I want to start out by saying that I am very sorry for all that you are going through. You have had an incredibly tough time and I know what you are going through because...well...your story sounds a LOT like mine.

I know it is scary and I know it's a lot to take in right now. You've been bounced around a lot, you want your life to be normal again but it's not, you've got the stress of dealing with work comp and a nurse case manager and work...all on top of this horrible pain that you can't seem to get under control. It's a lot to deal with.

I wish I had some magical words of wisdom that would change your life...but I don't. All I can do is give you advice based on my OWN experience which may or may not be helpful to you...though I hope sincerely that it is.

1. Get an attorney to help you with work comp if you do not already have one. Seriously...this is important. I don't know where you live, but work comp laws are different in every state and you need someone who knows the laws is your state to back you up. Work comp attorneys do not get paid out of your pocket...they get a percentage of your eventual settlement or award amount from work comp which will be SIGNIFICANTLY higher if you have an attorney than without one...so you are losing nothing and gaining everything. You CANNOT TRUST WORK COMP...EVER. I hate that this is the world we live in but it is. They do not care about you...no matter what they say...and your health and well being will suffer even more than it already has because of them. An example of this...you are not able to physically or mentally handle work right now which your doctor agrees with because they took you off...only the nurse case manager convinced them otherwise. I don't know the laws where you are but here in IL I know that the nurse case manager CANNOT talk to your doctor if you don't want them to...PERIOD. The only access they have is to your medical file and notes...unless you give them more access. I didn't know this until I got a lawyer and WORK COMP most certainly didn't let me know my rights. And here was this pushy nurse invading MY medical appointments and INTERFERING with MY medical care to my detriment...and I didn't know my rights. GET A LAWYER.

2. If you are still wearing a brace...stop. Immobilization is the worst thing for CRPS. If you are using any ice in the treatment of your CRPS...stop it now. What you need to do is find the things that give you relief...even slight relief...and use those to your advantage. Also learn what triggers the pain (cold, touch, air movements, etc) and try to avoid those things.

3. Physical therapy is important and you should do it EVERY day. If your physical therapist has not given you exercises to do at home every day then ask for some. You need to move every day. However...and here is the difficult thing...you have to move and do exercises that are not too hard on your CRPS. It's going to hurt but you should never push yourself so far that you are unable to function afterwards. There is a balance that you will need to find between moving and resting. This is a SLOW process and it may be months before you see a noticeable difference in the pain or function...but it will come. BTW...side note...work comp will HATE this and is one of many reasons why you do not want them making medical decisions for you...those should be left up to you and your doctor.

4. Back to work comp...do NOT settle or even think about settlements until you are 100% better or at least back to life as normal as it will ever be for you. In fact, I would say generally you should think of settlements as a very bad thing for you period and you should not even think about them for several years until your doctor has said you are as good as you will ever get...and if you still need medical treatment in that state then you shouldn't settle. Your lawyer SHOULD explain all of this to you...but just as there are bad/corrupt doctors out there, there are also bad/corrupt lawyers out there. If you see one who says anything about a specific amount you should settle for while you are choosing one...walk away. Your HEALTH and WELL BEING should come first and any discussions about settlements or awards should come long after those two things are taken care of.

5. Don't trust anyone at work. Your words and comments will be taken out of context and used against you if they can. Don't let anyone provoke you into quitting and don't let yourself get put into any situation where you can be fired. My employer tried to bully me and were awful to me...but I never gave in. I learned what my rights were, kept a level head, and tried to keep my focus on GETTING BETTER. That's where your focus needs to be right now and just remember that once you GET better then you can go back to work and be focused on work things. Right now you won't do yourself or work any good by trying to push too far too fast.

6. Make sure...before you make any decisions about treatment options...that you have researched the options and know both the possible good and bad consequences of said treatment. If you will not be able to handle the worst case scenario when weighed against the possible benefits...then don't do it. You will be desperate (you already are) and you will pin all your hopes on a treatment the doctor says might take your pain away...and then if things go wrong or don't work out you will be devastated and possibly in much worse condition. I'm not saying you shouldn't take risks...but whatever you do make sure you do it with eyes wide open. Ask hard questions both of the doctors and yourself and make sure YOU are being 100% honest with yourself and your doctors about how you feel about a particular procedure or treatment.

7. Ask a lot of questions. Ask them here, ask them to your doctor, ask them to yourself and seek out the answers. You need to be the most informed person when it comes to your CRPS and treatment. You will run into many people along the way who just don't get it. These may be people in work comp, they may be people at work, they may be friends and family...they may EVEN be doctors. You have to be the one who knows your CRPS better than any of them and protect yourself from people and situations who will only make you worse. I miss the blind faith I used to have in doctors...but that has gone away after many bad experiences with people who not only couldn't help me but also made me worse. Stand up for yourself and don't be a victim if you can help it (most times we can't...but the more I learned the better prepared I was to avoid people who would only make me worse).

The truth is...and I hate to say this or to scare you...but the pain might not get better. It might get worse. You may or may not find medications that help you with the pain. What then? Are you going to continue to FIGHT to take back this life that is slipping away from you or are you just going to give up and let it go? I HIGHLY recommend fighting because despite the pain...you CAN fight to have a more normal life. You are NOT your CRPS...you are YOU and you HAVE CRPS.

It sucks that I am in pain all day every day. It sucks that there are many things I used to be able to do that I can't do anymore. It sucks that I have to convince myself every day that it is worth getting up and pushing through that pain...but it IS worth it. I was at a point where I was in a wheelchair and couldn't stand or walk anymore (obviously wasn't able to work in that state either). But I fought through it. I am now walking (with a walker...but it's still walking) and I am now back to work 50+ hours a week in a job where I am on my feet all day (that I loved before I got hurt and still love now). I have had to make HUGE adjustments...but all the important things are still there in my life.

There is a light at the end of the tunnel even IF the pain doesn't go away (and I hope it does...you should keep trying for that)...you just have to make up your mind to FIGHT for it. You have to make up your mind each and every day that you are GOING to do this...that you are going to do the physical therapy...that you are going to keep searching for medical treatment...that you are going to do whatever it takes to fight this monster that is CRPS and take your life back.

It will be slow and it will not be easy...but you'll make it if you keep your eyes focused on the end goal.

I'm sorry that there is no magical pill or procedure that will just make you better. Getting "better" is a real struggle that just takes time. You have to work at it to find those things that make you feel better and those things that make you feel worse (so you can avoid them). The hardest part can be the balancing act between things you want to do, things you can't do, things that hurt to do, and things that you NEED to do. You will get there...it is not hopeless even if it feels that way sometimes.

Take care of yourself. Sorry for the long post...I don't mean to sound so preachy. These are just my own thoughts and opinions based on my own experiences. I hope at least some of the advice can help you in this journey. I don't like to hear of anyone suffering with this condition.

Hi VividDC, I feel for you so much, this is a cruel cruel condition and it does indeed mangle your entire life....BUT as catra says, you can get some stuff back again, you can adapt other bits to get around some of your new limitations, and believe it or not - you can enjoy your life again. Not quite as much as you did perhaps and not in the way you had dreamed and planned, but it can happen.

Catra gave you excellent advice, I won't replicate it if I can help it lol!

One thing I didn't notice in your post or Catra's was any mention of Epsom salts. They are surprisingly good at helping with CRPS burning pain. Get some unperfumed salts (Internet or good chemist) and use them in a warm (not hot) bath. Also, I personally find them best wrapped in some plain linen dampened with ordinary tap water and placed on the burning area. It roughly works by blocking the calcium channel pain receptors I seem to recall (sorry if complete garbage lol). Whatever, they do help so give them a try

I totally get your feelings of loss and grief, frustration, sadness and anger at the whole crazy roller coaster. I have just started my third year with this (mine started after a simple knee arthroscopy) and I am only just feeling as though I have any kind of control for periods of time. I'm not back at work, I had to leave my job because it was too physical and for two years I could hardly walk ten yards without help, but I've started working for myself and controlling my own hours. I can't earn what I used to though, and I'm very aware of how lucky I am that my husband works full time.

I also sleep with my leg out of the covers, and I put a spare pillow at the end of the bed under the foot of the quilt so that it raises the end off my feet. My CRPS spread from my knee to both feet, my whole left leg, and my left arm as well now. But I've been very gradually increasing my activity levels from very basic exercises, to more walking etc. in the last two months I've ditched my wheelchair and crutches, and today I actually drove myself to work (only a couple of hours) and back, and did a small food shop alone. Amazing, I wouldn't have believed it 6 months ago. Felt great.

I'm not trying to show off, I'm very aware that my recent progress could slide backwards quickly, but I'm fighting to keep what I've found. I'm not quite sure how I've got here to be honest - but all you can do is keep fighting and trying to keep bits of your life from disappearing completely. Every aspect of my life has been affected negatively, my relationships with everyone from my husband and children to friends and close family. No one but another sufferer can 'get' the true awful reality of this thing. The pain and psychological scarring go very deep, but I do believe that you can find some calm amid the storm, but it takes a long time, and even so, I bet we all still have days where the despair and fear just get you anyway.

I suppose I'm trying to say that all you can do is fight and keep learning about the condition and your body, stuff you can do, stuff you can't now... But don't ever give up because after two years of wondering if there was going to ever be a point again, I am finding some relief from the worst of the pain and disability.

I do so hope you can find some real help and peace with this, and find your way through. You are obviously so strong to get this far and deal with everything you have, so be proud of what you are doing every day - because on here we do understand how hard just getting out of bed is.

Good luck and I hope you have a better day tomorrow, and a bit better every day after. You deserve a break.

Bram

Thank you so much for this advice, it is really helpful. I live in North Carolina and NCMs are allowed by law to talk to your doctor, with you also present, after the appointment, so there was really no avoiding what happened last appointment. I have spoken to a few lawyers in the past at the advice of others (mainly co-workers and a family member), but they all told me they don't think I need legal representation at this point. I think I do now, so I will make some calls tomorrow. I've been keeping a journal since February at the advice of a friend, so I've been somewhat preparing for an attorney should this keep getting worse, which it is.

...about the part of your reply that I quoted, are you sure about stopping wearing the brace? My PT mentioned he wants to try to get me out of it, but said I should keep wearing when needed. I can walk short distances around my apartment CAREFULLY without it if not in too much pain, and in my apartment without it, but my balance still feels off and my right ankle is soooo weak. Whenever I have to go somewhere that's not right around the house, I usually put on my brace and have to walk with a cane if it's not a short distance or if the pain is already too intense. It's VERY sensitive to touch and air movements, I haven't experimented much with hot-cold except for the desensitization at PT, the cold part always hurts tremendously. And I do have exercises to do at home and am able to do them for the most part, it's quite rare that I'm completely bedridden but it's happened a few days lately.

Thanks again, I'm a very diligent person when it comes to research and my recovery so if anyone is going to beat this CRPS it's me, but it's definitely hard to keep my spirits up when I never seem to get a break anymore. I can already tell joining this forum was a good move.

I agree with stopping immobilisation - not using the affected limb is a definite no-go for CRPS as it makes the pain worse not better.

BUT if your ankle is still feeling very weak, and you are using it for support, then I wouldn't advocate just abandoning it. The last thing you need is another injury! I would say that if you are going out somewhere or just need to get things done, then wear the brace - but as soon as you get home again, take it off and (if you can) do some gentle rotation and flexing of that ankle on and off as often as you can during the day. Little and often being our watchwords here lol That way you keep the support for when you need it, but get that ankle joint moving to counteract the pain and stiffness with the CRPS.

Leaving the support off suddenly and completely with an already weak joint might lead to a mishap. Try to get a balance between support when you need it, and freedom of movement for that ankle when you can. You can gently try walking on it with something to hold on to, but if it hurts too much then just go for the non-wb movements to start with.

Talk to your physio if you have any concerns - sounds like she knows the brace needs to come off, which is the important thing in the long-run. Getting there needs a careful approach....

Good luck,

Bram.

I am sure about the brace...especially if it's a stiff on that really immobilizes. If it's really weak then you may need some support...so maybe try a flexible fabric one that allows SOME movement but also provides some support. Even better though (in my opinion) would be to use crutches or a walker for support to give your ankle the freedom to move.

I went through (after my initial injury which was a sprain after accidentally hitting a dock plate at work) having an air cast, a gel cast, and an immobilizing boot. I will tell you that I was fooled into thinking these helped me because I was able to walk a bit more and pain was slightly less...but I kept getting worse. Immobilizing (even if it immediately feels like it is helping the pain) actually makes the pain much worse over time, meaning you can use it less, which means the pain gets even worse, and so on. It's a snowball effect and is likely why you are feeling it is so weak now.

Obviously you should discuss anything with your doctors first as I don't know your whole medical history...but as soon as I was diagnosed with CRPS the doctor told me to stop wearing the immobilizing boot immediately, during that appointment, and never to put it on again.

I have a small fabric brace that I will wear from time to time that serves two purposes:

1. It protects my ankle from air movements and cold if I want to wear shorts or something where it is not covered by the pant legs.

2. If I know I will be walking on uneven ground (like spending time outdoors) then I put it on to protect me from rolling it bad or having another injury.

Bottom line...immobilization equals bad news. IF you have to wear the brace I would literally ONLY use it when walking, take it off when sitting or for physical therapy, make sure you have lots of sitting exercises to do at home from your physical therapist. This will be key to getting you moving even when you can't do standing/walking exercises.

Also...have you tried ultrasound or stim at physical therapy? One thing that helped me tremendously when I did the outpatient physical therapy was to have ultrasound treatment at the beginning of the session and stim with HEAT at the end. I usually left in better shape than when I went in. Now I have an ultrasound unit at home that helps as well as a portable TENS unit I can use to help the pain now. These don't help everyone but if they have it at your physical therapist's then it might be worth trying. Remember to stay away from ICE...this is very important. Heat doesn't help everyone but it helps most...ice almost always causes much worse pain and can even lead to spread.

Keep asking questions...this site has saved me so many times I cannot even count. Don't know what I would do without the people here...they help keep me sane.

This is the exact brace I use: ** - it's not very stiff and I don't wear it tight, but it does help keep my ankle from rolling over on uneven surfaces. I will talk to my doctor about it.

I've tried stim at PT a few times and it didn't bring noticeable relief. I'll ask about ultrasound today. They have been doing desensitization with hot then cold, hot for 3 min, cold for 1 min, like super cold. From what I gather you are saying this is not a good idea? It hurts really bad when the cold is put on. I will ask him about this today as I have an appointment in 3 hours.

I mentioned this in the original post, I have this vein-like purple line going up the front of my right lower-leg toward my knee that has only shown up in the past few months. I don't have it on the other leg. It doesn't look like a normal vein and it's pretty much the same color as the CRPS area. The hair on and around it is gone. It doesn't have the same hyper-sensitivity of the ankle area. Any idea what this is? Is it spreading? I will try to upload some pictures later.

O...M...G... as far as I understand it, hot and cold contrast therapy is STONE AGE thinking as far as CRPS goes. You need them to stop that straight away. It used to be considered a good therapy to get your skin used to feeling temperatures more normally - but the extremes of it are bad bad bad long-term, and it is not recommended now (it can even cause spread). The clue is the bad pain with the cold - with CRPS, anything that causes a bad spike in pain must be avoided, from intensive physio to super-cold water...

That vein thing sounds weird, I can understand you being worried about it, especially if the hair around it has gone, as with the other affected areas. All you can do is ask your doc and physio what they think, and take it from there.

Good luck with your appointment, I hope it goes well and they can come up with some new treatments for you!

Bram.

Yes...if it were me I would stop the hot and cold contrast therapy IMMEDIATELY.

Desensitization therapy can help tremendously...but it can't be done with cold things. You need to normalize the sensation which can be very painful but does not cause the long term harm that ice/cold can. Proper desensitization is about exposing you to different textures and stuff like that until it normalizes the sensation (or at least makes it more bearable). It took a few months of it to get me wearing more normal clothes (and on bad days I can't stand anything touching me)...but that was worth the pain for the normalcy. Not everyone will agree on that.

But the ice/cold water thing...stop doing it.

My first visit to my outpatient physical therapist (shortly after I was finally diagnosed) she used stim and ICE after the first appointment which was horrifying. I did some research and when I went back next time we did stim with HEAT and that was very helpful in lowering my pain levels.

I am lucky to have a very personalized and understanding physical therapist. We stopped the hot/cold therapy and started ultrasound. I still can't tolerate the wand over the sensitive spot, so he has been focusing just above it where it appears that it might be spreading. Well, it's only been one try so far, but I didn't notice any relief yet. The different textures is something he has been doing all along, along with pressure from hands, very hard for me to tolerate still. Today I had a very, very bad shooting pain while squeezing a ball between my feet that didn't pass for half a minute. He felt the back of my calf and said it's extremely tight, and it's very tender to the touch. He massaged it and put heat, seemed to help.

I'm on Effexor for anxiety and off-label for pain, any experience with this? I am not tolerating it well and it's just making my anxiety worse with disorganized thinking so far. I am wondering if the pros outweigh the cons, my research findings have been bleak.

I am changing my sheets tonight to 400 thread count, hopefully it helps. I am also going to buy a "mushie" pillow for bed time to rest my ankle on outside of the covers.

Good plan to try things out - you WILL find things that help to ease your symptoms a bit and make life easier...

Try asking your OT for a bed frame - it lifts the covers off the end of the bed, so that the sheets etc don't touch your bad bits. I put a pillow at the end of the bed to lift the quilt up - I sleep a lot better these days (mostly) lol!

The textures desensitization can be difficult, but it is worth persevering, it can make a real difference to what clothes etc you can tolerate. But....if it makes you very sore, then you should dial it back a bit until your skin accepts the texture without pain. It's a delicate balance between increasing tolerance and not hurting yourself more.

Good luck with it all...

Bram.