Hello!

Thanks to everyone who responded or read my introduction. jimking, I wanted to answer the questions you asked in your response. I am sorry your wife has had CRPS for so many years. Sounds like she has a great partner looking out for her! I live in NH and even the slightest changes weather wise makes me miserable. Of course sunshine makes me smile! I haven't found any particular foods to avoid for CRPS but am trying to pinpoint triggers for the Erythromelalgia and perhaps when found, they will help the CRPS too!

I've been through tremendous change over the last 7 years, at times getting some pain relief but neuropathic pain remains an hour to hour issue for me. As I mentioned previously, pain can change so quickly, even going across my kitchen floor. That aside, what has improved over the years is my ability to cope. When first diagnosed and experiencing such horrific pain, I thought many times, I can't do this, I can't cope with this, I don't want to cope with this. But...I, like many others, do get through each hour, each day. Days turned into weeks, weeks into months and before I knew it....years. I was pretty strong before CRPS but it demands attention like nothing I have ever faced. Coping with it allows me to try and focus on something else! Finally, and more important than anything else is that what I have learned from other folks with CRPS is far superior to anything I've learned from a medical professional.

Tough day today as the tops of my feet have recently become affected. My hot frostbite continues too with all the pain descriptors all here know about!

Here are some of the things I do to manage the pain and cope. These are only meant to share. I would love to hear from others about what you do to cope.

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Calmare (scrambler therapy) was, by far the BEST thing I have done in 7 years! It reduced my pain by 40% and I went into it at a level of 9/10.The only reason I stopped it was because of the Erythromelalgia diagnosis. Although pain remains, using meds that don't make me foggy has been a blessing. Stephen D'Amato, MD and his entire team in West Warwick, Rhode Island are superb! My having to stop Calmare is NOT the norm so please don't let my experience keep folks from looking into it!

Meditation and Hypnosis: nothing like putting myself on a beach in the Caribbean! I see a counselor who teaches folks how to hypnotize themselves. I never believed in meditation. I do now! It's calming effect is lovely.

Laughter: I can't go out much so folks come visit us at home and I still love to laugh! I may not be at the table eating with folks but I am nearby, sitting with my feet up, laughing and joining in as if I was. Laughing is a release and I do cry too. Crying is hard for me to do....don't know why...paying the therapist to work it out with me! I wasn't kidding about going to the basement and screaming. It feels awesome!

Reading and Music...there are a ton of books about pain out there but this one..."Managing Pain Before it Manages You" by Margaret Caudill, MD is excellent. I stay away from other books. I love biographies, thrillers oh, just about anything. I go to bed each night with headphones on and music playing. With music, I go to sleep much faster than without. It's not always lazy meditation music either. It's jazz, rock and roll, indie, instrumental, etc....last night it was Andrew Bird, simply awesome.

Counseling: I tried to tough it out the first year I was diagnosed....that was when I needed help the most! Like anyone dealing with serious illness, my whole life changed! Not being able to work was horrible as was accepting that I WAS sick. Initially, I was terrified that people, friends included would think I was making too much of a minor issue or faking. Once I started showing pictures of my feet to folks, they got it real fast and finally understood. Talking with a Counselor each week allows me to let the facade go, to get emotions out and discussed in hopes of alleviating some of the stress that builds each week. Each session I leave with a plan (not always executed) to focus what energy I do have into meaningful things.

Pool and exercise: Local YMCA, nothing structured. Very difficult to muster the energy to go with the knowledge that pain could flare from walking to car, car to place, etc.....

Meds: I've tried a lot, including Neurontin, Elavil, Nortriptyline, Lyrica, OxyContin, Oxycodone, Baclofen, Tramadol, etc....each worked for different periods of time but eventually either they stopped helping or I stopped them.

Current Meds: Butrans Patch (changed every 6 days and I put a RX. Lotion on prior to placing the patch as I am allergic to the adhesive) Nucynta, Cymbalta, Wellbutrin, Levothyroxine for hypothyroid and Diovan for BP. I know others mange pain without the use of narcotics but for me, they help get pain to a 5-6/10 baseline and help to reduce pain spikes that occur during the day. This is when the Nucynta works well. Less side effects too with Butrans and Nucynta; less groggy, don't feel high and less constipation! I also take a number of supplements.

That's it phew! Thanks for reading if you got this far. I hope in some small way, the things I do to cope will help someone else.

Thankful for finding you guys!

Deb