Hi ToePain love the name!

Sorry you've got this beast to deal with....but....life can still be good, it's just about learning to find and cope with your new limitations, and making the best of what you can still do.

Just for context, I've had CRPS for nearly 3 years, it started in my left knee after an op, and has spread to both feet, my whole left leg and arm, and increasingly in the left side of my torso. Fun and games as we all know. I had to give up my job which was pretty physical, and started doing self-employed work which I enjoy. Unfortunately there's no sick pay lol, but it's better than nothing .

I'll answer your questions ones by one from just my perspective lol

1) exercise is definitely beneficial, so keep doing it....BUT you might find that running is a step too far to start with. It's quite a high impact activity in many ways, and something gentler on your body might be better for a while while you find your new 'normal'! Swimming, rowing, cycling etc are all better for your feet and legs.

2) I kind of know what he means, but I'd be wary of any mention of stages, as they have been shown to be inaccurate. This disease varies wildly between individuals, and symptoms can vary both in how bad they are, and whether they are present at all. The best thing you can do is to read up about the condition, sticking only to reputable sites and steering clear of any photos.

3) The treatment plan sounds pretty good to start with. The lumbar blocks can be effective for some people, especially if started early on, but others end up stopping them because they don't work so well. It's an individual thing. Just listen to your own body and go by its reaction and how you feel - don't give in to pressure from doctors about what they think you should do. It's important to be in control of what happens to you. Question, research and decide for yourself. It's your body and your pain!
Lyrica is my drug of choice, both for the long term pain and stabbing pains, and because it's fairly gentle on my stomach and mind lol! I've tried lots of other meds and lyrica is the best so far. That's just me though - it's important that you find what's right for you. Just don't expect miracles - most drugs can take the edge off the pain, or reduce certain sensations, but not much takes it all away...harsh but true.
The pain management counselling type of treatment is very important IMHO. I was very sceptical, but learning to deal with the psychological aspects of having a chronic pain condition, especially one so poorly understood, is invaluable. I have an hour a day most days where I do a set of CRPS management - physio exercises, massage and meditation. It all helps with the pain a lot more than any meds! I use the Mindfulness meditations, they are on YouTube for free

5) after more than a year, it is unlikely that you will be cured. Folk who manage to beat this normally get aggressive treatment within the first 3-6 months, and the disease just seems to stop - sadly that just doesn't happen for too many people. BUT this is manageable. It's just about those awful words, acceptance, coping and pacing. You do have to find your new level and then keep pushing on everyday to maintain what you have and try to slowly improve. It's important not to try to do too much at a time - small, steady steps will get you a lot further! Avoid doing loads on a 'good' day, because we then tend to suffer for the next couple of days after. Better to try to do a similar level of activity every day, whether good or bad, and then add to it a little at a time, varying it when you have to. It gives you a lot more scope for a day out when you can.

Feeling 100% again may never happen. But you'll find you can still have a great time at 80%. As I found recently when I herniated a disc in my back you have to be glad of, and deal with, what you have now, because it can get worse, stuff happens, and you don't want to have wasted the days waiting for things to get better, because in all honesty, this might be a good day now. Just not as good as you would like! Your old perceptions of wellness have to go out of the window, and you need to find your new good and bad. I find that psychologically I cope a lot better when I'm not constantly comparing how I feel now with how I used to feel before CRPS.

6) other things to try.....unperfumed Epsom salts, a few tablespoons either in a warm bath or wrapped in a damp cloth and applied to your skin when it burns. The magnesium is very good for us, and used regularly it improves the sensitivity and burning.

One last thing......NO ICE EVER AGAIN ON YOUR BODY. No matter who tells you to....physios, docs, nurses. Just don't do it. For swelling use NSAIDs and elevation, not ice. Ice affects our already crappy skin and circulation, and causes permanent damage and increased pain. Not worth it, believe me. Steer clear of any extremes of temperature, because your skin just can't deal with it the way it used to.

Soooooooooo sorry about all that. But it's best to get as much info as you can now, and let it all sink in. Just remember that you will always see more negative than positive stories on the Internet, because folk who are doing ok just don't need the support of sites like this!

Keep posting and asking questions. You will have some black times, but plenty of good ones too. Find a smile every day, and do the things you enjoy as much as you can. Don't let this thing take away your fun, or change who you are. You can find new ways to do some things, and replace stuff you can't do any more with new interests and pursuits. Sounds naff and trite I know, but it's true. Stay in touch with your friends, educate your family, and speak out if you need people to accommodate any new needs you have. Ask for help if you need it too, often people just don't know what to do for the best, so they do nothing. It's easy to take that the wrong way!

I wish you nothing but the best with this. You might not beat this, but you can certainly climb on top of it and quiet it down. Stay positive and never give up.

Bram

Hi Toe, I'm sorry you have rsd and at such a young age no less. I've had it for over three years and I'm 49. Mine started in wrist after I broke it and had a closed reduction. My symptoms were immobility of wrist and fingers and shoulder. Dark red to purple color on my hand to my wrist. You could see a line where the rsd stopped on my wrist. I had severe internal pain, but the sensitivity to touch and burning pain came a few years later. As did the sweating. I've had eight nerveblocks, three surgeries and lost a tooth, cracked a couple more and lost some hair since then. I have had spread to all my limbs and stomach and mouth. I am in constant pain and have gotten fibromyalgia a few years later as well. I lost my gallbladder and stones a few days ago and had a oopherctomy and hysterectomy a few years ago. My ortho dr sent me three months after diaganosed to a pm dr. He started me on the nerveblocks and neuronten and continuted the percocet that the ortho dr prescribed to me. I went to pt three times a week for six months and a neurologist who had me on high does of prednisone for two months. I also see a psychiatrist every three months. He prescribes xanax and zoloft for me. I tried cymbalta and felt extrememly depressed from it so I went back on xananx which helps a little with my panic attacks. I've never treid lyrica though. The neurontin and percs and xananx and zoloft and vit d for osteopnia and osptearthiritis I have now in my hips to help to avoid thin bones, because breaking bones can cause possible spread of rsd. The pills I take every day to help keep my rsd pain under control helps me to function a little and get out of bed each day. It has taken a toll on my stomach though. I stopped taking Advil because that was really irritating my stomach. I'm hoping I can cut back on the percs once the weather warms up. Cold and rsd don't mix well. Everything I tried helped a little to keep rsd pain and spread under control, but this past year I have been told by some of my drs that they suspect rsd spread in my arms and feet. Excessive dark hair growth and redness and swelling, burning and pain are the symptms and lack of movment are the sysmptom. atrophy. You caught yours early and I will pray you go into remission. My pm dr has seen it happen to some and has seen spread in others. There is no ryhym or reason. Keep doing pt but make sure they don't ice your arm after each session. Ice is Bad for Rsd. Prednisone helped me more than nerve blcks to get some movement back. But can be take only short term. My pm want me to try scs but my neruologist ssaid no for fear of risk of infection. I also have scoliosis, so it scared me too mcuh so I didn't do it. It's only good for the first two years anyway and I had two surgeries at the time done so was in no shape anyway. I think having a good team of drs, the support of family and friends like the friends on this forum and learning as much as you can about rsd like on the internet (rsd hope is a good one), and never giving up and taking one day at a time is the key to surviving and hopefully going into remission. I have found a pain psycholoigist to help cope with rsd. I think it's great that you found one. Water therapy slow paced is great too. I will pray that you go into remission and that you can resume the life you had. But no matter what happen, you are never alone, as long as you have a good support system. The people on this forum are the best and are always there for you if you need them. I know because they are always there when I need them. You will find that you are stronger than you think you are in your journey with rsd and you will be okay because you always have a friend me and the others here on this forum. Take care my friend. With love,Renee. PS sorry about typos, my fingers are very stiff today and my brain is fuzzy due to lack of sleep.