[nikmcjo]

I have lower body rsd. They are gonna do a nerve block where they surgically insert a catheter in my back for like 3 days. I've already had a regular nerve block without much success. Any luck or info about the catheter procedure? thanks.

[RSDmom]

Hello-
I am a mom of a 13 year old girl who has struggled with RSD. My daughter loved gymnastics like you. There are lots of options that drs can explore to help with the pain. It sounds like you and your parents need some help finding options to give to your doctors. Websites like RSDSA.org and RSDHope have been very helpful to me as a mom when I try to find out what all this is about. There are lots of connections to be made here as well. I know it gets exhausting trying all sorts of paths to get better and unfortunately with RSD, it is the patient that needs to educate the doctor. My daughter is VERY lucky to have amazing drs right now, but they are the first to admit that they are learning about RSD too. My daughter has been in a wheelchair and on crutches and gets so frustrated with both. Everything is harder, but it has to get better. Some things that have worked for her include physical therapy, essential oil lavendar rubs, lidocaine patches, warm water baths, sometimes contrast baths (although not this flare), meditation, relaxation tapes, pool therapy and nerve blocks. I hope this gives you some ideas to ask your doctor about. Unfortunately, not everything works for everyone and there are times when something works for one day and not the next. The key is don't give, keep trying and check back in often with others. Call friends up and have them come over to watch a movie or play a game or something. Try to stay connected. You can do this.

Hi there...

Welcome! First off, Mom just gave you very good advice. Second, amputation is just not an option. Many doctors think that RSD, mirror pain and phantom pain all happen for the same reason (whatever the reason is, they don't know that yet!) - get on the computer and look up "phantom pain". Bottom line is that chances are that even without your leg, you'll still have the RSD in the missing leg...weird, huh?!!

Having said that, have you tried nerve blocks? Just do a search on this forum, we have lots of information about that here, they have helped many people.

Hope you find something that works soon,
all the best

Hi Honey,
I want you to know I care. My RSD came from a injury as well. It came from a fall 5 years ago. If I would of known I had severe nerve damage at the first year my nerves would of healed sooner.

Their is a test called a Neurography. It shows weather the main nerves are damaged or entraped. A reg. MRI will not show it. It will also show if something Vascular is going on. My subclavicle artery was very compressed.

http://nervemed.com/nerve-entrapment.html

Filler MD is my surgeon. Please email him and give your medical history. He has a heart of gold and is a nerve detective. He saved my right upper limb.

I know your young and this DX is so rough please hang in their. It will get better. I beg of you. Big Hugs, Roz

[Jomar]

welcome to the forum -
I think you will find some good help here.
Read many of the other posts too they are full of information and the useful stickys right above the threads list.

If you need any help searching anything just post and ask about it.

here's a search on - nerve blocks RSD -
http://www.google.com/search?hl=en&l...SD&btnG=Search

Hi Again,
I read where you had a epidural, did you get any relief at all from it? That is a nerve block for lower limb RSD.

Honey if your pain is really rough. Make sure the Docs rule out anything automically wrong. Big Hugs, Roz

[hideej76]

Hey hon.... Welcome to the group, minus the unfortunate circumstances of course! Youve come to the right place! This msg board is awesome! I found NeuroTalk back in Oct, 06 and let me tell you Im SO glad that I did! Ive learned tons from people on here! I was seriously clueless about what RSD was and how to deal with this unfortunate disorder!

I think you should check out this group on myspace.com... Its call "Fight RSD"
This group consists of 4 WONDERFUL girls... Ashley 16 from CA, Anabel 15 from MI, Kara 16 from FL, and Nikki 16 from NY... Fight RSD is a really cool group they have over 356 members.... These girls all work together hard to raise awareness for RSD!!! These girls all have RSD, met off myspace.com BUT never met in person... Put together their website, and work their tails off! BIG thumbs up to them I say!!!!

These girls are all so very sweet! I have become real close friends with two of the group members... Kara and Anabel....

Also another really good support group that I am part of is called "Life Goes On" on myspace.com... This group is ran by an AMAZING lady names Lisa.... She also is VERY knowledgable of RSD... She has fullbody RSD, and has had it for over 12 yrs... I have also become very close with her! She has helped me thru of alot of rough patches in the last 4 months of my life! Shes a person that is caring, listens, and is there for you, I guarentee it!

If I can help in any shape, way, or form... Please ask, I will do my best! Chin up, and two steps forward! I know its easier said then done... But your young, and I know you are a smart, strong gal.... We are all here for you, I promise!

Best of luck! And MANY pain free hugs to you!!!!!!

Always,
-Heidi

[frogga]

Heya

I just wanted to say - I devleoped RSD when I was 16 after a fall. It is a very tough thing to deal with, especially at our age, - but try and remeber that LOTS of people with this get better - it just takes lots of time and patience to find the right set of meds, physio etc. Also, being younger you have a better chance of improving etc.

Hope you start to improve! are you US or UK? are you on SKIPS?

feel free to moan whenever you need to!!

love

Rosie xxxxx

Hi,

So sorry to hear what you're going through. I was just wondering what kind of doc you're seeing and how much they know about RSD. Many very good doctors know zilch about it. I ask because the swelling and discoloration are classic developmental symptoms of RSD, especially in the early stages.

Obviously, this may all be from the infection, or the cream, or a reaction to it, or something entirely different...but the fact that it has moved to the other foot (another RSD development) all seems suspiciously like RSD itself.

Hey, I could be way off the mark here, for all I know your doc is the top RSD expert in the country (?? ) - but to use the old forum's favourite phrase, "if it walks like a duck and quacks like a duck, chances are it is a duck".

In my first year of RSD, which started after I broke my arm and wrist, I could have described my arm and hand in exactly the same way as you just have (although it didn't spread, I was lucky there) - the swelling and discoloration usually appear quite early in this disease and can be severe.

Here is a very basic site for you to read:
http://www.rsdinfocenter.com/

Just in case they aren't getting these symptoms under control, and they are in fact from RSD, I would look up "swelling" and "discoloration" and "spread" along with RSD CRPS in google and print out the best articles to show your doc....

What a trial this RSD monster is, huh?

I hope they sort you out very soon,
all the best

[HubbyWithRSD]

Hello,

I know that it sometimes is easier said then done but I suggest that you put your mind towards hanging in there and not letting this beast get you down. You are young and have many good years in front of you. I am in my second very serious bout with RSD and day after day I struggle with staying positive but constantly remind myself that it took me seven years to adapt to living with the challenges of RSD but I eventually did. Now i am not saying that it going to take you seven years, you are young and can adapt or overcome this in a short amount of time or it may take longer, but remeber if you let up on being positive it WILL consume every bit of your life.

Ok the first time I went through this I got it from a very bad chemical burn and my leg was in extreme danger of being amputated, once we got the infections and sores to settle down they started me in room temperature pool therapy and hot tub treatments (the ins. company purchased the hot tub because of the open sores and I could not be in a public hot tub) many times the pain got worse or so it seemed and then eventually i was able to adapt to differant lifestyle changes as taking breaks while walking and elavating my leg when needed and many times still have to pamper the leg when needed after 12 years but I have been very lucky to not have a major episode in 4 1/2 years.

Now I am dealing with RSD in my right arm after a nerve transposition surgery and ulnar neuropathy and carpal tunnell in the left hand and many days I am having a very hard time with with this horrible condition but still remaining focussed to move forward.

Well it has taken me over an hour to type this but in the moments were I can I will get over to the computer and write to everyone and NiK you hang in there, REMEMBER: Positive in is Positive out - I am a football coach and I always tell my kids that Success comes in CANS -- Not CANT'S Something to think about in your struggles. And to everyone else on the board thank you for the support you have been providing to my wife, in almost all cases the spouse or signifigant other and family members suffer just as much as we do they just have a differant kind of pain and that pain is most often to the left side of their chest.

Everyone hang in with the fight and i will write when I can.

The Hubby