wondering what to do now
 

So, not all of you know my story although I feel close to many of you. I hurt myself sliding a 10yr old 250lb girl up in bed while I was working as a pediatric nurse. Initially we thought it was all pulled/torn muscles in my neck and shoulder....then the tingling in my left hand...the numbness...the color change. A lot of test and dx with rsd early in the process. Not long after finding this site it spread to my right arm. Now I have had another bonescan,mri, and emg. My left shoulder joint is very loose, I have a herniated disc in my back and the worse of all...after a week of hell was once again diagnosed with a spread.....ALL LIMBS. I think the sinking of hope is worse sometimes then the pain...or maybe the pain is the same. Any of you ever had so fast a spread? I used to be a runner....now my left leg is always swollen and both my feet turn purple. I had to fight with my pain doctor for recovery meds....good news he'll do another block...just one and I get to pick the limb. Since the last one only lasted 3 hrs I am not even looking forward to it. How do we all do it....how do we live our lives and not loose hope after it slowly takes over our lives....In less than a year I have gone from an active fun-loving 29year old nurse, step mother of 3, and sister/daughter to a 30 yr old woman in an 80 yr old body. I want to thank you all for being there for me so many times and with all my questions. I think this site has kept me sane. I have made some good friends who I know I will continue to keep close in my life as much as possible. I am just having a pity party right now....I was hoping to have a child of my own soon...now I don't see how that could be possible. I have spent years taking care of other people's children (both at work and at home) and I think this is what hurts the most. So for any Mom's out there....can you give me hope? I have put my life on hold for so long already...my wedding, having children....working. I am scared Jennelle

hi im with you i have full body and organ involvement i was 16 when i got rsd that was 11 yrs ago and like you mine spread from my right shoulder arm and neck to all fourm limbs in 5mths. i had not one doc that could decided what was wrong with me or if i was just faking.. i know that it is hard as a parent with RSD period . there are a some of us that deal with this daily .. yes sometimes the sinking feeling of what will be next does over take you more than the pain. if this PM isnt willing to help you need to find one that will. there are good docs out there the problem is finding them.. it took alot of bad ones for me to find that good one. and like you blocks dont last on me more than 4 hrs if im lucky
but my doc is willing to do what he can to try and help keep my pain down as far as he can..
but just so that you know it does get better not pain wise but managable wise.. you learn to do things in a different way and to cope alittle better

hang in there hun
pm me anytime you want

carrie

Jennelle,
Don't live too much in the "now".
While you must come to a point, where the "Now" is great, you've also got to find a source of strength!
I've had this monster, for well, a long time, since 1983. With Tos.
And, add to that, since 98 a TBI, with Discs neck, and low back.
I'm a total mess.

Yet,
Read your post.
You Laugh, You live!
Like most of us here.
Even in and with our depression, so too, do we!

It's with each other here, yea, we can recommend this, and that doctor for this and that.......but, what I find so important about this site, is the "Brother/Sista/Humanhood" where we ALL find common ground!

WE don't question each other. We take one another at face value. There is NO Judgement!
Our Families will surely judge! So too, may some of our Friends!

Not here.
What you say, is taken at face value.
I understand, I hear what you say about your fright, you wanted children of your own.
That may still be possible. Speak to your doctors,
AND,
Please,, Be Sure, that you have the BEST Doctors!
There is Nothing wrong, with "doctor shopping".
They'll only want to make sure, you're not "drug shopping".
So just be straight up with them all, and tell them, if that's your choice, to "shop".

I cannot advise you much, on having your own children. I have two of my own, that I raised myself
(with rsd), and I remarried a golddigger, and now my children no longer speak to me.
I must get this divorce finished.
So, I hear your plea!
I do.

This, is a "Tough Row To Hoe". Of that, there is no doubt.
But,
God would not have let it fall upon you, if he didn't have FAITH IN YOU!!

Jennelle,
God loves you,
And,
So do we!
:hug::grouphug::hug:

Keep talking to us?

pete
asb

....you are loved
 

Life throws curve balls when we least expect. Be it Carrie as a teenager, Pete as a young adult, me in my late 40s...we all were "taken aback" by this culprit known as RSD( and most of us have tag along conditions..I have Fibromyalgia; depression/anxiety,etc.).

The coping skills that we have had to develop to learn to live with RSD, places each of us in a special club. Membership is not sought out; however, isn't it nice to know there is a place one can go and everyone knows your name? No, not the vintage tv show, Cheers, but the support blog/chat known as NT:)
NT, a place that not only knows your name,but also the issue (RSD) that makes each of us inter-connected in an intimate way.

I, for one, feel so blessed to have NT which creates an avenue so that I am able to reach out to each of you on this site..be it to give support or accept support. I know that I am not alone in this club, and at times, it is ONLY the members in this special club that can understand what I am feeling.

I know you are feeling overwhelmed and I want you to know that you are loved and support is always with you. I am here for you, anytime... just reach out.

Life unfolds in mysterious ways. RSD has made me aware how strong I am, even at my weakest point when the pain is controlling me vs. me controlling the pain. I get through those rough times and blogging in NT( asking questions and answering questions), is a coping avenue that has made a real difference in my life with RSD:)

:grouphug:
Dew

I know how you feel. I too have been feeling like that since the day I had that damn accident at the age of 23. We have no choice in the matter, RSD is thrust upon us and as of that moment on we are forced to just deal with it however bad it gets. The sad thing is that like people with pestilence, others tend to avoid us from that moment on.

I really don't have any answers as far as having children goes. You'd have to ask the ones here with RSD who have had children while having RSD.

I am so sorry. Trust me I know the mental ups and downs along with the pain. When my condition spread and now even my non rsd health conditions too leave me feeling hopeless but when I get a little break as I call it though the pain is still there I try to regroup with a game plan. I also have my mom who is my strength and support and without her I would not of kept fighting. That is why I encourage you to ask your family for more support. It is not a sign of weakness needing help. It won't be forever but if you take on too much with this it can create more problems. Just like doing too little is not good too much is not either.I also fear the future as I too live like I am 80 at 30. For myself I am trying to focus on finding the right treatment because with that it can really give you a better quality of life. I have told this story but know a girl who has rsd that spread where should could not walk and it also went to organs. This for many years and was unable to go to school as she is 17. She tried multpile treatments that failed. Even had a scs that failed to get another one later that was a success. It took many years and so many doctors like an unreal amount in many states but she is now living life. She went back to school and to even prom. My point is you never know what may help you.
Now back to your condition physically like I have said I think yes you have RSD but also should look into other condtions too that could be adding to this. That is why I felt a new pain doctor and also a neurologist. I have been to many specialties and many 2nd,3rd opinions. What I have found is many have a different approach to this and a different look may give you better quality of life and pain. Sending many thoughts

once again i thank you
 

Once again this site has lifted me up when I need it most. The love and understanding is something I have never encountered before. I want to thank all of you who responded and all of you who are a part of this site. Since i joined I have found some wonderful friends and always know that I can depend on a reply that will lift me up and at the same time give me truth. I do feel like we are all in this fight together and it is times like last night when you feel so alone that turning here and KNOWING that you will receive a response from caring people that understand. Thank you all and I know that i need to find new doctors....mine has finally admitted that he is out of his element. I am told that the pain clinic may hold answers as to who are the best in the area. I will go to the eval...wc actually tries to blame me for having to move the date that I am not getting better because of that!!! Once again thank you all for the love and support.
Jennelle

Dear Jenelle,

You should be looking for the best RSD doctor you can find - in a teaching hospital or a large medical center. Since you were hurt on the job you are covered by WC for your care. Do you have a good WC lawyer that will advocate for you? Are you going to PT? Have you meds been fine tuned?

On this board I was amazed to read a few months back that pregnancy puts RSD into remission.

I think that you are giving up too soon.

Good luck. XOXOX Sandy

Somehow this doesn't surprise me.

It seems there are lots of things that want to make it stop. I keep thinking there should be a way to trick the brain into turning it off permanently.

Jennelle,
after re-reading you post, it occurs to me that you may have undiagnosed TOS (Thoracic Outlet Syndrome).
There is a thread here for it, you should check that out.
How and where you injury is involved, might indicate that.
It can make your arms and hands very weak, and cause headaches too.
You need a good neuro, or hand/arm surgeon to diagnose that.

A standard test for it is like this:
Raise your hands to a "Hands Up" position. (You're under arrest):eek:

Then, move your arms (elbows) back as far as you can.
It's a good idea to have another person, or do this in front of the mirror.
Your pulse, at your wrists should drop off completely, and if you have a mirror, you will see your hands turn white. (No blood flow), and, you'll also get numbness in your hands. With TOS, this WON'T be a comfortable position to hold!

I don't want to be a bearer of bad news, or certainly not wishing this on you, but it can help to know if you do have it.
I hope you don't.:hug:

Pete
asb