NeuroTalk Support Groups - HELP...my RSD friends...

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Still get nightmares about it

Keep Smilin,

I worked for 6 months after the onset of my RSD (at that point, I was not yet "officially" diagnosed). The worst thing was the way I got "fired". I went into work one day to find a replacement girl there to do my job. I was humiliated! I considered my boss and co-workers extended family and friends to me and nobody had the guts to sit me down and talk to me about what was going on with me medically. Now, in retrospect, I see that it would've been inevitable that I could no longer work. Only one co-worker keeps in touch with me since that day.....eventually they move on without you....still continuing thier lives while you sit home 1) because you are in too much pain to attend social activies and 2) since you are no longer working, you cannot afford the social activities.

As I've stated before, the battle of the identity loss within has been hard. It's very apparent in the form of re-occurring dreams I have where I am AT my former job, but NOT ALLOWED to do any of the work (as in, for me, not being allowed to work on any clients). I wake up from these nightmares withl such an eerie feeling within. I wish I knew of SOMETHING to replace my former occupation with, but usually only end up with 'illusions of grand 'duer' when looking through the Help-Wanted Ads. I'm not sure about your particular level of ailment, but for me, the reality is I cannot handle any type of work at this time (I was approved for SS Disability, but I would rather work!)

One thing I do have going for me..... as far as a hobby I have that I can continue to do...... is that I write novels. I have 2 completed, but never really had the time to pursue the steps to representation and publication. Not working has allowed me the time to do it, and maybe perhaps that is my next calling. I'd cross my fingers on it, but they're too darn painful to have to try and uncross. LOL! ;)

I think it is hard for all of us to accept the changes RSD/CRPS brings to our lives. I have had full body for 9 years. I tried to work for 5 years after being DX. It was hard I was determined like all of you to work through the pain and not let it show. I would go home at the end of the day not able to enjoy my family.

I was sure I would get back to work some day. I went to see Dr. S in Philly. He asked me what my long term goal was "I want to get back to work". I loved my job I worked in customer service for a manufacturing facility. He told me that day he would do everything he could to get me back to work. I went back the next day to go over the results of some tests he had ran and discuss my options for treatments. He told me I would probably never get back to work. My goal needed to be focus on the quality of my life.
Every Monday for the last four years I get up in the morning and wish I was getting ready for work.
Letting go of your job is like mourning the loss of a good friend. I told my doctor it's not my ability to do my job that was the problem it was my dependability. See, I pride myself on be able to be dependable. With RSD you never know when it will knock you off your feet. The day can start out OK but go down hill fast with pain.
I identified myself with my job. I felt a sense of self worth and accomplishment. It was hard to walk away. My employer was really good about it. It's been 4 years and my code is still good on my pass key.
I have moved on. I do volunteer work twice a week for about 2 1/2 hours a day. It's working with kids something I love. In addition to letting my job go I had to resigned my position on the local school board after 8 years. That was really hard, I felt like I was letting all the people who voted for me down.
There is no doubt RSD changes our lives in many ways. Some changes are worth it even though they are very hard to make. We need to think of what is best for our health. We have to look at different ways to do the things that make us happy.
We can not be defined by RSD and we must continue to control what we can control. I have chosen to keep control of my attitude. I will admit some days are difficult but a smile no matter how hard always makes you feel better. Take time to laugh and enjoy something about your day. RSD for me likes my body and will be with me for a while. I will not let it define me as a person.
Sorry to ramble.
I wish all of you days with less pain!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sandy RI... and Vanna

Quote:

Originally Posted by SandyRI (Post 598225)

Dear Vanna and Smilin,

My most significant RSD pain was in my head. I remember when it first started I would wake up vomiting from head pain around 5 a.m. I'd take a percocet and drink some coffee so the caffeine would get the meds into my system ASAP. Then I'd get my act together and like a good girl go to work, never missing a day. In spite of the RSD, I honestly thought I might have a brain tumor in there too because the pain was so awful. That went on for at least 4 or 5 months - if I used my arms for anything too strenuous, or the wind blew on my neck, or it snowed....UGHHH!! It turns out that my RSD is from brachial plexus injury. The brachial plexus got injured at work but I beleive that my RSD is from my ortho surgeon's aggressive PT, icing, and 2 surgeries, then I had trigger point injections in my neck and head (another brilliant RI practictioner - NOT!!), yada, yada, yada...

My last day of work was June 19th. I have one year from that date before my health benefits will run out and we will have to switch to my husband's, which is far less affordable for our family. I also have one year technically before I might not be able to go back to my old job, after that my boss gets to decide whether he wants to take me back or not.

Anyway -- I left because I just couldn't do it anymore. I was getting sicker and I was tired of being a hero with the pain. Plus I ran out of sick and vacation time to use for my doctors' appts. Even though I did my PT (not with the negligent ortho's office, but with a new guy who did his best to learn what he could about RSD), I still needed to see my Boston docs, my PCP, and various others. And most importantly, my job is REALLY technical, and I started making mistakes. It was getting hard to focus and stay organized on all my meds. So I finally had to call it quits.

I know how you feel with the change from being so busy everyday and then BOOM!! - nothing. At first I used my time to research ketamine doctors and then to gather all my papers to try to get appts to see a few that are in the northeast. My biggest goal right now is to get better enough so that I can TRY go back to work. I am not interested in filing for SSDI yet because I have kids to educate. I am afraid that with the property tax burden in RI, and the low rate of pay that I receive from WC, I will have no choice but to sell my house. And I love my house and my neighborhood.

Keeping in contact with others is big. I join a group of neighbors every morning and walk at least a mile with my dog, a ritual that we've had for a few years. I walk a few more times during the day, such that the total mileage approximates 3-5 a day. It is great to be in the fresh air and I often have someone else from the neighborhood to keep me company. The exercise has been great for my body and my RSD.

I also rest a lot, and cry way too often. I didn't start crying about my RSD until I left work. And then I couldn't stop....

I am trying to engage in the mindfulness stress reduction program. WC gave me 10 sessions with a shrink and she started me on that. Read FMichael's posts on the subject.

I think that the time off has allowed me to most of all rest. I know that I could not have worked through the summer and the fall feeling the way I have felt. And I also know that I want to go back to work but I need treatment first. And I worked really hard to find the best doctors that I could get into and get treatment with as soon I took my LOA. I am motivated to get better. Hopefully this period of time off will just become a small percentage of the total of our working life.

I really hope that this message find you in decent spirits. Please feel free to PM if you have any questions. I truly believe in trying to find the very best doctors in the country to help you get better. Smilin, you can always call and see if there is a cancellation in Dr. S.'s office. They say that it happens a lot and you can often get in early. Vanna - if you are not with a really good doc that can offer you the more advance RSD treatments, I would advise you to start working on that. NEVER NEVER GIVE UP on getting better. The very, very best of luck to you!!

Sandy...
A question.. how were they able to diagnosis the branchial plexsis association to headaches and connect it to RSD?? I am learning a bunch tonight as I have been suffering from the migraine wake up headaches for a few years.. then hearing loss...much longer than my obvious rt. leg RSD.. now further progressed RSD every where including my hip, shoulder and jaw...... Seems you and I and Vanna all share the fight ignition .. nothing stopping us attitude.. I am impressed how strong I have been...and I am not a crier.. until lately...as with you...but I can relate how we had to let go of our hero status and hit that wall of exaustion... I understand this will be a process..a long process.. although the change in my pace has been an immediate benefit.. it's my usefulness along with the love of my livelyhood for 25 yrs. that I miss..along with my friends..I have an appt. with Dr. S in 3/2010.. the appt. has been chaged 2 times in order for me to see him sooner as my Dr. feels my RSD is moving very quickly and it is the most aggressive he has ever treated...I do like my Dr... he is very knowledgeable and sympathetic.

I send you both gentle hugs.. and hopes for a good rest tonight... thxs for caring..It helps a bunch!!:grouphug:

KS

Quote:

Originally Posted by keep smilin (Post 596857)

me feel loved.. Thank you!! As I have just read all of your passages and I am touched by the love and words you have all said.. I believe this feels like a greaving process.. I am typically an upbeat, happy person.. not a crier, least in front of people but this is tearing my heart out.. I can only compare this pain to when I loss my Dad and how much that hurt. I loved my work and best yet all of my friendships I developed there..It was my glue..
Sandy S. you are so correct in your wisdom, as I too think God is telling me to slow down now.. I have fought, I mean fought by literially draging my body around with the use of my cane each day ...for these 2+ years. And how bold of me to think I would not cave to RSD... But, now I am tired and my tank in coming up empty..
My favorite saying as people pass by each day and inquire about my condition has always been " I am fine, it's okay"... Today I want to say to each of you that it is still okay...sad but okay as I think we all have a path to follow..it's how we handlle the bumps and curves in the road is what really matters.. I can honestly say that I feel loved and so supported by you all here.. I thank you for caring about me and sharing my sadness. Even tho I have just crossed a bridge in my life due to my illness..this does not take away the concern and prayers I want to share for each of you.. Bittersweet but without RSD I would have never connected with such wonderful friends... Thank each and everyone of you for being my friend and sharing your love and support!:grouphug:

BTW.. I am scheduled in March of 2010 to see Dr. S in PA... Drexel for a ketamine treatment consult...

Hello

I just wanted to let you know I see Sschwartman.. What an amazing human beig, I have RSD for 25 years and it now has me in a wheelchair, unable to walk and riddled with pain. The letamine option is awesome but does require alot of thought as there are some in depth concerns. I have been all over the place, have done almost all treatments and this seemed to be the CURE. All i will say is it has been a blessing and priviledge to have met this man and know there is an option out there that needs to be considered, may you have a nice pain free day as i will keep you in my thoughts..
Lisa

Quote:

Originally Posted by keep smilin (Post 598271)

Hi there -

My RSD started in my shoulder - I was diagnosed with a torn rotator cuff tear after carrying a heavy workbag. Which likely did happen - I felt a rip in arm when I flung the bag in the back of my truck and they found it on the MRI. But it wasnt a really big one, and lots of people live forever with tears just like the one I had without any pain. Getson thinks the hauling and pulling and heaving of the work bag took a toll on the muscles and nerves in my chest cavity, which were injured but never treated. That's where the RSD started after really aggressive PT and excessive icing on the part of the orto's PT dept.

I don't know a lot yet about the brachial plexus. ASB Pete tells me its the equivalent of TOS. Getson told me to look it up online under Brachial Plexus injury and I'd find a lot of info. I've done some searches but haven't learned as much as I'd like. But I do know that if I use my arms for anything strenuous, expecially where there are vibrations - like raking leaves with a metal rake on a bumpy ground really hard - the next day is pure agony for my head. I can't move from the fetal position for hours, and it usually takes days before my head goes back to baseline (which is a steady state of pain at between 3 and 5).

Lidocaine infusions have chilled me out a bit. Can you aks for PCP to try them while you wait for Dr. S.

Good luck, Sandy

Funny but... Sandy S..

Quote:

Originally Posted by SandyRI (Post 598439)

Funny but..due to a car accident, I had TOS some 21 yrs. ago... Because of the TOS.. I had my first two bilaterial ribs removed... due to blood flow restriction.. AND during each surgery my thoraxic surgeon intentionally cut my sympatheic nerve on each side... guess to space restriction in my chest... He saw no other way..without any future repercussion..and I had no reason to question him.. he no longer practices dur to physical limititations/illness... Only the last few years did the heaches begin.. hearing loss and then my rt. leg is totally messed up with RSD and the rest of the story is a nightmare!!! Coincidence or not???

Have a restful night!!:confused:

SandyRI...
Thanks...And THANKS to everyone here!

Quote:

Originally Posted by lisarsd (Post 598302)

Dear Lisa,

IT was be awesome if you would tell us what the "in depth concerns" are, instead of just alluding to them. Please? Your message makes me wonder what is being hidden. what is the option out there that needs to be considered?"

Thanks XOXOXO Sandy