Hello Liz,

Well the good news is that you have certainly caught this early and as you know that does offer the best possibility of remission. Now you need a great team of doctors who can help treat you with remission in mind. It sounds a little confusing on who is treating/diagnosing etc., Who diagnosed you with RSD to begin with; was the surgeon or someone who this doctor referred you to? What type of RSD/CRPS do you have; is it a result of identifiable nerve damage? I'm not sure why the doctor stated you can't have RSD because you can have a conversation and don't need meds.. that is confusing because having a conversation or not is not diagnostic in any way regarding RSD/CRPS 1 or 2. Sounds like you need a doctor for your original wrist issues and then another who will treat the RSD/CRPS and they don't need to agree with each other because in all likely hood the surgeon who performed the surgery isn't qualified to treat or diagnose CRPS. I would make sure you have a good team in place.

What was the reason for getting and attorney at this juncture? Was it for the WC case or something related to RSD/CRPS? This can be a tricky place to be in if it was for the latter (at least at this juncture) and I would caution you on this. PM me if you have any questions about that.

Regarding Vitamin C and or magnesium or Epsom Salt baths - no they aren't likely to interact with other medications but always err on the side of caution and check with your pharmacist. If the lidoderm patches are helping keep using them up to 12 hours per day - they help more the longer you use them. You might also ask about Voltaren gel as this compliments the effectiveness of the lidoderm and can be used during the 12 hours off time. Are you in physical therapy?

Try not to think long term about this right now.. focus on healing right now and stay positive about your recovery as this will help get you to remission and worry about life with this will surely inhibit that.

I'm not familiar with WC cases regarding this so I am sorry I cannot comment on that end. I know it can be a struggle but being respectfully persistent with your treating doctors, employer & L&I case manager will be beneficial as you walk that path. Journal your daily activities, pain levels, medications and side effects will also help as you go through this.

Keep moving as best you can and try hard to get plenty of sleep - your body does it's healing when it is sleeping

Tessa

Tessa,
Sorry if it sounded so confusing i tend to jump subjects like that when i get upset. My original surgeon refused to say anything is wrong with me. Ive been diagnosed by two doctors who i saw with my private insurance, as well as a wc nuerologist and the wc pain management dr ive been sent to. My hand surgeon says theres no way i have it since I was able to function in a conversation as in I wasnt in debilitating pain and wasnt dripping sweat down my arm. That since I was able to do more than cry I couldnt possibly have rsd. ( which as far as I understand those are the symptoms of an extreme case...and not to mention does he not understand the strength a person can make themselves have when trying to reviece help?) I went to see the pain dr on monday and he gave me different meds to help including pain medicince and ones to make me able to sleep again. He also warned me that my hand surgeon refuses to admit that rsd exists and Im not the first one to come to him with these complanints of pain being ignored. yesterday when i saw my surgeon, he told me AGAIN ( even after FOUR drs diagnosing it) that I dont have rsd and that I need to see a pain dr who used to be HIS anesthesiologist because I dont need ANY medication, and that I didnt need to do anything except go back to work. That is why I called a lawyer , I was unsure of where I stood. As did I need to go see this new dr my hand surgeon was recommending, or could I choose to stay with who Ive seen as he is the first dr whos really helped me? She isnt getting involved, but she did talk to me on the phone for forty minutes telling me where I stand, what my options are now, and what authority my hand surgeon really has in which drs I go see ( turns out absolutely NONE at this point). I called one who from what it showed in my incessant googling (lol) specializes in rsd and wc and is highly regarded.
The original injury was from work, I do a job thats basically all repetitive motion. I thought I had carpal tunnel, so I claimed a wc case. When i went to see the surgeon, an mri showed that I had a torn ligament in my wrist. The surgery went well, and everything was going good until about a month and a half after, I started having this new EXTREME pain in my wrist. I told my surgeon, and he kept saying it was normal. The pain got worse and traveled up my arm gradually, and its now focused mainly in my elbow but goes all the way to my shouler, with the sensitivity and burning in my hand and recently in my forearm. The dr kept insisting I injured myself in my sleep, even going as far as saying my hand wasnt swollen and blue ( both the nurses I saw ten minutes before both were like OMG something is wrong look at your hand) which is when I decided I needed to be checked out by somebody else.
One dr insisted that he wanted to burn my nerves apart right away, which seemed like he was rushing right to the end. I didnt feel comfortable with that and havent been back to see him. No, no physical therapy has been started but I was shown a bunch of exercises to start trying to do at home and he did recommend to try to do as much as possible. Ive been trying to get up and do more stuff around the house using my arm, Its just been a struggle. My pain is managed if Im not using my arm but as soon as I start trying to get up and do stuff it comes roaring back which makes me just wanna go back to laying down and doing nothing.
Im going to go to the store today and get the vitamins and EPSOM salts and see how those help. I hope this post made a lot more sense lol. I just woke up so I'm completely clear headed and tried to explain myself the best. I guess Im just used to my friends n fam being sick of hearing it so I try to condense stuff down as much as possible.

Two months is early, very early. For that doctor to state that it's too late in the game to go into a remission is an idiot. Stay away from him. It took my wife several years to receive a diagnoses. Don't get jerked around by WC, do not let them play games with you because they will, fight for the treatment you absolutely need now. Get a lawyer.

besides finding the right combination of medications. I would highly advised finding a therapist! The one I worked with did hypnotherapy. No it doesn't make you cluck like a chicken or anything. But it would help center and reground some of my more anxiety type feelings with this condition. You wil have good days and bad, and yes lots of pain. Living with a chronic pain syndrome is very often depressing. And its not something that's "wrong" with you. Having chronic pain will depress anyone at some point. I have CRPS in my left arm so I know how frustrating it can be. I did (VERY gentle) physical therapy to help regain some range of motion. Also learning to adjust your daily life enough to work around your arm is key. And as long as you can do it WITHOUT causing more pain. Try to use the effected limb as much as possible. If you can't don't! However you muscle will start to atrophy and kinda lock up without using it to some degree. It is very hard to learn the balance. My physical therapist told me I needed to stop using it BEFORE it started to hurt more. A very tricky thing to learn trust me. Try and find a specialist in your area who has experience with CRPS and ask them the same things you are asking us.
I am soory to hear you have been diagnosed with this. It is a long hard road but you can find a way to live with it and still have a full life. Remember the more stressed you are the worse the pain will be too. Try to keep calm as much as possible and find a medical team who can work with you!

I am pretty much in the same situation as you...was wondering how you are now since this post is a couple months old and I haven't been on the website. Have you gotten any further? We can message privately if you would like.

Hi Liz

I'm sorry I didn't see your post before now. I am pretty new to CRPS too. Mine developed following wrist surgery in December 2012. I was very luck to have a knowledgeable surgeon. I saw him to have my cast removed six weeks after the surgery and he knew as soon as he saw my hand. I started physiotherapy almost immediately.

To start off with, they physio was nothing more than the therapist gently massaging and 'stretching' my fingers and wrist (though calling it stretching is, well, a bit of a stretch). I have had physiotherapy once a week since then. I have much more mobility now than I did then but I am certainly not at normal mobility levels. The pain is always there but it does fluctuate.

I also found that it spread to my entire arm pretty quickly. I try very hard to stay positive and keep going. I have to say, I haven't really dealt with the idea of having CRPS for the rest of my life. I suppose so far I'm coping with it by not looking too far into the future. I'm not sure that is the best way at all but it is the best I can do for now.

I will say that finding this board has been a great help to me. The people here are fantastic and are always willing to share their knowledge and experience. It seems a bit wrong (and a bit late) to say welcome...but, Welcome!

Kim

Keep a positive outloook. I know it sounds cliche and tripe but it does help. I went almost 10 yrs without a diagnosis until I went to a dr that had seen this before. Military and WC are very alike in that they will try their hardest to pass it off as something else or not as bad or all in your head. Been there done that got the tee shirt and whole outfit many times over. At this early stage you can go into remission and have a healthy normal life. Keep yourself from saying its hopeless.

If the doctor/medical person has a good experience of advising in this area, then he must know people who are dealing with this.
So tell him/her that you need to talk to these people.

You have to keep fighting this; at least I have to keep fighting it.

Two months is not too late. Generally the younger you are the longer you have but even older people sometimes go into complete remission up to a couple years. It seems as though the trick is learning to deal with it and everything that comes with it.

I was diagnosed 9 months ago ( my foot) accept the fact that you will probably go through a grieving process ( I did) but don't let yourself get caught up in it. tell yourself that you are strong, and that you can beat this. Stay as active as you can. Take vitamin c ( my DR prescribed 500mg twice daily) do your physical therapy, even at home while watching TV ( TV distracts you and you are able to do more repetitions) I even have used foot massage and pedicures. at first they were painful but it is getting better. The emotional benefit of it outweighs the discomfort a bit. If you can tolerate it try a full body massage, and a manicure. eat healthy ( it helps mentally and physically). Hang in there.