I was just recently diagnosed as having crps. I was forced to go to 4 different doctors and finally went to my first pain managment appointment monday. Every DR. agreed on what I have. I was wondering if maybe anybody could give me advice on a few different things. First off, this happened after I had surgery on my wrist through a workers compensation injury. Any advice on dealing with workers comp and rsd? Its spread from my wrist up my whole arm already. My biggest question... I'm only 26. Im so scared of a life of this. How do you handle this emotionally and mentally without falling apart? My dr has told me this was ignored for too long by my surgeon and theres no chance of it ever going into remission. I wanted to be able to talk to real people who deal with this instead of different drs who all have a million different opinions and websites which just confuse me more.

Liz

We been dealing with WC for 5 years with RSD* and its been REALLY HARD. I hope you can find AN RSD lawyer to help you.

Well, mine is not W.D. issue, but my CRPS happened from wrist surgery too.
I've tried lots of treatment and mine is not in remission but has greatly improved. So there is hope! Everyone is different with this awful disease so try everything you are able to so you can find what works for you.
My original site (hand and wrist) is not nearly as bad as it once was but yet I too feel it spreading past my elbow (pins & needles, aching) feelilng so far.
For me the nerve blocks and physical therapy with pain meds. have been the best combo. Please take extra vitamin C and Magnesium to help prevent the spreading.

Hi Liz sorry you're here with CRPS, but welcome to a really helpful and supportive community. It certainly is a confusing thing to get your head around, but you WILL learn to deal with it and live your life. Try not to panic, it can be managed pretty successfully, but yes you are going to struggle as well. Be prepared to become even more strong, stubborn, resourceful and determined!

In two days time I will have had CRPS for two years after a knee operation the was supposed to 'fix' my knee pain. Amazing how your life can change so quickly... Mine has spread, and I worry about it spreading further, I think the Vit C and Mag advice is good, and there is some medical research to support it. In an effort to state the bleedin' obvious don't use ice at all, and keep using that arm as much as the pain allows. Try to exercise and keep your body in as good a shape as you can, as weakness makes you more vulnerable to injury and illness - mine has gone a bit flabby and weak over that 2 years, and I'm having to fight hard now to get at least a bit of tone back!

There is a balance to strike with it. You need to learn about this condition so that you can inform the doctors and other medics you see (very few know about it), and you will experiment with meds and treatments to find a combination that helps you day to day. You have to be your own advocate with this, you can't just accept what any doctor tells you about it - too many are not working from a position of specific knowledge, and you will end up knowing more about this than they do. You might need to change doctors, fight to find a good physio, stop a nurse from using a BP cuff or taking a blood sample from your bad arm... It's certainly not an easy ride.

BUT you do learn, you do cope and most of us find that things settle down to a state where we can live our life pretty well. You can overdo the research and the reading and being angry about it. The balance is to keep educated with new thinking, keep in contact with supportive knowledgeable people (check!), but live your life as best you can without concentrating on it every minute of every day. You can enjoy life despite what the CRPS throws at you...most of the time There are bad patches, and days when the fight is too hard, but you just keep on going.

Prepare for the worst, hope for the best and when you're learning about it, steer clear of any obviously biased websites, remember that the idea of stages has been proven and accepted as rubbish (some docs still believe it) - and don't look at the pictures on some sites (they can happen, but are the extremes, and you don't need them in your head).

Good luck with everything, and I hope your spread stops where it is!

Bram.

Mine started as a result as surgery as well in my left arm/hand.

It has been a little over a year since I was diagnosed. Mine also went undiagnosed for a while.

I just turned 40 years old in May. I struggle some times thinking this is what my life will be like now. I have found taking things one day at a time helps the most. I try to not think about how things will be in the future, because it will cause stress and anxiety ( which are both going to make things worse) That is not to say I never let that happen, but I make an effort to not do it.

I also take Cymbalta which helps with both pain and the depression.

Hello Liz0323,

I was also diagnosed with CRPS type 2 following nerve damage during hip surgery. So I can sympathize (as many here can) with the devastation this causes in the beginning. When did you first develop symptoms of CRPS? Personally, I wouldn't let what the one doctor said about remission like it is written in stone. The fact is this disease/condition is complex and there truly is no way to accurately predict the progression/regression of it's symptoms for any one individual. Each one of us will be totally unique in how it develops over time. That part can be even more frustrating at times.. just try hard to stay positive and focus on doing as much as you can to help yourself cope.

When I was first diagnosed these are the things I implemented in my daily life:

1. desensitization - done during warm water epsom salt soaks. I used different textures of cloths, body wash, lotion etc., in the attempt to decrease the sensitivity. It also helped me to turn my head and while holding my husbands hand I would gently place it on my leg and then pick it back up again. These things really help.

2. keeping that body part warm. Clothing can be difficult on a CRPS limb. If you try different textures you should be able to find the type of linen that is most comfortable to you. Keeping the limb warm makes it easier to move and causes less pain stimuli.

3. a kitchen timer. I use my kitchen timer to go off every hour to remind me to move the affected limb. Bracing or immobilizing the affected limb does much more harm than good. I started with slow gentle movements for 10 min. every hour and increased as I was able. Spread your fingers, do your desensitization, place a tennis ball under the palm of your hand and roll it on the kitchen table in a circular pattern, pour our a bag of m&m's and sort them by color, move cotton balls from one bowl to another.. whatever you can think of to move your arm and fingers no matter how simple the tasks seem. Incorporate these things into your daily routine.

Ask your doctor about these things:
Lidoderm patches
voltaren gel
medicated compound cream (with ketamine)
gabapentin
nortriptalyne
flexeril
celebrex

Vitamins:
Vitamin C
Vitamin D3
Vitamin B6 & B12
Daily Calcium

Eating a diet full of fresh fruits & veggies, fish & fowl and avoiding processed foods will be beneficial for many reasons.

Stress, fear, lack of movement, excessive heat/cold, lack of sleep are just a few of things that increase pain and make it more difficult to cope mentally. Work with your care team to address sleep issues right away! Just knowing that certain things can increase pain made me much more prepared to deal with it. It is impossible to avoid all things that increase pain but having a "pain plan" in place ahead of time helps. My pain plan is this:

1. close my eyes and think of times of happiness.. try to really think about small details of a vacation (such as what you were wearing) or something else fun you have done.

2. change your surroundings.. even just walking outside/inside and enjoying a different view for a minute helps distract the mind from pain or feelings of hopelessness.

3. call a friend and ask them to tell you a story or share what is going on in their lives. Don't feed your pain by sharing your crisis.. remember you are trying to trick your brain into not feeling the pain so really focus on the other person.

4. take an epsom salt soak
5. go for a walk
6. read an encouraging book

Having a plan really helps.

Try to get into the mindset that this disease will not define you and by doing so you will find ways to work around any pain/limitations it may create. The mountain (CRPS) may be in front of you but it is YOUR JOB to find a way over it, no matter how hard it may be. Never give up!!

Wake up everyday saying "I will defy all the odds"!

God Bless,
Tessa

Thanks for all the positive responses. I just feel like I dont know what to do and it doesnt help that all my doctors are fighting. My original surgeon swears I dont have rsd because I can function in a conversation and that I dont need medication. Today he told me hes going to refer me to a pain dr who wont put me on any medication? I dont understand how there can be such differing opinions on this condition. Im trying everything I can to try to just relax and breathe and let things go but Im so frigging frustrated when it feels like everything is getting worse. After speaking with a lawyer today I found out that it is common knowledge that my original surgeon ignores patients with rsd and even disputes its existence. I dont mean to sound like Im whining, I just feel like I need to get it out there to people who understand. My family is trying to understand but I just get angry with them when they say stuff like go take a nap, youll feel better when you wake up. How can you explain until your blue in the face and your own mother doesnt get it! ugh!
anyway, ive tried nuerontin and lyrica, they both made me majorly sick. The new pm dr i saw said its due to my original medications, that they never should have been added in the first place. Im trying to get healthier as it was recommended that I quit nicotine and caffeine.... not exactly helping my stress either....lol. I'll give the vitamin c and magnesium a try.. does anyone know if they can interact with the medications badly? The pain medicine I was given helps, but if i get up and start moving the pain comes right back. Im scared to tell the dr its not helping, that he'll label me a drug seeker.
I know this post wasnt exactly any questions... I just feel like discussing this stuff with people who understand might help me feel better. I'm so frustrated and I feel like people in my life TRY to understand but just don't. I feel like all the plans I made for when I got older have been thrown out the window and like my life is going to revolve around pill bottles. And oh yeah, today I was told they dont think Ill be able to return to work. I've been out for a month and I feel like I'm going crazy... I just cant imagine a whole entire life like this..

How long has it been since its onset?

A little over two months now, which is why I'm confused as to why one dr told me there's no hope of emission remission? I thought this gave me better odds or remission? As much as I'm whining I do know how lucky I am it was caught that quickly.

A little over two months now, which is why I'm confused as to why one dr told me there's no hope of emission remission? I thought this gave me better odds or remission? As much as I'm whining I do know how lucky I am it was caught that quickly.