Hello!

I've posted here before about the amazing progress my then girlfriend (now fiancee) has been able to achieve with an intensive graded motor imagery program and some other supplements/strategies for addressing little things that flare her up. For the past month, she has had about 2-3 days of flares that have not been extreme (about a 4 on a scale of 10) and has been pain-free other than that. She has begun working from home and does yoga, push-ups, squats and leg lifts too to build her strength.

My question is this: it seems as though she's kind of turned a corner with this, but I want to be wary and prepared if her CRPS ever spontaneously returns or she gets injured in some way. An ounce of prevention is worth a pound of intervention and we have her on about 1,000 mg p/day of vitamin C based on journal articles recommending this strategy for prevention. Other than "don't get hurt", what other strategies would you have in place both to a) prevent recurrence of CRPS or b) quickly nip the process that might lead to CRPS in the bud if she gets reinjured.

Any input is much appreciated and I'm happy to explicate what we did with the GMI program if anyone is interested.

Thanks!

Hi CJA, first of all I would like to say how refreshing it is to hear of your sincere concern for you fiance's well being. Your proactive interest in her future health is admired.
I've had CRPS since 1996. Because it is known that you can get this disorder from a needle, I always ask for the senior person when getting a blood draw. I have them do the blood draw in my 'best' arm. I ask for a butterfly needle. It is a smaller, less invasive needle. The next time I go for a blood draw, I will ask them if a pediatric needle is possible and what is the difference from a butterfly needle and pediatric needls.
I told my dentist about crps and he researched it and always has me take antibiotic an hour before any procedure-even cleanings. Even the dental hygienist researched it. I also pay the extra $90 and have 'laughing gas' with any procedure. It relaxes me and I feel that is so important as a 'preventive' measure.
The vitamin C is so important and 1,000 is what I take. I also feel a high anti-oxident diet is important as general healthy way of eating is.
I personally keep a file on my health. I always ask for a copy of any tests, like blood work. I compare the results of blood work from one year to the next and see if numbers are going in the right direction. Inflammation is an issue with CRPS and that shows up in our blood work.
I personally use epson salt bath to reduce inflammation. You can buy it in larger quantities at Costco.
That is all I can think of at the moment-hope this helps. loretta

1. 1000 mg vitamin C daily (just increased from 500 mg)

2. Smallest needles possible for any injections (just had visco-supplementation on my knee and it flared my CRPS, but is settling down again)

3. Keep moving! My mantra is "use but don't over use"

4. I wrap my entire body in bubble wrap every morning after getting out of bed!

Thanks for your responses! She has a port, fortunately, so blood draws/injections aren't too much of a problem (she had blood drawn a few weeks ago and it made her pain flare a bit (like up to a 3-4 on a scale of 10) but only for the night and she was back down to 0 the next day.

Any other suggestions or thoughts are much appreciated!

CJA,

i'd love to hear the details of the GMI program....more details the better!! It might help someone else.

Hi Voner!

I posted a thread about it a while back... here is the link: http://neurotalk.psychcentral.com/sh...+motor+imagery

Let me know if you have any further questions!

We had some other strategies for addressing certain other triggers (weather changes/women's cycle issues). That I'd be happy to address either. The more that our experience could help others, the better!

I keep Lidoderm patches on hand and apply to any area that has even a slight injury. Since adapting this strategy, I no longer experience trauma induced spread. (When I experienced RSD pain in my jaw, teeth, and tongue, this was no help, of course.)

I keep a steroid pack on hand, incase of urgent need, if the above approach isn't enough. If I had a serious enough injury, I'd fight my insurance for a block and/or Ketamine--or just go out of pocket.

I regularly take baths with Epsom Salts. I severely limit my exposure to environments that cause me to flare. I break up my activities in small chunks and really listen to my body. I've adapted and don't do things in the same way that cause my pain to escalate.

If my back or neck become more problematic (there's always low level pain and swelling) then I see a massage therapist.

I just saw this thread and am curious as to what other strategies you have discovered for addressing triggers like weather changes and women's cycle issues.

I am so happy your fiancee has had great success with GMI. The research is quite convincing and I am likely going to give it a try. I've managed to keep my pain around the 4-5/10 level over the past several years with an electrical stimulation type treatment, but have significantly more pain in the winter and am looking for some other solutions.

For prevention, I try to swim regularly and have also been eating gluten free which I think has been helpful. Stress management is also key. I've found that whenever I have a flare-up, staying positive, keeping the limb moving, and seeking social support help keep the flare-up from escalating.

I definitely echo your point about stress reduction. Two days ago, my fiancee went out walking in the heat of the south for about 2-3 hours and developed a migraine. This made it hard for her to sleep and her body started playing the "RSD tune." Fortunately, she has read "Explain Pain" and was able to remain calm and remind herself that there was no threat to her tissue, which helped the pain remain below a 5. She got to sleep and was back to her old self by yesterday morning, so pain education is also helpful to avoid catastrophizing.

Weather strategies: I only came across a few things with weather changes online, but some suggest that the change in air concentration to positive ions directly before a storm is part of the cause of chronic pain inflammation for barometric changes (I bet it also has to do with just pressure as well). Anyway, these sources suggested a negative ion generator. I kicked the idea around for awhile until Hurricane Sandy which totally wiped out my fiancee. I rushed to get a negative ion generator and it helped her through the storm tremendously. Now, she doesn't get pain per se from storms but can feel a certain heaviness when a storm is approaching. We have an at home negative ion generator and a portable one that she can wear on her neck if she is out (she keeps it in her purse). It makes an immediate and noticeable difference for her.

As for the woman's cycle issues, this is an ongoing area of experimentation. When we told the doctor that her cycle was causing her issues, he suggested birth control to totally wipe out her cycle. We are both faithful Catholics, and, although it would have been permissible for her to use birth control for this purpose, she was hesitant. I did some research and found out that pain sensitivities are higher for many many woman around the end of the luteal phase and the beginning of menstruation for many conditions (fibromyalgia, migraines, etc.) It turns out that pain is linked with estrogen and that progesterone is a potent anti-inflammatory and analgesic hormone. At the end of the luteal phase, a woman's progesterone levels will sharply drop. In months past, although we did not know it at the time, we now believe this led to some of her most difficult flares. For example, when she had already started the GMI and was doing pretty well (basically pain free) one day the pain suddenly came back and hit her so hard she fell over. She was laid out for just a day and recovered quickly, but it was clearly related to her cycle. I did some research and found out that a lot of people are able to supplement Progesterone at appropriate times to minimize the severity of the drop in Progesterone at the end of the luteal phase. This last cycle, I had just found this out and so we were only able to try it for a few days up to the end of her luteal phase, but it made a world of difference (she still had a minor flare but pain only up to about a 4 and over by the time she got to sleep). For this regimen, it is recommended to supplement Progesterone cream directly into a woman's vagina twice a day starting at about ovulation and continuing until about 2 days before you expect your period to start (if your period starts, stop the Progesterone). We look forward to trying the full luteal phase coming up this cycle.

As for the cold, I'm not sure because she's in down south now, so the cold isn't an issue, but I'm interested in activated charcoal cloth. Obviously there isn't too much research on this, but it's supposed to be the same mechanism (negative ions) as the negative ion generator and its supposed to stimulate blood flow (she has cold type CRPS). We got some negative ion socks and I've worn them and I can definitely tell that something is going on down there (they are noticeably warmer than other socks). My fiancee has said that they feel good, but it'll have to get really cold before we know if its a good solution to that issue.

Any other suggestions are much appreciated!