Unofficially dx with TOS and RSD
 

Hello all! I am semi-new to this site.... I was in the TOS forum for a week or so... Since i have been dx with TOS and RSD.... Can sombody give me a little info about what RSD is... My doctor is just leaving me in the dark! Let me introduce myself and my story...

My name is Jacquelina... I have been unofficial diagnosed with TOS.... My doctor seems not to believe in it and now is very hesitant to call it that... I had a MRI which showed constriction on the left side but not on the right... However my pain is much more sever on the right...

The severity includes:
-Pain radiating down the neck into the shoulder and elbow then fingers
-Weakness
-No feeling in my pinky, ring, and middle finger
-When i do have feeling its intense burning and zapping feelings
-muscle spasms
-Burning hot on my right side... my skin turns beat red including, face, neck, shoulder, arm, and fingers....
-and JUST PAIN

I am not sure where it all started but i think it was in volleyball i was diagnosed with tennis elbow and carpal tunnel which always has caused me pain especially when i was writing... then a year or so later i started having muscle spasms really sever and had alot of upper back and neck pain... They always said it was stress...

Then it started turning in to a popping thing... I would be driving look behind my shoulder and their would be a pop... and running pain down my shoulder and fingers...

Now here i am today... I have been on muscle relaxants and pain killers off and on for the last year and now lyrica for the last month... Not getting much relief... and must say gaining alot of weight from i would assume the lyrica,,,,

I went to a pain clinic... They did some trigger point shots in to the muscle to see if it made it better... Well they were relaxed for all of 24 hours and then went back to normal... However that did not stop the pain in the shoulder and fingers..

It must be nerve pain they tell me.. .Even though that’s what i knew all along... Some doctors just don’t listen...

I am sorry to ramble on... What doctors have you seen for this... I could use some help.. My doctor still seems to think i dont need to see a neurologist... I live in the Anoka area....

Again sorry for carrying on... But if you could please help me out with some good infor about RSD?

Hope you are doing well

Jacquelina

I am scared
 

Again to read things like you dont get better and treatment isnt that great for people with TOS and RSD.... Is bringing me to Tears.... I am getting so scared as i dont know what to do.... Does anybody have any remdies to help the deprresion these disorders cause?

Oh hugs. Are you in any type of counseling? What meds are you taking? Even though we are in pain, finding the right doctor can help you control the pain. I find that hobbies/crafts work for me (in my R. knee/hip). I enjoy woodburning myself and then painting it.

I take one day or moment at a time. That's all I can afford right now. It is really important to have a goal that while going through your pain you can look towards your goal and it can help.

My goal is to hike again. Even a little one. Currently I cannot even take a nature walk. Ugg. But as long as I keep my goals, I will make it to tomorrow.

Again hugs.

Wildberry2277
I have CRPS, also known as RSD.

Most of your symptoms do sound like RSD... but, I would be very careful if I were you concerning the injections.

There are a lot of things that the medical community does not understand about what we RSD'ers deal with. Everything, at this point, is "new" for treatment. Not that it hasn't been done before, but that the results are mixed.

For me, I have been advised by two doctors to never have any more injections of any kind... including pain blocks, IV's, blood draws, etc. (near my RSD sites, so, I have to have them below the waist level) I am not a candidate for any kind of SCS (spinal cord stimulator), or many other accepted forms of pain control for RSD/CRPS, and was told "no more surgeries unless it was a matter of life and death".

I run an RSD support forum, and most of my members are in agreement that having injections, blocks, etc. helped for a bit, but in the long term, only cause them more pain, because it tends to make the RSD "spread".

This has been the case with me, which is why I would advise you to be careful about allowing them to do any more of anything, until you have a diagnosis, and also to be careful after the diagnosis. Remember, it's your body, not theirs, you are the one who has to pay the price in the end. There has been much discussion on my forum lately about the progression and spreading of RSD, in fact it is one of the "hottest" topics there.

Mainiac, aka Meme

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.... :o

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

Hi,
 

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