new and scared
 

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,
:hug:
Abbie

:hug: 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. :hug: 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! :D 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!!

:hug::grouphug:

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...more ?'s
 

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

Hello,

I'm sorry you had a need for us, you'll be happy you found this site. You are living and emotional roller coaster so hold on tight :winky. We have all been there and after 8 years I still get on sometimes.

Keep in mind no two people have the same nervous system. That is why there is no cure and what works for one person may not work for another. It takes time but there are treatment options that really can help. Finding the medications that work for you may take time but it will be time well spent.
Talk to your doctor and do as much research as you can on your treatment options that are offered. Don't allow your life to be defined by your condition. Be an active participant in your care not a spectator.

It is hard on family memebers. They love you and see your hurting and don't know what to do to help. When my husband comments on how he feels I just respond with I understand pain completely. It's ok to get frustrated with people when they complain how they feel until they walk in the shoes of someone with RSD they have no idea how bad we feel. There is a website rsds.org and it is great source of information. Maybe your husband would take the time to read some of the information on this site.

Welcome to the site you'll be glad you checked us out.

Take care,
Sherrie:grouphug

Stressedout, I am sorry your WC case manager wont let you have the cream. I use one thats similiar & you have a good doctor if you got one so quickly. Mine is fantastic though it may be differnt from yours. I tried several different creams before my pharmacist actually came up with the one I use now for me. He got my dctor to approive it. Now one of my RSD friends across the country got her doc to give it to her too. I have had RSD 3 years. I understand the husband thing its frustrating. I still hear how my husband has arthritis in his shoulder or he works all day. Or whatever. I want to scream at him I would trade him in a minute. Live in my body for one day. It takes families awhile (especially spouses I think) to come to grips with this. So much changes or can change because of this. Are life is nothing of what it was or what we planned. Are son was just about out the door to college & we were only 36 years old. I got a book on RSD & there was a chapter in it for family members & I made my husband read it. It helped him have some idea of what I was dealing with. Gettting him to appointments if possible is another. My husband had to drive me 250 miles to a specialist & that was a real wake up call too. I wish you good luck & you are welcome to PM me anytime. we are here for you is you need us.
Hugs. Denny

PS I am sorry if there are errors I am having a hard time typing tonight

Dear Stressed out,
There are many of us that have no hubby support, you can't make him understand so you consintrate on YOU! It is very important not to stress over things for your health and he will come around or he won't. Mine sees I am in pain but does not know about what is going on and I finally had to let it go.
tjbird

Hi Stressedout,

I'm so sorry to hear that you dont have the support of all of your family members:hug:! I know how frustrating it is and I think it is something that we all have to deal with unfortunately.

I too have dealt with the family not understanding. My grandparents didn't get RSD at all and they wouldn't ask how I was or how I got on at the hospital appointments etc. I got VERY frustrated and felt like they didn't care about me or how I felt. It got to the point where my parents were getting frustrated also so my dad went round and had an argument with my grandparents and told them that I needed them now more than ever.

It took them a while to start understanding and I didn't go round for a few weeks. Eventually though, I decided that I would go round on a bad day so they saw how bad it can get. It was very hard for me to go round and they still didn't understand how ill I was feeling but I think they started understanding a bit more then. My grandad explained that he was sorry about how he treated me and that he didn't know what RSD was and didn't think he fully would.

The day after I plucked up the courage to go and see my grandparents, we got a phone call from my nanan saying that she thought my grandad had passed away. Unfortunately, she was correct. My grandad could be really frustrating at times and caused a lot of hurt and upset but let me tell you, I would much sooner have that then not see him at all! My grandad has been dead 5 months now and not a day goes by where I dont wish he was here. I miss him soooo much and wish I could just see him again and tell him how much I loved him. I'm in tears now writing this. My dad never got the chance to see my grandad before he died due to the argument that he had with him and for so long he blamed me for what happened. I felt guilty also because I felt as though it was my fault and that I was to blame.

I guess my point is, I know that family can be VERY frustrating and cause so much upset whilst they are here but it is only when something truly happens to them that you realise how important they are. Yes my grandad was very annoying at times and upset me but I would give anything to have him back here now and just to be able to see him for one final time. I loved him so much and it was only when he passed away that I realised how important he was to me.

Unfortunately, you can't get family to understand what you go through. I don't think anyone would fully understand how bad RSD is unless they have it themselves. I am SO lucky to have my mums support and she has helped me so much - I dont know what I would do without her.

If I could suggest anything to try and help your family understand, it would be to try and write something in simple terms about what RSD is and how it affects you. So many articles on the internet are in scientific terms and are hard to read. Maybe ask them to come to the hospital appointments with you and get your doctor to explain RSD to them.

I'm sorry if i'm rambling. I guess my point is to just make the most of your family because you dont know what is around the corner. Reach out to them and tell them how you are feeling but dont fall out with them. There is a fine balance between saying too much and not saying enough.

Take care of yourself and I hope your family start understanding more soon. If they dont though, dont waste precious energy over them! My dad doesn't understand what RSD is at all and I have basically given up on trying to explain to him. It really hurts me but there is no point in telling him if he refuses to understand. I think sometimes, family members hate to see us suffering so much and therefore play 'ostritch' and bury their heads under the sand and pretend it isn't happening. Thats not to excuse their attitude but might give you some insight into it. RSD affects the whole family unfortunately and it isn't easy for any of us.

Take care of yourself and if you need anything, please know that I am here for you! It took a lot for me to write that post so I hope it helped you and that I wasn't rambling too much!

Love and hugs,
Alison.

Hi stressedout,
I am truly sorry about your hand and RSD It's rough I know. My left hand is partially frozen permanently due to wrong diagnosis and getting therapy soon enough. Before I injured my hand while water skiing, i had frozen shoulder in one shoulder then the other. Got full use thru therapy. Wasn't diagnosed for 4 years after the hand injury. Flew to Drs. several states away. One minute and followed up with tests. Got started with therapy next day, but not soon enough. I can eat by myself now and button clothes and dress, but all that would have been impossible without therapy. What I want to say is DON'T let the case manager push you around. Your care at this early stage is critical. She has no right to go against your Drs. recommendation for the compounding cream. The cream will help a lot. I'd get an attorney to let them get the picture. Any hold up on your care because of SC fooling around is inexcusable! Your attorney will let them know how liable they will be for permanent injury because of slow treatment. Sorry to be so mean, but been around the legal-medical system way too long. My daughter is a court reporter and my mother died because of an incompetent DR.
This is a wonderful forum with lots of support. You could look up the national organization RSDSA and find a local support group. Where do you live? Just have to put your zip code down and the will give you the closest support group and a name and phone number. I just attended the annual meeting here inScottsdale, AZ Wonderful. I'll share more about it later. It's worth even going to the Cleveland Clinic, or Philadelphia. There realy are Drs. that specialize in the nerve blocks should you choose to have one. Some people do real well with them, and some get worse. I don't know if getting worse is because of the block or way it was given. I never did have one, because it was 4-5 years before getting diagnosed and it has spread full body. Please, ask lots of questions, write things down, our short term memory gives us problems. Just read read read like was suggested. Take care, and let us know how you are. We all care about you, loretta jewell

I am on Ultram ER 300 mg. daily; also hydrocodone(10/500 mg. x4 per day) and neurontin(2400 mg.). I am surprised the PM didn't prescribe neurontin or Lyrica for you, as that is the med that helps my "burn" calm down.
It is a roller coaster ride;however, you should feel free to contact your doc and share that you are still having intense pain and your doc hopefully will address your pain issues.

Hang in there, you have a great support system here on NeuroTalk.:grouphug:
Dew

Thanks Dew,
The Dr prescribed a cream for my hand that had alot of things in it he said would help the burn but workers comp won't pay for it. The Ultram is 50 mg every 6 hours and it helps but very little. I guess I should call, maybe he'll increase it. I feel a little better today, can only cry so much. Guess the taking charge and fighting is kicking in. My hand isn't as swollen or purple right now but by tonight it will be...gets worse by the end of the day. Is that typical? It still goes numb and cramps. I just can't get past the Dr saying it's "mild", doesn't feel mild.

Dear Stressed Out,

Please consider getting a lawyer to represent you. Not the guy on the back of the phone book. Check with your neighbors, friends, relatives, other lawyers that you respect, and find the best WC lawyer that you can. He may have the smallest ad in the phone book because he doesn't need to advertise. I am also a WC case with RSD (now full body). The insurance companies work for themselves, not you, and they will screw you over and over unless you have someone to help you. RSD is a lifetime thing. You are going to need help getting the meds, the physical therapy, the doctors and all the treatments that they recommend. Its all going to add up to a lot of money and the WC company is going to try to run all over you. Even with a lawyer I am stressed all the time trying to get what I need.

There is an enormous amount of medical info regarding RSD on the RSDSA.org website. At the beginning of my illness, I joined the association and they sent me some great info in the mail that I shared with my husband. It gave him a much better understanding of the syndrome. I believe that it is only $20 or $25 annually to join. I urge you to check it out.

I also feel much better in the morning than at night, and when the sun is out versus when it is rainy/snowy and cold.

I tried Ultram for a while - it didn't touch my pain. It may be time to find a doctor that is better versed in RSD if that is all he is going to offer you.

Good luck to you. Sandy

Things often get worse over the course of the day. It's just from having to use the limb and all. Frustrating as that is, it's very "normal". Including the numbness and cramping as well.

It often takes some trial and error to find the meds which will help with the pain, muscle spams and burning. I'm not sure upping your current med will help much. Would he consider giving you something else for the pain? I'm lucky to manage with vicodin 10mg 4 x's a day and baclofen for the spasms and jerking 10mg, 3 x's a day. I was on Lyrica but it made the numbness in my legs worse so I quit taking it after a year.

I was a work comp case so I know things will get rough for you. I know others have mentioned a getting a lawyer. I second that one!! It seems like once you're dx with rsd, wc gets nasty and the denying and delaying begin. Lawyers offer a free consultation. Take advantage of that to find a good one. I was lucky to find a great lawyer. He was the first one I talked to. I was even luckier because he knew what rsd was, what it would do or could do and had represented and was representing many other rsd'ers at the time. They get paid when you settle your case.

Hang in there! Research and be your own advocate and keep that fighting spirit!!

:hug:

Karen

what can I expect?
 

I broke down and paid for the gel the pm dr. wants me to try on my hand for the burning. Birhday gift to my self. Hope it helps. I also told them I will try the blocks. Waiting on approval now I guess.I am scared though. I hear some say they are painful and don't work and others say the opposite. What can I expect? Also, how long will I be in OT therapy? Don't they stop that at some point? It helps alot. I guess I am just trying to see the road I am headed down. Since it is a wc case won't they stop everything at some point? Then what?I got up this morning and although the pain was still there the swelling and color weren't bad but as the day goes on it's getting worse. The dr seems so sure the blocks will stop this, is he just trying to be positive or do I really have a chance? I am getting more numbness and tingling and now I get a tremor when I try to do my excersises. I am so afraid to stop moving it, when I do it gets tight or cramps. I haven't gotten a lawyer and have just been hesitant, I do have good dr's but if this doesn't go away, who will pay for treatments?

I agree with SandyRI about getting a good wc atty.

wc is a different animal when it comes to getting treatment and good care.
plus you have to think of your future and possible lost income from this injury. the possible spreading.....:(

if you are still working now don't talk about your injury to anyone at work, esp not management or HR dept. They are involved with WC to minimize all costs to the employer and the wc ins co.
coworkers will talk too so mums the word. just better that way. no details about the claim at all.

yes at some point wc will decide to deny, delay or close the claim.

If you haven't read on our WC forum that might be a good idea and there are info links in the stickys there too.

Workers Comp forum -
http://neurotalk.psychcentral.com/forum30.html
and since wc is a state thing read up on your state website about the rules and such.
unfortunately it is more complicated than the personal/private medical ins route.

But if your injury caused the RSD and you have good documentation, good drs, and the history of it all you should be ok -and a good caring assertive lawyer too.

I am not currently working right now because of this injury(happened on the job). So I saw the pm dr the other day and he says it is "presenting as mild crps".Is that a diagnosis or not? The nurse case mgr is in the room. She makes me nervous just being there so I forget to tell him new things happening and questions I have. I don't think he understands how much pain I go through?. He gave me ultram that just barely touches the pain so I haven't taken it unless it gets real bad, and the compound gel helps the burn but wc wouldn't pay for it. I pd for it.
Do I have a right to ask the nurse case mgr to wait outside?
Pm dr says there is nothing more he can do for me except the nerve blocks (3 to 6 over a 3 wk period)which he says are totally elective. Huh?! I told him I didn't see any other choice then. He wants me to go back and talk to the hand specialist this wk and decide from there. I am just so frustrated, confused, scared etc. He did recomend a psychologist for relaxation techniques but I haven't heard from wc, I have a feeling they will deny that. So to top it off now, I am having some pain up my forearm from my hand. The therapist is frustrated too, nothing helps and I am not getting any further. The moist heat does help the most.
I am at a point where I just want the blocks done so I have some chance fighting this thing. Why talk to the hand specialist? Why haven't other meds been entertained...not that I like taking anything. I am one of those people that will suffer through a headache (I'd welcome that pain in exchange for this) rather than take something but I can't sleep or concentrate. I am losing weight now too, I lose track sometimes and then realize I haven't eaten all day. After the other day I have started writing down my pain. When I see the hand dr this wk I am going to try to give it to him and see if I can get him to understand.
What can I expect if they do the blocks? The pain is getting worse I just want my life back, I can't do the things I enjoy doing.

First off try to realize that the stress is part and parcel of the RSD. Try to stay calm. Of course you won't be wholly successfull.

The block often work if done early. You have about a two year window before the chances for a remission start decreasing. I had no pain from any of the blocks but some did seem unnecessary. I did get a slight RSD spread to one of the injection sites but it's about the least of my problems.

Do everything you can to get rid of this and try to remember it's not the end of the world if you can't. Hang in there and fight it.

Best of luck.

I am currently in a WC battle,myself. The moment your WC case mgr. said "no" to the doctor's script for that pain cream..is the alarm to find a good WC atty.

They don't get paid unless you win, and they will watch over your interests as it is their interest,too.

I tried to be nice, thinking the WC mgr. was looking out for me, but WC is only out for WC. They will attempt to force you back to work before you are ready..and then they are happy. Another case is closed, they save $$$.

My injury information is stated in my signature. If you need any assistance or someone to vent too..just reach out. You are not alone.

:grouphug:
Dew

I am sorry. I can't imagine how stressful WC is on top of this. It is hard enough to get good care without extra barriers. I know you are fearful to say or not say something in fear it will effect your treatment. I still encourage you to speak up and ask your questions. I also think you need some attorney too because that way they may be less likely to brush you off. When I first starting seeing docs I was very timid and spoke up little. Now I am way different. I come in with my list of ?'s and don't let them make me rushed. Hang in there and also it can take awhile to find the right meds. I have been on so many different through this and it is furstrating but I think part of the process

You absolutely have the right to ask them to wait outside. They can speak to the doctor after you have finished your visit. My fiance' had a nurse case mgr. who came to his visits for awhile. Once he said to her that he felt more comfortable with her waiting outside, she never came to another appointment. But yes, I would definitely tell her that you would rather her not be in the room. There is nothing she can do but document it.
good luck!

Stressed,
A good hand doc is a good thing.
They're great at diagnosing TOS, and other things like ulnar(sp) nerve and different nerve entrapments, and if you're being sent by your doc, by all means go!
It'll do you good!

I wish you only the best!

Pete
asb