Hi I'm at the end of my rope with CRPS. IT BEGAN in both knees almost ten years ago. It is still in both knees, the pain and burning have progressed to the unbearable and has spread down my shins and calves and feet. I am a former athlete and have had 33 surgeries in the last 25 years. I had both knees replaced at 40 believing that would take the pain away. When I stopped all the drugs the pain was not only still there but it was worse. That was almost three years ago. The pain is always there and it's bad enough on a normal day but the flare ups are ridiculous!! I am a husband and father of four boys and it kills me that I am in too much pain to give my family what I know I can give them. First PM strung me along for a year and all the meds and 8 sympathetic blocks made no difference WHATSOEVER!! Now on to the second PM who is taking me off of all the meds the other guy had me on. So I'm detoxing and trying to keep it together to do my job. I am a stay at home father which I love but hate that I can't take advantage of it. Hell anyway that's the super short version.

Hi Dreif, Welcome to this forum! There are a number of wonderful people here that are here to offer great support and information while we all deal with this horrible syndrome. I am glad to here that you are not afraid to switch doctors knowing that you have not had any success over the years with your previous one. Although you feel bad that you have a difficult time dealing with the pain of CRPS, and it makes it feel difficult to be a parent, the best thing that you can do for your 4 boys and wife is just being able to be there for them and being able to put a smile on there face from time to time. I sure hope that your new PM is able to calm things down for you. Healing hugs

Hi Drief,

I am sorry to hear you are suffering so right now. The grit and resilience that have carried you through all this time surely won't fail you now though. Keep hanging on. I am sure the detox is not easy but it sounds like a good way to get a clean slate and start adding in new treatments one at a time so you know what works and what is causing side effects. As we all know, sometimes it takes a cocktail.

For the time being I hope you are able to keep your stress and distress levels down, maybe get in a heated pool for gentle soothing exercise and utilize any meditative or alternative techniques that have helped you manage pain. Taking anti-oxidants couldn't hurt either. Topical lidocaine is an easy thing to try too and won't interfere with your detox.
Best to you with the new doctor. Perhaps they have some tricks up their sleeve that may help you. I am getting ketamine infusions which is helping and am interested in LDN but one thing at a time...

I will have you and your family in my thoughts for healing and restoration. I hope you get relief soon!

Thank you both for your encouraging replies!!
I went through the ketamine infusions. Three very long sessions in one week.
The doctor was shocked that I got no relief at all once the effects wore off and it was he who recommended I switch PM doctors. I will probably try it again down the road somewhere. Good luck with your infusions! I have heard a lot of great results!!

Could you be admitted for a Ketamine transfusion?

I'm sorry...this ended up being very long...but I hope it helps.

First...I'm sorry that you are in pain and struggling so much. I have a 12 month old daughter and I completely understand how being a parent can be a struggle with this horrible condition and what an extra complex layer that is on top of everything else.

I have been there with the docs...getting bounced around and no relief from meds or procedures (the sympathetic block I got actually caused my CRPS to spread almost full body instead of just being in my ankle). The meds they had me on actually caused seratonin syndrome on top of the spread and I was a real mess for a while. I ended up wheel chair bound for almost a year before I finally found a doctor that I was able to develop a good relationship with who really wanted to help me (and it was a primary care doctor of all things). I hope that this new doctor you have is able to help you.

As someone who hasn't responded well to meds or procedures...my main focus has been on restoring FUNCTION versus dealing directly with the pain. This helped me a lot, as I found once I regained the function I was better able to cope with the pain and manage it. It's very easy to get caught up in the focus of the treatments to be on getting rid of the pain...but when you're like me and just just don't respond to meds and procedures...you get frustrated and the doctors get frustrated by their not being able to help or offer you anything. I was having a ton of different problems and once I got off all the meds we found out that some of those problems were caused by the meds. Then I was able to focus on what was preventing me from getting my life back and we tackled one problem at a time.

The first was that I was not sleeping...the pain was so horrible that I was lucky to get 15 minutes together of sleep and no more than 2-3 hours total a day. You can't function like that...and you certainly can't cope with the pain when you can't even rest. So I was given something that helped me get 3-6 hours of sleep a night...but that was 3-6 hours straight and it made a HUGE difference on how rested I was.

Then I was having problems with dizziness and blurry vision (caused by random spikes and drops in blood pressure...thank you malfunctioning sympathetic nervous system). We got me on clonidine patches. This solved this problem.

Then I went through at home physical therapy with a therapist that came to the house. This was SO wonderful. I lucked into a wonderful therapist who helped me slowly get out of the wheel chair and using a walker. It took about 6 months. She also was able to work with the doctor to get me a portable TENS unit...which helped with the pain...not a lot but enough to make a difference. I still use the walker (4 wheels with a seat) and this helps with balance and to keep the weight off my leg which means I can last longer walking. I also have balance issues...so it helps with that...and I always have a place to sit if I need it.

On my own...I was talking to everyone on here to get other ideas on how to help manage the pain. Some of the things that worked: heat patches, hot baths with epsom salts, and 4 F's diet (has REALLY reduced flares). I also got the tip from here to listen to soothing music with earbuds versus on a speaker...this helps me a lot with flares to manage the pain.

I was able to go back to work full-time in a job that has me on my feet all day...but I didn't stop there. I tried out a treatment I read about on here...tDCS...you can do a search and find the thread and there is LOADS of information on that thread about it. My doctor wrote me an Rx for the unit and I did the treatments on my own at home. Now...I didn't get much pain relief from it but here's what I did get: improved sleep (was able to get off the meds and now get a full 8 hours a night most nights), fewer flare ups, and flare ups that don't last as long (a day or two instead of a week or two). These changes have made a HUGE difference in my life and my ability to cope with and manage the pain.

I keep looking for things to help with the pain too. Someone on here recently wrote about a new device called Quell...and I have just received mine and am hoping it will help me with the pain. I keep hoping...but until I find that magical thing that can help me with the pain I am going to keep focused on managing the pain I have the best I can. Every little thing that helps with pain (no matter how small the relief is) is worth it. But it takes a lot of discipline to keep up with those things. For me...those things that help me with the pain the most are: using the walker, heat patches, hot baths with epsom salts, 4 Fs diet, and the TENS unit. Hopefully I can add this new Quell device to the list.

Sorry to ramble on...I don't know what all you have tried and I wanted to give as much information as possible. I've learned so much on here that has helped me from everyone's stories and advice so I just sort of throw it all out there and hope that at least something I have said helps. Let me know if you have any questions about anything.

I hope you get some relief soon and that this doctor is able to help you. Take care.

hi drief. i am sorry you have rsd and are having such a hard time finding the right pm dr to help manage your pain. if i were you i would keep searching for a pm dr who knows what rsd is so they can properly treat it. it sounds like the first dr didn't give you the right meds to help with the pain and the second dr didn't do right by you by taking all your pain meds away without giving you something else in its place. i am not a dr and maybe i am wrong but i've suffered with rsd for almost five years and have had the same pm dr who is awesome. but because each person with rsd reacts differently to different meds and procedures it took a little trial and error before we found the right meds and procedures to help manage my rsd pain. please don't give up hope that the right dr is out there and that they can help you manage your rsd pain better so you can enjoy your family again the way you used to. i hope you find a pm dr that can help you manage your rsd pain soon. i am sending healing thoughts and soft hugs your way.

Drief,

Maybe it was lucky for me that doctors gave me few prescriptions, because my agonizing pain forced me to try low dose naltrexone. LDN along with mirror therapy and pool therapy got me moving again.

It is unfortunate that I had to give up pool walking once the cooler weather set in, because my progress dramatically slowed since. I still cannot walk up or downstairs normally, but compared to not being mobile and screaming and whimpering all day these seem small issues that I firmly believe will improve with time. Catra mentioned focusing on function in her post and I know from personal experience she is right.

Is your CRPS warm or cold?