I guess I need to tell my story, what I remember of it and maybe that will help you understand me.

I had Carpal Tunnel surgey Feb 09. My recovery to say the least did not go as planned. After 8 weeks on pain meds and still no relief, I was placed with an Occupational therapist. I was in terrible pain which was blamed on scar tissue squeezing my median nerve, causing the blotchiness, swelling etc.

Everytime the therapist touched my hand and forearm I wanted to go through the roof. I was told though that it was just part of the scar tissue trying to break up and it would eventually go away.

At the beginning of Sept. I walked in to OT and I said the words that changed everything!!! "You know, I've been trying to describe my pain to my family and the only thing that I can come up with is, IT FEELS LIKE MY HAND IS SITTING ON A STOVE THAT IS TURNED ON HIGH!" Why oh why hadn't I said this before??? My OT sprung into action like she was fighting evil!

With-in two days she had talked to the doctor that performed my surgery, talked to a CRPS specialist (that happened to be her teacher) and talked to someone about a tens unit.

My OT said she thought I had it early on but she could not diagnose me however, once I made the statement about my hand and the stove she knew there was turning back for me and what she was doing was not going to help me.

After another surgery to release trigger thumb, many many stellate ganglion blocks, OT excercises, neurotin, cymbalta, amitriptyline, oxycodone, ketamine cream, tens unit and my glove, I sit here today with little relief! WHY?

Do we get better? Are we able to ever function without pain? Or do we try our best to tolerate the pain for what little time we can? I have all these procedures done and get a little relief for a few days, when does remission happen? Why am I going through all these shots if there is NO CURE? Why do people look at me like OH MY GOSH, you're not beter yet? How do I make people understand when I DON'T???

I wish I had an answer for you that's better. Few of us go into remission that's permanent,
and, for most of us, the rsd/crps can spread, and eventually go full body. I've had rsd, since '83, and for the first several years, it was limited to my spine, between my shoulders, and up my neck, causing severe headaches and arm pain, which was also diagnosed as Thoracic Outlet syndrome. That's all still there, but the RSD has spread to full body, and all that can be done (for me) so far, is "Manage" this bear the best I can.

We've got to keep moving, (especially where the RSD is).
Find what meds work the best, (I've been on a "cocktail" similar to yours, but I take methadone as the main pain killer.)
You must also recognize the psychological effects, and it's important that at least one of your doctors is a psych, of some sort, specializing in pain. At least until you've learned how to cope.

I hope someone here can give you some positive reinforcement. I'm sorry to say that for me, and most that I know, it continues to spread and rather than use the word "worsen", I'll say "change"....

Go to www.rsdsa.org, and if you can join that site and get their newsletter, and some brochures. This will assist you in explaining both to yourself, and other's what's going on.
You've damaged a nerve. Consider nerves to be like an electrical system with circuits and wires, and your brain as the controller. The nerve damage is a short circuit, which can spread around, and affect the controller (the brain). The end result is pain, changes in temperature, your autonomous nervous system "doesn't know what to do". For example, A cool breeze may cross you, and instead of your pores constricting, you may perspire. The opposite of what should happen. This may or may happen, depending on when it gets to the 'control' center. Your hand, or affected site, may become mottled and clammy, even sweaty. Odd perspiration and hair growth or loss may occur.

Everyone is different. Keep the Faith, and be sure you have the best doctors!

Wishing you the best.


Pete
asb

Asb-

Thanks for taking time to respond. My family has become less sympathetic to my CRPS I feel. My doctor had instructed me to use my arm as much as possible because he doesn't want muscle waste. I have been trying to not complain, do as much as possible etc. But with that comes "you must be better!" If they only knew that once they are gone, I am in the bed crying my eyes out because I have over done it. My husband argues the syndrome/disease issue. No one understands why nothing has fixed me, neither do I.

I was hoping by finding this site I would find answers but seeing that you are the only one to respond I am guessing everyone is pretty much in the same boat and don't have any answers.

I can understand your frustration cause like you have tried many things to be in very high pain still. I do know a girl who tried many procedures and meds for this and was in a horrible place with her rsd but then finally had a procedure that worked for her and is doing very well living life again. Everyone is different in response so what may work for you may not for me and that makes it even harder to treat. As for family I have some who are very unsupportive and actually blame me for this and I have some who do care so I try to focus on the ones who do care. Also to get support from others like through here. If you want an email buddy I am here. Could you find info on the internet to educate your family? Is your current doc who treats you have good knowledge of rsd? Could you go for another opinion? My last pain doc as I have seen a few I feel I made the most progress with because he looked outside the box. Sending thoughts and I wish I had more to offer. Try to hold to hope.

Oh gatorsmomma... I am sorryfor your RSD.. you will get more responses soon..We're a close nit group/family here who care a bunch about eachother...RSD is a bear...You will get many good tips and advice here with us..There is no cure, I am sorry and not everyone responds to the same intervention the same either..I for one can not take any pain meds so I am cold turkey RSD for 3 years, full body/internal..beginning due to a knee operation.. Never use cold anything on the affected area..be sure to read a ton and become educated...here and the RSDSA website..Due to it's rarity we seem to lack support by the Dr.s and ins. coverage for help but we try to help eachother thru this miserible illness... It is very important you have a knowledgeable anestesia or Pain management doctor..and if caught early enough it is best for interventions to help you... AND plz. get a conselor as you really need someone to speak with..You and your family as well as friends are all going thru this together but it affects you all differently..Many phases to go thru on a daily basis..Please..try to stay positive and lean on us..ask questions..swing..kick and most of all hold hope in your heart as life is still precious just our priorities get stacked a bit different.....

Nice to have you here with us but very sad you have RSD....

hugz, Kathy

Thank you Daniella and Kathy,

I truly appreciate your honesty. Today for me has been a bad day and I am sorry if messages bring anyone down.

I love my PM doctor. I have been to what I considered the best at Vanderbilt University and they did not help me like he has. He has at least provided some relief.

Yesterday we tried something new, peripheral nerve blocks. I had 3 injections near and at the elbow, into the median, ulnar and radial. My hand and forearm were numb for the most part of the day (which was nice), then about 8 pm I noticed that I had not had any spasms in my hand. I was very excited that finally something was working. I was wrong. I woke up at midnight with pain like before I even started the meds. I don't know what triggered it to be this bad again. Was it because the doctor had to touch my arm? Anyway, I should have never gotten my hopes up, I should know better by now.

I read this study done on RSD and peripheral nerve blocks and the results seemed so great on everyone. If only!

http://www.rsds.org/2/library/articl...Kanji_2010.pdf

Link to the study on the blocks.

There is quite a bit of information on this website.

Anyone newly diagnosed (which I'd categorize you as) with RSD should:


1. Be proactive about treatment, but do your research first.
2. Be optimistic that remission is a possibility, but accept that there is no set timetable for when that remission will occur.
3. Seek mental health resources for you and your husband.

Hi! I am so happy to meet you but so sad to meet you with RSD. This is really a life-changing disease and it is difficult to explain it to others. There is a good thread going that occurred earlier this year with some really good answers. My family does not understand but I have gotten my adult kids to read some of the posts on this board after I force fed them this link and guilted them into reading some of the posts. I too would urge you to find a good psychologist to work with, mine has really helped me a lot, and no they are not only there for "crazy people", they are there to help people like us who have difficult problems. I have had many therapies, injections and many surgeries on my arm(before the RSD diagnosis). I have atrophy in my left forearm and have to wear a wrist brace constantly- it is my "fashion" accessory. As to if we get better, we get different. I think that maybe God had a different plan for me than what I had for myself. I have learned to appreciate the good days, to cope through the bad days, and sleep through the horrific ones! Meanwhile, since I have been unable to work, I have almost attained my college degree, spent more time with my parents and kids, welcomed God more deeply into my life and become a more compassionate person. I am glad you have found this site, there are many wonderful angels here that will help you through this process. Your friend, Lisa

Thanks Lisa,

It is funny you mention "God's plan" as that is how I cope with my pain. My pain has definately made me more sympathetic to my mothers RA. My pain has allowed me to be home when my kids get off of the bus (even if I am in a fog, they are happy).

I have thought about getting help. I felt crazy before I was diagnosed, now I just feel hopeless at times and today was one of those days. I know there are things to be grateful for they just get lost in the pain sometimes.