I am currently on lyrica 450, morphine 30 mg twice daily, percocet for break through pain, preinsone, and flexiral...

No i am not talking to anybody or in cousl. however after today i reallly think i need to be i am.. Terrifed... and just want somebody to listen to me.... Just somebody with a PHD.. to listen.. my neuroligist the one i havent seen yet basically told me most likely you arent going to get any better we will have to see what you look like when you get here... There is no hope... for people with these types of issues.... Most people are forced to live with the pain... (thats the rough wordig...)I bursted in to tears and frankly hung up the phone out anger....

I just wanted some help because i feel like somebody is burning me with a lighter from with in... the pain is so hot.... i dont know what to do...

THank you for your support and response....

Heya,

Calm down girlie!!! BREATHE!

I know how much this thing sucks and I know how much it hurts - welcome to this group of people. As others have said it is important to check it's "really" RSD.

However - regardless of whatever it is- you have neuropathic pain - and we all know what that feels like - HELL!! It is so hard to get hope when you feel like you are on fire, and it is so hard to carry on with everything and it changes your life. But, it doesn't mean that you can't get through it. Do you have a PM dr? It could be worth trying to get a referral to a pain management psychologist? They can help you to learn "mental" manners of keeping pain down, through breathing, relaxation, meditation etc and in helping with pacing activities.

I can't be any help with the TOS side of things, sorry!

Anyway, we are all here if you want to talk neuro pain, and i just so hope that things can get sorted out for you!!

Love

Frogga xxxxx

I have TOS and RSD. I have had many TPI's and they have helped me more then anything. It's not something you can have a few of though, it takes many of them to get the pain to calm down. Each area has to be calmed down.

As far as blocks, you might ask for a block to help diagnose it and also ask for a series to see if it can be calmed down by them.


I have seen a lot of success with the series of blocks done on people. A good Anesteolgist can help with the blocks.

If you are diagnosed with TOS and do opt for surgery ask for a block to help stop the RSD from spreading. I didn't know about the blocks the first time and the RSD spread. Since then I have had blocks for every surgery I've had except a few that was done in a hospital where the Dr. didn't know how to do them. That's where the RSD spread to.

I'm sure if you have been on the TOS forum you have seen many that have had unsuccessful surgery and some that had successful surgery.

Mine was a success. I had a great TOS surgeon and I am happy with where I am today with my surgery.

I hope you don't have the TOS nor the RSD. One thing about the TOS the surgery helps with symptoms but the TOS stays. It doesn't end the problem.
Mine helped with the pain and usage of my arm but I still have to watch how I use it or I will see some symptoms that surgery won't stop.

It's hard to say which Dr. is best at diagnosing RSD. A hand surgeon diagnosed mine after my TOS surgeon sent me to him. Some people have been diagnosed by pain Dr.s some by Neurologist. You just have to find a Dr. that knows about RSD. That's the hardest part.

Good luck and I hope you stick around and the others will help you out a lot.

You will see better days with this. Don't get too worried about that. It is going to take time and good Drs. It took me 6 years and a great line of Drs. to get me to where I am today.

I know exactly how you feel. I was in such a shape I couldn't stand living in the pain I was in. I found some good Drs. and a good Anesteologist and feel like I have come a long long long way.

You WILL get better, it's not going to happen overnight, and no you might not get well completely, but you will see better days.

Keep getting those TPI's.

Ada

A water therapist (physiotherapist) diagnosed me.

What he failed to tell you, is that some people have gone into remission with RSD. It is different for everyone. The only constant is the pain. Even those who have gone into remission, acquired a new injury and the RSD came back. The greatest short term goal for you to make with yourself is: (repeat after me) I WILL GET MY PAIN UNDER CONTROL, I WILL HAVE FLARE UPS BUT MY LIFE AND MY SELF WORTH ARE NOT AFFECTED DUE TO THESE FLARE-UPS. I WILL BE ASSERTIVE WITH MY DOCTOR AND INFORM HIM THAT POSITIVE THINKING WILL GET ME FARTHER THAN NEGATIVE THINKING, AND THERE IS NOTHING WRONG WITH HAVING HOPES THAT THE NEXT TREATMENT WILL HELP.

We are always here, even 2 or 3 or 4 in the morning (sometimes I am one of those). Vent ALL you want and need.

Hugs - things will turn out okay. Please request a referral to a psychologist experienced with RSD.

I forgot to ask on the TOS side- have you had any c spine xrays or MRI to check for c spine causes. {damage to the nerves at that point}
It's very important to get that verified as a yes or no for the c spine /nerve question.

frogga is right, deep proper breathing {diaphragmatic}can really help to relax and de-stress. When we get all tensed up we tighten our whole body up {muscles} and will take smaller shallow breaths-
we need that oxygen getting to our cells !

Diaphragmatic breathing
http://www.cchs.net/health/health-in...asp?index=9445
http://www.swamij.com/diaphragmatic-breathing.htm

I know it's scary for you now, but there is always hope that some good help, remission or even someday a cure will be found.

And if it is TOS also, we just had a thread about Self Help Remedies
http://neurotalk.psychcentral.com/sh...ad.php?t=23579

Hi Jacquelina!
The other friends here have given you excellent advice, although I do have to disagree about those having "nerve blocks done".. I have never heard of anyone saying the blocks made it spread! If it did, we would all be having RSD spread. It can spread by surgery though. I want to wish you the best in finding yourself a good "bed sided mannered pain management doctor" though! one who is compassionate, will not say;"there's NOTHING more he/she can do"! what a "cop out" if I ever heard one!! They should be seeing you at least once a month or more! Love and Desi

Wildberry,

Welcome to this site. I'm also from MN. I think that you need to be seen at a Pain Clinic, that will do a block which will help in th dx of RSD. I've been seeing the same Dr since 1998. If it wasn't for my Physical Therapist, I don't know how long it would have been before I was dx. I've also been seeing a Psychologist for my depression. If you're interested in getting the names of my Drs, please let me know and I'll definitely get them for you.

I know that I wouldn't be here today without the help that I've received, from my team of Drs. I wish you the best of luck in getting a proper dx and hope that you start getting some pain relief.

Gentle Hugs
cjay

I have spoken with many, many RSD patients through running an RSD forum, as well as emailing, IM'ing, etc. I am not trying to come across as a know-it-all, because I certainly am not, nor am I a medical professional. But, I can say that some of my members, as well as other people I met on the internet have had blocks and then had their RSD spread. Not all of them, by a long shot, I am not looking to scare anyone, but it can and does happen a lot more than one might think.

For example, my situation... I have what my PM dr called a "bizarre RSD presentation" because it started in my neck and shoulder area, then moved as follows: back, sides, right arm now left leg. Mine was all in the neck and shoulder areas until I started having injections of different meds to help with the pain, it then began to spread. Now my PM doctor has said NO MORE - even anything minimally invasive CAN cause the RSD to spread. So, in my case, I cannot have SCS, blocks (would be injecting my RSD area), no IV's or blood draws above the waist, etc. all because anything, even minimally invasive, can cause the RSD to spread. So, unless a surgery is a life or death situation, I have been told not to do it, and with the amount my RSD has spread, I wouldn't consider it.

Just thought I'd throw my 2 cents worth in on the topic, just to warn people. I was always told that all these things could be a help, but I am living with the results of what they can do, and what I have witnessed others go through.

Hi Jacquelina, and huge ((hugs))

Dealing with this is very hard! I know!

I was wondering- in all your symptoms you mentioned you didn't say that you had color or temp changes in skin, hair/ nail changes or swelling?

Just curious, because RSD includes those types of things...


Huge pain free hugs and prayers being sent your way!