CRPS - What to expect? How to cope / quell my worries?

archaicsilence, everything you've written makes sense. I don't see a single stupid word.
Tell us a little more. Did you have an injury to your foot or any injury to your low back. What is the pain like? Do you have swelling; color changes; does it hurt all the time only with pressure; does it burn, or is it sharper pain; constant or dull. Which part of your foot is affected.
Have you tried a lidocaine patch. It isn't a cure, but possibly some easing of the symptoms
Pain is pretty frightening. I'm betting that you'll find relief and feel normal again.

Yikes kiddo. I don’t know this condition at all but I do know about constant pain. A disease called Dercums. I can only share my experience from the perspective of managing pain.

My first go to is any relaxation technique. Visualization meditation breathing. Whatever you relate to. When my focus changes I can relax into the calm and rise beyond the noise of pain. Everyday and sometimes moments within a day vary. I distract myself with things I love to do. Garden or think about gardening, singing, art. You’ll find your joy One thing for sure worry and fear only feeds the pain. Live life in your joy and promise. I’m 73 this year …. You got this

Nothing sounds stupid. It sounds like crps. I caught mine from shingles having it for 6 years. Its basically an automimmune. For me its burning, I also dont heal, doctors dont like to do anything invasive if you need surgery anywhere because it would activate it, and make the pain and burning worse. Some pain management doctors give Ketamin iv, which some people say helps greatly, but for me, it made me psychotic, and did nothing. Lidocaine patches do help. You might try voltarin gel, which is also good. Also aloe vera gel sometimes soothes the burning. You should also consider a lot of vitamin c to boost your immune system, some pain doctors may give a monthly infusion of vitamin c and lidocaine. If you take the vitamin C orally the best one is Drs best vitamin c. 1000mg. One only needs 50, but that wont do a thing. I take 2000mg a day. Yes you pee right out, but dr. best is the one they use and researched extensively for chemo pts. to up their immune system to fight off side effects and pain. ask your doctor. a good pain management doctor is I find the best way to go.
there are days that you will be able to function but not like you used to. Unfortunately until it gets better under control. you have to try everything. For me ice helped greatly but too much can make it come back stronger which is why the aloe vera get is great. There is one ointment that literally changed my life in a months time.TERRASIL OINTMENT. THEY MAKE MANY , I USED THE ONE FOR SHINGLES, BECAUSE OF THE BURNING, HOWEVER THEY HAVE ONES FOR BURN PAIN, ETC. WHAT I DID WAS PUT IT ON THE ARE ALL OVER RUB IT IN THEN ABOUT 4 HRS LATER PUT THE ALOE VERA GREEN GEL. WALMART HAS THEIR BRAND CALLED EQUATE YOU CAN A BIG BOTTLE FOR 4. 95. LAST FOR A YEAR, PUT THAT ON ALL OVER. I DID THIS AT LEAST 3 TIMES A DAY AND ALWAYS DURING BEDTIME. ITS ALL NATURAL, A FORMULA OF BEESWAX WHICH HELPS ON THE BURNING. YOU MIGHT WANT TO GIVE THAT A TRY. GOOD LUCK, THE TERRASIL TOOK AWAY MY BURNING FOR YEARS. I DO GET PERIODIC SPELLS, BUT NO WHERE AS PAINFUL. ALTHOUGH NOW I HAVE SPINAL CORD INJURY SO ITS BASICALLY LIDOCAINE PATCHES, AND THE VOLTARIN GEL, WHICH ALSO COMES PRESCRIPTION ONLY PENNSAID OIL. ITS VERY EXPENSIVE ITS THE ROOT OF THE VOLTARIN BUT STRONGER. YOU WOULD NEED A PRESCRIPTION FOR THIS AND HAVE THEM PRIOR AUTHORIZATION THRU YOUR PAIN DOCTOR.BECAUSE IT RUNS ABOUT $600 A BOTTLE IF INSURANCE DONT COVER, BUT MOST DO IF OVERRIDDEN GET AT LEAST 2 BOTTLES A MONTH. THAT ALSO HELPED WITH THE PAIN. GOOD LUCK HANG IN THERE, YOUR YOUNG AND YOUR IMMUNE SYSTEM CHANGES AS YOU GET OLDER. SO IT MAY JUST WORK ITS WAY OUT OR AT LEAST LESSON GREATLY.. BUT FOR NOW DONT PUSH IT. JUST TAKE IT SLOW.. I KNOW ITS HARD BUT PAIN IS TERRIBLE HOPEFULLY SOME OF THESE WILL GIVE YOU GREAT RELIEF. GOOD LUCK. THE TERRASIL YOU ALSO MAY FIND CHEAPER ON EBAY.HERE IS THE LINK.https://www.google.com/search?q=terrasil+shingles+burning+pain&oq=&gs_lcrp=EgZjaHJvbWUqCQgAECMYJxjqAjIJCAAQIxgnGOoCMgkIARAjGCcY6gIyCQgCECMYJxjqAjIJCAMQIxgnGOoCMgkIBBAjGCcY6gIyCQgFECMYJxjqAjIJCAYQIxgnGOoCMgkIBxAjGCcY6gLSAQ4xNjI0MTYzNDU3ajBqN6gCCLACAfEFchwL6f5AM2Q&sourceid=chrome&ie=UTF-8

I went to UNC, too. They were great. I did get a Boston Scientific Spinal cord implant. It has been fantastic. Make sure your rep knows what he is talking about with Boston Scientific if this is the route you go. Go into YouTube and watch the videos. Just so you know I did finally switch reps with Boston Scientific and found one in the Hickory area that is fantastic. If you are anywhere close to the Charlotte area look up Dr. Russell Davenport. He is an anesthesiologist that specializes in pain management. Watch your diet! You are in the beginning phases of this it sounds like and you could very well shake it. Stay off of red meat. Eat poultry, fish with omega-3, and stop eating sugar. Any form of sugar get off of it. I have also gotten off the gluten which is helping me. Remember to exercise. Water aerobics is great. Find someone who understands CRPS and get into therapy with them. there are several support groups online that are also very helpful. I have found one that's in the New England area to be especially educational. I go online and catch their meetings that way. There is a young people seminar coming up in Tennessee in June that you also might want to look into.

I sprained my ankle pretty badly on Halloween in 2023 and in the following 2 weeks or so ended up injuring it a lot more which the doctors think is what caused it even though I had thought it had fully healed. It originally started as just ankle pain that I just woke up with one day and has since spread to being my entire leg with the worst pain I’ve ever had in my life. I can’t walk well, I use a cane to get around if I’m not at home and limp when I don’t use it. There has been temperature and color changes, like I know sometimes it’ll look almost purple and it can be both really cold and really hot depending on the day. There definitely is swelling at times, and the pain can change but it’s always there in some form and even the lightest bit of pressure feels like needles on my skin. They told me it was CRPS because I had nothing show up on MRIs, nerve tests, blood work, xrays, etc. I have not tried a lidocaine patch but it’s been brought up, I’ll probably end up trying that. Thank you.

I am around the Charlotte area! I’ve never heard that name before but I appreciate the recommendation. We’ve tried to get me in with Anesthesiologists but the wait times were so bad which is why we went to UNC. I’m not really sure what they’re gonna do there but I think the possibility of nerve blocks or something similar were brought up. I have never eaten red meat so I doubt that’ll be a problem haha. Thank you for the recommendations, I appreciate it a lot.

Wow! You seem to have a lot of experience with this stuff. Thank you for all the tips, I’ve not tried a lot of these yet so I’ll definitely look into it. I do know things like ice and heat make my pain a lot worse like it makes it burn really bad (which was always strange to me but nothing about CRPS makes sense to me haha), but I’m not sure about the stuff you mentioned so I’ll look into it! I know medicine wise they gave me Amitryptiline and Nortryptiline which helped me anxiety and depression wise but not pain wise at all, so right now I’m unmedicated but they might put me back on something when I see a pain specialist. Thank you so much for the advice and kind words, I really appreciate it.

Thank you for the advice and kind words! I have found that distracting myself like you have said has helped. Usually whenever I sit down and play games with my friends or when I draw it’ll get my mind off of it enough for me to enjoy myself until I get up, so I do know that helps. Thank you again, I really appreciate it!

Sometimes pain in the foot originates in the lumbar spine. Did you have an MRI of the low back?

I did, they found nothing. That’s part of why they gave me the CRPS diagnosis since nothing was found in my back.