I have always said these 2+ years since being diagnosised with my RSD that I would never let it control my life or change my life..Well after 25 years with the same company..I finalized my leaving yesterday due to my relentless RSD.. I believe one could say RSD did win.... Anyone have some uplifting advice and just a how do you do's..I sure could use them now... This is such sadness in a big way...

Hi Keepsmilin,

I don't think that RSD has won, sometimes we have to take a step back and look at what it is happening in our lives. Maybe, it is just time to get some rest, take some time and get this under control. Your body is going through something fierce right now and maybe you need to reduce your stress. Perhaps you will wake up tomorrow with a sense of relief that you have time to help your body heal and focus on new ways to find relief.
I know that maybe right now this doesn't make sense, but I believe God works in mysterious ways, maybe this is his way of telling you to slow down and take care of yourself.

Remember to keep Smilin!

Much love to you,
Sandy

First - let me start off by saying how very sorry I am. I was in the same place as you five and a half months ago - June 19th to be exact. I still plan to return to my job. I will NEVER give up trying to get better.

I am going to try to copy and paste what I wrote tonight in reply to another post. In short, it is critically important that you get to the very best RSD doctors in the very best medical centers ASAP. No matter how far you have to travel. In the long run it will be worth it. Don't waste your time on small time pain management docs or anesthesiologists that don't know what RSD is, or how to treat it, or what drugs to prescribe, or what procedures to try. You could end up messing yourself up for a long time, in a lot more pain than you need to be, and with your RSD spreading. I know because it all happened to me.

This is what I wrote (In the thread about it being cold in the Northeast):

Beg of Copy: [If you have a doc that is offering RFA then you need a NEW ONE!!

You are fortunate you are in NJ, there are better docs available within driving distance where you live than almost anywhere else. Yesterday my husband and I saw Dr. Philip Getson in Marlton, NJ (exit 4 off the Turnpike). He is AWESOME!! I waited a few months for the appt, needed to organize and submit the paperwork by myself. For me it was a 270 mile drive it each direction, since you live in northern NJ it would be much easier for you than that. You also have easy access to NYC. I have seen a really good doctor at St. Luke's/Roosevelt Hospital, I was able to get into his office for an appt within a month or so of calling. But again, my husband and I drove 160 miles each way to get there.

I obtained a list of doctors that offer ketamine from the RSDSA (Jim Broatch) and started calling the closest hospitals to RI until I found places that would take me.

The biggest disappointment for anyone that lives in New England is that the Beth Israel is not taking any new patients into their ketamine program. But, in addition to that, their doctors are hands down the meanest bunch I've come across in the 3 years since I've become sick. The report they issued regarding my diagnosis could almost be deemed fraudulent, in that they called my symptoms "myofascial pain syndrome," yet listed meds and other recommendations consistent with an RSD diagnosis....why they are screwing patients is beyond me. The administrative team at the hospital shut down the ketamine program to new patients because insurance companies were refusing to pay for it, so the doctors are retaliating by taking it out on the helpless patients??? In addition, they missed a key part of my problem that the docs in NYC and NJ found, so in the end they're not as good at detecting things as perhaps they could be.

Anyway - (pardon me for the rant, my experience at the BI was incredibly tramatic for me) - until I got out of New England and in front of the much better doctors in NYC and NJ I did not get a clear understanding of my RSD or a good analysis of my meds. I would urge you NOT to wait to get to the very best doctor, with the very best RSD credentials, that you can. Get the list of ketamine docs from the RSDSA and start calling. Not only do these guys know ketamine, but they know RSD. They can help figure out what's wrong with you, advise you on the best mix of medications, and help you determine what procedures (i.e. - blocks, infusions) will relieve your pain in the best manner possible. And in the end, hopefully you will become painfree ASAP.

I still have an appointment pending with Dr. Schwartzman in late June 2010. Dr. Getson, who works often with Dr. S, urged me to keep it. He said that you can never see too many specialists, or find out too many things, about your RSD.

If you have any questions, please let me know. XOXOX Sandy] End of Copy

Good luck to you. XOXOX Sandy

I am SO sorry. I just went through the same thing (not 25 years, though). I feel that the finality of ending your job is awakening. It means that this IS real. It means a loss of pride and self. It means a loss of control. I am hurting for you now; and I don't want YOU to hurt. It means that you are now unemployed in a VERY bad economy and must rely on someone other than yourself to maintain. It will all get much better, once you digest everything. As I lick my own wounds...Just please know that we are all here for you and understand. Remember, stress makes you flair more...

You can always do something even if it doesn't seem like much to most people. Get a hobby or do research. Volunteer. Help people. Try to enjoy what you do have and what you can do.

Don't give up. RSD can win a battle but it can't win the war without your help.

KS,
I've "lost" two business' that I "rebuilt" after buying them from my parents. I was around these bus, all my life!
And, I groomed my children, to take them over.
Mostly because of the RSD, and TBI, they are "lost" for now.
And, my children, for some reason, haven't spoken to me, although I raised them myself (that may be the problem!) for 5 years.
My son is so full of anger, "he wants me dead".

I'm NOT running a race with you, or saying, Hey, look at me, I got it worse!!
I'm sure, that I've got it great, in many, many ways.

I'd bet, that you do too.

Life is Not Stagnant!
Change IS the Only Constant!

Think, how UN happy you may have been? yada, yada, yada.

So, go with the change. For some of us, Stagnation is the sadness.


"Nothing Ever stays the same,
Blame your madness on Sorrow,
but,
Be Happy~!"
H.Thomasson.


Pete
asb

"Livin' AintSoBad, After All..."

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!

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

I feel your agony. I had the similar mindset that you have. I was going to keep working and not let this RSD destroy me. I dragged myself into work everyday, never missing a day because of it, and tried whole-heartedly to hide my suffering from everyone. I was not going to quit! I refused to quit! Then my boss of 13 years decided she had to "let me go" because of complaints by my co-workers who could no longer stand watching me try to get through the day.

The hardest thing (besides the 'where do I go from here?') for me was the loss of personal identity. For 19 years, I worked fulltime as a cosmetologist. I was at the top of my game; head Color-Consultant at a highly successful salon. I LOVED what I did, and was loved by many (my clients were my second family). Another reason I loved working was because ...even though it caused more pain, it was a DISTRACTION from the pain. I went from working with many people in a fast-paced environment to being at home, no contact with other people throughout the day and constantly boggled with RSD pain on my mind.

My suggestion to you is to not be surprised if it takes quite a bit of time for you to adjust to this transition in your life. The answers will come slowly to you (as to where you go from here) and you may not receive ALL the answers. For me, 2 years later, I'm still grieving that happy, upbeat hairstylist that I am no longer allowed to be. With this experience, I really do get the saying "the mind is willing, but the flesh is weak."

Best of luck to you and congrats to you for not giving up so easily. May your new path be abundant with self-fullfillment

Gentle Hugs Vanna

Dear Vanna....

Did you find a new path to make you feel..fulfilled?? How long did you work while fighting your RSD?? I just read your posting and it sounds much like you and I each fought the same battle.... Iam so sorry that you had to end your wonderful, happy career that way..a life you also loved!!! To your co-workers complaints... What the heck! I know many with whom I worked had not the slightest idea of our pain and what it does to a person... even for 1 hour... But my work was my glue..my second family.. It's only been 4 days and I am very sad and lonesome for my friends there... In my mind, RSD was never going to get between my body and my work.. my life... but after 2 + years.. it had to happen... As yourself, I literially dragged myself each and everyday..all day.. as yourself, not missing one day of work because of it either..I so appreciate your kind words and suggestions.. I will be patient and give it time to sink..and adjust... thru the tears.

gentle hugs back...

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!!