I am so so sorry to hear what you are going through. It definitely sounds like your symptoms are fairly "normal" for CRPS. It affects all of us a little differently and yet the same...but different. But don't lose hope...things can get better.

I'm sorry that you had to wait so long to get in to see the doctor and that things got so much worse in the mean time. Best thing I can advise is to keep fighting and to keep MOVING. I truly do understand how hard that is...but if you immobilize or protect the CRPS areas too much then the pain actually gets worse. PT saved my life...seriously. It's such slow progress and it really cannot be approached like PT for other things (like a sprained ankle or whatever) in my opinion. Any PT you do needs to be tailored to your condition and your individual needs. It's all about pushing through the pain but also balancing that with what your limits are and not overdoing it.

I really really hope that they are able to get things under control for you. Definitely continue to research and look for treatment options that would be best for you. I started a new treatment (tDCS) a little over a month ago and it is really doing wonders for me. It's not invasive, has little to no side effects, and is fairly inexpensive (only cost me $300 for the equipment). If blocks are not an option for you (they caused mine to spread unfortunately) then this may be a very good option for you. Unlike many other treatments which simply aim at covering up the symptoms of the condition, tDCS aims at the root cause. There's a thread on here about it and I highly recommend reading through it. It gave me lots of hope that there would be better quality of life out there for me.

Other things that I find that help me with the pain are a TENS unit, ultrasound heat therapy, hot baths with epsom salts, and heating pads. And I have also changed my diet to the 4 Fs diet which is supposed to be good for those with CRPS and inflammation. Don't get me wrong...none of these things take the pain completely away or anything...but added up they give me a much better quality of life and they help me to get through each and every day despite the awful pain.

Take care and if you have any questions, please feel free to ask. This is a wonderful place to get support from those who know what it is like to go through each and every day with this monster. It's also a great place if you just need to vent as well...think we've all been there. Good luck.

So sorry to hear what you are going through, CRPS is a horrible monster to have to deal with! Everyone is different in what symptoms they suffer, but some are usually similar. For example, I do not have near the discoloration as many others do, but the pain...the pain is horrendous! Everyone is different in what treatments help them also.

The most important thing for you is early treatment. That will increase your chances of remission. The other very important thing that the others here mentioned is sleep. I always hated bedtime, because the pain was turned up then for some reason. I was very sleep deprived, which doesn't help emotionally to deal with this.

I was first diagnosed 20 years ago with it in my face and was treated aggressively with blocks and meds. I was in remission for 13 yrs before having a huge flare up in 2005. Then in 2009 I injured my hand and it came back with a vengeance. It mirrored over to my other hand, surgery on my shoulder caused a spread...then it spread to my left leg. I could not and still cannot tolerate most medication, ice, heat, TENS unit or PT. Because I couldn't get a correct diagnosis for a while with my hand, it spread and the blocks didn't help so much this go around. I had a lot of blocks, they didn't cause a spread for me. I had two spinal cord stimulators implanted in 2011, and they saved me! I have regained use of my hands, I can raise my arm now and my leg does not kill me as much riding/driving in the car. My pain is reduced greatly. My sleep is better, but not as good as it should be.

Like I said, everyone is different in what works for them.

I hope your dr will help you, if not then you need to move on to one that will. You need to advocate for yourself. I also hope you find relief soon!!

Nanc

Thanks for sharing Nanc! I appreciate your time and caring to respond. It seems that it complicates things that there is no commonality for everyone in symptoms or in treatment. I am happy to hear that you found what works for you. I can't wait to get to that point. I have had more bad days in the past two weeks than good. It almost is as if meds aren't helping at all now. It's nice to be able to hear from people like yourself that really do understand. BTW, I cannot imagine living with this for 20 years! You deserve some sorta of a metal of honor! I am not even at one year mark and I just can't see how I can do this much longer. Many thanks and lot's of well wishes to you!

Happy to share! And you are so right about the lack of commonality. You would think that as long as it has been around, more drs would be knowledgeable...but they are not! It is nice to find a place where people really get it and understand. I am lucky that my husband is great, he understands and really sees how I have suffered. It is hard for others to understand, they can't see it so they doubt that it is there...very frustrating, especially at work!

I truly understand what you are talking about with having more bad days now than good. They really need to get a jump on your treatment so it will be more effective!! Everyday for me was bad, and some worse. Thankfully I found a good dr (he was only like the 14th) and he treated me properly. Meds really do not help any pain I have. My SCS's are really the only thing that have touched my pain.

It is getting close to 21 years - ugh! Can't believe it myself, but I am reminded of it daily .

Wishing you all the best,
Nanc

For now work on getting cured and secondarily getting relief. I know this sounds quaint but you can control the pain a lot by not thinking about it. It's like a little piece of your mind is always dedicated to actively not thinking about it.

Try to start medications one at a time. A few will have bad side effects or conflict with other medications. Some are best to take at night and some in the morning. Always ask the doctor before changing but generally they won't care. Some like gabapentin/ neurontin might keep you awake so don't take it late. Some promote sleep so take them at bedtime. You have to find what works and we're each different. There are likely a few different diseases which are all called RSD and individuals and cases vary.

Be careful with medications too. The doc won't always warn you before Rx'ing something. One doc putme on 5mg of methadone but when I told another doc that I was going to start with a half he suggested a quarter and a laxative. It's a good thing I delayed. I prefer to avoid reading the precautions and side effects since that seems to influence me a little but do talk to people or google it first. Some of the medications can be disaster. There was one that made me feel like I was about to fall all the time and falls were a major side effect so I stopped it.

Find your triggers and try to avoid them. This sounds quaint as well like the old joke "doctor, doctor, it hurts when I click my fingers". Doctor: "Don't click your fingers". There are many things that can affect pain levels and getting control over them takes pressure off your poor overtaxed nervous system. Loud noises, bright light, stong odors, heat, cold, and raucous noise generally hurt us. Avoid noise, wear sunglasses iff necessary, wear extra clothing on affect area if it's cold. Watch your diet. Sodium nitrite is very hard on me. Too much salt or too little can affect me. Most people find eating smaller meals more often helps. Eliminate or cut back on caffeine. Avoid stimulants of all sorts. Control is key for me. So long as I feel like I can control my enviroment and stress is low I can function fairly well.

Sleep is critical. Every night we heal while we're sleeping and start the new day in better shape. There are several things that can keep you awake but talk to the doctor. Tizanidine stops my tremors which keep me awake. Buit then I have various other medications I can use when needed. Tramadol APAP is one of the few pain killers that has any effect at all. This is the problem with this disease; pain killers usually have no effect. I woke up from a hernia operation screaming bloody murder because my hand hurt and it took 20 mg of morphine just to shut me up and it had little effect on the actual hand pain.

Don't give up. I confess I do get bored sometimes but there's still lots to keep me occupied. I work as much as I can and this seems the best thing I can do for my condition and my state of mind. Work just makes the pain float away as long as it's not overdone.

There's usually considered a two year window during which cures are fairly common so you just might kick this completely. Don't forget it can come back though. Good luck.

Thank you for your well wishes and advise. What is the ifs diet? I had asked my dr. if there were any specific dietary restrictions or additions to help ease symptoms and he said no. Can you explain what the diet is or give me a link? Can you also tell me how you came to the tCDS? Were you referred by dr?

Thank you!!! I appreciate your help and advice!