I was just diagnosed yesterday with CRPS after not recovering from a bunionectomy three months ago. Bones are very soft, foot and leg are swollen, red and HOT, and worst of all - I have absolutely crushing bone pain. I cannot walk AT ALL. Every time I try to take a step, it feels as if my foot, ankle and knee are going to shatter in a million pieces and they get redder and redder. Does anyone have any suggestions on what works for deep bone pain? Doc put me on Neurontin, neuro cream, PT and am waiting to get a lumbar sympathetic block. Any tips for what might work would be so appreciated.

Warm baths always help relax me... It is a long road. I have had a SCS and ketamine, and many medications, and I am only 20. Get a doc that has sucessfully treated this before-- and most of all through all the pain remaining with a positive attitude keeps it better welcome, and I am sorry you got diagnose with CRPS. Any questions feel free to ask.

Thank you so much for replying. Actually, I do have a question. There are days that the redness is much worse than others. It's always there - but sometimes a pale red, others a bright red. Is this normal for CRPS?

Chalmich
Im so sorry to hear of your calmaity . Since its been a short time since the invasive surgery,,there is alot of hope for you,,there are many things and avenues to try,,meaning that rsd is weird, what works well with one may not for another . The blocks seem to be a wise first choice ,anti-inflammatories are recomended,and as hannah mentioned, warm soaks do really well,I also get relief in my foot by wrapping in while im in bed in a warm towel,inside a dry towel,,wet heat is better than dry. but heating pads help, neurontion[gabapentin] helps,alot of dr's reommend a muscle relaxant,alot of people seem to do well on bacofeln and zanaflex..I also have sen a huge relief fron a antideppressant,,i use xanax,,I have deep bone pain,I had a total hip eplacement and rsd is deep in my bones,,xanax does bring my pain from a 8 to a 5,,,you can use pain meds,nut some of the things that i menetion ,dont mask the pain,, they get rid of it to a certain degree,,,my dr just started me on clonidine,,its a blood pressure med,,i dont have high BP but its made to address rsd nerve pain as well,,,,just a few ideas,I do hope that you only have rsd I and not II {causalgia] nerve entrapment,,thats the aggressive one,,,,,,,,I hope and ptay that it calms down,,,,,,,,,bobber

yes, while RSD is in its 'active' stage... it part of having it is skin changes. My rsd came after surgery as well so i understand. Mine was really red and looked like mold was growing on it... pretty nasty. But I am sure your CRPS is not under control so it is normal for that to happen. It is just the nerves firing off like crazy and how our bodies react. Also, I got a warm humidifier for my room, and I noticed that it has helped ALOT with my skin not feeling as dry with all the weather changes. Warm heat is best yes, and they say water therapy, if you have a warm pool, or jacuzzi it is REALLY REALLY good to keep moving. Bottom line, is dont stop moving it-- we all know and understand the pain of having to move our limbs but otherwise muscles deteriorate and its worse to get back. Number one thing for crps is treating it early... with medications blocks, and PT, but NO ICE-- whatever you do NO ICE ice is horrrrrrrrrible for rsd... hang in there!

Also, warm baths with epsom salt, or i found dead sea salt with minerals. Also, i put a little bit of vitamin E oil in the water in the bath so my skin doesnt get so dried out from being soaked so much!!! And calming music, make sure you stay calm, and keep emotions at bay. It helps alot when it comes to my CRPS, whenever i get irriatated or angry, my rsd acts up within seconds or minutes I can tell I need to sit and listen to calming music and take deep breaths. Just with your doctor-- hear his goals and his plan for you. Where are you from?

Thank you so much for all the great tips! I live in Arizona, so dryness is a problem anyway. And so funny you mentioned how stress can cause the RSD (they actually called it CRPS - is it the same?) to act up. I had a little argument with my Mom today on the phone, and after hanging up my foot was just burning. I lifted my pant leg to take a peek and sure enough - it was beet red all the way up to the knee! I thought maybe I had aggravated it by my sitting position. But after your explanation, now I know that skyrocketing emotions will show up where the RSD/CRPS is. How strange! I guess I have a lot to learn about this. It is just really bizarre - one second so hot, then freezing cold, then red, then pale, then a blue bruised look in some of the toes. I do keep moving it, trying to walk. But everytime I do, the leg from the knee down gets red and hot. It is tempting to just not try, but I know that is a huge NO NO. My physical therapist said that I literally have to beat this thing into submission. No matter the pain, keep putting pressure, keep trying to walk and keep moving. He has had a few cases like mine before and he says it takes about 3-6 months of constant work, but it will retreat. And my doc said that rest is my biggest enemy. Do you ever have days with no symptoms? Or is it always there?

Thank you for your reply! Very interesting what you said about how BP meds can calm the nerves down. When I was at the doc yesterday, they took my BP and it was 40 points higher than normal and my pulse rate was also very high. I was really surprised because I always have very LOW blood pressure. The nurse told me that when you have pain, your BP increases dramatically. They view it as another marker. Like I mentioned in another post...I have A LOT to learn! This thing is so weird and hard to understand. And even harder to live with!

Oh i am in California. Be glad you dont have cold weather, and NEVER GO TO THE SNOW... you will thank me. lol.. i learned the hard way... Well I had it for over a year before I had ketamine which made me 100 times better. I actually had the ketamine because I spilled boiling water on my hand which caused my rsd to spread... (rsd is the old name... crps is the new name... its all the same thing except the crps is type 1 and 2... one without nerve injury, two with nerve injury. So, my rsd was in my right arm, and i the hot water caused the rsd to spread across my back and into both of my shoulders and neck... and being young he had to stop it from spreading more as nerve blocks stopped working on me a long time ago. But when I first got diagnosed, I was working for surgeons and they did some blocks on me which saved my crps from progressing faster.

Yes stress is bad... It is something we just have to learn to manage... I no longer talk to quite a few people because they just cause my emotions to get too high and its too much for my health. My mom knows, and understands and has seen what happens when we get into arguements so we for the most part can avoid them all the way, or I just walk away or say I have to go to anyone who upsets me. AND BE SELFISH you have to do this for our own good!!!!

Yes rest is horrible... keep it moving... I know water is the best because we cant get hurt in it. After having my infusions I am considered in remission, but i still have bone aches, but not nearly the amount as before. Once it is under control (well... it never is under control... but as much as we could with the power we have with treatment meds, etc...) I do have better days than I used to. I think that we learn how to know our limits and not to push ourselves. I still dont have the energy that I had before I got crps, but I have come a LONG way. My right arm is affected and I am right handed and I sew and use it alot, and right after I take a bath or put a rice heat pack ( the kind you put in the microwave) on it and it tends to relax all the muscles)... I actually have an article that would be interesting for you to read... if you pm me your email address i can send it to you

Dont look at it as a curse, yet a blessing to live a more zen life... hehe I have learned ALOT over the past year, and if its one thing-- count your blessings not what you dont have, and take care of yourself first

ps... and your PT said beat it into remission... but we do that slowly, and we build up to it... especially since you just had surgery your body is trying to heal 2 things

Hi welcome and I am sorry you are facing this. It can take time to find the right treatment for you which may be different from others. I had tried so many meds at one time that did not work at all. Then 2 years later tried them again with added new and increased to a higher dose and they have helped. For me I have 24/7 pain but to varing degrees. So many things play a role in how my day will be pain wise and sometimes there is no connection. For me weather is huge. I used to live in MI and actually moved cause of this condition to a warm state. Since you are newer you may want to keep a journal to see if you can identify what helps or hurts you more. Hang in there and try to take one day at a time

Hi Chalmich and welcome to neurotalk, I am very sorry you have this disorder. You will fine so much information, compassion, and kindness here. Like was mentioned, we are all different in our response to various treatments. I live in Scottsdale-don't know where waddell is. We have support groups in Phoenix and Tucson. You can get phone numbers from RSDSA and put in your zip code. Or you can private message me and I will be happy to get that to you. Our meetings are once a month on Saturday
RSD is an autonomic disorder, which means involuntary organs are affected.like heart lungs, The sympathetic nervous system affects blood pressure and the para sympathetic nervous system causes low blood pressure, which I passed out from for a long time. Affects the immune system
circulation.
Swimming is good for us or water walking. Water needs to be 86 degrees.
Hot Tub temperature I've heard is too hot for us..
I'm curious where you are getting pt and who your rsd dr. is? I had an excellent ortho hand dr. and pt downtown phoenix.
I was on neuroton for a long time and it packs on the weight- so be careful. I took 3200 mg to stop the electric shocks and jolts. I gradually went off and the shocks, spasms never came back. I take lorazepam an anti-anxiety med and he helps with staying calm.
I've had this for 15 years and am full body or generalized plus have it internally. It came immediately after surgery, but wasn't diagnosed for 4 years. I did start pt right away, as I got frozen shoulder(really rsd)
Hope the best for you, your friend, loretta with soft hugs