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

WOW!! Thank you for this!