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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


The "usual" treatment at the start is nerve blocks,meds and pt if needed. Nerve blocks are used to numb the nervous system essentially and hope it brings pain relief. They are good when the pain is still sympathetically maintained. There's no way to know for sure whether it's maintained or gone independent until you have a least one block done.

For you, like me, the block you would get is called a LSB or Lumbar Sympathetic Block. It's done in the lower back, sort of like getting an epidural. Most docs put you to sleep for a few minutes while doing it. Depending on the doc, you could get one block a week or 2. My doc wanted to do 2 a week for 4 weeks. I only did the one and it was a disaster. It was done way too late (over a yr after starting) and the pain was independent and had been.

If you get pain relief from the block, then the pain is still SMP. A block will also warm up the skin temp and get rid of the color changes. The reason blocks need to be given as I said above is because the effects of them are cumulative. Say with the 1st one you get 6-8 hrs pain relief. With the 2nd you could get 24 hrs, with the third, 48hrs,etc. Ideally that's what would happen. In the real world there's no way to say what will happen for you. Sometimes they work for the first 2 or 3 and then do nothing more, other times they continue to work and you get lucky to one of the very few who get remission. Remission is a total lack of any pain,skin color changes,skin temp change, absolutely no symptoms at all. If you have even a bit of pain still there then you still have active rsd. I read the other day somewhere a guy saying he was in remission but yet the paragraph above he said he still had some pain. Nope, not remission then! I like to clarify for the "new" ones. :)

It's been 6 months and [I]some[/I] would say your "window" is closed or closing. All the studies I've read say it needs to be caught and treatment begun in the 1st 3 months. At 6 months changes to the nerve endings begin. I'll stress again though, that everyone is [B]different[/B]!! None of that means it's "too late" for you! :) It's just ideal that treatment begin soon after symptoms start.

I wish I could say you have a better chance at remission but there's just no way to know for sure. We react to things differently so you may begin treatment and be one of the lucky few or not.

A test you could get is a bone scan. If there are changes to the bone caused by rsd then it will show. If there are no changes then it won't. It's kind of a 50/50 thing. Just because the test comes out normal doesn't mean you don't have rsd,just that there's no bone changes. The bone changes it picks up are osteoporosis or the beginnings of it called osteopenia. It also shows healing fractures. That's all that showed up on my first one. I didn't even know my knee had been broken! :-O They(ER doc) said it was just badly bruised. LOLOL Suuuurrrre. LOL

Taking calcium will help. Grapeseed extract is something that has been successful for slowing down spread and/or keeping it from spreading. Like everything else about rsd,it really depends on your body. Vit C is also a great thing to take. They've done studies that show taking it after a broken bone reduces the chances of rsd but if you already have it it still helps.

I don't think it sounds like any kind of allergic reaction. It sounds like rsd,burning,color change,temp change,pain....rsd.

RSD affects both our whole nervous system, the sympathetic and parasympathetic. They keep our voluntary and involuntary systems running. This is the reason people deal with a low grade fever for no reason, blood pressure changes, sweating, hot flashes,etc. with rsd. The immune system is all part of that as well and usually isn't affected by rsd early on. You know it's being affected if you seem to pick up every cold germ known to man every time you turn around. LOL

Any doc you have right now should be involved in a way. All the docs you see need to know and understand what rsd is, if they don't already know. They should have factual info and not some of the crap too many docs out there believe like....it can't spread(yeah right!) It can and does in most. Since it travels along our nerve pathways it can go anywhere it darn well pleases! lol You need a good pain management doc for the meds and they usually do the blocks as well.

My opinion in the process is to just be realistic. To not think oh it'll just go away or whatever, but to not give up hope either. Think positive thoughts that blocks will work, keep a good attitude as much as possible. Adjusting is never easy. It hurts me to see people get blind sided when they realize it isn't going away and their life is changed forever. Once you have rsd, you do have it for life. If you get remission it could come back from stubbing your toe or for no reason at all. This is the big sucky part of the whole thing.

Be proactive, ask all the questions you want to and we'll do our best to give you our experiences and knowledge. Don't let any doc treat you badly for any reason. It sounds like the docs you have now are good ones so you're lucky.

I guess I covered everything you wanted to know for now. LOL :D There is no such thing as a dumb question either. Speak up and ask.

Welcome to the board, just sorry it's because of rsd.

Hugs,

Karen
I wouldn't really say that any RSDers go into remission other then children and teens.. and if you have been Dx with RSD within the first six months of injury along with intense PT...
Theres so much said about remission.. so many questions... What is remission.. You hear that all the time.. Is it pain free? Is it pain free along with taking meds?
I could say I am in remission.. but I still take meds.. I still some bad days.. I am not sure I am in remission.. Like my dr says.. Does it really matter.. as long as my quality of life is better. Thats what counts.. I am not getting any worse.. I've only improved.. I've only met one person who was only six yrs old.. She was a pt where I use to work.. She injured her knee and was dx with RSD.. She started intense therapy for five days a week for over a month.. She is completely better.. No symptoms of rsd nothing.. That is what I call remission..
I think the most important thing is your quality of life.. Trying to get back what you lost.. There are a lot of pts who can get there..
Once you get the proper cocktail of meds, you start sleeping better, you start physically moving around better and with all of that mixed together.. It helps with your mental state.. All of that combined will help with any chronic condition..
So my feeling is.. The goal is not get into remission. Realistically.. may not happen.. The goal is... to improve your quality of life..... Improve you mental state.... When that is done.. Life is ok...
Just my opinion..
Michelle
According to all the medical papers and such I've read remission is a complete lack of any symptoms at all. No meds, no pain, nothing. Like with cancer. You're in remission when there's no cancer to be found. If you still have some pain or any other stuff then you're not in remission.

I'm with you in that if you find something that's worked and gives you back part of your "life" so to speak, then YEA! :D Anything that helps cut back on the amount of meds, YEA!:D LOL Remission is good but IMO with so very few getting it, it's your attitude and what you do with your life regardless of anything else that counts. You can let this consume you,give up and sit around, or go on despite it all and do what you can.

I'm happy for every single person who finds something that allows them to go back to work and function. I miss working and other stuff, like riding in a car lol, but eh....I have a great life, the most awesomest and best hubby in the world,fantastic kids. I'm still breathing and laughing....what more could I want?! :D We are all strong women...and men :). I love this board and every single one of you on it!

Ok,mushy stuff over. LMAO

Hugs,

Karen
Sharon,
I agree with you.. When dx with RSD its always best to try all treatments offered to you first..
I just am not sure about this remission thing.. Is remission pain free for how long?? Some pts. who have had the lidocaine infusions.. They are pain free for several yrs.. is that considered remission? Its been been a yr since I had my last infusion.. I am not any worse but I still have pain.. and take meds on those bad days.. and still take the neurontin everyday.. I guess the best thing I should do is call my Dr and ask him.. I know what he would say to me.. lol..
What counts is that you are feeling good.. Thats how Dr S is... lol
I know I will probably have this for the rest of my life.. and I am sure I will have those good and bad days for the rest of my life.. I just say to myself.. It is what it is..
With any illness its always good to have that support... I didn't have it at first.. I am not to sure anyone believe me.. For four yrs the dr didnt know what was wrong.. They just kept saying herniated dics.. So family and friends thought it was that... At least the first two yrs they didn't.. then the symptoms became so visible..
My father.. He still to this day probably don't believe me.. I don't care.. I know whats wrong with me.. and I know my brother don't.. He once said to me.. Stop feeling sorry for yourself.. and get treatment.. instead of sitting around look for a job... your doing this all to yourself.. I said I have three letters for you.. RSD.. look it up on the internet then call me back.. He never did.. so now we aren't to close.... I would never be like that to him or anyone else.. as long as I don't live in their shoes I do not have a right to judge..
I'll be honest though.. This board was my back bone.. It fell into my lap at the right time.. I was a mess when I first came on here.. Physically, mentally and financially and relationship... but I finally got it all together.. lol.. I am sane now ....
Now it my turn to give the support back...
Michelle





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