[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

[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

[smtac]

Hi nikmcjo,

Having RSD as a teenager really sucks. I'm not one any more but was diagnosed at 13 and remember it very well. I know it can be really isolating and often friends just don't really get it - and find it hard to understand why you sometimes can do something, sometimes can't, sometimes need crutches, sometimes can still join in etc etc.

I'm afraid I don't have any great advice to offer - except do NOT get an amputation. I've been down that road a couple of times and thankfully did not go ahead. It can make RSD a lot worse.

My only other advice is to keep talking - online, or elsewhere. I was not good at that as a teenager and RSD is difficult enough without handling it by yourself, especially when you are young. Find a couple of close friends that you really trust - I know it's really difficult to share the scary parts with other people but having someone who gets it and will pull you along when you feel like you just can't do it any more is really a good thing for RSD people! And keep talking to others with RSD who don't need any background explanation - we just know what you mean and you don't have to explain a thing! Keep venting about it while you work through treatments and flare ups and just regular every day life living with this thing. The mental battle is just as complicated as the physical battle.

Just wanted you to know there are other (ex)teens out there who really do understand how this feels - keep going.

[frogga]

Hey

I developed this when I was 16 and so I also know what it's like to live with this as a teen - it is very difficult, but manageable.

I have been lucky to have the most awesome mates ever who don't care about the wheelchair/ the care I need etc. They can tell when my pain is getting bad and insist on me resting for a couple of minutes. They don't mind me cancelling them or saying that I'm not up to going out of the house - instead they grab popcorn and movies and come over to mine.

the hardest I have found is keeping up with everyone without flaring and with the level of pain- I used to do everything my mates did and then crash for a week or two in a flare. So I started to choose which activies were most importantly to me but that left me enough time for resting etc. (also my mum instigated a rule that either I was home by midnight or I slept in my wheelchair!).

However - hang on in there and things hopefully will improve!!

Take Care

rosie xxxxxxxx

[InHisHands]

Hello. Great thread. Sorry I haven't said "hi" and welcome here yet.

I wanted to say that you are not alone.

What smtac and Heidi said is great- keep on talking to others with RSD. You can find many yahoo groups, message boards, etc... It helps to talk to others who KNOW. I know how much it has helped me. There are people who understand EXACTLY what you are going through.

I am also a teen with RSD. It is hard, but we're gonna get through it!!! Sending many gentle ((hugs)) to you.


Good posts, everyone! You have really encouraged me. I liked your post, Hubby (HubbyWithRSD)...

Hang in there everyone!