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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE]Hi everyone. I was diagnosed with CRPS in early February following surgery on my foot in late December. I am currently taking 400mg of neurontin 3 times a day & 50mg of pamelor once a day. I have not done too much research on the condition but following my 1st appointment today with a pain management doctor & a few visits to some RSD/CRPS websites tonight, I am starting to freak out a bit.

The doctor told me that it can spread to other extremities which I read in the past. He said that something as insignificant as getting blood drawn could be a "trauma" that would cause it to spread to your hand. He recommended that I start a series of nerve bocks next week (1 a week for 5 weeks). I am afraid to even go in for any procedure now, especially this which includes an IV and a needle in my back! And I read tonight that it spreads in 70-80% of the people with this condition. Is this true??[/quote]

Yes it does spread in 70-80% of people who get RSD. Being diagosed so fast means there is a great chance of getting it into remission. I'll go into that in a minute.

Getting nerve blocks, especially a series of them this early is the best thing you can do! The blocks don't hurt, it's the least invasive of any procedure and it is standard procedure when someone is diagnosed with RSD. Most of the time, it's the 1st thing that happens in the newly diagnosed.

A lumbar block doesn't hurt. If the doc does it like 99% of the other docs, you will go have an iv started in your hand or arm, then you'll receive meds, the main one being versed which will relax you. Then, right before the block happens, in my case anyway, the doc gave me a shot of something that put me out for a short time. When I woke up I was in recovery.

The block should be done under flouroscopy or live x-ray. This enables the doc to put the block exactly where it belongs.

The office should have given you instructions on what to do or rather not to do before the block. That includes having someone drive you there and home as you will be unable to drive yourself and it won't be done if you can't find someone to take you to get the block. Someone should also be with you at home for the rest of the day as your leg will be numb. You may experience a bit of soreness in your back the next day but not pain.

You should keep track of how long the pain relief, if any, you get from this block. With each block the time should hopefully get longer.

[quote]I keep reading that this is something that stays with you for life. If that is the case, is it worth it to try the nerve block? If it doesnt go away, then what is the point of the procedure in the 1st place? They say that people in the early stage (which is me) respond better to this kind of therapy, but what does that mean? Is it possible to get rid of this?

I'd really appreciate any help you could offer. Thanks for listening!

-Allison[/QUOTE]

Yes, RSD is for life. There is no cure but there is remission. Remission is a complete lack of any pain or symptoms of RSD. Being diagnosed within the first 3 months is the best hope of getting it into remission. There are so many of us who get diagnosed too late for anything to help and others get diagnosed early but due to insurance companies, most work comp, medical care is delayed until it's too late.

As I said above, the nerve block is your biggest and best hope of getting it into remission before it does permanent damage to nerves and before the pain goes independent. When that happens no amount of nerve blocks will help.

It is all worth it to get remission. The main thing to keep in mind is from this point on you should be careful of getting injured again which can spread it. If you are in remission it could cause it to come back. Don't be afraid to live, never that, just be mindful is all.

You will never be "cured" of RSD but you will hopefully be one of the lucky ones who gets remission. I hope with all my heart and soul that such quick action by your doc with meds and blocks gives that to you so that you can continue to live life without meds and pain all the time. RSD isn't the end of everything just a new beginning and a new way of life. Not one we ever envisioned for ourselves but it doesn't have to be all doom and gloom either.

Hope I've helped you with all this explanation. Don't be afraid to ask anything more. I will do my best to give you answers.

Hugs,

Karen
Allison,
When I first started the neurontin , I felt the same way.. I didn't think it was doing anything.. Its most used for the shooting pain and burning.. It will take time for them to find the right dose for you.. You've only been taking it about what 2 months.. Give it more time..
If I forget to take one before bed time.. I wake all through the nite in pain.. This is when it really shows how much it does work for me...
Are you getting tired with it.? When I first started it.. I also started with Lamictal. I was out cold... I didn't eat.. All I did was sleep.. I felt drunk all the time... In about 3 months.. all the symtoms went away. ..
So hang in there.. I think you have a great chance of beating this to remission.. Don't be surprised if you have some discomfort after the block.. Not right away but.. Hrs later..
Good luck...
Michelle





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