Hi I am new to the group and have had RSD/CRPS since 2006. I started showing symptoms in 2003 but didn't get diagnosed. I was in a bad car accident in 2003 and crushed my leg and ankle. After 13 surgeries, not only did it not fix my ligaments and tendons but caused severe nerve pain after a neuroma was removed in my leg. I have heard so many times that there is nothing else that can be done. Tried acupuncture and he wouldn't touch me. My orthopaedic doctor doesn't want to do anymore surgery after I got the RSD diagnosis even though I still have tendon and ligament problems. Found a place that performed the Ketamine injections and they won't touch me either because I went so long misdiagnosed. It is the only place I have been able to find in North Carolina. I also was told to just learn to live with it. They try to put me on strong pain meds and all this nerve medication but cannot take because of side effects. I also have a 6-year-old who I don't want to be drugged up and miss out on watching him grow up. I suffer a lot just so I don't miss any of the important milestones. Now that RSD is being talked about more, I have realized that I don't have to just live with it. I can learn how to not make it worse and how to try to be as comfortable as I can. I have been reading up on some things but still getting very frustrated with trying to figure out what to do. I have realized sitting too long is bad but being up on my ankle isn't good either. Trying to find that happy medium has been the hardest thing. I have had a big increase in muscle spasms and it goes all the way up to my knee. I do have a spinal stimulator that has really helped but doesn't take all the pain away. Some days I can't walk at all and both of my legs hurt so bad I feel like I have the flu. My brother and my parents don't understand and don't want to get educated so the only support I have is my husband and son. I haven't been able to find anything about the types of food you should stay away from or drinks that can make it trigger the RSD. Any help would be greatly appreciated. I walk around with my pants leg rolled up to my knee as diabetic socks even hurt when they are on my leg and foot. I wear slip on shoes because I have to be able to take them off quickly when the lightning strikes start. I only get about 4 hours of sleep and pretty much just take every day at a time as I hate thinking I have to go through another day like this. I think if I knew more what to do that would help me at least feel like I was doing all I can to help ease the pain. Any suggestions would be great. I just want to be the best mom and wife I can with the rest of my days here on earth. I am in my early 40's and just not ready to give up yet. I wish my parents and brother would try to help me more instead of making things worse for me. I will never forget when my brother told me I just needed to suck it up and learn to live with it. It broke my heart. Thanks for listening to me and giving me any advice you may have.

Print this out and give it to them also get them to watch the video at the end and try the experiment.
* admin editing in the link for this* http://lifeinpain.org/wp-content/upl...ronic-pain.pdf
Please read my life with RSD/CRPS

https://www.youtube.com/watch?featur...9g&app=desktop

Very well put Kev!
Welcome Marci.
Unfortunately it is what it is. Sorry for the reason you are here but at least you now know where to come for kinship...

Hi Marci,

So sorry for your suffering. It can feel very lonely going through such tremendous difficulties. Most people can't get that making it through the next hour, five minutes etc. takes everything you've got sometimes. Everyone here can and someone will always throw out a lifeline.

I too am a 40's mom with lower extremity nerve injury, multiple surgeries etc. I have had to fight back from crutches, a scooter, then walker and cane. I understand how much work it takes. Nothing has been a magic bullet for me but many things have lead to small gains. I have found the pool to be a lifesaver. If you can get to one at a local Y or community center, I found that even when I was not mobile yet getting in the pool with a weight belt so that I could move my limbs freely went a long way towards easing spasm and maladjustment in various muscle groups, hips, back, etc. I will ride a stationary bike for only five minutes if that is all I do. Moving helps me feel stronger and less hopeless and five minutes is better than no minutes.

I have found even a single glass of wine to be a trigger for what I call "circulatory flares" that lead to burning/stinging in my foot. I avoid caffeine and foods that I have even the slightest sensitivity to, which includes the nightshade family, tomatoes, eggplant, peppers, etc. These trigger delayed immune response in some people.
As far as supplements, Vit D was found to be low by my neurologist, VERY common in women our age. Low D worsens chronic pain and nerve symptoms. I take 1000 iu daily now.
On drugs, PM just offered me blocks or opiates both of which I have been avoiding. Neurontin made me feel horrible. Neuro put me on nortryptiline and I have found it helps the stinging without killing my mood. I will take a low dose of tramadol if I am absolutely dying. My meds are only before bed so I can sleep better and don't feel too foggy. There may be options you haven't tried.
On doctors, I have found physical medicine/rehabilitation to be helpful. Their approach is different and they take care of lots of chronically disabled people with a goal of improving function. They can also provide some alternative treatments such as botox for muscle spasm or PRP for tendon/ligament problems that help some people.
Lastly, I pray. Maybe not PC to say but I do. Every day. For myself, for my family, for everyone one on this forum, for the strength to keep doing this and not lose myself in it. Hang in there, you are a dedicated mother with the heart of a Tiger and we all know Moms never give up.
Sending Healing Love, Littlepaw

The diet is a little outdated. Do not use artificial sweeteners. http://www.rsdrx.com/four_f's_diet.htm

You might want to look at a Paleo diet as well. http://www.marksdailyapple.com/#axzz3PrYKxdtn

Not every medication will react the same way, you essentially have to try a few weeks to a month to test them out. Low dose naltrexone seems promising without any major side effects. http://painsandiego.com/tag/low-dose-naltrexone/

Even if you ultimately decide to use opiates some day, realistically you won't be pain free, but you won't have to deal with the highest levels of pain.

My short list of things to try: Lidocaine patches, warm baths with Epsom salts, Epsom salt cream, swimming/pt in warm water, deep breathing/learning to meditate, and consider a consult with a pain psychologist.

There is no reason not to try Ketamine. You might want to check out one of the active CRPS Ketamine groups on Facebook.

I break up my activity throughout the day. If I can only manage 5 or 10 minutes of an activity, then I wait until my pain returns to baseline before restarting. This is MUCH harder with a young child of course. If you can afford it, I can not stress how much easier your life will be to get cleaning help in once or twice a month and buy a zoomba if you have carpet.

To all of you that left me such wonderful advice, I cannot thank you enough for all of the wonderful information. I really found it very helpful and have even printed out info to give to my family. I am so glad I have found such a wonderful place that I can ask questions and not feel so hopeless. Thanks from the bottom of my heart!!!!!!!

A reminder that anything that is copied from elsewhere needs a link, source and check for copyright please

The post by Kevscar comes from http://lifeinpain.org/wp-content/upl...ronic-pain.pdf

hi I was dignoised with rsd2014 I have been doing physical therapy..does your foot turn purple color when setting? I had achillis rupture no surgery dr.tell me that's what I have

Hi Susan,

Neuro says I have CRPS but not PM, my doctors can't agree. My foot turns purple, mottled or red and sometimes stings like hell when I put it down. I am 6 months post-op. My surgeon says autonomics sometimes stay offline a while after injury/surgery and "usually" improve but the limb has to be kept down for increased periods to re-train. I find light compression helpful, can't tolerate the strong stuff...

Littlepaw

WOW!! Thank you for this!