Hi! I'm a newbie here!
 

Hi! My name is TJ diagnosed with RSD about 5 months ago. Looking for the support and encouragement I think only other RSDer's can! Thanks to all here. Reading your stories, insights and suggestions have been a real inspiration too me. I was sooooooooooooooooo ready to just give up! You have all recharged my soul. Again thank you all!:grouphug:

Dear TJ,

Don't EVER, EVER, EVER give up.

It is hard at times, especially for those of us that are WC victims. I hurt myself carrying a heavy workbag at work because the (much younger) woman I was working with that day was pregnant and I didin't want her to carry anything - I tore my rotator cuff. That was a little over 3 years ago and my life has never been the same!! I am waiting on approval from the RI WC courts for ketamine infusions (since I am fairly certain that the evil souls at the Hartford who control my case have already denied the petition from my attorney). Next week I am traveling to southern NJ to meet with Dr. Philip Getson, who works with Dr. S of Drexel University and is reputed to be absolutely wonderful. It seems like I have been waiting FOREVER for this appt, but in reallity its only been a few months.

Please take care and keep in touch, that is what this board is for. We are all here for each other. Tell us more about yourself....

XOXOX Sandy

Tj hi
 

Hi TJ, and welcome, I am sorry to hear that you have RSD but am glad that you have found the site and hope that you will find comfort and answers here. Take care, cz

Tj hi
 

Hi TJ, and welcome, I am sorry to hear that you have RSD but am glad that you have found the site and hope that you will find comfort and answers here. Take care, cz

Thank You!
 

Hi tjack! and welcome! I joined a few months ago and found this to be my home. Everyone is SO supportive and informed. Grammar doesn't really matter, nor does proper "community" talk. I have learned more since this I joined than I have learned from my collection of doctors, etc. Please feel welcome here. I'm glad to meet you, even though I would rather meet you under better circumstances. (sp?) Have a good night.

Hi TJ!
Do you know what caused you to have a blood clot? Are you on coumadin now to treat it? I had massive pulmonary emboli four years ago and have had two DVTs since then. I'll be on coumadin for the rest of my life. But part of that is due to the fact that my doctors figured out that I have an underlying clotting disorder. It was actually caused by an experimental medication that I was on for RSD- lenalenamide, which was not so kind to my liver. The moral of the story is that you should have a full panel run on all of your clotting factors. That way you can know if it is likely to happen again or if it is a one time thing.

Don't give up! Things can get bad, but there is always something out there that will make you smile. I am a firm believer in taking care of the mental as well as the physical, and am a big proponent of mindfulness and meditation. I have been on the brink of wanting everything to just end before, and meditating helps me to not be as stressed about everything. Check out this site. It's the UCSD Center for Mindfulness, and you can download guided meditations and "assignments" that teach you how to be less stressed out.

http://mindfulness.ucsd.edu/mbsr.htm

Hope this helps a bit!

Lynns

Welcome aboard TJack !

I second Lynns' recommendation for the mindfulness website - I have that website saved under my "favorites' and try to use one of the guided meditations everyday. U Mass also has a website for mindfulness, after I spent some time in there I links to support groups in every state:

http://www.umassmed.edu/Content.aspx...d&itemid=41254

Good luck to you. XOXOX Sandy

Ooops-

Sandy, I just saw this after recommending the UCSD program to you on another thread. Oh well. Now you know about it twice. And I learned something too!

Lynns :eek:

Your best chance to kick this thing is in the first couple years so be sure to get good treatment now.

Hi Lynns,

Thank you so much for the suggestion for the minefulness link . Definately something I could use.
At this point not sure what caused the clot, but my doctor is setting an apointment for some test to check my clotting factors and also for some nerve test. I have also developed constant numbness in the right foot and intermittent numbness, spasms and electrical zaps (kind of like bee stings) thru out my body along with the burning pain.The limited range of motion, swelling, and burning pain, I have had since my accident Oct 14, 2004. I was a pedestrian crossing in a cross walk hit by a car. I was thrown quite a distance shattering my left shoulder, and severe knee/leg injuries. Had already been having some problems with left leg swelling and severe pain before accident after a 2003 neck surgery to repair collased C5,6 & 7 disks in my neck. But getting hit by the car really did me in all over. It wasn't until recently upon seeking a knee replacement that I was diagnosed by the orthopedic surgeon with CRPS Type 1, post-laminectomy syndrome, osteoarthritis, and adhesive capsulitis. He took one look at my severly swollen and purple blotched left leg along with MRI of both knees and told me that I didn't need a knee replacement it would not help, he told me that I had this incurrable disorder called RSD/CRPS and that unfortunately it I had gone undiagnosed for too long for them to offer me anything but pain management and PT. They say a nerve stimulator would not help me at this point. So I am on time released Morophine 10 mg every 6 hrs, Gabapenten 2400 mg per day, 600 mg Ibuprofen every 4 hrs. I insisted on trying TENS unit which I use 4-6 hrs a day, and I take Epsom Salt warm water soaks 3 x's a day. This regime has brought my pain levels down from 8-10 average to a 4-5 average. They say I need a wheel chair but can't afford one and I am not ready to give up to that yet anyway. Walking is difficult and painful but I use a cane for support just have to limit it to very short distances at a time. I try to keep positive but admit sometimes it's hard to do.
My battle plan for now is to gain as much knowlege about this disease as I can and try whatever seems logical. Most of the time I try to remain positive but there are those moments of discouragement & defeat, I just try not to stay there too long.
Anyway sorry for writing a book just really wanted to say thank you.

TJ

No worries TJ!

When you say nerve stimulator, do you mean a spinal cord stimulator? Because a TENS unit IS a nerve stimulator- it stands for transcutaneous electronic nerve stimulation. And if that works for you, it can be a good indicator that something like a SCS would work for you- it is exactly the same technology except that the SCS is implanted inside of your spine. Hopefully that will give you a bit of hope!

Have all of your clotting factors checked out, for sure, if you are having clots- they can kill you dead really easily. My big goal of anticoagulant therapy is to prevent a stroke- that possibility scares the crap out of me. But if I take my meds the possibility is pretty remote.

And I'm glad that the mindfulness stuff seemed interesting to you- I truly believe that taking care of your state of mind is just as important as the physical part of things.

Hope this helps a bit!
Lynns