[Jennelle]

I never knew that nerve blocks could make rsd spread. I have had 6 and my rsd has spread to my right arm (now it is left and right). I need to know if anyone has studies or concrete info on this because one dr believes that the rsd has spread and another doesn't and is making me go through the whole process of bone scan and emg again. He said for rsd to spread it is really rare and that without another injury to that arm he doesn't know why it would. Now I am wondering if it was the injections that were responsible. If anyone could email me or pm me some info to give to the doctors (and maybe save me from some very painful procedures) it would help A LOT! Thank you all again for being patient with my question-a-day. I really think you are all wonderful and am grateful everyday to be able to log on and find friends who understand.
lots of love,
Jennelle

[GalenaFaolan]

RSD spreading isn't rare at all. You only have to look around to see that. LOLOL

RSD spreads on it's own a lot without any further injury. The pain signals sent from the nerve endings to the brain and back again travel through our spinal cord. This is the same route that causes it to branch out and spread to other parts. I'm still baffled as to why so many doctors think you have to have another injury for it to spread. No, that is a myth. There's doesn't have to be an injury, it'll spread all by itself just fine. lolol I have articles about rsd and spread that I'll dig up for you. :-)

I don't think the blocks had anything to do with spread. After a certain amount of time, it's different for everyone, it will begin to branch out. The nervous system starts to bounce those pain signals out to another region, so to speak. There are changes to the brain and nerve endings after having rsd for just a few months. There's really no surprise that it would then spread.

I don't know about doing another emg. If the first one was normal and you have no nerve damage, then making you do another one serves no purpose at all, except to aggravate the nerves even more. Another bone scan is a good idea though. Sometimes in the early stage of spread or even the beginning of rsd, it can show positive changes that can be dx'd as rsd. My 2 bone scans at 5 months and 1 yr 5 months were normal. The ones I've seen that had a bone scan in the first 3 months or had one as soon as spread occurred, had the bone scan turn up "positive" for rsd. I can only figure the reason for this is because of the beginning stage when the limb is changing in blood flow, circulation and such that it has an effect on the bone that goes away, sometimes, after the initial phase. Of course everyone is different. That seems to be a mantra for rsd. LOL

Hope this helps you out a bit. Have you gotten any pain relief from the blocks? Getting no relief means the pain is sip and getting more blocks aren't going to help. Blocks only help pain that is smp.

Hugs,

Karen

[CRPSbe]

You're right Karen. In Belgium Dr. F. Someville (not involved with RSD anymore) wrote a paper about how to interpret the bone scan.

In the first stage it will be positive for RSD, it will normalize in later stages and in the final stage a bone scan can be perfectly normal. So it is basically useless as a diagnostic tool, but is often used as such, which endangers patients who happen to be in later stages, if the doctor isn't knowledgeable about RSD.

[Jennelle]

The blocks worked really well at first, it was like having my life back. Then it would wear off. I got them every week for 6 weeks, we stopped after my last injection because after just 3 hrs I was at pt and I was already turning purple. My first bone scan came up probable rsd, now they want to do the testing on the other arm to see if it is rsd there also. I told them that I have read that it can spread and even brought in some websites to show them info that it can spread and my rehab dr just doesn't want to believe it. He also said it wouldn't change my treatment and because I am on workers comp that they probably wouldn't pay for the treatment of my right arm anyway. I think that is crap- if it weren't for hurting myself in the first place it wouldn't have spread. My pain doctor does believe it is rsd and said some of the same things you did about the spread. I was just hoping that if there was info that the injections could do it maybe the other doctor would leave me alone and stop making me get poked and such. He also said that the bone scan might be hard to get results from because they compare one side to the other to get results and if they both have rsd it might not be a good read. I just don't know. Thanks again for responding...seems i can always count on you!
Jennelle

[GalenaFaolan]

I know how bad wc is. They will refuse spread and insist on and only allow treatment for the original body part only. That's what they did to me. It didn't matter I was full body before a full year was up. The only thing they "allowed" was my left knee. It is crap. WC issues are my pet peeve anyway. I wish the system would be re-done and had oversight. Instead, every state has different rules and they abuse the workers they are supposed to protect!!

Considering the time thing, the bone scan might be helpful now. They should do a full body scan like they did me. Then they could compare all body parts! :-)

I sent you a pm with links and stuff.

Hugs,

Karen

[Jennelle]

Originally Posted by CRPSbe

You're right Karen. In Belgium Dr. F. Someville (not involved with RSD anymore) wrote a paper about how to interpret the bone scan.

In the first stage it will be positive for RSD, it will normalize in later stages and in the final stage a bone scan can be perfectly normal. So it is basically useless as a diagnostic tool, but is often used as such, which endangers patients who happen to be in later stages, if the doctor isn't knowledgeable about RSD.

I am going to bring this up when I go into the doctor next. Thanks so much!!
Jennelle

[CRPSbe]

You're welcome!

I need to add that a bone scan can be even more problematic if you have RSD in mirroring limbs. They actually do normally compare one normal leg to a not-normal (RSD) leg. If you have it in both limbs, there's not much to compare. Anyway, that's what I was told.

[AintSoBad]

Originally Posted by Jennelle

I never knew that nerve blocks could make rsd spread. I have had 6 and my rsd has spread to my right arm (now it is left and right). I need to know if anyone has studies or concrete info on this because one dr believes that the rsd has spread and another doesn't and is making me go through the whole process of bone scan and emg again. He said for rsd to spread it is really rare and that without another injury to that arm he doesn't know why it would. Now I am wondering if it was the injections that were responsible. If anyone could email me or pm me some info to give to the doctors (and maybe save me from some very painful procedures) it would help A LOT! Thank you all again for being patient with my question-a-day. I really think you are all wonderful and am grateful everyday to be able to log on and find friends who understand.
lots of love,
Jennelle

Jennelle,
You've gotten some wonderful advice here.
What I'm not happy with is your doctor. He's just not knowledgeable with rsd, if he doesn't know how it spreads. Of course blocks can make it spread.

I reckon it to a short circuit in wiring. (really, undersized wire that's overloaded with pain signals). If the wiring keeps being overloaded, the short circuit is GOING TO SPREAD! (The reason I believe blocks can help the spread is, you get relief at first, sometimes, then, the pain returns. That's another overload on the wiring.) Soon, blocks are useless, and often the rsd has exploded. It's my belief, that if the blocks do you no more good, why get them? Why take the chance?

My doctor is VERY knowledgeable, and, knows that he won't make the pain zero.
That's not his goal. He works to make it tolerable. And, not let it get WORSE!
I've had tests and blocks that have sent my rsd from left arm/shoulder, to full body.
Although, it has been a long time, @26 years.
But, life goes on! For everyone!

You're asking all the right questions, if you're stuck with this doctor, keep bringing him information. I hate to recommend doctor shopping, because I know what a pain it is.
Often, the insurance company will help you, if you call the "whoever" and say you're not getting good relief, you've studied this disease, and you know you need someone who specializes more.

Just some thoughts.

I hope you find some good relief!

Pete
ASB

[angelrsd]

hi hun
yes rsd spreads period! mine spread to all four limbs and neck in 5 mths top!!! no other injury no blocks or anything just spread. its now basiclly head to toe and internal.

about the blocks making it spread like pete(asb) posted about the neurology now i acutally read the article today. and it says in their opion that blocks do only make you worse. but in my experince this goes both ways it can do both make it better and wrose at the same time... blocks dont last but a couple hours on my 8 at best. but now i have to have them to help with my legs. and if your doc is tellin you that RSD doesnt spread maybe you need a new doc !!!mine is very good with RSD and knows for a fact that it does and can spread when ever it feels like it period.

have you looked on RSDhope.org or any of the other RSD sites i know they have articles on the spreading

hope that you feel better soon

carrie

[ali12]

Hi jennelle,

I'm so sorry to hear that you are going through all of this right now! I really hope that things start improving for you soon and you're in my thoughts and prayers!

I have had a guanethidine nerve block and it made me so much worse also! My dr injected directly into my rsd leg and for 14 months after the block, I couldn't walk and my mum had to literally carry me everywhere!!!! My dr didn't know before performing the nerve block that you should never inject directly into an rsd limb. It was only after I had the block that my mum found an article on the Internet saying never to inject into an rsd limb unless you absolutely have to and by that time, it was too late as the complications had already started to happen! I had to go through an intense physical therapy course to learn how to walk again short distances but even now, my walking is bad and I fall a lot (that is how I injured my arm).

Did your dr inject directly into your rsd limb??? If so, I would definitely speak to him and ask if he knew that he should never do that before he did the block. As someone else said, he doesn't sound like he is that experienced in treating rsd! RSD can spread on it's own - you don't need to injure yourself for the rsd to spread! I know it might be stressful but if you aren't that happy with your dr, please try and find another one!! It's extremely important that you are comfortable with your dr and that he/she knows what they are doing!!

I have an article somewhere about blocks and rsd spreading. I'll try and find it for you as it might be useful!

Take care and if you need someone to talk to, please know that I am here for you!

I hope you feel better soon!