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

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 :hug:
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
 

The blocks are used all of the time for diagnosing RSDS.

I have seen so many people around here improve so much from blocks that I would encourage anyone to have them.

We had a group going for awhile a few years back and in my time with RSD I have met at least 12 people. All of them have had blocks and I think maybe one said they didn't work.

From what I see on the forum here people only have one or two. Around here Anesteolgist do a series. I had 3 but was suppose to have 15 more. I had a panic attack during my 3rd one but it did do the job. We decided to quit due to my panic attacks at the time.

I know a girl who had 100 of them to get her up and walking. I saw another girl with RSD for most of her life go to have them and she said she had never felt better in her 40+ years. I have a friend 4 doors up from me with RSD. She just went through blocks and she says she is doing better. I have been trying to get her on here but she is still working to get her mobile sat up and underpinned.

I have seen a lot of good come out of blocks and triggerpoint injections. They are using the TPI's. I have not seen many Drs. that give them though. I guess they aren't getting that popular yet. I think it's due to the fact that it takes time to give them and it's too time consuming for the Drs. There are 3 PM Drs. around here now that do them and my PCP does.

I think different areas must do different things at different steps of RSD. I would rather try the blocks and TPI's first rather then have a SCS put in or a Pain Pump put in until the last resort. I'm not saying people don't need them but they should be the last resort.

When mine first started I wanted the pain pump and my PCP held me off of getting it and keep doing the TPI's and Physical Therapy. I spent over 3 years in PT to get it calmed down. I had a great PT team.

To me calming down RSD is not an overnight thing. I think it takes a lot of time and a Dr. that is willing to give it.

I do believe in the blocks and I always hate to see someone say that they don't work because there are too many out there that they have worked for.

Ada

I understand that I should have been more clear in my reply... I am not saying that blocks have not helped many people relieve their pain, not at all. I am saying that after blocks, many people have experienced their RSD spreading, sometimes not immediately, sometimes never, but it does happen.

Let me be clear on my point. If I had RSD in my leg, would I want and receive a block? YES... But... my RSD is IN the area where they administer the blocks, etc. After telling other RSD'ers that I know, that I couldn't have blocks because they feel they could cause my RSD to spread, they were hesitant and thought that my dr and I didn't know what we were talking about. I heard a lot of "well, they helped me tremendously", etc.
But my question to them was this... "would you let then stick a needle into your leg (arm, etc) where your RSD is?" They emphatically answered "No, never"... So, that is my point. We all have to do what is best in each situation. There are many doctors who are now realizing that there are factors which can cause RSD to spread. I am not saying that this happens in a majority of cases, I am saying that it can and does happen. I would never try to talk someone out of getting pain relief, we deal with too much pain. I just feel that, depending on where your RSD is located, there needs to be some caution, as well.

Nowhere in my previous post did I say that having blocks would not relieve pain, but in my situation, as I stated above, it is not in my best interests to try.

Hi Jacquelina, and huge ((hugs)) :hug: :hug:

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... :confused:


Huge pain free hugs and prayers being sent your way! :hug: :hug: :hug:

Welcome...
 

Here something i posted a few days back in the TOS forum... It was my first real sign of RSD.... My doctor side i already had it... No i havent seen a PM doctor because i cant get anyone to listen to me... My doc said RSD was no big deall... FINDING OUT IT IS!:mad:

I need some help with this question.... I was playing cards which really upset my symptoms.... Durning the game all of a sudden a got a really burning pain inside my elbow and then up to my shoulder neck and right side of my face... and finally in to my finger... The burning turned my arm red.... and it was a terrible pain.... Has anybody every had tempture changes in their arms.... The pain is the worst today then it has been in awhile...

I am kind of freaked out... .dont really know what it could be... Visbly having it beat red compared to my other side....

Please if anyone has any info let me know i dont see a TOS doctor for 3 weeks same with a neuroligist...

It's important you do some Groundwork...
 

Jacquelina,

I told you in my earlier post that I lived in MN also....forgot to tell you that I live in the Twin Cities area. My Pain Clinic is located also in the Twin Cities...in fact they have quite a few office throughout the metro area. So as I said before if you'd like the name and phone # of a clinic that deals in RSD, TOS, Chronic Pain and ect...just give me a shout and I'll get it for you.

Gentle Hugs,
cjay

Hey
 

Cjay,

I sent you two private messages! Doctors names and numbers would be greatly appericated! I have to make a whole bunch of phone calls tomorrow and if you already have some one good with handling RSD I would love infromation!

Please contact me!

Wondering... when it was red was it hot to the touch too?? :confused:

Any doctor that says RSD is no big deal has lost their mind!! It is not some simple thing... it's really a difficult disease to treat. I hope you can find a new better doctor!

Huge pain free hugs xxxxxxxxxxxxx