Hi, I was just diagnosed yesterday with "mild" crds. I had torn a ligament in my hand at wk back in Dec. After 6 wks in a cast and the rest of this time in a splint, pain worse and spread to my whole hand from just my thumb. It feels like my hand is being ripped apart and it burns. This is mild?! Anyway, I have some swelling, a bit of color change (red w/white lacey pattern sometimes) sometimes it is colder than my other hand but not always. The pain is worse when I try to move or use it and it's constant. I can't think, concentrate, sleep, I am irritable etc. I bet my kids are ready to run away . I am in OT and it seems to help. This is under wc. Anyway, pain magmt doc gave me a creme for my hand and ultram but suggested nerve blocks w/therapy immediately after, especially if no improvement in function in the next 2 wks. (I am in OT 3 x's a wk). I was just so stunned. I am on an emotional roller coaster I couldn't even think of questions to ask. There were things I wanted to say but didn't.

The wc nurse case mgr says that if meds don't wk we'll do nerve blocks and that will cure it...is that true? I feel like I am losing my mind. The Ultram makes me tired and maybe takes the edge off the pain, not sure I should take it during the day as I need to drive. Nerve blocks terrify me.

Hi StressedOut and Welcome to Neurotalk!!!

I understand your fears and the overwhelming feelings that you are dealing with. I have been fighting RSD/CRPS for about five (5) years.

If caught early and treated agressively, RSD/CRPS can go into remission but unfortunately at this time there is no cure.

It is important for you to know that no two of us with RSD/CRPS have the same symptoms and no two of us respond the same way to medicines, therapies, or treatments.

There is an immense amount of information on this forum so please roam around and read. This is what I did when I was first diagnosed. Anything that I found that was working for others I would print out and take to my doctor and ask if it were possible to try that medicine, therapy, and/or treatment.

Please feel free to ask any questions you may have!!! The people on this forum are WONDERFUL and VERY CARING!!!!

Gentle Hugs,

Abbie

I'm so sorry you've found your way here because of rsd. I am glad you're here though! Welcome!

Once you have rsd/crps, you have it for life. There is no cure despite what some try to say. You CAN go into remission though! :-) You've been diagnosed quickly which is the best thing.

They should not be waiting to see "if meds help", because they don't. You need to see a pain management doctor asap and begin nerve blocks right away! This is the best shot you have of getting your pain under control and getting remission, hopefully. Nerve blocks really are a simple procedure, only take a few minutes and most doctors "put you out" while it's done. :-) I was terrified too but it was a breeze! lol It's the best treatment besides physical therapy that can be done right now.

I know how overwhelming it is to try and absorb all the info. Whatever you do, don't use ice. You must keep moving your hand. It's a fine line to walk between overdoing it and ending up in a lot of pain and stopping before it goes too far. The worse thing is to "push through the pain" as some people will say. It doesn't help and could actually make things worse. If you try to protect the hand you could loose all range of motion and possibly have atrophy. This is why it's so important to keep moving. We all know how hard it is.

An idea is to keep a notebook of some sort handy for writing down questions and/or thoughts in. Forgetfulness is an issue we all deal with. It helps to do write it down and carry it with us so we can be sure we cover the things we need to with the doctor.

Ask all the questions you want. We are the "experts" after all! The most important thing I think is to remember we are all individuals, we react differently to meds and treatments, and no one can say for sure what might happen. We can give you our knowledge and experiences to help you along. I was grateful for it when I got it 6 years ago. I knew what might happen and knowledge is power!!



Karen

I totally agree here if rsd is in your hand try to use that hand to eat with...I know it sounds like it would all end up on the floor -sometimes it does but those movement will retrain your bran that this is how i move....start out simple. Find good doctors now. Find good pain doctors and you will be able to get through it. Somedays it will feel like you can't but, you can.If you ever have questions or need encouragement private message me! This site has helped me in so many ways!!!!!!!!!

Dear Stressed Out,

I am going to ditto what was said above - get a nerve block ASAP!!

I was referred to pain management in hokey-pokey RI for suspected RSD/CRPS after rotator cuff repair and ended up with full body RSD/CRPS when the proper protocol wasn't followed.

You may be fortunate enough that it is caught early and can be put into remission. Try to find a really good PM doc that has extensive experience with RSD that you can trust.

Wishing you the best of luck.

Sandy

Stessedout, Mine also started from a hand injury that is 18 years old. The doctors believe now that I had CRPS all this time & that a torn ligament & carpal tunnel surgery caused it to spread. You are very lucky to have been diagnosed so quickly. Even after the carpal tunnel surgery it took me a year to get a correct diagnosis. Making a chance at a remission almost impossible. My carpal tunnel surgery was three years ago this month. The people here are good people & have been in your shoes. Get a good pain management doctor & dive into therapy. Its your best chance at remission because as others have said there is no cure. Your hand sounds like mine & it doesnt sound mild. It sounds painful. This morning my hand is swollen & my fingers are ice cold. I dont have color changes this morning but I do have them. From what yours looks like to a purple color. I lived with that pain just in my hand for years without any doctors ever paying any attention to it. It wasnt until after the surgery three years ago when the pain was up my arm in my neck & shoulder that someone started to pay attention to what I was saying. I am so glad that didnt happen to you. Take care of yourself & we are here if you need us. Good luck.
Hugs, Denny

welcome stressedout i have found this forum a wonderful place for support and advice, i was dx like you early but the one thing they didnt do for me is put me in pt soon enough they waited three months i have rsd in my foot and leg so as a result of not useing it my toes and ankle are frozen they wont bend move nothing. go to ot as much as you can stand and use it, like the saying use it or lose it. the nerve blocks will help with pain and hopefully put you in remission like others have said be aggressive with your therapy. prayers are with you, michelle

Pain specialists here usually first try medication. If that doesn't do a thing, they switch to blocks and/or infusions and if that doesn't work there's the SCS.

There is no cure, it's been said. All they can do is try to treat it. Your best chance is early discovery, early diagnosis. In early stages, when your body hasn't been affected that long yet, treatment will have a better chance of working. You might possibly go into remission. Then again, not every treatment works for everybody. They need to find out what works for you. If nothing works, or if it doesn't work well enough, the RSD might even progress and continue to spread throughout the limb, and body (but try not to think about that).

It's true, once you have been affected, you will not get rid of it totally. Otherwise there would be a cure!

Try to focus on treatments suggested to you by your doctor.

Stay strong!!!

Thank you everybody, I am glad I can come here. This is a workers comp case and the nurse case mgr has already denied me the cream the dr wants me to try. It is specially mixed, i know it has keta/keto/lidacaine and some other things. He said it will help with the burning. Anybody have any experience with something like this?? Now I worry that they won't let me get the blocks. The Ultram/Tramadol helps a bit (pain is down to a 6 from 7) and it helps me get to sleep but not for the whole night. I am terrified of the blocks but know that i must try. Hope they will put me to sleep. I wish my husband understood more. He says he knowws I don't feel well but he isn't getting it. e turns it around to himself and says that his stomach is in knots etc. I just want to tell him to shut up and get over it. I need him to be there for me. How do you get through to family members???

Hi. I am sorry and understand the emotional rollercoaster and fears as well. It is normal. A few thoughts I have is to see if you can have a PM apt set and possibly to just go in and hear what the person has to say. You are not commiting but you can hear your options and at least you have something in case the pain is not helped with meds. Treatment of this asap is very key. As you go to doctors you will have questions and concerns and it is a good idea before the apt to write them down so you don't forget. Bring a paper and pen with you too. Also all test results and records you should bring to your apts. Can your husband go with you? I think you really need to tell him what you need and how to help. There are books and even support groups to go to inperson for family and suffers. Maybe you can print off info off the net to give hime to read. Please hang in there