I am new to all of this... I just wonder if this sounds normal to anyone. I feel like my body has been invaded or as if it is a voodoo doll. Let me tell you a little background...

I was running three miles per day in May 2011 when I hurt my knee. Initially told to stay off it, ice it every 20 minutes and took pain meds. After a few weeks, no improvement so I had cortisone injection and pt. Months of this with no improvement, so I was referred on to an ortho specialist. He ordered more pt. I could not tolerate that. However by this point, 3 months after injury, the pain had changed. I had a lot of tingling up and down the entire leg. It has extremely sensitive to touch and started heating up. I was then referred to neurologist that specialized in RSD/CRPS. In the nearly 3 months wait to see this doctor, the legs got hotter, felt numb at times, shooting and stabbings at random times, just plain painful! Then, the other legs started feeling the same way. It started in the same manner and progressed. I would get weird bruises without any injury. They were dark and lasted a long time for a bruise.

I saw specialist the end of November 2011. I have seen him a few times since. Taking meds that have been tweaked through course of treatment , list includes: Neurontin, zanaflex, maprotiline, lidocaine patches. No pain block (not sure what exactly he means by this other than it is a needle in my back to block pain) because he believes my nervous system is too agitated right now and a block could risk further spread.

So right now, I wake at a pain level that averages at a 5 then to an average of an 8 to 10 by the end of the day. I have most pain at the site of initial injury. However, I also have the tingling, heat, stabbing and squeezing pain in both legs, sometimes in hips, and now starting to get the numbness and tingling, and squeezing pressure in my wrists and hands, especially the right one with a constant pain in my right shoulder. The right shoulder actually started hurting before the hips and pelvis. I thought maybe was result of the cane I was using. My mobility is limited. Walking is painful.

Nights are terrible. Why is night time so bad? I lay down and that's when the craziness really get going. It feels like fireworks are being set off inside my body. I never know where it will hit. It's so random but is it terrifying to me. The pain is severe. Does anyone else experience this type of shooting, bursts of exploding pain? Is this what CRPS is all about? My feet feel like they are curling up, so much that I often check them to see if they are but they are strait. They tingle and buzz. It hurts to touch the floor. Anyone relate to that?

I can't stand to drive. The vibrations of the car amplifies the pain. Loud noises (kids yelling and sadly, even laughing) can make it intensify.

I can't believe that this heat and pain can't be seen by the eye. I look at my legs to check out what they look like. Other than being blotchy, they look normal, no flames or pokers, knives, needles, etc sticking out of them. How can this be?

Is this what others experience? How long is this going to last? What can I expect? My doctor tells me everyone is different. I would just love to hear if others can relate to what I am feeling and if you have any advice. This has been so devastating to me. I am a young, 38, active mom, who worked full-time. Now can hardly to anything. I am told that early intervention holds best results but OMG I want my life back now, yesterday even! Help!

So sorry to hear that youre going through this! CRPS is a terrible thing for anyone to have to endure.

I cant speak for anyone else, but I can tell you a bit about what my CRPS feels like - mine is in my left foot, and I pray that it stays there!

First was the lightening stikes. Honestly, it felt as though my foot was being electrocuted! It was sudden and crippling. It would start around the arch of my foot and shot through the front end of my foot and out of my toes.

Then there was the burning. It still baffles me that I can look at my foot and not see flames. It was an all encompassing burn like nothing I've experienced in my life.

Next was the vice grip pain. I really dont know how else to describe it - it honestly felt as though my foot was clamped in a vice and it was being squeezed as tightly as it could possibly go. Just like the with the flames, it made no sense that I could look down and see a mostly normal looking foot instead of a crushed mess where my foot once was.

There is also the feeling along my skin that even the slightest shift in the air around me causes me extreme pain as if my foot is being skinned, and even the very softest touches of anything sets me off howling in pain.

They are my top 4 pains I've experienced with CRPS - but certainly not the only ones. There are the odd crawling feelings under my skin - the rolling muscle contractions - the terrible swealing - and even the freezing to the point of pain one that comes from time to time. My foot is also a lovely shade of red/purple/blue, my toes are curled and I have little control of them, and my toe nails and hair on my foot is growing out of control! But everyone experiences CRPS a little differently, or so it seems, so Im sure that others could share even more on the pains they've felt.

I am so VERY lucky to have had my CRPS diagnosed within weeks of the onset! Im being treated with PT (I have a realy love/hate relationship with it!), neurotin, amitriptyline, and sympathetic nerve blocks.

The PT is sometimes horribly painful, but so many people have told me that I have to push through and try my best to endure - and I'll recommend the same to you! It is slow going at times, but each new thing I can tolerate/do is like a huge deal in my book. Please be sure that your PT is experienced in treating CRPS - that is something that is very important.

The meds do seem to take the edge off of my pain, but I'm thinking of looking into going onto more or something different! The neurotin has destroyed my short term memory - a lot of people have gone into a room and forgotten why, I get into my car and drive and forget where Im even going! Its a bit frustrating! I even showed up to the wrong office for a Dr appointment today! - and I've taken to taking notes on my skin in pen, because if I write a note and put it in my pocket, I'll forget its in there!

And I've been very lucky to have success with the nerve blocks. But theyre not for everyone - and based on what your Dr thinks, they may do you more harm than good! There are several links/threads on this site to help you find other treatments, such as ketamine - which I havent tried, but I know people that have had huge success with!

As far as how long youre pain with last, or how long anyone with CRPS pain will last, its anyones guess. Some people go into full remission and others are not so lucky.

I think the most important thing to do is to fight back! Dont let this horrible beast take over and take your quality of life away! (I know, easier said than done!) Be proactive, research, and make sure that your Dr is really listening and doing things in your best interest! Keep moving, keep positive, and for the best piece of advice I've been given: NO ICE!

Again, Im so sorry to hear what youre going through! Im very very new to CRPS and Im still very much in the beginning stages, so my advice may not be the best, but its what I try to do every day!

I wish you the best! {{very gentle hugs}}

~ T

I forgot to also add the nights are the worst for me as well. With the nerve blocks my pain is down to about a 4 during the day, but I can tell the sun is starting to set just by the pain in my foot, I dont know if this has something to do with barometric pressure? Im really unsure, but it does make nights unberable and sleeping a full 6 hours is something I would give almost anything for! I've read that insomnia is common in CRPS - but most of the time Im unsure if its the pain that is keeping me awake or actual insomnia?! I usually fall asleep somewhere around 3am when total exhaustion takes over - Im thinkin of asking the Dr for something to help me sleep - but I HATE being on too many meds, so Im not sure what I'll do!

Sleep is critical to facing daily chronic pain. I use trazodone (generic for desyrel) to help me sleep. It absolutely does help, although I still do have some sleep issues.

Trazodone is a relatively mild drug and most people tolerate it pretty well. I would certainly ask your doctor about it or some other medication that can help you. You really need to address your sleep deficit.

The description of your symptoms does sound very similar to many of us. It is a terrible condition, but with the right medications, therapy and other complementary treatments, many do find relief. This is a good place to learn about OPTIONS. CRPS is a very "individual" condition. What works for one may or may not work for another. Lots of trial and error.

Good luck to you!

I'm afraid it sounds pretty normal around here.

Don't despair. You can get on the right cocktail of medications and learn the things that make it worse to get it under control. When caught early it can even be cured sometimes. It's not the end of life but it will change it probably unless you're able to cure it. There is life after RSD.

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

Thank you so much for sharing your experience! While it is a bit comforting that you can relate to what I am going through, I'm truly sorry that you can. I totally understand the crawling feelings and the lightning strikes you spoke of. You mentioned you have had a nerve block. If you don't mind sharing, what exactly was it and when did you receive it? At what stage? How soon after diagnosis? Feel free to message me privately if you feel more comfortable. I am just so new to this. I think my doctor is good but wonder if more can be done or should be done. After the past few nights of pain, I just find it hard to believe that people should suffer this way.

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!

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!