

Re: Life should get better for you!

kay on 12/22/02 at 20:44 (103798)

thanks to all who answers my questions, i am on welbutrin for depression i got started on that last summer. but now it seems like i'm never ever going to get better so i am feeling as if the welbutrin isn't working any more. maybe i need a dosage increase i don't know. or maybe nothing will help me now.....as things get worse when i thought i'd be better and back to work by now. i know now i'll never get back to work. i was kind of arguing with my doc about that ......because he said i can't go back, that i should find a sit down job.........i'm not trained for anything but stand up factory work. i've done it for 15 years.
kat

Re: lumbar sympathetic

kay on 12/22/02 at 20:46 (103801)

yeah sharon i remember seeing your post too. i've had so many ups and downs with this, mostly down.
how is your feet doing? any improvements?
kay

Re: lumbar sympathetic

Sharon W on 12/22/02 at 21:22 (103808)

Actually, yes. I guess luck has smiled on me. My TTS surgery went well, and after 5 months I'm about 80% improved.

On the other hand, I doubt very much if it will get better than this. And that means I'll have to try to find work that does NOT involve standing. I'm not trained for any sit-down jobs, either, so I know where you're coming from with that...

Sharon

Re: lumbar sympathetic

kay on 12/23/02 at 09:23 (103838)

sharon isn't it so hard to think about having to find some other job? i think about my work place and friends who are more like family and i want to cry. i miss them terribly.
someone told me about vocational rehibilitation and i am seeing them, i may be eligible for free schooling because of my disability. but it is still scarey. i don't know if i can do it. i guess i have no self confidence and don't know what i want to do.
kat

Re: lumbar sympathetic

Sharon W on 12/23/02 at 19:46 (103868)

Kay,

Yes, it's terribly hard to make changes like this in our lives, especially since it is NOT something we do willingly and gladly.

It's not just a person's career that is affected, either. Sometimes it feels like foot problems have taken over my whole life, have become #1, my FIRST consideration. For example, 'Can I go to that new movie, or eat at that restaurant, without having to WAIT IN A LINE?' Or, I used to love wandering barefoot along the beach, watching the gulls. But now, I have to make careful plans: 'I'd better bring along a watch to walk along the beach (wearing my supportive shoes, my orthotics, and my compression hose!) because I know since I can't handle more than one hour on my feet, if I walk DOWN the beach for more than HALF an hour, I will be in pain before I get BACK...'

It's SO frustrating!

Sharon

Re: lumbar sympathetic

kay on 12/23/02 at 21:09 (103875)

my limit is about 10 minutes without wanting to scream in pain. we just got back from the grocery store and i thought i'd die before i got out of there. i was going to try to make some cookies when i got home but i cannot be on my feet anymore tonight. it just hurts too much.
i agree with you that changing my job would not be so scarey and hard if it were something that i was wanting to do. but now its like i HAVE to find something else. truthfully i don't know what i can train or school to do. nothing that i'll have to take algerbra for in school. lol
i can keep books and a check book, manage a house and i know i could manage something like an apartment complex even, but in order to get a job like that i'd have to take business management and that would mean algerbra. shoot..........what am i going to do?
kat

Re: lumbar sympathetic

Sharon W on 12/23/02 at 23:31 (103879)

Kay,

I really wish I could answer that, for either one of us. What CAN we do, that earn us honest salaries without making our feet worse?

I have never faced RSD, I've only feared it. But I do think I have some idea what you're talking about. Last year I a lot like you just described -- I couldn't stand more than 10-15 minutes on my feet, at the best of times, and there were other times when the shooting pains got so bad there was NO WAY I could walk, or drive a car, or try to do ANYTHING besides huddle up into a little ball of pain and wish the world would go away. That's how it was for me last year at this time.

And I can really relate to what you said about making cookies. I remember how DESPERATELY I wanted to at least make up some cookies for my family last year, but there was just no way I could stand to be on my feet that long, even using a stool most of the time. It broke my heart, and left me feeling really discouraged.

But as I said, I've been lucky. My surgery was a 'success'. This year I was SO excited about my progress I made LOTS of Christmas cookies, and gave them out to neighbors, friends, doctors, my physical therapist -- everyone! It felt so good to be able to do something NORMAL again. Noone would understand that, if they haven't known what was like not to even be able to do the simple things.

Of course, it still doesn't mean that I can be on my feet long enough to work most jobs...

Oh, well. I try to enjoy what I can, and to appreciate the people around me whose love I share.

I wish you a Merry Christmas, surrounded by all the people you love.

Sharon

Re: lumbar sympathetic

Pam B on 12/24/02 at 21:12 (103949)

Well, I think I did get some relief the first time, but, it is hard to tell...slept the nite through which I dont normally do...so that must mean something.....they told me the first one may not do much if anything or I may not realise it....the second one I did for a couple of days.....and as you know, any pain relief is a good thing :) I go Thurs for the last of my series of three and will let you know how it goes....

As for how it works, well I cant answer for other docs or patients....but they told me that they have to be pretty sure it is RSD to do these blocks where I go....they called it a working diagnoses though.....so how I was told is that if you get no relief, even though you have pain, it is probably not RSD...but if you do get relief, it is RSD....as you know I am sure, it comes in three stages.....I am told I am in stage two.....and that it is very very rare for it to ever get to three....that is the reason for attempting to control the pain and hope for remission....

I hope I have been some help, I did not see this message until today or would have responded sooner.....have you had the block yet???????

Merry Christmas, :)

Re: lumbar sympathetic

kay on 12/25/02 at 14:57 (103983)

hi sharon it must be great having the impovement you've had after all this time. some days i feel i will never improve and then other days i do have some bits of hope. if it weren't for those days i don't know what i would do. i have to remain hopeful. i have to.

pam i haven't had my block yet. what is it after the block that they can tell if it is rsd? or at least make them think it could be? i read something about the foot heating up but was confused about it.
my new pain doc said if i had rsd that it was only a slight case, which is good.
is the test very painful?
kay

Re: For Kay: there IS hope

Sharon W on 12/25/02 at 19:01 (103990)

Kay,

There IS hope. When RSD is caught early and treated immediately, you can get it under control and actually have a life again. (Ask Wendyn to tell you her story, sometime...)

Sharon

Re: lumbar sympathetic

Pam B on 12/25/02 at 19:07 (103991)

The block is used to confirm the diagnoses of RSD.......my doctor called it a working diagnoses..........the way I understand it is, if the block relieves pain, that helps them determine with the other symptoms and whatever other tests you have had done that you do in fact have RSD.......if you get no relief from the shot at all after the first series, chances are you dont have RSD....the doc told me prior to the first block that they have to be reasonable sure you have RSD before they will even preform the block....after my second one last week, the doc confirmed I do have it and am in stage two of the disease....

The warmth you feel after the block is a normal reaction that anyone would get if it is a successful block......I asked about that and was told you would have that response even if you had nothing wrong with you......

As for pain, well, some places like where Laurie R goes give you something in your IV to sedate you for a few minutes.......where I go they dont :( let me put it this way for you......I would prefer to be asleep......now dont misunderstand me, it is not excruciating pain, but it dont feel great either......I also think it depends on who does it......when I had the first block two weeks ago that doc (not my doc, she wasnt in that day) was awesome, I was in and out in fifteen minutes, but the last one was a different doc (my doc) and it took almost forty five minutes and was more painful than the first one......but again, I am getting some relief so the pain is worth it......I go tomorrow for my third one and will keep you posted....according to what they tell me, if you have RSD and you continue to get the blocks, relief should be longer with each one until they can space them farther apart and your relief is lasting longer.....she even said at some point they may stop the blocks if the relief does not improve.......so I will keep you posted........

Do you know if you will be sedated or not?

Merry Christmas, and I hope it was a happy one too :)

Re: lumbar sympathetic

Pam B on 12/25/02 at 19:19 (103993)

And yes, Sharon is right there is hope......the earlier they catch it, the better off you are......the doc told me the earlier they get it the better the chances are of putting into remission.....she also told me that sometimes when they give you the block and you do have relief.......that the relief may be permenant.....for some people the disease can go into remission on its own, for some a few nerve blocks and medication can give permenent relief......there are lots of horror stories out there but I have also heard some good stories too......

As for me, all of this started for me about three weeks ago when my ortho suspected it......so this is all very new to me and I cant really advise you too much except to tell you my experience.....but I can tell you this, from what I have seen in some and heard, the hardest part is acceptance.......no one wants to think they have it because the disease in itself can be very very scary......buttttttttttt, my doc said that in the majority of cases, treatment is successful and that the horrible things you hear about and read are very very rare......so good luck to you and I hope that if you do have it, you have caught it in the very early stages, thank God you have a good doc that is smart enough to see your symptoms and send you for treatment....it is sad that some docs just think the pain is in your head.....that is what happened to me.....I have had these symptoms since late spring or early summer, but the doc I was seeing said that it was undiagnsable pain even though he did not testing or anything of the kind......he just told me to get used to it and get on with my life.......so your lucky your doc is aware of the condition and sending you for confirmation.......I am sure your chances of remission are great since it seems you have caught it so early on......but I will pray that it isnt that and just chronic pain that can be controlled with meds until it subsides.......good luck to you and keep us posted :)

Re: lumbar sympathetic

Dr. Z on 12/25/02 at 19:24 (103994)

RSD can be helped if caught early and treated aggressively. One of the most rewarding experiences was making the dx of RSD and making sure the patient received all the treatment needed. The pateint was only 22 years old and hopeless. That was two years ago. She still stops in to see me to say hello.. Physical therapy is also a very important part along with the epidural blocks. You are on the correct road to recovery you have alot of people on this site willing to listen and help including myself

Re: lumbar sympathetic

kay on 12/25/02 at 21:56 (104001)

thanks to everyone for all the info. i really never thought i had it, i guess i'll have to wait and see. i feel like i am having trouble with scar tissue instead of rsd.
but what do i know?
thanks again.
kay

Re: lumbar sympathetic

Pam B on 12/26/02 at 07:56 (104016)

Chances are you dont and until they tell you yes, I would not stress over it.......scar tissue can be just as bad depending on where it has attached itself to.......your in my prayers and keep us posted.......

:)

Re: lumbar sympathetic

Pauline on 12/30/02 at 19:43 (104337)

This board certainly supplies support for people when their doctors give up on them so don't stop posting. Hopefully the pain clinic will be able to provide you with some relief.

Re: lumbar sympathetic

Pam B on 12/22/02 at 12:57 (103754)

Kay, you are not alone.......I too have just began pain management and they have done two blocks and I have had relief.......I have been told I am in stage two of RSD.....I know how defeated you feel, and I can sympathize with it.....I have also been put on neurontin in addition to Vicodin and Lidoderm patches.......it sounds to me like you need to go to your family doc also.....depression and anxiety go hand in hand with these issues.......they have me on Wellbutrin and Xanax for that.......I did not want to face the reality of the disease when they told me I had it.....it took a few days for it to sink in.....they gave me some very good litertaure to read and it was helpful in addition to giving me some really good websites to research........See, my doc told me with the first block that RSD was a working diagoses until they seen if I got relief from the blocks......they scheduled them in a series of three and I have had two and have the third next week......I did get relief which confirmed the RSD diagnoses.......it is good that you are going to the pain docs now because if you do have this, you want early treatment so hopefully it will go into remission or at least provide relief from your pain.......I am so sorry you are hurting so bad and I sure do understand how you feel.....and it is so hard at this time of year to just not do anything......not to mention I know you want your life back.......but know your not alone.......this board is full of people that understand your pain both physically and mentally......as hard as it is, try to remain positive and please let us konw how this all is going.......I will be glad to provide you with my email address if you would like it.......you take care and know your not alone......God Bless and know my prayers are with you......take care and keep in touch.......Pam :)

Re: Life should get better for you!

BrianG on 12/22/02 at 14:53 (103770)

Hi Kay,

Believe it or not, you should should feel a little more hopefull now that you are bieng referred to a pain clinic. If you get lucky, and have a compassionate doctor, your life is going to take a turn for the better. The Neurontin can sometimes help with nerve type pain, but typcically you'll need a different type of pain med for the tendon and inflamaton type pain.

Try to work closely with your doctor, to ensure you are getting meds that will work for you. Communicate with her weekly, if thats what it takes. Normaly you'll be started on a small amount of pain med, and then gradually have your dose increased until you are comfertable. The pain will always be there, but you should be surprised at how your quality of life improves. Don't be surprised if you end up on a coctail of meds, to treat the pain, depression, inflamation, etc. Remember to take your meds at the prescribed times. It's much easier to keep you pain under control with a daily dosage, than to back off when your feeling better, and then have to try to catch up and put the fire out, once you've had a relapse! Not all pain docs are created equall. If you feel that yours is not listening to you, and only wants to go by the book, it's time to look for someone else with more compassion. I pray you find a doc who will try his best to help you. You have the right not to suffer!!!!!!

Good luck
BrianG

Re: lumbar sympathetic

Sharon W on 12/22/02 at 19:17 (103789)

Kay,

You had your TTS surgery just a few weeks before I did; I remember seeing your posts. It's good to hear from you again, but I'm very sorry about all the pain you are in.

Brian is right-- a good pain clinic can help you to get back to a life that is manageable. Reducing the pain should definitely be top priority right now. Just be sure to tell them exactly how bad it really is -- some people seem to get kind of shy when it comes to talking about pain, and then they may not get the treatment they need.

My thoughts are with you.

Sharon

Re: lumbar sympathetic

kay on 12/22/02 at 20:39 (103796)

pam when you had your first block did you know if you had relief right away? or did you have to go home and walk around to figure it out. i am kind of confused as how they will tell if its rsd.

kay

Re: Life should get better for you!

kay on 12/22/02 at 20:44 (103798)

thanks to all who answers my questions, i am on welbutrin for depression i got started on that last summer. but now it seems like i'm never ever going to get better so i am feeling as if the welbutrin isn't working any more. maybe i need a dosage increase i don't know. or maybe nothing will help me now.....as things get worse when i thought i'd be better and back to work by now. i know now i'll never get back to work. i was kind of arguing with my doc about that ......because he said i can't go back, that i should find a sit down job.........i'm not trained for anything but stand up factory work. i've done it for 15 years.
kat

Re: lumbar sympathetic

kay on 12/22/02 at 20:46 (103801)

yeah sharon i remember seeing your post too. i've had so many ups and downs with this, mostly down.
how is your feet doing? any improvements?
kay

Re: lumbar sympathetic

Sharon W on 12/22/02 at 21:22 (103808)

Actually, yes. I guess luck has smiled on me. My TTS surgery went well, and after 5 months I'm about 80% improved.

On the other hand, I doubt very much if it will get better than this. And that means I'll have to try to find work that does NOT involve standing. I'm not trained for any sit-down jobs, either, so I know where you're coming from with that...

Sharon

Re: lumbar sympathetic

kay on 12/23/02 at 09:23 (103838)

sharon isn't it so hard to think about having to find some other job? i think about my work place and friends who are more like family and i want to cry. i miss them terribly.
someone told me about vocational rehibilitation and i am seeing them, i may be eligible for free schooling because of my disability. but it is still scarey. i don't know if i can do it. i guess i have no self confidence and don't know what i want to do.
kat

Re: lumbar sympathetic

Sharon W on 12/23/02 at 19:46 (103868)

Kay,

Yes, it's terribly hard to make changes like this in our lives, especially since it is NOT something we do willingly and gladly.

It's not just a person's career that is affected, either. Sometimes it feels like foot problems have taken over my whole life, have become #1, my FIRST consideration. For example, 'Can I go to that new movie, or eat at that restaurant, without having to WAIT IN A LINE?' Or, I used to love wandering barefoot along the beach, watching the gulls. But now, I have to make careful plans: 'I'd better bring along a watch to walk along the beach (wearing my supportive shoes, my orthotics, and my compression hose!) because I know since I can't handle more than one hour on my feet, if I walk DOWN the beach for more than HALF an hour, I will be in pain before I get BACK...'

It's SO frustrating!

Sharon

Re: lumbar sympathetic

kay on 12/23/02 at 21:09 (103875)

my limit is about 10 minutes without wanting to scream in pain. we just got back from the grocery store and i thought i'd die before i got out of there. i was going to try to make some cookies when i got home but i cannot be on my feet anymore tonight. it just hurts too much.
i agree with you that changing my job would not be so scarey and hard if it were something that i was wanting to do. but now its like i HAVE to find something else. truthfully i don't know what i can train or school to do. nothing that i'll have to take algerbra for in school. lol
i can keep books and a check book, manage a house and i know i could manage something like an apartment complex even, but in order to get a job like that i'd have to take business management and that would mean algerbra. shoot..........what am i going to do?
kat

Re: lumbar sympathetic

Sharon W on 12/23/02 at 23:31 (103879)

Kay,

I really wish I could answer that, for either one of us. What CAN we do, that earn us honest salaries without making our feet worse?

I have never faced RSD, I've only feared it. But I do think I have some idea what you're talking about. Last year I a lot like you just described -- I couldn't stand more than 10-15 minutes on my feet, at the best of times, and there were other times when the shooting pains got so bad there was NO WAY I could walk, or drive a car, or try to do ANYTHING besides huddle up into a little ball of pain and wish the world would go away. That's how it was for me last year at this time.

And I can really relate to what you said about making cookies. I remember how DESPERATELY I wanted to at least make up some cookies for my family last year, but there was just no way I could stand to be on my feet that long, even using a stool most of the time. It broke my heart, and left me feeling really discouraged.

But as I said, I've been lucky. My surgery was a 'success'. This year I was SO excited about my progress I made LOTS of Christmas cookies, and gave them out to neighbors, friends, doctors, my physical therapist -- everyone! It felt so good to be able to do something NORMAL again. Noone would understand that, if they haven't known what was like not to even be able to do the simple things.

Of course, it still doesn't mean that I can be on my feet long enough to work most jobs...

Oh, well. I try to enjoy what I can, and to appreciate the people around me whose love I share.

I wish you a Merry Christmas, surrounded by all the people you love.

Sharon

Re: lumbar sympathetic

Pam B on 12/24/02 at 21:12 (103949)

Well, I think I did get some relief the first time, but, it is hard to tell...slept the nite through which I dont normally do...so that must mean something.....they told me the first one may not do much if anything or I may not realise it....the second one I did for a couple of days.....and as you know, any pain relief is a good thing :) I go Thurs for the last of my series of three and will let you know how it goes....

As for how it works, well I cant answer for other docs or patients....but they told me that they have to be pretty sure it is RSD to do these blocks where I go....they called it a working diagnoses though.....so how I was told is that if you get no relief, even though you have pain, it is probably not RSD...but if you do get relief, it is RSD....as you know I am sure, it comes in three stages.....I am told I am in stage two.....and that it is very very rare for it to ever get to three....that is the reason for attempting to control the pain and hope for remission....

I hope I have been some help, I did not see this message until today or would have responded sooner.....have you had the block yet???????

Merry Christmas, :)

Re: lumbar sympathetic

kay on 12/25/02 at 14:57 (103983)

hi sharon it must be great having the impovement you've had after all this time. some days i feel i will never improve and then other days i do have some bits of hope. if it weren't for those days i don't know what i would do. i have to remain hopeful. i have to.

pam i haven't had my block yet. what is it after the block that they can tell if it is rsd? or at least make them think it could be? i read something about the foot heating up but was confused about it.
my new pain doc said if i had rsd that it was only a slight case, which is good.
is the test very painful?
kay

Re: For Kay: there IS hope

Sharon W on 12/25/02 at 19:01 (103990)

Kay,

There IS hope. When RSD is caught early and treated immediately, you can get it under control and actually have a life again. (Ask Wendyn to tell you her story, sometime...)

Sharon

Re: lumbar sympathetic

Pam B on 12/25/02 at 19:07 (103991)

The block is used to confirm the diagnoses of RSD.......my doctor called it a working diagnoses..........the way I understand it is, if the block relieves pain, that helps them determine with the other symptoms and whatever other tests you have had done that you do in fact have RSD.......if you get no relief from the shot at all after the first series, chances are you dont have RSD....the doc told me prior to the first block that they have to be reasonable sure you have RSD before they will even preform the block....after my second one last week, the doc confirmed I do have it and am in stage two of the disease....

The warmth you feel after the block is a normal reaction that anyone would get if it is a successful block......I asked about that and was told you would have that response even if you had nothing wrong with you......

As for pain, well, some places like where Laurie R goes give you something in your IV to sedate you for a few minutes.......where I go they dont :( let me put it this way for you......I would prefer to be asleep......now dont misunderstand me, it is not excruciating pain, but it dont feel great either......I also think it depends on who does it......when I had the first block two weeks ago that doc (not my doc, she wasnt in that day) was awesome, I was in and out in fifteen minutes, but the last one was a different doc (my doc) and it took almost forty five minutes and was more painful than the first one......but again, I am getting some relief so the pain is worth it......I go tomorrow for my third one and will keep you posted....according to what they tell me, if you have RSD and you continue to get the blocks, relief should be longer with each one until they can space them farther apart and your relief is lasting longer.....she even said at some point they may stop the blocks if the relief does not improve.......so I will keep you posted........

Do you know if you will be sedated or not?

Merry Christmas, and I hope it was a happy one too :)

Re: lumbar sympathetic

Pam B on 12/25/02 at 19:19 (103993)

And yes, Sharon is right there is hope......the earlier they catch it, the better off you are......the doc told me the earlier they get it the better the chances are of putting into remission.....she also told me that sometimes when they give you the block and you do have relief.......that the relief may be permenant.....for some people the disease can go into remission on its own, for some a few nerve blocks and medication can give permenent relief......there are lots of horror stories out there but I have also heard some good stories too......

As for me, all of this started for me about three weeks ago when my ortho suspected it......so this is all very new to me and I cant really advise you too much except to tell you my experience.....but I can tell you this, from what I have seen in some and heard, the hardest part is acceptance.......no one wants to think they have it because the disease in itself can be very very scary......buttttttttttt, my doc said that in the majority of cases, treatment is successful and that the horrible things you hear about and read are very very rare......so good luck to you and I hope that if you do have it, you have caught it in the very early stages, thank God you have a good doc that is smart enough to see your symptoms and send you for treatment....it is sad that some docs just think the pain is in your head.....that is what happened to me.....I have had these symptoms since late spring or early summer, but the doc I was seeing said that it was undiagnsable pain even though he did not testing or anything of the kind......he just told me to get used to it and get on with my life.......so your lucky your doc is aware of the condition and sending you for confirmation.......I am sure your chances of remission are great since it seems you have caught it so early on......but I will pray that it isnt that and just chronic pain that can be controlled with meds until it subsides.......good luck to you and keep us posted :)

Re: lumbar sympathetic

Dr. Z on 12/25/02 at 19:24 (103994)

RSD can be helped if caught early and treated aggressively. One of the most rewarding experiences was making the dx of RSD and making sure the patient received all the treatment needed. The pateint was only 22 years old and hopeless. That was two years ago. She still stops in to see me to say hello.. Physical therapy is also a very important part along with the epidural blocks. You are on the correct road to recovery you have alot of people on this site willing to listen and help including myself

Re: lumbar sympathetic

kay on 12/25/02 at 21:56 (104001)

thanks to everyone for all the info. i really never thought i had it, i guess i'll have to wait and see. i feel like i am having trouble with scar tissue instead of rsd.
but what do i know?
thanks again.
kay

Re: lumbar sympathetic

Pam B on 12/26/02 at 07:56 (104016)

Chances are you dont and until they tell you yes, I would not stress over it.......scar tissue can be just as bad depending on where it has attached itself to.......your in my prayers and keep us posted.......

:)

Re: lumbar sympathetic

Pauline on 12/30/02 at 19:43 (104337)

This board certainly supplies support for people when their doctors give up on them so don't stop posting. Hopefully the pain clinic will be able to provide you with some relief.