I know there are lots of figures on various websites detailing "recovery rates" from RSD but they all differ so much
Is there an official line on recovery - especcially dependant on age and location of RSD
Do RSD sufferers truly make a full recovery or does the illness go into remission with the possibility of future flare ups
When I ask my consultant he always says " I cannot answer you - everyone is different" but I'd much rather have a realistic figure as to my chances of making a recovery from this illness based on nationwide statistics etc

Ali

I have not heard of any nationwide statistics.
I would think that part of the reason is due to the fact that no one really knows how many people are afflicted with this illness.
I have heard numbers anywhere from 1-5 million.
It is often misdiagnosed and under diagnosed .
You are very fortunate that you got a diagnosis so quickly.
Early intervention is one of the best weapons we have against this illness.
There is also one other weapon -YOUTH!!
I have read that many spontaneous remissions happen in the very young- so I am routing for you
Has your doctor scheduled you for any blocks in your lower body?
Often that can work really well in the first 6 months of the disease process.!!!
You are doing the best thing anyone can do.
You are becoming an informed patient .
While the internet can never take the place of a really good doctor ,it can provide you with additional information and plenty of questions to ask your doctor.
One really good technique is to write all your questions down before your next appointment .
It is so so easy to forget everything you want to ask the doc if it is all in your head.
When you leave his office you will be "OH,why didn't I ask ......"
Just hang in there, one day at a time things can make a lot more sense

Good luck and don't forget to breathe ok

Good n' Plenty(like the candy's - my fav)

Hi Gnp I need to ask, my RSD was caught early. ok, he (The pain doctor) did my blocks(I had 3) now, all three didn't work. Do you or anyone else know since I was dx early, how come you mentiond it's better when caught early?? ok.. the blocks didn't help, I am going to physical therapy(no signs of improvement as of yet) but mine is spreading. It started in my hand and wrist(from the carpal tunnal surgery) now, it is all in my upper arm(deep bone pain in the shoulder area) my pain dr. said it's from the RSD The spine dr. who checked my herniated disk(by the way, it's small and nothing to worry about, as it's not touching the nerves) well, anyway he said I have frozen shoulder! what the?? I am sorta, well not SORTA but VERY CONFUSED here. TIA Love, Desi

Desi and all

Sadly often, does not mean always .If it did there would be far less people suffering.Blocks don't always work .That is a fact .
As I believe you yourself , and many other's have said RSD " has a mind of it's own" and that can truly be said when speaking to it's progression.
Why is it that some people get it in one limb and it stays there for years without spread ,and another can go full body within a week of contracting the disease?
If we knew the answers to these questions I am sure many of us would feel a whole lot better.And, our doctors would have a lot more answers.
What I do know is that regardless of whether the blocks put you into remission or not , and I am very sorry that they did not work for you, (I would not personally stop at 3) you have found ,or you will find a doctor that knows about RSD and one that you trust!!!.
That is a battle for many in itself!
Trusting your doctor and knowing that together you are working on getting the best possible outcome for you is an invaluable x factor in the fight against this thing- and the earlier this this happens the better off you are at finding
the proper mix of meds , physio or whatever that might be to get you in a holding pattern or best case scenario making you better.
Many can go years without even getting to this point in their journey .
If you read my recent threads I have never given up ; I have never stopped searching ; .This does not mean I am not living in peace as I am and I have been but I am the captain of my medical ship, and it is up to me to take the reins and decide where I need to go.
If I don't like the direction a doctor is leading me in I speak up!
I can't get anywhere if I am not informed- don't speak my mind and don't ask for what I want.
This too is a process that does not happen over night but you will get better at it by neccessity.
So take a deep breath. try to relax - and take it day by day
You are on the road to somewhere

Much peaace

GnP

We have had several on here that went into remission but they usually don't come back on here afterward.

I have seen many around here go into remission and it has been due to blocks and PT. I have seen the blocks work for many that have had it for years. I do believe it depends on the kind of meds that they use in the blocks also and how many they give.

Here we have an Anesteologist that has his own mini hospital that he does blocks in after he leaves his job at the regular hospital. He rollerskates to work at the young age of 40+. The man is excellent. I have seen him give blocks to people that have had it for years and they work.

I have had 3 by him. I was scheduled to have at least 15 more but I had a panic attack and threw me into a tither and we quit. Those 3 did the job though. I have been in remission for about 4 years. I also get triggerpoint injections if I see mine trying to come back out. Right now I am getting shots in my pelvic and hip area to calm it down and they are helping.

I also spent over 4 years in Physical Therapy. Not lifting weights nor therabands. Mine was massages and stretching my arms and legs. That did wonders for me.

I honestly believe you will get better, maybe even go into remission. It's just not an overnight thing with RSD.

I don't know what the statistics are as GnP says but I have seen some good results in my area so donot give up.

Ada

Hiya,

How are you? PLEASE try and reply to posts!

There are VERY good chances of you recovering and the eversion leaving..

love

Frogga xxxx

Thank you GNP! All what you said in your post made sooooooooooo much sense!! My new pain Dr. who I just adore, told me no more blocks, as the first 3 didn't work, why try another?(I had 3 ganglion neck blocks on May 1st.8th. and May15th. of this yr.) So I will "speak up" when I see him on the 30th.and see what he has to say about my progress. I am feeling a bit sorry for my self today, as this break through pain really bites! LOL and thank you again, GNP so very much for your great reply back at me!! your awesome! Love ya! Desi :0)

Alli's mom.. yes please try and reply to posts as Frogga said. Your daughter (Hi Ali) writes, but never posts. even if it is a quick reply would be very helpful for both of you. (((Many hugs to the both of you! ))Love Desi

i'll say that i am very discouraged that my 6 BLOCKS did not do the trick - the first two worked like a charm, but after that i didn't notice much relief. i've done PT and have been trying so hard to be good. i have that bad habit of going on and off meds on occasion so i'm sure that is a problem.

i also have way too much stress in my life and that DEFINITELY doesn't help anything.

so i've found out that if i don't take my neurontin, it drives me up a wall. it's like, light a match and watch me burn. anyone else? anyone?

shalom

Hi all,

This is a very interesting topic. In my 9 year journey I have been lucky enough to have had a Pain Management Doctor who has been looking after people with CRPS for nearly 20 years.
Unfortunatley I didn't get to see him for 18 months after my accident and surgery and by this time my pain had become Sympathetically Independent pain-----My brain had the memory of my pain firmly entrenched in it's depths.
His theory is that early intervention may stop the pain whilst it is still Sympathetically maintained--ie-before the brain remembers it.

I think we can often forget that even though the pain is felt in all parts of our body it is only because our brain is telling us it is still painful.

I do think there is a shortage of really well informed Pain Management teams worldwide and also a shortage of GP'S who are able to make a diagnosis and get treatment underway as quickly as possible. When I hear stories from people that the blocks have not worked and they have not even had "horner's syndrome" then I wonder whether the block has been done properly. I would never have a block that was not done under fluroscopy/image intensifying to check the anaesthetic has reached the target area and for me I would never have a block unless I was sedated to some extent as movement at a critical stage can also impact the result.

Alison, please be hopeful that in a year or two this time of your life will just be an unpleasant memory and you will be enjoying life just as all 12 year olds deserve to be. You do have the very best chance of getting better because of your age and your early diagnosis as long as you have a good and knowledgable Pain Team looking after you.
I have always been told by my team that blocks, mirror imagery and physio within 3 months is optimum but 6-12 months in some people will still respond well. Having said that I do know several people who have been "cured" or have permanent remission after several years of CRPS.
Take care and good luck to all
Tayla